tag:blogger.com,1999:blog-26219998645449715262024-03-05T17:35:23.082-05:00Amazing AmeliaAnonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.comBlogger28125tag:blogger.com,1999:blog-2621999864544971526.post-6333591004530050402018-03-25T23:33:00.001-04:002018-03-27T20:34:54.653-04:00More setbacks...ugh<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Thank you for your prayers over the last few days! Surgery took almost 7 hours on Friday and even though part of this was because the right leg was more complicated than the left, her surgeon thought it went very well! They removed the cast from her left leg and put a temporary knee immobilizer on it until we get the leg brace. </span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">However, as of tonight, we are still at the hospital. Just when we thought everything was going smoothly... Isn't that how it goes though? Satan just loves to trip us up. And, yes, sometimes I let him, ugh! Especially when it seems each surgery has had it's own drama with it. But, in the end, I know God is fighting these battles and He will win - I don't always see how, but I do know I have to be patient and TRUST Him...oh, so hard sometimes.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">So, Saturday afternoon Amelia's cast around her chest (because it's another spica cast) grew very tight - we're still not sure what happened - but she was in a lot of pain, even on a bunch of pain meds. It became unbearable, so they called in another orthopaedic surgeon right away and he went on to cut a circle out of the front middle, another triangle by her hip and slit open the side. Thankfully, that stopped the pressure sore on her hip that was causing a lot of pain. This also relieved enough pressure to get her through the night.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">In the meantime, Amelia's hemoglobin dropped, she developed a high fever and she still was not eating or drinking from before surgery Thursday night. But, the cast had been squeezing her belly so tight.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">This morning the on-call surgeon came in to see her and ended up removing even more of the cast in 2 spots that were still digging into her skin. He was also concerned that Amelia still wasn't taking in any nutrition or many fluids and still had a low hemoglobin.</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Tomorrow morning, Dr. K - her own doctor - will come in to re-evaluate all of this. And she finally started to eat tonight, so that's a great start!</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Thank you for faithfully lifting Amelia up in prayer - we know it's what gets us through one day at a time!</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">Please pray that...</span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i>- Dr. K will make the best decision on what to do about this cast. And, if it must stay on, that her skin would be protected from pressure sores or worse.</i></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i>- she'll continue to eat more!</i></span><br />
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<span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;"><i>- her hemoglobin will increase!</i></span><br />
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<i><span style="font-family: "arial";">- she won't fight taking her meds - she's convinced "it doesn't help!" And, she has 6 of them that she needs to be taking right now. </span></i><br />
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<i><span style="font-family: "helvetica neue" , "arial" , "helvetica" , sans-serif;">- that we can get her home! :</span>)</i><br />
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<span style="font-family: Arial;"><br /></span>Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-75091434083481175012018-03-20T15:44:00.001-04:002018-03-22T21:58:47.297-04:00It's that time again...<div>
<span style="font-family: "arial";">This Friday<span style="font-family: "arial" , "helvetica" , sans-serif;"> Amelia will be having surgery on her right leg. It's hard to think that we would have been getting the casts off of her legs around this time and have that behind us; it almost feels like we're back at square one. But, we trust that this was in God's plan, which is comforting, and that it's the best scenario for Amelia, which is most important! Even though disappointments can be hard to get past sometimes, God has reminded us not to stay there too long because He has given us so many reasons to give thanks! </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">The first couple weeks after her left leg repair were quite an adjustment, especially with the spica cast. She was very uncomfortable complaining of something poking her in the cast and she cried in pain. We still don't know what caused it, but assuming it was some stitches from the incision. There wasn't much we could do, so thankfully it didn't last more than a week. Transporting her was a challenge, so we stayed in for the most part. In order to buckle her in the car safely, it requires Amelia to lay down on the seat and be buckled in using a special harness. Once we got used to it, we got out a few times. She loved that! And, since then, she has been doing great! We brought her to church a few times too and that was so good for all of us. The kids sang her favorite song, "The Lord's Army," this past Sunday during the children's sermon - that was a highlight! </span><br />
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<i><span style="font-family: "arial" , "helvetica" , sans-serif;">We made a </span><span style="font-family: "arial" , "helvetica" , sans-serif;">visit to her pre</span><span style="font-family: "arial" , "helvetica" , sans-serif;">school class last week </span></i></div>
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<i><span style="font-family: "arial" , "helvetica" , sans-serif;">and she enjoyed it so much! </span></i><span style="font-family: "arial";"><i>What a bonus to be able </i></span></div>
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<span style="font-family: "arial";"><i>to play with her best friend too!</i></span></div>
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<i><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">We were finally able to visit Gigi. We hadn't </span></i><i><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">been able </span></i></div>
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<i><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">to </span></i><i><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">do that since Amelia's first surgery in January.</span><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"> </span></i></div>
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<i><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">Amelia and my grandma, at 101 years old, have a </span></i></div>
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<i><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">sweet bond </span></i><i><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">and I think this was good for the both of them!</span></i><i><span style="font-family: "arial"; font-size: x-small;"><br /></span></i></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; color: black; display: inline; float: none; font-family: "arial" , "helvetica" , sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">To recap, her surgeon will be doing similar work on Amelia's right leg as he did on the left leg. This involves moving her (congenitally) dislocated knee caps, loosen and tighten different parts of that area to help correct the contractures and get her knee straight - while avoiding damage to the nerves, realigning bones below her knee and shortening her femur using a bigger plate and more screws this time so that it doesn't come apart like it did in the left leg. </span></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: transparent; color: black; display: inline; float: none; font-family: "arial" , "helvetica" , sans-serif; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">While prepping for surgery, Dr. K plans to remove her left leg cast, get her fitted for a leg brace with her orthotist and then temporarily put that (left) leg in a knee immobilizer. </span></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="font-family: "arial" , "helvetica" , sans-serif;">With that, we covet your prayers again as we anticipate surg</span><span style="font-family: "arial" , "helvetica" , sans-serif;">ery on Friday...</span></span></div>
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<span style="background-color: transparent; color: black; display: inline; float: none; font-size: 16px; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><i><span style="font-family: "arial" , "helvetica" , sans-serif;">* Pray there are no surprises or extra complications with the right leg! <span style="background-color: transparent; color: black; display: inline; float: none; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Her right leg has always been more complicated, but Dr. K already knows what he's getting into after doing surgery on the left leg, so that helps!</span></span></i></span><br />
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<i><span style="font-family: "arial" , "helvetica" , sans-serif;">*Pray that her hemoglobin will be at normal levels going into surgery - we know there will again be considerable blood loss with the extent of this surgery, but praying she will come out on top of it all and not require a blood transfusion. <span style="background-color: transparent; color: black; display: inline; float: none; font-size: 16px; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Her levels were very critical after the first surgery, and she felt miserable, so not having to go through that again would be a great answer to prayer! </span>When she had her blood drawn a few weeks ago, her hemoglobin was rising, but still not within normal range. We have kept up the different supplements to increase that, so we hope and pray that will work!</span></i> </div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>* Pray that God would prepare Amelia and all those that will be part of her surgery from pre-op to post-op. Pray that everything will fall into place and the results will be successful!</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>* Pray that God would also prepare Nels and I for whatever lies ahead and for Elsie and Sam as we have another adjustment in our daily routines. </i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">We can not begin to express our gratitude for how much God is taking care of us through so many of you! From simply "How is Amelia doing?" or "We're praying for her/your family" to the very generous gifts...every one of these acts of thoughtfulness and great kindness have a special place in my heart and will never be forgotten! We can truly say, "...my cup overflows!" (Psalm 23:5)</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>"Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you.” Luke 6:38</i></span></div>
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<i><span style="font-family: "arial" , "helvetica" , sans-serif;">"I will sing<sup class="crossreference" data-cr="#cen-NIV-14081A" data-link="(<a href="#cen-NIV-14081A" title="See cross-reference A">A</a>)" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></sup> the <span class="small-caps" style="box-sizing: border-box; font-variant: small-caps;">Lord</span>’s praise, <span class="indent-1" style="background-color: transparent; box-sizing: border-box; color: black; font-variant: normal; font-weight: 400; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span class="text Ps-13-6" style="box-sizing: border-box; position: relative;">for He has been good to me." Psalm 13:6</span></span></span></i></div>
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<b><i><span style="font-family: "arial";"><span style="color: #444444;">"<span style="font-family: "arial" , "helvetica" , sans-serif;"><span class="text Eph-3-20" id="en-NIV-29272" style="background-color: transparent; box-sizing: border-box; font-variant: normal; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Now to Him who is able<sup class="crossreference" data-cr="#cen-NIV-29272A" data-link="(<a href="#cen-NIV-29272A" title="See cross-reference A">A</a>)" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></sup> to do immeasurably more than all we ask<sup class="crossreference" data-cr="#cen-NIV-29272B" data-link="(<a href="#cen-NIV-29272B" title="See cross-reference B">B</a>)" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></sup> or imagine, according to His power<sup class="crossreference" data-cr="#cen-NIV-29272C" data-link="(<a href="#cen-NIV-29272C" title="See cross-reference C">C</a>)" style="box-sizing: border-box; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></sup> that is at work within us,</span><span style="background-color: transparent; display: inline; float: none; font-variant: normal; letter-spacing: normal; line-height: 24px; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"> </span><span class="text Eph-3-21" id="en-NIV-29273" style="background-color: transparent; box-sizing: border-box; font-variant: normal; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever!" </span></span><span style="font-family: "arial" , "helvetica" , sans-serif;"><span class="text Eph-3-21" style="background-color: transparent; box-sizing: border-box; font-variant: normal; letter-spacing: normal; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;">Ephesians 3:20-21</span></span></span></span></i></b></div>
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<span class="text Eph-3-21" style="background-color: transparent; box-sizing: border-box; color: black; font-variant: normal; letter-spacing: normal; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span style="background-color: transparent; color: black; display: inline; float: none; font-variant: normal; letter-spacing: normal; text-align: left; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><span class="text Ps-13-6" id="en-NIV-14081" style="background-color: transparent; box-sizing: border-box; color: black; font-family: "arial"; font-size: small; font-style: normal; font-variant: normal; letter-spacing: normal; position: relative; text-align: left; text-decoration: none; text-indent: 0px; text-transform: none; white-space: normal; word-spacing: 0px;"><sup class="versenum" style="box-sizing: border-box; display: block; left: -44px; line-height: 22px; position: absolute; top: 0px; vertical-align: top;"><span style="font-size: small;"></span><span style="font-size: small;"></span><br /></sup></span></span></span></div>
<br />Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-85353294815879467462018-02-17T00:12:00.001-05:002018-02-18T09:11:20.366-05:00A different outcome...Well, some disappointing news today. Surgery on Amelia's right leg did not go as planned. When her surgeon removed the cast from her left leg that she had surgery on 5 weeks ago, he noticed that something wasn't right. An xray showed the plates in her femur moved and the screws were coming out. We're not sure of the cause for this, but her bones were not healing as expected at this point, but Amelia has had trouble healing at times for minor things because of her Loeys Dietz Syndrome. So, Dr K decided to just focus on repairing the left leg today. There is now a double plate and 6 screws instead of 4 to hopefully prevent this from happening again.<br />
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In 4 weeks we'll reevaluate, do an xray and if the the left leg is doing well, we'll schedule surgery on the right leg.<br />
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To make sure this doesn't happen again, Dr. K put Amelia in a spica cast - her left leg is casted and the cast then extends up around her chest to her arm pits to keep that leg from moving at all. <br />
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One of the first things Amelia said after waking up in recovery was that the "wrong" leg was casted, she was so disappointed. She is still trying to figure out why and is asking a lot of questions and of course, just wants to go home.<br />
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As I contemplate this tonight...I am thinking about all of you. Our only hope is found in our Savior, Jesus Christ, and when you pray to Him on our behalf, we know He is listening and cares about every single detail. Thank you for blessing us in this way! We truly appreciate your prayers! At this point, these are some of our specific prayer requests...<br />
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Please pray that healing goes well this time so we can move ahead with surgery on the right leg. In the meantime, pray that God would give Amelia's doctor guidance and wisdom in making the best decisions for her. He was surprised and very disappointed with this setback.<br />
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Pray for Amelia, that she will be able to accept her situation and thrive when she's just too young to understand why.<br />
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Pray for us as a family as we adjust to yet another casting hurdle; it's been a lot for Elsie and Sam to go though over the last 4 years. Pray that we would have patience, understanding and kindness with each other when we're feeling discouraged.<br />
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Thank God that He is in control and nothing surprises Him. We can trust He cares deeply about Amelia and will bring everything together in HIS time.<br />
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Our pastor saw Amelia before surgery and reminded us that "we are precious in His sight"...do not fear because we are His and He is always with us (Isaiah 43).Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-91587644012291793922018-02-15T23:22:00.003-05:002018-02-18T08:39:23.313-05:00Time for round 2....<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Tomorrow Amelia will be having surgery on her right leg. She had blood drawn a couple times since the last surgery and the most recent report showed a lot of improvement in her hemoglobin, so her blood management team gave the go-ahead for surgery #2. The plan is to approach it similar to the left leg, but her right leg is more complicated and has always been more stubborn, so please pray with us again for a successful surgery! They will also remove the cast from her left leg (in surgery) and her orthotist will be in there to fit her for a KFO (Knee Foot Orthosis). This is a leg brace that is like her AFOs (Ankle Foot Orthosis) that she has always worn, but will extend above the knee. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Elsie had a birthday party last weekend</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">and Amelia wanted to try out the </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">"photo booth" too.</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I always feel guilty that I am not good at keeping you up to date on Amelia's progress and I apologize for that. But, I am happy to report that she has been doing really well the last couple weeks. The first few weeks were tough, especially at night. And she fought her pain meds at home just as much as she did in the hospital, so that was always a struggle. Although, for the most part, her days were pretty good. She would have periods of being very uncomfortable or painful at times, but it went much better than I expected. Of course, she learned how to scoot around and get where she wanted to. Then, the second week in, she came down with a high fever. Assuming it was influenza, like what her older brother had the week before, we treated it as such. But, she started vomiting a lot and Sam never did. So, we called her surgeon in the morning and they had to see her to rule out an infection. They removed part of the cast and the incision looked good - so thankful!! They replaced that part of the cast and we went home with 2 different colors now. :) </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Now we face round 2. I'm more confident than I was before surgery #1, but yet more nervous knowing how difficult the left leg was and now with the more complicated leg...I'm not ready to go through it again, but at the same time, I'm ready to get it done! She told me tonight that she will have surgery tomorrow, "but I do NOT want surgery ever again." Unfortunately, this won't be the last, but we won't worry about that now. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I can't thank you enough for all the prayers and thoughtfulness during this time! I love to read all the emails, messages and texts - they're so encouraging and the thoughtfulness alone means so much to me - even when I'm not good at responding to those either. :( </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">I would also like to thank those who have brought us meals since Amelia's surgery. That is such a huge blessing to our family and helps us out so much! We have received so much support in other ways too and it means more than you will ever know! Amelia has also loved all the cards and thoughtful gifts too! I said it before, but to know that she means that much to others - I can't really even express how that touches my heart. Our dear friends from church gave us a gift before Amelia's last surgery and part of it was a devotional by Joni Eareckson Tada called "Pearls of Great Price." It couldn't have come at a more perfect time. Especially with the recent loss of my dad too. The devotion on February 12 was called, "A Soft Heart." It seems to capture how important this encouragement from friends and family is when you're on the receiving end. </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>"Focus on suffering is a dead end. Rationalizations and justifications do nothing but harden our hearts, making things worse. However, softness of heart comes when we <u>encourage one another</u> in our suffering - <u>spreading truth, imparting hope, bearing the burden, sharing the load, praying alongside, and offering a comfortable shoulder to cry on</u>." </i> </span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">"For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; <u>I will help you.</u>" Isaiah 41:13</span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Thank you for continuing to lift Amelia and our family up in prayer! Of course, we pray that everything will go well tomorrow with the surgery, but this wears on our family as a whole too. Please pray for understanding, peace and love for each other as we jump another hurdle together. </span></div>
Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-3364861566723450262018-01-13T16:53:00.000-05:002018-01-13T16:58:05.098-05:00Update post surgery...I know a lot of you have been waiting for an update; so sorry for the delay! Amelia's surgery went well! Praise the Lord!! However, her doctor only did the left leg because it did end up being very complicated - he said it was about as difficult as it could get, but he was ready for it! Her stats, including her blood pressure remained stable, so prayers answered there! She had a lot of nausea and vomitting after surgery until about mid morning today. She also started with a lot of pain in post-op already saying her cast hurt :( and he even put an epidural in to numb that area, and it's still in. But, she still has quite a bit of pain, so they added some more pain meds, so hopefully that will help! She's just very uncomfortable. No smiles today. :( She just begs us to take her home.<br />
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Amelia also lost a lot of blood during surgery and that's not helping anything either. They started iron supplements through IV last night and added some orally this morning, but her hemoglobin kept dropping down to a 5 (normal is 13-14). So, she is now getting a blood transfusion and we have already seen her perk up a bit.<br />
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Her heart is stable yet, but the cardiologist will continue to follow up on her here to make sure some of her abnormal stats are due to the blood loss. Her cardiologist is through U of M, so we see the one here. But, he's friends with Amelia's cardiologist so that's an answer to prayer!<br />
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Thank you for your continued prayers!! We all appreciate them!<br />
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A dear friend texted me this verse this morning and our pastor read it before Amelia's surgery yesterday. It was also read at her baptism 3 days after we thought we were going to lose her....God has been faithful! I needed to be reminded of that! "Hear my cry, Oh God, listen to my prayer: from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy." Psalm 61:1-3.Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com1tag:blogger.com,1999:blog-2621999864544971526.post-70568579107908740842018-01-11T10:39:00.000-05:002018-01-11T17:31:47.300-05:00Fast forward to January 9, 2018....<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: "arial" , "helvetica" , sans-serif;">Hello! It's been a while! Thankfully, I can say our Amazing Amelia has been thriving in many ways. Her personality just shines! She has been walking with special braces on her legs with and <u>without</u> her walker - which is amazing! She's so determined! She started swimming a lot this past summer, which she really enjoyed! She also started a dance class doing "creative movement" and that has been a joy to see. Elsie went with her to make sure she could be a part of the routines as much as possible - it's very sweet. She also started preschool this past fall and loves that too! Her teachers are wonderful and help her in any way they can. She is a very happy little girl and for that we are so grateful! </span></div>
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<span style="color: #741b47; font-family: "arial" , "helvetica" , sans-serif;"><i>"As for you, you meant evil against me, </i></span></div>
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<span style="color: #741b47; font-family: "arial" , "helvetica" , sans-serif;"><i>b</i></span><span style="color: #741b47; font-family: "arial" , "helvetica" , sans-serif;"><i>ut <sup class="crossreference" data-cr="#cen-ESV-1527A" data-link="(<a href="#cen-ESV-1527A" title="See cross-reference A">A</a>)"></sup>God meant it for good..." </i></span></div>
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<span style="color: #741b47; font-family: "arial" , "helvetica" , sans-serif;"><i>Genesis 50:20</i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i><span style="color: purple;"><br /></span></i><i><span style="color: purple; font-family: "arial" , "helvetica" , sans-serif;">"His pleasure is not in the strength of the horse, nor His delight in the legs of a man; The Lord delights in those who fear Him, who put their hope in his unfailing love."</span></i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i><span style="color: purple; font-family: "arial" , "helvetica" , sans-serif;">Psalm 147:10-11</span></i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">In the last post, Amelia was in the process of having both legs casted in an attempt to straighten her knees. That did not go well at all. Because of the position of Amelia's feet and knees, she could not tolerate the casts because sores had formed on her heels. With Loeys Dietz Syndrome, the skin is thinner, so these sores took a very long time to heal - the effects of them are still visible (over 2 years later). So, for that reason, another try at casting was out of the question. </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Since then Amelia has been wearing her AFOs (Ankle foot orthosis) and special braces made for her legs. The braces for her legs are similar to what the casts did, but it was up to us to slowly stretch her knees with a ratchet on the side. We could now take them off for baths or swimming - huge bonus!!</span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>We call this the "Mia Bobber." </i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>Amelia's sweet Uncle Mitch made this for her!</i></span></div>
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<i><span style="font-family: "arial";">As you can tell, she loves it!</span></i></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Amelia still wears these braces, but only for about 3-4 hours at a time. Then they become very uncomfortable for her. However, she also wears them at night too along with braces on her feet (Ponsettis). But, when she's not weight bearing (because she's laying down), they don't bother her as much. In the end, conventional treatment to straighten her knees has not been working and her orthopaedic surgeon made the decision to do surgery, which was last resort because of the risks involved. Surgery was always going to be necessary to move her dislocated knee caps, which formed way off to the outside of her knees, but this surgery will include much more. The risky part is loosening and tightening those parts in the back of her knee </span><i><span style="font-family: "arial" , "helvetica" , sans-serif;">just right</span></i><span style="font-family: "arial" , "helvetica" , sans-serif;"> (while also avoiding nerves) to assist in getting her knees straight. The bones below her knees are twisted, so those will have to be realigned. Then everything above her knee has to be adjusted as well. Her surgeon doesn't even know everything he will have to do until he gets in there, which could include the shortening of some bones. Because this surgery is so involved, he will only be operating on one leg at a time. The first surgery will be this Friday and the second one is scheduled for 2 weeks later. She'll be casted following both surgeries for about 8 weeks.</span><span style="font-family: "arial";"><br /></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">So, going into this Friday, we have a few specific prayer requests. </span><span style="font-family: "arial" , "helvetica" , sans-serif;">Please know we covet your prayers and do not take them for granted! </span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i><b>- There's a chance if everything goes very well, her surgeon might be able to do both legs at the same time; not likely, but possible!</b></i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i><b>- That Amelia's pain will be manageable...</b></i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i><b>- The incision will be big, so there could be a lot of blood loss which means a blood transfusion might be necessary, but hopefully not...</b></i></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i><b>- That she'll tolerate the casts and that her skin will be able to handle it...</b></i></span><br />
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<span style="font-family: "arial";"><b><i>- Amelia has a serious heart condition (aortic root dilation/aneurysm) and in addition to that, there was a concern about her blood pressure dipping really low during anesthesia for an MRI she had in November in preparation for this surgery. Please pray that her blood pressure stays manageable and her heart condition stable...</i></b></span><br />
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<b><i><span style="font-family: "arial";">- That the surgery will be a great success and she'll be able to walk! Without her leg braces would be a huge bonus! Amelia has her heart set on that. :)</span></i></b></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><i>February, 2017</i></span></td></tr>
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<span style="font-family: "arial";"><i>On December 9, we lost one of Amelia's most valuable supporters, my dad and Amelia's papa. Our last prayer request would be that you would keep Amelia, and our family, in your prayers as we grieve his loss and at the same time face this surgery for Amelia. We are so happy for him knowing he is finally at Home with his Heavenly Father, but we miss him so much - especially his love and support! My dad was also disabled and had braces as a child, major surgeries and pain in his legs (even until the end), so him and Amelia had a very special connection and I already miss his ability to relate and understand, unlike many of us. But, Amelia knows he is in heaven and confidently says "he can do anything now!" - and that's what's most important to her! Her papa would be proud of her - an inspiration she is and has always been to us! </i></span><span style="font-family: "arial";"><br /></span></div>
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<tr><td style="text-align: center;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiBz1x21MwHB2eq0CO3uz0brUJDtj41I-wzCrmvSbgBdixLeb9LAHsta7yWnC-e6E4yrhlchKMM4iGx_lyFBYXMVRoKNQ0UkqVNwunu54vtbKhLSmTpbfcmUAT2G1rsbaAv01d0zgZyq9Y/s200/P1260512.JPG" style="margin-left: auto; margin-right: auto;" width="200" /><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip6684cbXKyLzDJ1Mu0R9ZqjhjGGhTG8U-AFfV0QwINNZN-5GBPZ2lRlqaaDyNOSj4IeB2BiVmrd4linfXnOri3E5R7Le2gIoZw5PUwEibX01RNDrw9ZAxIZaJN9ZJgBekctD9oAGkbf8/s200/P1260515+%25282%2529.JPG" width="200" /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1t2rkIBJhNabJTchzfKyG3RDML7HN5EbV0_cckSngpoaPOIgp2OzkPbvos9zDNhT0e_CVqWq_DV0lqnCXmW84yoLaWLxNUE9zjfrgLsauN8jH0G54gQG4c3xkCHMEQ3yjIUeDrWN5Ywg/s1600/dad+and+mia.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="900" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1t2rkIBJhNabJTchzfKyG3RDML7HN5EbV0_cckSngpoaPOIgp2OzkPbvos9zDNhT0e_CVqWq_DV0lqnCXmW84yoLaWLxNUE9zjfrgLsauN8jH0G54gQG4c3xkCHMEQ3yjIUeDrWN5Ywg/s200/dad+and+mia.jpg" width="112" /></a></td></tr>
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<span style="font-family: "arial";">I would also like to take this opportunity to thank many who have been so supportive throughout the last 4 years and especially lately in light of Amelia's surgery. Our families and friends have been with us through this journey and continue to hold us up! Many have already surprised us with special gifts or offered support in different ways. None of it goes unnoticed and it means more to us than you will ever know! </span></div>
<span style="font-family: "arial";"><br /></span>
<span style="font-family: "arial";">We are also thankful for our church family who has always supported us in many different ways! We are so grateful that Amelia means so much to them! Another family that is important to us is our school family. They have provided and cared for Amelia in many ways as well. </span><span style="font-family: "arial";">Last night, some very special friends, that are also teachers at the kid's school, put together a prayer covering for Amelia and our family. It was beautiful and such an honor to be a part of. Thankful for a community of believers in Christ at church and school that know the power of prayer! </span><br />
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<span style="font-family: "arial";">Through all this love and support, I can feel God holding us up saying, "See Julie, I got this! If only you just trust Me! 'I am making all things new!' (Revelation 21:5)" <b><i>Pray that we would trust and rest in the assurance of His faithfulness! </i></b></span><span style="font-family: "arial";"><br /></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><i>My mom gave me this flip calendar many years ago and I still treasure it.</i></span></div>
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<span style="font-family: "arial";"><i>My Father's words for the 12th day of January are perfect.</i></span></div>
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<span style="font-family: "arial";">Songs are a great source of encouragement to me and these are just a few, of the many I love, that I have been listening to lately - listen to the words and I hope they encourage you too today! </span></div>
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<span style="font-family: "arial";"><b><a href="https://www.youtube.com/watch?v=mq59iE3MhXM&list=RDMMmq59iE3MhXM&index=1">Be Still My Soul - Kari Jobe</a></b></span></div>
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<span style="font-family: "arial";"><b><a href="https://www.youtube.com/watch?v=bXp644HkHu8">Miracle - Unspoken</a></b></span></div>
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<span style="font-family: "arial";"><b><a href="https://www.youtube.com/watch?v=YeLnMegXeLc&list=RDYeLnMegXeLc">Find You Here - Ellie Holcomb</a></b></span><br />
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Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-76037051468923462832015-10-21T09:19:00.002-04:002015-10-30T11:37:44.807-04:00Round 2 of casting<br />
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Four weeks ago, Amelia had both legs
casted to try and straighten her knees. Amelia did so good through almost the whole procedure that I knew
our prayers were being answered and I was very thankful for that! The
first tears came after they were on; everyone left the room and she
realized she couldn't move her legs. I felt so bad for her. The crying
didn't last long, but it was only the beginning of five long, tough days.
The first couple days are supposed to be the hardest, but then as she
gets used to them, it should get better. The first night was terrible.
Amelia woke up every 20 minutes with painful screams; it was
heartbreaking. I think we only got through that night because we were
assured it would get better... it didn't get better. Prior to this,
Amelia was taking 2 hour naps and sleeping through the night and now
she was barely sleeping at all. I had a feeling something was wrong right from the start.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy2ggyjEY1TCsAa7dUFjAVUzKBP6ino6tmRJpRYR5Nv_twrT9xmMA0FoVT_b5twC-53kWMG4mGYWdbZwTtYRtIhZ3AbJ8DdaNxpa_Hif6qITi-8InGziMFKKQdD73RmKz0O2oVYlBJwTs/s1600/IMAG1420.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="181" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgy2ggyjEY1TCsAa7dUFjAVUzKBP6ino6tmRJpRYR5Nv_twrT9xmMA0FoVT_b5twC-53kWMG4mGYWdbZwTtYRtIhZ3AbJ8DdaNxpa_Hif6qITi-8InGziMFKKQdD73RmKz0O2oVYlBJwTs/s320/IMAG1420.jpg" width="320" /></a></div>
On
Friday afternoon (day 2), we determined that Amelia might be having
muscle spasms. So, her doctor gave her a prescription and we were
looking forward to some relief for Amelia and us! However, she couldn't
keep it down. We tried everything we could to disguise it...nothing
worked. We were so disappointed. Over the weekend, Amelia seemed to be
getting used to the casts and getting around a little more, but she
still wasn't sleeping. The muscle spasms seemed to be less frequent, but worse when they did happen and there was nothing we could do
about it. By Monday, Amelia was still very restless at night and had
not taken any naps, so her doctor decided it was
time the casts came off. After getting them off, we discovered sores
on both of Amelia's heels. :( The plan was then to keep her doctor
updated on their healing and go from there. Amelia fell right back into
her routine of sleeping, which I was so thankful for! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyxHmjpJN4ZJ-UxunKGZ8ZkgbQV1pZCjmXA9Y9jUQ1RAru-dKUqOB7Ya1sr-BE59wgMhIvr86bGK85ozZUm5Jvs8pZIwKkSaHRvyWbBXDCVMdwjUzqeeXfqkNX2kvlf0XX-bhk5W1-8pk/s1600/IMAG1536+film+stock.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="242" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyxHmjpJN4ZJ-UxunKGZ8ZkgbQV1pZCjmXA9Y9jUQ1RAru-dKUqOB7Ya1sr-BE59wgMhIvr86bGK85ozZUm5Jvs8pZIwKkSaHRvyWbBXDCVMdwjUzqeeXfqkNX2kvlf0XX-bhk5W1-8pk/s320/IMAG1536+film+stock.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Sparkly hot pink, especially for her big sister, Elsie. :) </span></td></tr>
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Today,
Amelia is scheduled to have the casts back on. The sores are still
there, but mostly healed. The plan is to change the casts weekly for as long
as it takes to straighten her knees. However, this set will be on for 2 weeks. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmd9OgGkzEURmc15yLlCVagFov5rfgrVoF5rrdrDlDObfoDc2AwlRW4M8mWIdDGYfDEF8yflU7ExpXXvwp8O6b0yCZza1PS09_SI7c2om6xwkaUanDuyj9sQqmFuDXlPIybP8RifNt9Rs/s1600/IMAG2769+-+cross+process+cropped.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="313" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmd9OgGkzEURmc15yLlCVagFov5rfgrVoF5rrdrDlDObfoDc2AwlRW4M8mWIdDGYfDEF8yflU7ExpXXvwp8O6b0yCZza1PS09_SI7c2om6xwkaUanDuyj9sQqmFuDXlPIybP8RifNt9Rs/s320/IMAG2769+-+cross+process+cropped.jpg" width="320" /></a></td></tr>
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Thank you so much for your prayers for Amelia and the rest of us! Those five days were so hard on all of us that we need and so appreciate your prayers!<br />
<br />
Some specific prayer requests then would be...<br />
<br />
...that the process of getting the casts on goes smoothly. I'm a little
nervous how it will go this time around because of her bad experience. <br />
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...that her legs, feet and especially her heels are protected from irritation.<br />
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...that she will not get any muscles spasms or pain from the stretching.<br />
<br />
...that she is able to sleep comfortably with them on. <br />
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<i>"In the natural, many things are impossible. But in the supernatural realm with God, nothing is impossible. God wants us to believe for great things, make big plans, and expect Him to do things so great that we are left with our mouths hanging open in awe... We can be bold in our asking, and Ephesians 3:20 challenges us to ask for big things." - Joyce Meyer</i><br />
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<span style="color: #e06666;"><b><i><sup>"</sup></i></b></span><span class="text Eph-3-20" id="en-NIV-29272"><span style="color: #e06666;"><b><i>Now to Him <u>who is able</u> to do immeasurably more than all we ask or imagine, </i></b></span></span><span class="text Eph-3-20" id="en-NIV-29272"><span style="color: #e06666;"><b><i>according to his power that is at work within us..." </i></b></span></span></div>
<div style="text-align: center;">
<span class="text Eph-3-20" id="en-NIV-29272"><span style="color: #e06666;"><b><i>Ephesians 3:20</i></b></span></span></div>
<div style="text-align: center;">
<span class="text Eph-3-20" id="en-NIV-29272"><span style="color: #e06666;"><b><i> </i></b></span></span><span class="text Eph-3-20" id="en-NIV-29272"><span style="color: #e06666;"><b><i> </i></b></span></span></div>
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<span class="text Eph-3-20" id="en-NIV-29272"><span style="color: #e06666;"></span></span><span class="text Eph-3-20" id="en-NIV-29272"><span style="color: #e06666;"></span></span><span class="text Eph-3-20" id="en-NIV-29272"><span style="color: #e06666;"><b><i> </i></b></span></span></div>
<a href="https://www.youtube.com/watch?v=InsifiZxVXU">Jeremy Camp - Same Power</a><br />
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<br />Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com1tag:blogger.com,1999:blog-2621999864544971526.post-54391671450946524982015-09-16T07:15:00.004-04:002015-09-16T13:09:31.390-04:00The next step<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Today is a day I have been dreading for a while. This afternoon, Amelia will start casting on both of her legs. Not necessarily related to her Loeys Dietz Syndrome, Amelia was born with multiple contractures, at which time they diagnosed her with Arthrogryposis. This involved her hands, knees and feet. According to WebMd, "A contracture is a condition in which a
joint becomes permanently fixed in a bent (flexed) position, completely or partially restricting the movement of
the affected joint." (http://www.webmd.com/children/arthrogryposis-multiplex-congenita). In other words, Amelia's knees do not stretch out all the way, they are bent at a certain degree and will not stretch out beyond that point. While in therapy, the physical therapist was able to straighten it out more than it was at birth and we tried several different things to straighten them more, but with Arthrogryposis, if you don't keep working with those muscles, they will contract back to what they were orginally. So because we were never able to get them stretched out all the way, she wasn't able to walk and therefore use those muscles, so in the end it would be a losing battle; in fact, they have already contracted back since we stopped therapy earlier this summer. In addition to the contractures, an MRI in May showed that Amelia's knee caps were congenitally dislocated, which means they formed way off to the side of her knees. {This is explained in a little more detail in the last post.} So, Amelia's orthopedic surgeon had to come up with a different plan. </span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><br /></span>
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Since we're dealing with two different issues, the first step is to get the knees straight and then perform surgery to move the knee
caps and all the mechanics that go along with it. Amelia's
surgeon called me in June to let me know that he had been talking with
other doctors around the country and even brought up her case at a
"Complex Case Conference" because her separate issues are rare, but even
more rare is the combination of them. Her surgeon calls it a "unique
scenario," so unfortunately there is not a lot of experience in her
situation, if at all. So, casting is a start, but he is not convinced
it will work. However, straightening her knees during surgery makes the
already complicated surgery of realigning her knee caps even more
difficult, so we have to try. He anticipates the casting to take a few
months, but some of that depends on Amelia's cooperation and he's not
sure she's going to take it too well. That's what I'm worried about... That's where we need your prayers! Right now, I can only focus on how hard this could be on Amelia; I don't want to have to watch her struggle or suffer. But, if I'm able to put it into perspective, this is the first step we need to take to get our little girl walking. We had a break this summer from therapy and appointments, now it's time to look forward to a positive change. One step at a time never became more literal to me.</span><br />
<br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">I love it how God knows exactly what we need and reminds us of it in ways unknown when we least expect it. Yesterday Sam was home from school and while outside, he wanted to have a pretend picnic with treats. He got it all set up and then proudly announced, "Let's pray!" He started with the Lord's prayer and came to "Give us this day our daily bread as Amelia gets her casts on. Amen." I was stopped in my tracks...that's exactly what I needed to hear and it came from the lips of my little boy! When I reflect on this, my prayer is "Give us just what we need for today dear God, remind me to take this one day, one moment, even, at a time." What an awesome God!! </span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Here's a short video showing how Amelia gets around...with a little music in the background by Elsie. ;)</span><br />
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<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dy0GlHy6NGvZntRK6DfKvbXHKSZyjQMeUDLXi0xvNbqUDCe1jI9BqapHwd8V7IAHh5B5f8PEhGD3mE_m2rCdA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><br /></span>
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Would you please pray for us today? Some specific requests would be...</span><br />
<ul>
<li><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">that the casting will go smoothly and Amelia will feel little if any pain...</span></li>
<li><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">that her doctor's hands will be swift so that the procedure doesn't take too long for Amelia to be held down...</span></li>
<li><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">that Amelia will adjust well to them and pleasantly surprise us...</span></li>
<li><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">for Nels and I as we long to have her walking, but hate seeing her go through this process to get there. We hope and pray it doesn't dampen our little girl's spirit...</span></li>
<li><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Pray that it works so that we don't have to do surgery on this too. </span></li>
</ul>
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<b><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">THANK YOU!! </span></b></div>
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<tr><td style="text-align: center;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI42J7iYx_prf2bZa80oAYDCJWza2MC8ZJoI2SRCiEBTFN1HMVxx0x_sa-uoH2XhJmOkfphfGrs57oCo2R9Acxxer2XbfnQ7yVjLMrOP2cYvnSgMzQAu5y5Rev9phVN4DRjbqWo4qaIW8/s1600/P1340988+brighter+cloned.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI42J7iYx_prf2bZa80oAYDCJWza2MC8ZJoI2SRCiEBTFN1HMVxx0x_sa-uoH2XhJmOkfphfGrs57oCo2R9Acxxer2XbfnQ7yVjLMrOP2cYvnSgMzQAu5y5Rev9phVN4DRjbqWo4qaIW8/s320/P1340988+brighter+cloned.jpg" width="287" /></a></span></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Taken just this morning at my grandma's house</span></td></tr>
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<b><span style="color: magenta;"><i><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><br /></span></i></span></b>
<b><span style="color: magenta;"><i><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">"Hope deferred makes the heart sick, but a longing fulfilled is a tree of life." Proverbs 13:12</span></i></span></b><br />
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Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-72294451745093849002015-07-19T10:42:00.001-04:002015-07-19T10:42:48.696-04:00Take Heart!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLv9rY8mk7pt-y17ARWhZNETbdgPjFj0aYp56yiDQpCVLOaeIRvU1LrjE-_cgyh1QZQBuffioIG1AwEZHvlR7ihIVuCVWUs5dNt8-fd4VUzi1vN1CJYhdBOAssERomqYziITsW8QznfVg/s1600/IMAG7794.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="181" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLv9rY8mk7pt-y17ARWhZNETbdgPjFj0aYp56yiDQpCVLOaeIRvU1LrjE-_cgyh1QZQBuffioIG1AwEZHvlR7ihIVuCVWUs5dNt8-fd4VUzi1vN1CJYhdBOAssERomqYziITsW8QznfVg/s320/IMAG7794.jpg" width="320" /></a></div>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Earlier this month, we saw Amelia's cardiologist and I'm very happy to report that it was a great visit! She was all smiles when we got there, but when it was time for the EKG, she slowly realized what was going on and when she did, she wanted nothing to do with it. We made it through even though she wanted to keep pulling the cords off. We were worried the echocardiogram would not go well either, but she did great! I was so proud of her!</span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">A little re-cap first since I didn't blog about this...Amelia had a heart catherization at the University of Michigan in May. She was born with a PDA (</span><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span style="color: black; font-size: small;">Patent Ductus Arteriosus). Every baby is born with this, but under normal circumstances, it closes shortly after birth. Sometimes, as in Amelia's case, they don't close on their own and this is very common in kids with LDS (Loeys Dietz Syndrome)</span></span>. Since Amelia's aorta is already dilated, her cardiologist was hoping that by closing it, it would take some pressure off the aorta and stop it from growing. During the heart cath, her cardiologist used a coil to plug the hole so that blood would not flow through there anymore. </span><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"> </span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">When Dr. G discharged Amelia later that night from the hospital, he also mentioned that her pulmonary artery was dilated as well (in fact, he said it was 50% larger than normal). </span><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">At the time, I asked him what that meant, and he explained it to me, but said he would get a better picture of it at the echo (in July). I couldn't stop thinking about it though. At</span> the appointment he said that it is very common for any of Amelia's
vessels to dilate because of her LDS and the pulmonary artery
is one of them. When the aorta dilates, it has to be watched very closely because it can not handle that kind of growth and if it dissects, it can be fatal, but with the
pulmonary artery, it can dilate quite a bit before there's any cause for concern. That put me at ease. But, he said Amelia will have an MRI at least annually
to look at the arteries throughout her body to watch for any growth that is would require treatment. </span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">As far as the PDA, he explained that the coil he used to close it looks great! He said they worry about the coil protruding into the aorta or pulmonary artery, but hers is sitting perfectly in between the two! Praise the Lord!! He then gave us a run down of the aorta itself as well. It has grown a little, which we were hoping would stop with the PDA now closed, but he said that may take some time to kick in and make a difference. So, the slight growth did not concern him. We'll check it again in 4 months. For now, we can breath again and say many prayers of thanks! God has been so good to us! </span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Thank you <u>so much</u> for all your thoughts and prayers for Amelia and our family! It means so much to us! She continues to amaze us! </span></div>
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<span style="color: purple;"><i><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13</span></i></span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;"><span style="font-family: Times,"Times New Roman",serif;"><b>Patent Ductus Arteriosus</b> (PDA): "...persistent opening between two major blood vessels leading from the heart. The opening, called the ductus arteriosus, is a normal part of a baby's circulatory system before birth that usually closes shortly after birth. If it remains open, however, it's called a patent ductus arteriosus." Mayo Clinic definition</span></span><br />
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<span style="font-family: Georgia,"Times New Roman",serif;"><span style="font-family: Times,"Times New Roman",serif;"></span></span><span style="font-family: Times,"Times New Roman",serif;"><b>Aortic Dissection</b>:
"An aortic dissection is a serious condition in which the inner layer
of the aorta, the large blood vessel branching off the heart, tears.
Blood surges through the tear, causing the inner and middle layers of
the aorta to separate (dissect). If the blood-filled channel ruptures
through the outside aortic wall, aortic dissection is often fatal."
Mayo Clinic definition</span><br />
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<b>Loeys-Dietz syndrome (LDS)</b>: "...genetic disorder that affects the connective tissue in the body. Individuals with LDS exhibit a variety of medical features in the cardiovascular, musculoskeletal, skin and gastrointestinal systems. Information about the natural history and management of individuals with LDS continues to evolve."<span style="font-family: Georgia,"Times New Roman",serif;"><span style="font-family: Times,"Times New Roman",serif;"> </span></span><a href="http://loeysdietz.org/">loeysdietz.org</a></div>
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<br />Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com1tag:blogger.com,1999:blog-2621999864544971526.post-36218540491881088782015-06-07T15:13:00.001-04:002015-06-07T15:13:29.114-04:00Determined to walk no matter how long it takes!<br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">So often lately, I sit down to write an update and the words just aren't there. I type then delete, type and delete, and so on. And then I happened to go to a garage sale and someone recognized Amelia and told me they have been praying for her! I can't tell you how that felt! And since then, I have had a few other incidences similar to that one. So cool! But, they also had a lot of questions about how she was doing because they haven't seen any updates...and this was over a month ago...it's time! Because it's long overdue, I decided to do a few separate posts focusing on one area at a time so it's not too overwhelming. </span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">We (Amelia's therapists and I) just decided last week that we are going to take some time off of therapy at DeVos. Let me tell you...I was not jumping for joy as I thought I would. The weekly appointments were cumbersome at first, but before I knew it, it was just our routine...every Friday morning for almost 2 hours for 17 months. Amelia was just 2 weeks old when she saw her therapist for the first time... </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">One of our many firsts...therapy at DeVos</span></td></tr>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Last day of therapy...</span></td></tr>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">On May 5, Amelia had an MRI of her knees at U of M and we recently met with her orthopedic surgeon to go over the results. He broke the news to us that therapy alone will not help straighten Amelia's knees. This was a hard one for me to take because of all the work we put into it at therapy, through Mary Free Bed and at home. So, leaving therapy felt somewhat like something you work so hard for only to get knocked down at the end. Amelia's doctor was never convinced that therapy <u>alone</u> would do the trick (although her therapist was very hopeful), but he thought it was possible with some casting. The MRI showed that Amelia has congenital dislocation of the patellas (knee caps). The knee caps are attached to the tendon of the quadriceps which contract to straighten the knee and another muscle is attached to the base of the knee cap...all of this formed way off to the side of her legs. Therefore, moving them, and all the mechanics that go with it, will require major surgery, especially since this is how it formed from the beginning (congenital). In addition, her Loeys Dietz Syndrome and knee contractures further complicate things. "I'll be honest, she's a pretty complex case," is what we heard. So, with that being said, Amelia's doctor is consulting with different doctors around the country on the best way to approach this, one of them being whether or not to do casting before surgery. On that note, we asked him if we could wait until after summer to start this process, because with casting we would have to worry about them getting wet, they'll be hot, she won't be able to be mobile, etc., etc. He was fine with that because he said we really won't lose any ground by waiting just a few months. Phew... In the meantime, however, she just won't be walking. It didn't really bother me too much before to watch her with other kids close to her age when they're walking and she's walking on her knees trying to keep up because I was holding onto hope that walking was in the near future, but since this news, it has been much harder. I see a long road ahead. And, I know that a lot of it is perspective and it could be much worse, but this is where I'm at right now. It is so hard to see the desire and fight in her and know it's not something she will be able to accomplish on her own. More and more she tries standing with knees bent. It's my heart breaking for her....I am grieving what she will have to go through to get there. </span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihqtJEk0I8Sw4AcPT8un7hanTIOHw3tfmA5lxK9S9cUJyNZ3LPXYEezANYllZZraeM1DxGRdm1OgUbHVtpRyH3wb5ZjigLksmc4_c5JypxahCLRiB4KOOmFg_LE4scA5yXLz_a5Tsalmk/s1600/jeremiah+15.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihqtJEk0I8Sw4AcPT8un7hanTIOHw3tfmA5lxK9S9cUJyNZ3LPXYEezANYllZZraeM1DxGRdm1OgUbHVtpRyH3wb5ZjigLksmc4_c5JypxahCLRiB4KOOmFg_LE4scA5yXLz_a5Tsalmk/s200/jeremiah+15.jpg" width="152" /></a>So, as I wept in the early morning hours for my daughter, I was drawn to Jeremiah 1:5 and I know God had to literally take me to it. Jeremiah 1:5 says, "<span class="text Jer-1-5" id="en-NIV-18952">Before I formed you in the womb I knew you,</span><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Jer-1-5">before you were born I set you apart." I had to be reminded - in fact, it had to stare me in the face - that there is nothing I or anyone could have done differently to create my beautiful Amelia. She is exactly what God wants her to be and He has promised to follow through with His plans for her (Jeremiah 29:11). I have to believe this for myself, my family and mostly for her. God has showed me so many blessings I would have never known if it wasn't for her...He definitely set her apart. Another beautiful thing about my Lord is that, in my sadness, He reminded me of this in a very vivid way. On the last day of therapy, Sam had to come with me. He was supposed to stay at a friend's, but it didn't work out and it was a blessing in disguise. God played a scene in my mind from that day that I will never forget. Amelia was in the gait trainer at therapy and Sam was beside her hunched down with his hands on his knees cheering her on in such a tender way with every step. And let me tell you, she already adores her big brother, so the look on her face looking at him was also priceless. I never knew I would have to depend on my children this young, but I needed my little boy that day. I also realized that I would not have those moments without this trial. There have been many struggles over the last 17 months, but the joys that have made life sweeter than I ever thought possible, have topped them...thank you, God. </span></span></span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="indent-1"><span class="text Jer-1-5">While we wait for news on what, when and where, please pray that Amelia's doctor will have clear direction on what would be the best option for her. Pray for us as a family, that we continue to find joy in the struggles so that we can be a testament to God's amazing grace. </span></span></span><br />
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<span style="font-size: small;"><b><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="indent-1"><span class="text Jer-1-5"><span style="color: #0c343d;"><i>"His pleasure is not in the strength of the horse, nor His delight in the legs of a man; the Lord delights in those who fear Him, who put their hope in His unfailing love."</i></span></span></span></span></b></span></div>
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<span style="font-size: small;"><b><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="indent-1"><span class="text Jer-1-5"><span style="color: #0c343d;"><i>Psalm 147:10-11</i></span> </span></span></span></b></span></div>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="indent-1"><span class="text Jer-1-5">Thank you to everyone who has been so faithful in prayer even though I have been absent in my updates! Over the next few weeks I will be adding an update on Amelia's eyes and heart. It's looking like she will need surgery on her eyes this winter and we'll see her cardiologist the first week in July to have an echo and get a better idea on what he did and saw on her heart cath that was also done on May 5 at U of M. </span></span></span>Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-43631725768580176552014-12-15T23:09:00.000-05:002014-12-15T23:09:06.225-05:00Getting back to the heart!<span style="font-family: Arial,Helvetica,sans-serif;">It's that time again... On Wednesday, Amelia will be seeing her cardiologist and also having an echocardiogram to be sure her aorta has not grown. Please pray that we will not see any growth, that Amelia will tolerate the test well and that God will give her doctor wisdom regarding the results. I will be sure to update the blog after the appointment and what else has been going on these last couple months! In the meantime, as always, thank you for your prayers! </span><br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Arial,Helvetica,sans-serif;">Our little blossom!</span></td></tr>
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Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-78018560993789737732014-10-22T21:03:00.000-04:002014-10-22T21:03:04.291-04:00Our little go-getter!<div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">9 months!</span></td></tr>
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<span style="font-family: Arial,Helvetica,sans-serif;">First of all, thank you to all our awesome prayer warriors on behalf of our Amazing Amelia! We truly believe He hears each and every one of your prayers! A few weeks ago, Amelia had an MRI/MRA to get a closer look at her aorta dilation and the rest of the heart and also to look at the arteries from head to pelvis to rule out any other aneurysms. We had a rough start with some miscommunication over what was actually ordered and what needed to be done, but once the kinks got worked out, it went pretty well. Through it all, Amelia was a rockstar! We were so proud of her! She did have a reaction to the anesthesia with some nausea and vomiting, but they gave her some anti-nausea meds and she was good to go! We were already seeing smiles before we even got in the car. </span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;">We received a call just over a week later and they did not find any other aneurysms! Praise the Lord!! </span><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Arial,Helvetica,sans-serif;">They did find that Amelia has
tortuous vessels in her neck, however we were not surprised by this news since a
lot of LDS (Loeys Dietz Syndrome) patients have this. Basically, her vessels are twisty, where normally they're straight. But, as far as we
know it does not cause any issues, praying that's the case! </span>Her heart remains stable which is great news! Although, her cardiologist did increase the dosage on her meds because in talking with the cardiologists that were in on the MRI, they agreed that even though the dilation in her aorta remains stable, she's still not in the clear. <b>Pray that the increase does not cause any side effects and continues to do it's job! </b> </span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;">Right now, we continue to watch Amelia be her amazing, very determined self. She does not stop! She has been crawling for well over a month (with and without braces) and is now trying to pull herself up on everything! In fact, one of my favorite moments was when she crawled for her therapist for the first time...she was so excited, she started screaming! Oh, how that made my heart leap for joy. Amelia has some wonderful therapists that have a special bond with her; although, she's been seeing them every week since she was only 2 weeks old! I would say that makes them a pretty special part of this journey. <b>Thank God for these blessings! </b></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Arial,Helvetica,sans-serif;"><i><span style="color: purple;">"The
Lord is my strength and my shield; my heart trusts in Him, and I am
helped. My heart leaps for joy and I will give thanks to him in song."
Psalm 28:7</span></i></span><b> </b></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;">As part of her therapy, they continue to work on getting her knees to straighten out. She has certainly made progress, but they're still contracted (unable to straighten), with her right leg being a little tighter.<span style="font-family: Arial,Helvetica,sans-serif;"> So, now they'll be adding some
equipment/gear to help straighten them even more. Last week
she was fitted for a SPIO and knee immobilizers. The SPIO works on her trunk and the knee immobilizers gently stretch her knees. Her therapist is also
working on getting her into a "stander." That's basically what it is
and does...helps her stand. She has the SPIO (and knee immobilizers) on
in these pictures. </span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Arial,Helvetica,sans-serif;"></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;">Amelia is almost 10 months now and has exceeded our expectations! She doesn't even seem to be bothered by any of this and is just so happy! It's been so fun to watch her grow! We can't wait to see what else God has planned for her! </span><br />
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<span style="background-color: #eeeeee;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: blue;"><i><span style="font-size: small;"><span style="color: purple;">"We will shout for joy when you are victorious </span></span></i></span></span></span></div>
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<span style="background-color: #eeeeee;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="color: blue;"><i><span style="font-size: small;"><span style="color: purple;">and will lift up our banners in the name of our God." Psalm 20:5</span></span></i></span></span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><br /> </span></div>
<span style="font-family: Arial,Helvetica,sans-serif;"> THANK YOU again for all your prayers!!! I really mean it when I say it means so much! </span>Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-25275754848152297072014-08-02T15:37:00.001-04:002014-08-03T15:57:58.911-04:00Loeys Dietz Syndrome<span style="font-family: Arial,Helvetica,sans-serif;">An official word in our vocabulary now and used quite a bit these days...Loeys Dietz Syndrome. </span><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">About a week ago, we met with Amelia's genetics doctor and counselor to go over the results of the genetic testing and they confirmed Loeys Dietz Syndrome (LDS). We expected these results, but it was a reminder that this is a lifelong battle...it's not going to end here. LDS is a rare disorder that affects the connective tissue and there is no cure. Because we have connective tissue throughout our bodies, people with LDS can have many complications, among the most common being vascular, skeletal, allergy and gastrointestinal issues. Because of this, Amelia will be tested in the near future for scoliosis and have an MRA from the head to pelvis to identify arterial aneurysms. </span></span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">This past week we saw Amelia's hand surgeon and eye doctor. Her hand surgeon anticipates some surgery on her pinky when she's done growing. As for the eyes, we will follow up with the eye surgeon in 3 months to probably start patching and discuss possible surgery to correct an issue with coordination of her "v pattern." This means that when she looks up and/or to the side, she loses coordination. Please pray that surgery is not necessary. All surgeries make me nervous, but any surgery on the eyes makes me really nervous!</span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"> </span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Her weekly treatment continues on her hands, knees and feet. She still has to wear her braces around the clock, but I took them off so you could see how good her feet look! She loves to play with her feet when they're off, which I love to see, but makes me sad she can't do that all the time. Oh the things we take for granted. But, she doesn't even seem to notice. In fact, regardless if they're on or off, she's trying to crawl! </span></span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;">Despite these complications, we are very optimistic and hopeful for the future! Maybe it's the known vs. the unknown. I remember when I was pregnant with Amelia and the worry over the unknown would at times consume me to the point I could hardly breathe. Now I look at my beautiful baby girl who brings us so much joy, I know everything about her was meant to be and I am beyond thankful for our Amazing Amelia. Now we can move forward and hopefully provide Amelia with the best care possible in light of this diagnosis. </span><br />
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<span style="color: purple;"><i><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">"As far as I am concerned, God turned into good what
you meant for evil."<span style="mso-spacerun: yes;"> </span>Genesis 50:20</span></i></span></div>
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<br />
<span style="font-family: Arial,Helvetica,sans-serif;">As part of this journey, about a month ago, Nels, Amelia and I were <span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">able to attend a Loeys Dietz Syndrome Conference in Baltimore, Maryland. What a blessing that was! We learned more about this disorder, what to look for, and possibly expect in the future. I already feel more confident going into appointments with Amelia, knowing the posibilties. </span></span><br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBqArN5g1bj5tmY8eDaz-He0tRmFOO42tesaEILsJ4bvDPK7vARbNjMiaJpsLGLUWtJj25QFBMKXZeMcaAywPII2vG-yBkBW4sUZpcIhg2ktl0LvMNVPP5tlYSuhLV6xsRhWvIZWJJgk0/s1600/P1230252.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBqArN5g1bj5tmY8eDaz-He0tRmFOO42tesaEILsJ4bvDPK7vARbNjMiaJpsLGLUWtJj25QFBMKXZeMcaAywPII2vG-yBkBW4sUZpcIhg2ktl0LvMNVPP5tlYSuhLV6xsRhWvIZWJJgk0/s1600/P1230252.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A very special man, Dr. Dietz!</td><td class="tr-caption" style="text-align: center;"></td></tr>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">At the conference, we heard a panel of physicians speak that specialize in LDS, as it specifically relates to the vascular system, orthopedics, allergy and gastrointestinal concerns. We were especially excited to hear THE Dr. Dietz and THE Dr. Loeys speak. </span></span><br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrAM25ZA57apY1RpimlcJWuCQdZcgCbbqIv-sOlktdNjBPbhnZjN2nU-oRwLAPzjEgK4v_fuYbpDADfor0DD_RG6BbxYcbvJmBjtZc0ZwOhNv3QpwOrobQGuuHXqy06f86oFq9yTOtolc/s1600/P1230255.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrAM25ZA57apY1RpimlcJWuCQdZcgCbbqIv-sOlktdNjBPbhnZjN2nU-oRwLAPzjEgK4v_fuYbpDADfor0DD_RG6BbxYcbvJmBjtZc0ZwOhNv3QpwOrobQGuuHXqy06f86oFq9yTOtolc/s1600/P1230255.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Amelia was star struck too! :) </td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip6g5HdA5K8CBUQUqjqFVd5gIjPXZrJL5d04ADsTargvLEKBgAI9aD8MPGgYf1prIlvNPF804nmXcIBCUXnZXe9TfRP2fsRkfwByCVHhPxLBmKjDOrq_hYzQ1qSQXp5s5-Ryg7bwnACOg/s1600/P1230340.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEip6g5HdA5K8CBUQUqjqFVd5gIjPXZrJL5d04ADsTargvLEKBgAI9aD8MPGgYf1prIlvNPF804nmXcIBCUXnZXe9TfRP2fsRkfwByCVHhPxLBmKjDOrq_hYzQ1qSQXp5s5-Ryg7bwnACOg/s1600/P1230340.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dr. Loeys! He held her for a long time...I don't think he wanted to let her go.</td></tr>
</tbody></table>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Most importantly,
we made some wonderful connections with other parents that are on the
same journey, fighting the same fight! </span></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnv3uTkD4Pc_HmuKbXUZt6wxfOvVCfwcHmdL_2e7bNLgWYFHGcQHC16ob9Sim81EUV_VWYJjqD9_GViwqmFI5RxaXFKv4rX4gyZSzlBiOjrqyaVfySnJXw_X_SCpvKBdsMepudJG3ufBQ/s1600/P1230329+-+Copy.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnv3uTkD4Pc_HmuKbXUZt6wxfOvVCfwcHmdL_2e7bNLgWYFHGcQHC16ob9Sim81EUV_VWYJjqD9_GViwqmFI5RxaXFKv4rX4gyZSzlBiOjrqyaVfySnJXw_X_SCpvKBdsMepudJG3ufBQ/s1600/P1230329+-+Copy.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gretchen!</td></tr>
</tbody></table>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">When we first found out about LDS, I of course had so many questions, but most importantly I was concerned about the treatment options (or lack of) that we were being given related to Amelia's serious heart condition. Gretchen, the genetics counselor that works with Dr. Dietz at John Hopkins University, contacted me personally! This was our first connection to Dr. Dietz and his expertise, so we were very excited about this. I still remember that first conversation I had with her over the phone. She gave us the information we needed to pass on to our cardiologist...and what good information that was! It saved her life! Needless to say, we are very thankful for Gretchen and her part in our journey! </span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJiN9kCNbyn1923cD8X0bitcqTg0Sk6jgXR2UWWYY6CP11Q2hKRNz1QSqH4w8T-wAi67hk32MBrvb00AxkyeTb7QilB-9xAXh0jbm0etTy_7gbbol5eEQUsHAE0N-31OUWyuDiBFiywmg/s1600/P1230347.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJiN9kCNbyn1923cD8X0bitcqTg0Sk6jgXR2UWWYY6CP11Q2hKRNz1QSqH4w8T-wAi67hk32MBrvb00AxkyeTb7QilB-9xAXh0jbm0etTy_7gbbol5eEQUsHAE0N-31OUWyuDiBFiywmg/s1600/P1230347.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">In a previous post, I had quoted Mo Jurgens. Mo's mom, Kate, wrote a memoir about Mo's life and the many obstacles they
faced as a family through a lot of unknowns. I have been reading this book, as it's been a great resource to me not only as a mom, but as we take this journey with our own daughter. Mo </span></span><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">was diagnosed with Loeys Dietz Syndrome at age 9. She has had 27 surgeries in her young life. She will be </span></span><span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">starting her sophomore year in college for nursing this fall. What a great nurse she will be! I was so excited to meet them both...I have to say, I was star struck! :) </span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8ZcF41UDUnnmfGCDWp-Wm1mkwjmbzqqV2S1IXuhzrKSKW2rl6B4uTXWD2rWB97SHuDaQ6eKq6bIMVOnm-0xnmbEcll2LKT2XlX00s7DD-7R1McXlOk8DCuBZroxCA8inaBBO4QYA_IUQ/s1600/P1230241+-+Copy.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8ZcF41UDUnnmfGCDWp-Wm1mkwjmbzqqV2S1IXuhzrKSKW2rl6B4uTXWD2rWB97SHuDaQ6eKq6bIMVOnm-0xnmbEcll2LKT2XlX00s7DD-7R1McXlOk8DCuBZroxCA8inaBBO4QYA_IUQ/s1600/P1230241+-+Copy.JPG" height="248" width="320" /></a></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, not only
did I get to meet both of them, but before I really had a chance to
get to know her, Kate took Amelia from me during one of the sessions so
that I could listen, so cool! </span></span><span style="font-family: Arial, Helvetica, sans-serif;">I
could only smile and thank God for stringing together every little
detail; oh how He knew I would need that connection as a mom. Not to
mention many other moms that were instant friends! Amelia was the youngest at the conference, so these moms have been where we are at right now and were quick to make sure I knew they were there for me if I needed them. Exactly what I needed! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoDICj2XJa0Qfc2Y8ovH7MF0wnoPB45F9s3qGmREjYe49aEcgL5k0-DqRARALtFztsJobPY2kXUMCiICDtmh9XhptGkwkcMr7fJ3JMhaBwFFt96nRTiERo56Z8DrPNT7myCsDjfkFSvbM/s1600/P1230209.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoDICj2XJa0Qfc2Y8ovH7MF0wnoPB45F9s3qGmREjYe49aEcgL5k0-DqRARALtFztsJobPY2kXUMCiICDtmh9XhptGkwkcMr7fJ3JMhaBwFFt96nRTiERo56Z8DrPNT7myCsDjfkFSvbM/s1600/P1230209.JPG" height="240" width="320" /></a><span style="font-family: Arial, Helvetica, sans-serif;">The weekend went by so
fast...I feel like I'm still taking it in. Then I realize, Amelia is
only 7 months old and I think back to all we've been through in this short time; life and death were thrown at us within months of each
other and here we are now, watching our baby girl roll around, smile,
talk and giggle! Sometimes I feel like I'm just watching from
the outside. I can only say I have so very
much to be thankful for! God is without a doubt using Amelia to teach
me so much! </span></span><i><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span style="color: purple;"> </span></span></i></div>
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<i><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span style="color: purple;">"Don't worry about anything; instead, pray about
everything!<span style="mso-spacerun: yes;"> </span>Tell God what you need, and
thank him for <u>all</u> He has done.<span style="mso-spacerun: yes;"> </span>If
you do this, you will experience God's Peace, which is <u>far more wonderful </u>than
the human mind can understand.<span style="mso-spacerun: yes;"> </span>His Peace
will guard your hearts and minds as you live in Christ Jesus."<span style="mso-spacerun: yes;"> </span>Phillipians 4:6-7</span></span></i></div>
<br />
<span style="font-family: Arial, Helvetica, sans-serif;">If you would like to learn more about LDS, please visit <a href="http://www.loeysdietz.org/">www.loeysdietz.org</a><i><span style="color: #741b47;"><span style="background-color: #f3f3f3;">. </span></span></i>In fact, as you pray for Amelia and our family, pray for the foundation, as well, as they continue to give so much of themselves in educating others about LDS, fostering research and supporting those affected by it. I was reminded again this week of how rare this is. Out of the many doctors and medical staff that have been involved in Amelia's care, her cardiologist has been the only one that knew anything about it. THANK YOU again and again for your prayers and support! </span>Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com1tag:blogger.com,1999:blog-2621999864544971526.post-88150947182059205072014-06-11T22:47:00.001-04:002014-06-23T21:59:32.260-04:00More good news!<span style="font-family: Arial, Helvetica, sans-serif;">Feeling pretty tired tonight, but couldn't go to bed without sharing the good reports we received today. Amelia's aortic root is still dilated and has not decreased in size, but it is not growing either and considering Amelia has almost doubled in size from her birth weight, this is great news! Amelia even had some big smiles for her doctor! However, he wanted to be sure we understood it is still very large, but we're hopeful the medication will continue to keep it stable until she's able to have surgery, hopefully when she's older (like in her 20s even). At this point, he will keep increasing the Losartan every 2-3 weeks until we reach a dose that's recommended for patients with Loeys Dietz Syndrome. She will also continue on the beta blocker. We will see him again in a couple months and do another echocardiogram of her heart at that time. Pray the good news continues! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Tomorrow Amelia has her weekly physical and occupational therapy; pray she tolerates it well!</span><br />
<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>
<span style="font-family: Arial, Helvetica, sans-serif;">After we got home from the appointment today and Nels went back to work, the kids were playing downstairs, Amelia and I danced to "Praise the Lord" by the Imperials. If you get a chance to listen to this song, it's an oldie, but goodie! I love to just sing it at the top of my lungs because Satan is not going to win this one! </span><br />
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<div class="copy-paste-block">
<div id="songLyricsDiv-outer" style="text-align: center;">
<div class="songLyricsV14 iComment-text" id="songLyricsDiv" style="left: 0px; position: relative;">
When you're up against a struggle that shatters all your dreams<br />
And your hopes have been cruelly crushed by Satan's manifested schemes<br />
And you feel the urge within you to submit to earthly fears<br />
Don't let the faith you're standing in, seem to disappear<br />
<br />
Praise the Lord, He can work through those who praise Him<br />
Praise the Lord, for our God inhabits praise<br />
Praise the Lord, for the chains that seems to bind you<br />
Serve only to remind you that they drop powerless behind you<br />
When you praise Him<br />
<br />
Now Satan is a liar and he wants to make us think, that we are paupers<br />
When he knows himself we're children of the King<br />
So lift up the mighty shield of faith for the battle must be won<br />
<b>We know that Jesus Christ has risen so the work's already done!</b></div>
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Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com1tag:blogger.com,1999:blog-2621999864544971526.post-50099153967159048832014-06-10T23:31:00.001-04:002014-06-10T23:32:19.644-04:00Psalm 118:24<span style="font-family: Arial, Helvetica, sans-serif;"> <span style="color: purple;"><i>"This is the day the Lord has made; let us rejoice and be glad in it!" Psalm 118:24</i></span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">We have so much to be thankful for! God has certainly blessed us with an energetic, joy-filled baby girl! 2 months ago, I was just hoping I would have her and God has far exceeded my expectations! </span><span style="font-family: Arial, Helvetica, sans-serif;">This morning we had a visit from one of Amelia's physical therapists</span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-family: Arial, Helvetica, sans-serif;"> and it was a very encouraging visit. She used words like, "...determined,
strong, so alert, vocal, sharp, cognitively right on, firing off with
vigor!" Wow, I just smiled. Praise the Lord for our
Amazing Amelia! </span> To think about the day we brought her home
from the hospital and wondering what would come of all the negatives we were left with...I was most concerned about her brain. God has answered so many prayers from so many of you! THANK YOU!!! Never ever doubt He hears each one of those prayers! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">So, since my last post...</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">We sought out another opinion from another cardiologist. We were referred to him by a friend of a friend...another answer to prayer! He not only worked for many years in a hospital that saw patients with Loeys Dietz Syndrome (LDS), he has spoken with Dr. Dietz a couple times. This was so reassuring! It has been difficult to find any doctors that have even heard of LDS. After the first visit, we felt confident he was really doing what's best for Amelia considering her condition. So, tomorrow we have a follow up appointment with him and an echocardiogram to check the size of the aortic root. <b>Pray for another reassuring visit with good test results! </b></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">At that appointment I also plan to discuss a couple things with her doctor that seem somewhat minor, but could be related to the medicine she's taking. She still has trouble sleeping...this is not good....mommy is very tired! :) She also does not travel well at all. She never has, but I was hoping she would have grown out of it by now or get used to it. She cries so hard at least half of the trip there and back...with at least one appointment a week, sometimes more, this has been tough. And, of course, all I can think about is her heart. I know even the small details matter to God, so please<b> pray that Amelia starts getting more sleep at night and starts to also tolerate the car better. </b></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">In addition, Amelia's cardiologist also feels it is important to have Elsie and Sam tested to rule out an aortic root dilation. Since Amelia's heart condition is congenital, he said it's possible they could have the same thing. So, they will both be having echocardiograms to rule this out. I am not really worried about this, but it's still a possibility, so please<b> pray their hearts are perfectly healthy! And, also pray that they (especially Sam) tolerate the testing well. </b></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">In ending, my niece made a picture for Amelia for her baptism and I just love to look at it. Addison, God is answering your prayers! </span><br />
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Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-50642010393126255612014-05-04T23:39:00.005-04:002014-05-06T17:29:26.546-04:004 months and counting!The last few days as I hold Amelia, I wonder where the time has gone! Although, the first few months of her little life were pretty full of appointments. This month will be a lighter one with only the weekly therapy and one appointment to check her braces. It's nice to be able to just be home and not have to get out of the house. Amelia loves to just lay on the ground under her gym and reach for toys. It's so fun to see her develop and work to use her hands; she has certainly come a long way in only 4 months. She's almost rolling over...yes, braces and all! She's still very happy most of the time, in fact just yesterday I was sure I heard her laugh. I tried to get her to do it again, but she just stared at me like, "what are you doing?" :) So, I'm sure it's right around the corner and I can't wait!<br />
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Thank you for your continued prayers! Just to update you on where we are at... The eye doctor found some things with Amelia's eyes, but he wasn't concerned because he thinks she will probably grow out of it, as most newborns do. Although, we have heard that before....trying to stay positive. He did confirm a couple of characteristics that Amelia has that line up with the Loeys Dietz Syndrome. All in all, it was a good visit.<br />
<br />
The braces are still fitting pretty good. She still has a sore on her left foot by her big toe that looks like it hurts, but it doesn't seem to bother her. We went to Mary Free Bed last week and they added some different padding to that spot to see if it will heal. We'll just keep watching it and hopefully it only gets better...poor peanut!<br />
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Amelia's blood pressures continue to do good, so at this point, we will see the cardiologist again mid-June and have another echocardiogram at that time to see if the Losartan and beta blocker combination is working to stabilize the growth of her aorta!<br />
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Last week Amelia saw her pediatrician. He was concerned about her weight because she had not gained very much since her 2 month check-up. Amelia's cardiologist also wants to be aware of any health concerns when they come up, so we let him know and so we had an appointment to check her weight and blood pressure again on Thursday. Amelia's appointment with her pediatrician was on Tuesday and she weighed 11 lbs., 10 oz. When we were at cardiology on Thursday, she weighed 12 lbs., 3.4 oz. I think that's a pretty good weight gain in 2 days!! Way to go, Amelia! Praise the Lord!! However, we will continue to check her weight weekly until her pediatrician is satisfied with her progress. <br />
<br />
Amelia also seems to be extra restless at night these days. She has
never really been able to get the sleep thing down (who can blame her,
she hasn't really been home enough to get into a routine), but lately it
seems to be worse. She was up 5 times the other night, that was almost
every hour. Thankfully, Nels is very good at getting up with her so
that I'm not totally exhausted the next day, but then he has to go to
work and I don't want him sleep deprived on the job either! And, I am not
about to "let her cry" because I know that increases the aorta dilation. I
know we can't protect her from getting upset, but I am going to do my
best to keep her from getting to that point if I can help it. Please pray that we can get into a better sleep routine. Amelia's doctor is
aware of that too and he said it could very well be related to her
eating habits, so we have to get her to eat more than 3-4 ounces at a
time if we can. Pray that she will have a desire to eat more in one
setting.<br />
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This week Amelia will have physical and occupational therapy on Thursday. The last couple weeks did not go well at therapy. She just did not want to be there. Pray this week goes better!<br />
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I was thinking this week about the last post I wrote... I want you to know that "Because He Lives," you can face tomorrow too! That song was not only for me, but for anyone facing a struggle in their life. It could be physical, emotional, spiritual, whatever it is, God cares down to the smallest detail. This week, especially, I will have a dear friend on my mind and on my heart. Her little boy was due to arrive on May 14, 2014; only 3 days after Mother's Day. On March 14, Charlie passed away. This would have been their first child that they waited many years for. It's so very hard to know why this happened, but Charlie's parents believe in a God who has a great plan for their lives! Please lift them up in prayer these next couple weeks as they face some tough days... <br />
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<span class="woj"><span style="color: purple;"><i>“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33</i></span></span><br />
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<span class="woj"><span style="color: purple;"><span style="color: black;">Charlie's mom shared a devotional with me that has been so appropriate, even as we face different trials, it's simply called HOPE. In one section of the book, the author, who lost a daughter and then a son at only 6 months of age, talks about God's presence and refers to Psalm 139:7-10. I just want to share with you how amazing God's Word is! This Psalm, that has, from the beginning, become so near and dear to me, speaks to me in every single aspect of this journey. Looking at it in this way reminds me that Jesus is and will be there with us each step of the way. From the joy of a new baby forming in my womb (vs. 13-16), to worry over her health and well being (vs. 1-6, and 23) and now a lot of questions and concern about her future, verses 7-10.</span></span></span><br />
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<span style="color: purple;"><i><span class="text Ps-139-7" id="en-NIV-16247">Where can I go from your Spirit?</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-139-7">Where can I flee from your presence?</span></span><span class="text Ps-139-8" id="en-NIV-16248"><sup class="versenum"> </sup></span></i></span><br />
<span style="color: purple;"><i><span class="text Ps-139-8" id="en-NIV-16248"><sup class="versenum"> </sup>If I go up to the heavens, you are there;</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-139-8">if I make my bed in the depths, you are there.</span></span><span class="text Ps-139-9" id="en-NIV-16249"><sup class="versenum"> </sup></span></i></span><br />
<span style="color: purple;"><i><span class="text Ps-139-9" id="en-NIV-16249"><sup class="versenum"> </sup>If I rise on the wings of the dawn,</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-139-9">if I settle on the far side of the sea,</span></span><span class="text Ps-139-10" id="en-NIV-16250"><sup class="versenum"> </sup></span></i></span><br />
<span style="color: purple;"><i><span class="text Ps-139-10" id="en-NIV-16250"><sup class="versenum"> </sup>even there your hand will guide me,</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-139-10">your right hand will hold me fast...</span></span></i></span><br />
<span class="woj"><span style="color: purple;"><span style="color: black;"> </span><i> </i></span></span>Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-37048087667275609242014-04-22T00:42:00.001-04:002014-04-22T09:38:38.756-04:00Because He Lives, I can face tomorrow!<div class="separator" style="clear: both; text-align: center;">
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I hope you had a very blessed Easter! Easter...the very reason for our Hope! It was a beautiful Easter service on a beautiful day! The weather was so fitting...just gorgeous! We sang "Because He Lives;" it brought me to tears... Yes, truly, because He lives, I CAN face tomorrow and all the tomorrows after that. Praise the Lord for that!! I would have nothing if I didn't have Jesus! Then there's a verse in the song about how sweet it is to hold a newborn baby as I held Amelia sleeping in my arms....I copied the song from the songbook below. I absolutely love the hymns because each verse has such meaning that gets me every time! After the service, I was asked if they played that song just for me...I certainly do believe God has every single detail of our lives planned out, and that was one of them. :)<br />
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<tr><td class="tr-caption" style="text-align: center;">Sweet sisters...</td></tr>
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Amelia's blood pressure was good last Wednesday. Down more from last time, so I hope that means the medication is working! We will get another echocardiogram in a couple months to see if it's actually working to stop the growth of the aorta. I'm already nervous for that appointment. I told a friend of mine today that during the day it's not so bad, I go about doing what I need to do, trying to spend time with all the kids...but, then all of a sudden it will hit me and to think that it's all riding on this medication alone, it makes me sick to my stomach. That's when I have to remind myself that it's useless to worry about it. <br />
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<span style="color: purple;"><span style="background-color: #eeeeee;"><i>"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:34</i></span></span></div>
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Today Amelia starts physical therapy on her legs and will continue occupational therapy on her hands and upper body. For those of you that don't know (I didn't at first either), physical therapists work with lower extremities and occupational therapists work with upper extremities. <br />
<br />
On Wednesday, we have another full day. We were referred to an opthamologist. With different syndromes, there can be issues with the eyes, so the sooner we find that out, the better. We don't anticipate any issues since Loeys Dietz Syndrome typically does not have problems with the eyes, where Marfan Syndrome does. But, since we will not have the genetic test results back yet for a while, we need to be sure. A little bit about that... They are testing Amelia for a panel of 12 different syndromes (3 of them being the 3 types of LDS) where a lot of the characteristics overlap, but then there's a few characteristics that are only found in certain syndromes that are not found in others. Amelia has at least 3 characteristics of Loeys Dietz type 1 that are not found in the other syndromes. However, in the meantime, we have to cover all our bases, which I am okay with. <b>Pray her eyes check out good! </b></div>
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She will also be seeing Dr. K on Wednesday to check on her braces. She already has some padding and a silicone spot for some pressure sores that she was getting and those were getting better, but now there's a couple spots that have shown up again. Hopefully it will be an easy fix, otherwise, they said they will have to make a mold to her feet if they don't get better....not exactly sure what that all entails, but it reminds me a little too much of the casting, and for Amelia's sake, I'm not ready to go back there yet. <b>Pray for an easy fix! </b></div>
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Lastly, we'll stop by her cardiologist to get another blood pressure check and if all is good, they'll up the dose again. <b> Praying we can increase the dose and get closer to our goal! </b></div>
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Again, thank you for all the prayers and all kinds of support! I would love to list all the ways we have been blessed, but I don't want to accidentally leave someone out, so please know that however you have helped us, you are truly a blessing and we thank God for each of you often! However, I can say that all the many cards we have received (from that first ultrasound) and still receive are awesome! I have each one sitting in a box by the chair where I do my devotions and quite often I will start just going through them again and I am so encouraged! Someday (probably in the very distant future) I would love to make a book of all the cards, messages, emails and texts I have received along with the many pictures I have taken along this journey! God has been good! </div>
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Leaving you with my one of my very favorite Easter hymns ~ "He Lives!" I serve a risen Savior! I so enjoyed singing this on Sunday. "You ask me how I know He lives? He lives within my heart!" </div>
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Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com2tag:blogger.com,1999:blog-2621999864544971526.post-45082026604336844692014-04-13T23:09:00.002-04:002014-04-14T22:13:18.104-04:00One day at a time...<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Amelia is over 3 months old already! She is so fun right now. She loves to smile and coo and now figured out how to roll her tongue, blow bubbles and even roll over! I just love it! She is a very happy baby...for the most part! :)</span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">The week before last was a busy one with at least one appointment every day, complete with a short hospital stay. On Monday, occupational therapy again went very well. Tuesday, we met with another cardiologist. Wednesday she got her new braces on. Thursday she was in the hospital all day for observation of her blood pressure after starting a new medication. Friday we had to get her braces adjusted because she was getting some pressure sores on her feet and ankles. Last week we had therapy, a braces check and blood pressure check. Each appointment went fairly well; some of the nurses even got some smiles from Amelia! </span><br />
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<tr><td class="tr-caption" style="text-align: center;">Taking a much needed break from casting and braces!</td></tr>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Where we are at....well, the second opinion was not too different from the first; however, we felt it was a little less urgent and a little more optimistic. Amelia is now on a couple medications that they hope will stop the aorta
from growing; a beta blocker and blood pressure med, Losartan. Studies
have shown that using Losartan in patients with Loeys Dietz Syndrome
(LDS) have given them good results, although, according to Dr. J, these studies are still going on. Losartan is a blood pressure medicine they use for adults, so it had to be formulated for Amelia's size. To be sure she can tolerate it, each week they will increase the dose (a total of 4 times) and at the end of that week, check her blood pressure to be sure it's where they want it to be. Last week, after being on it for a week, her blood pressure was really good. Surgery is still not an option at this point, so basically, we really need this need medication to work! <b>Pray that the blood pressures continue to do well and that this medication will be our miracle! </b></span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Last night was Amelia's first decent night of sleep since she was put on the medication and had her braces fitted over a week ago. She was waking up every 2 hours or less and very restless during the day too. There are some side effects to the medications (most likely the beta blocker) that could be hard on her or it could be her braces. <b>Please pray that she adjusts well to both the medicine and braces. Also, that if she is experiencing side effects from the medicine that they will resolve quickly! </b></span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">It's difficult to really say how I am feeling. I'm still not satisfied with the answers we're getting, but maybe because I have a hard time believing or even just accepting that medication alone will save my baby girl. That's where your prayers come in! I do believe God can work through whatever means He has to, so then I have to trust Him too. <b>Pray God gives us wisdom to make the right decisions on behalf of Amelia and also for the doctors, that they will have wisdom and do their very best in giving her the care she needs. </b></span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Following the appointment with the cardiologist on Tuesday, as we walked out the same doors we've walked through to our car at least 20 times in the last 3 months, I thought to myself...I am already a better person for having known my sweet Amelia. God has truly blessed me with an amazing gift that I would have never asked for; the reward in it is more than I could have ever imagined or can even explain. Each day with her is another day to cherish. My other 2 beautiful children have also blessed me in countless ways, but I was so focused on being a good mom and teaching them, now I feel like Amelia is teaching me....not only to be a better mom, but a better everything! And for that...I am thankful.</span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><i><span style="color: #741b47;">"<span class="text Rom-4-18" id="en-NIV-28041">Against all hope, Abraham in <u>hope</u> believed and so became the father of many nations... he did not waver through unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, <u>being fully persuaded that God had power to do what He had promised</u>." </span></span></i><span class="text Rom-4-18" id="en-NIV-28041"><i><span style="color: #741b47;">Romans 8:18, 20, 21</span></i></span></span></div>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">THANK YOU for your continued prayers!!! </span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">P.S. I have heard from some that they haven't been able to post comments on the blog, let me know if you have a problem with it, because I love reading your comments!! :) </span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Also, </span><span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">I want to apologize to all of our faithful blog followers and prayer warriors; I meant to update this much sooner! </span>Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com1tag:blogger.com,1999:blog-2621999864544971526.post-46699516817374168072014-03-28T20:21:00.001-04:002014-08-03T16:42:14.951-04:00Every day is a gift...<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">"I want you to understand that this is serious...this is very dangerous to her...this could take her..." These are the words we heard from Amelia's cardiologist just a week ago. They still play over and over in my mind. Amelia had a follow-up with her cardiologist because they noticed an increase in her aorta at 2 weeks old ("aortic root dilation"). This time it had grown drastically at an increase that he did not expect to see; so he had to prepare us for the worst. He said they could do surgery and you could replace this part of the aorta, but then the rest of the aorta is affected, and therefore it wasn't an option. The plan then was to put her on medication and hope for the best, but we have to know that it may not work that well. Then it was question and answer time... I just wanted to get out of there as soon as possible. But to where? Where can you run from news like that? We asked some questions we never thought we'd be asking... How long does she have? Is all this treatment on her hands, legs, feet worth it? Is this condition painful for her? How will we know if something is wrong? We don't know how long she has; high rate of mortality in the first 5 years...yes, the treatment is worth it....no, it's not painful for her..."for a baby with an aortic tear, it's going to take her and you're not going to know it." </span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">After the doctor walked out of the room, Nels was holding Amelia and staring at her through sobs... I looked out over the city and it was getting busy; it was 5:00 so the workday was done. I had just heard that I could wake up tomorrow and my daughter could be gone...how could it be?! Her life has hardly begun! But, life goes on... Through many sobs and tears, we finally made our way home. </span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Today... this last week has been a whirlwind. On Friday of last week, they wanted to admit Amelia to regulate the new blood pressure med they were putting her on, and then they decided to back off a little and first start her on a "beta blocker." In layman's terms, I understand this will loosen up her vessels so that there's not so much pressure on the aorta. The plan is to eventually start her on the blood pressure med (formulated for her size, but used frequently in adults). Studies have shown that using this particular medication has given them some good results with patients diagnosed with Loeys Dietz Syndrome (LDS). LDS has become a common term around here in the last few weeks. Along with a few other characteristics, this heart issue leads them to believe Amelia has a connective tissue disorder, most likely LDS. The blood work has been sent in and we will wait anywhere from 12-24 weeks before we know if this is, in fact, what Amelia has. Therefore, at this point, they are treating her as such.</span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">On Tuesday, we are going to get a second opinion from another cardiologist in the same office. In fact, I was also able to connect with a genetics counselor from John Hopkins this week who works closely with <u>the</u> Dr. Dietz. She gave me a phone number for the cardiologist to be able to contact Dr. Dietz directly! Our Great God at work!! </span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">This week Amelia had occupational therapy on her hands and it went so well. Nels and I were both very encouraged. On Wednesday, Amelia had her last cast put on and was fitted for braces. That appointment also went very well. We will be revisiting the casts at another time, but for now, we are going to celebrate when that last cast comes off! The bad news was that the braces will be on around the clock (except for baths) indefinitely. The right foot is giving them a lot of trouble and until she has surgery on that foot (tendon transfer) she will need to be in braces. Typically, they do not like to perform that surgery until the patient is about 5 years old, but in Amelia's case they will most likely do it a little bit sooner. According to Dr. K., the tendons and bones have to grow in able to work together to accept each other. However, my perspective has certainly changed. We'll deal with braces as long as we have our little girl! That's what matters most!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Removing the casts...just relaxing! I'd say we're getting used to the routine! :) </td></tr>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">To end the toughest week in our lives, we celebrated Amelia's baptism this past Sunday...this was not by accident. It was an absolutely beautiful service and without a doubt, I could feel God's presence. As I looked out over the congregation, all I saw was love and care and support. Then seeing our friends and family praising God with us for our precious Amelia meant more to me than words could ever express! I realized at that moment...this is what it is all about. God's plan for our lives could be drastically different than we ever planned or imagined; I NEVER thought from the ultrasound at 20 weeks that this journey would take us here, but I have come to believe (even when it's so hard) that God has a good plan. Along each turn I have thought to myself, will I really be able to keep saying this if things take a turn for the worse? I have to believe I will. That doesn't mean it's easy and that's why I also believe this would not be possible without SO MANY lifting us up in prayer! A line from one of my favorite songs right now, Oceans by Hillsong United, "Where feet may fail and fear surrounds me, You've never failed and You won't start now..." </span><br />
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<tr><td class="tr-caption" style="text-align: center;">My dear blessings!!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">"We want to do a silly one!" </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">So thankful to be celebrating with Gigi! Great Grandma is 97 <u>years</u> old and Amelia almost 97 <u>days</u> old<span class="indent-1">! God is good!</span></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;">Leaving you with a couple thoughts. My mother-in-law introduced me to this book<i>, Mo - A Loeys Dietz Syndrome Memoir. </i>This book was written by Kate Jurgens, whose daughter is 17 years old with LDS. This is a quote from her book... </span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><i><br /></i></span>
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><i>"So many activity restrictions...had lead to one of Maureen's deepest pleasure discoveries - reading. <b>Amelia</b> Earhart captured her vibrant imagination and inquisitive mind. 'Mom, <b>Amelia</b> was so brave to learn how to fly. She went ahead and did things people thought she could never do. I don't know if I could be that brave.'" </i></span><br />
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Psalm 61 has now become very special to us; it was the scripture at Amelia's baptism... </span><br />
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><b>Hear my cry, O God;<span class="indent-1"><span class="text Ps-61-1"> </span></span></b></span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><b><span class="indent-1"><span class="text Ps-61-1">listen to my prayer</span></span></b></span></div>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><b><span class="text Ps-61-2" id="en-NIV-14822"><sup class="versenum">2 </sup>From the ends of the earth I call to you,</span></b></span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><b><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-61-2">I call as my heart grows faint;</span></span></b></span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><b><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-61-2">lead me to the rock that is higher than I.</span></span></b></span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="text Ps-61-3" id="en-NIV-14823"><sup class="versenum">3 </sup>For you have been my refuge,</span></span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-61-3">a strong tower against the foe.</span></span></span></div>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="text Ps-61-4" id="en-NIV-14824"><sup class="versenum">4 </sup>I long to dwell in your tent forever</span></span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-61-4">and take refuge in the shelter of your wings.<sup class="footnote" value="[<a href="#fen-NIV-14824b" title="See footnote b">b</a>]">[<a href="http://www.biblegateway.com/passage/?search=Psalm+61#fen-NIV-14824b" title="See footnote b">b</a>]</sup></span></span></span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="text Ps-61-5" id="en-NIV-14825"><sup class="versenum">5 </sup>For you, God, have heard my vows;</span></span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><b><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-61-5">you have given me the heritage of those who fear your name.</span></span></b></span></div>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="text Ps-61-6" id="en-NIV-14826"><sup class="versenum">6 </sup>Increase the days of the king’s life,</span></span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-61-6">his years for many generations.</span></span></span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="text Ps-61-7" id="en-NIV-14827"><sup class="versenum">7 </sup>May he be enthroned in God’s presence forever;</span></span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-61-7">appoint your love and faithfulness to protect him.<span class="text Ps-61-8" id="en-NIV-14828"><sup class="versenum"> </sup></span></span></span></span><br />
<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="indent-1"><span class="text Ps-61-7"><span class="text Ps-61-8" id="en-NIV-14828"><sup class="versenum">8 </sup><b>Then I will ever sing in praise of your name</b></span></span></span></span></div>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><b><span class="indent-1"><span class="text Ps-61-7"><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-61-8">and fulfill my vows day after day.</span></span></span></span></b></span></div>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span class="indent-1">Lead me to the Rock that is higher than I, dear God...</span></span></div>
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<span class="indent-1"><a href="http://www.youtube.com/watch?v=1m_sWJQm2fs">Oceans, by Hillsong United</a></span><br />
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Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com2tag:blogger.com,1999:blog-2621999864544971526.post-60594846165552162232014-03-18T23:07:00.001-04:002014-04-14T21:59:25.312-04:00What is arthrogryposis? <div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">A lot of you have inquired about Amelia's condition and so I have been promising to deliver.. Also, an update on how she's doing. </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">As many of you know, Amelia has arthrogryposis, which I also mentioned in an earlier posting. The Wikipedia defines arthrogryposis as...</span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">"<b>Arthrogryposis multiplex congenita</b> (AMC), or simply <b>arthrogryposis</b>,
describes congenital joint contractures in two or more areas of the
body. It derives its name from Greek, literally meaning "curving of
joints" (<i>arthron</i>, "joint"; <i>grȳpōsis</i>, late Latin form of late Greek <i>grūpōsis</i>, "hooking").<sup class="reference" id="cite_ref-1"><a href="http://en.wikipedia.org/wiki/Arthrogryposis#cite_note-1">[1]</a></sup>
Children born with one or more joint contractures have abnormal
fibrosis of the muscle tissue causing muscle shortening, and therefore
are unable to do passive extension and flexion in the affected joint or
joints. Arthrogryposis is a not a diagnosis but a clinical finding. So this
disease is often accompanied with other syndromes or diseases." (</span><a href="http://en.wikipedia.org/wiki/Arthrogryposis"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">http://en.wikipedia.org/wiki/Arthrogryposis</span></a><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">)</span><br />
<br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Amelia has distal arthrogryposis which means she has multiple contractures of her distal joints; her hands, knees and feet. Her hands are clenched; sometimes they're really tight, meaning it's very difficult, if at all, to get one of my fingers in her grip. Then sometimes they're a little more loose and I can slide my thumb in there for her to grab onto. Her knees are bent at about a 100 degree angle. And, then of course her feet; a severe atypical case of club feet. It's hard for Amelia's doctors to tell us how long and what kind of treatment Amelia will continue to require because each step depends on how she responds to the different treatments. However, they can tell us that there will be some form of treatment of the affected joints until she's done growing (or longer) because if you don't keep up with it, the joints will contract back into their original position. Just out of curiosity, I looked up the average age a girl stops growing which is 18 years old. </span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">We have fallen into a routine now of weekly (sometimes more) visits to the doctor and are starting to realize and accept that Amelia will require treatment for a long time. </span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"></span>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Tomorrow, Amelia will get cast #9 put on. This last cast was on 2 weeks following her tenotomy and will be changed tomorrow. Dr. K said the number of casts following this one will be determined on, again, how she responded to the surgery and casting this time around. However, for future reference he did tell us that following this casting, she will be in braces around the clock and also start physical therapy on her knees. Once they get a feel for what they can achieve with therapy, they will then do casting of her knees. </span>
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Her hands... We are scheduled to follow up with Amelia's hand surgeon next week. We met with him shortly after she was born. He believes she will respond well to treatment, however he did confirm that because Amelia's hands will never fully open like ours, she will just function different than us, but she'll still be able to use them...that was good to hear. So, in making sure that's the case, he said at this point, he does not suggest we get very aggressive with therapy and splinting. He said splinting and exercises are fine, but whomever is doing it, has to really know what they're doing. Relaying this to Amelia's therapist and then fine tuning her treatment was a little bit of a bump in the road, but I think we're on the right path now with a therapist who has specifically worked with arthrogryposis. This was an answer to prayer! Right now, we have to do 2 different stretches with Amelia at least a couple times a day, more if possible. She also has splints now for both hands. We got one fitted last week and since she was not happy about it, we had to get the other one done yesterday. These splints are for "resting" only, because while she sleeps (or rests), that is when her hands are more loose so we're able to get the most stretch out of them. The resting is difficult because Amelia doesn't really like to sleep for us during the day, so hopefully the nights will be enough.</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Tried to sneak them on while she was falling asleep...without success :) </td></tr>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">On Thursday, we have an appointment with Amelia's cardiologist. At 2 weeks old, he saw Amelia for a follow up from a diagnosis in the hospital of PDA (</span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Patent Ductus Arteriosus). At that time, he saw some dilated vessels in the heart that concerned him. So, this appointment is important to us. We hope to get some clarification on her condition and hopefully those vessels are measuring back to a normal size. </span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">However,
at her recent 2 month check up with her pediatrician, he still heard a
heart murmur, which lessens that possibility. But, we know that if this
is God's will, anything is possible, so we hold onto that hope and if
the news isn't what we want to hear, we will still trust Him. </span> </span><br />
<br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Amelia will also be getting some blood drawn this week. I just received a call last week that our insurance company authorized genetic testing for a connective tissue disorder that could be serious, so her doctors have decided to go ahead with testing. Results will take 6 weeks to come back. Since Amelia was seen by her genetics doctor at only 1 week old before any treatment, they were able to point out some characteristics that line up with her arthrogryposis to make this syndrome a very real possibility. Another reason her appointment with the cardiologist is an important one.</span><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"></span><br />
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">The days are going by so fast... Not knowing what lies ahead for Amelia can weigh heavy on our minds, but I have also been able to put that worry aside so that I don't miss being able to take in this time with my little Amelia, and Elsie and Sam for that matter. I will never have these moments of smiles and coos again once she passes that stage. This again is only achieved through prayer, I believe! I'm usually the worrier to the point it consumes me at times. So, when I stop to think about that, it's pretty amazing! </span><br />
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<span style="font-family: Arial;">Please continue to pray that: </span><br />
<span style="font-family: Arial;"><br /></span>
<span style="font-family: Arial;"><i>Amelia will continue to respond well to treatments and tolerate her splints...</i></span><br />
<span style="font-family: Arial;"><i>That the appointment with the cardiologist will be a positive one with some clarification...</i></span><br />
<span style="font-family: Arial;"><i>Elsie and Sam will continue to adjust well...</i></span><br />
<span style="font-family: Arial;"><i>God will give us perseverance each week...</i></span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;"><span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So,
with that, I would like to share with you another verse that a good
friend of my mom's, who battled cancer,
shared with me. God's promises...</span> </span><br />
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">"I WILL LEAD the blind by ways they have not known, along unfamiliar paths I WILL GUIDE THEM; I WILL TURN the darkness into LIGHT before them and MAKE THE ROUGH PLACES SMOOTH. These are the things I WILL DO; I WILL NOT FORSAKE THEM." Isaiah 42:16</span></div>
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<span style="font-family: Arial;"></span><br />
<span style="font-family: Arial;">Thank you again for continuing to support us in so many ways!! We have been SO blessed! In fact, this Sunday our Amelia will be baptized! We are so excited to officially commit her to Christ and in realizing she is His first, we will do our best, with His help, to raise her to love Jesus with all her heart! If you would like to join us, you are welcome to come! If you need the details, leave me a comment and I'll be in touch! </span><br />
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<span style="font-family: Arial; font-size: large;"><b><span style="font-size: small;">"I have called you by name; you are Mine." Isaiah 43:1</span> </b></span></div>
Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com1tag:blogger.com,1999:blog-2621999864544971526.post-71108907358541894812014-03-05T18:09:00.001-05:002014-03-05T21:45:13.288-05:00So far, so good...Surgery went well! Dr. K said she did get a little upset at one point, but they got her settled down and for the most part, she did great! He said she will most likely hit a rough patch tonight when the numbing wears off, but now that she is 2 months old, we are able to give her Tylenol, which I am thankful for! So, we are going to stay on top of that and hope it helps! <br />
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As far as surgery, he was able to successfully stretch the Achilles tendon in both legs and pull the feet up. She will now be casted for 2 weeks straight instead of one. She will be having a couple more casts after that and then they'll reevaluate to determine whether she will need more casting or not. Pray she responds well to the treatment and hopefully this set of casting will be done sooner than later!<br />
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THANK YOU for your encouragement and most of all your prayers! I can say, without a doubt, God heard your prayers today for our sweet Amelia! <br />
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A friend shared this verse with me this morning from Psalm 121:1-2. What I love about this verse is that THE Creator of Heaven and earth was with each of us this morning (and always)! How awesome that is!! <br />
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"I lift my eyes to the hills--</div>
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where does my help come from?</div>
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<b>My help comes from the Lord,</b></div>
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<b>the maker of heaven and earth.</b>"</div>
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<span id="goog_1666377360"></span><span id="goog_1666377361"></span><br />Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-24919527368518125852014-03-04T00:36:00.003-05:002014-03-04T23:44:24.539-05:00Amelia's very first surgery is coming up!<span style="font-family: Verdana,sans-serif;">On Wednesday, our sweet Amelia will be having a minor surgery on both legs; a bilateral Achilles tenotomy. This surgery will stretch the tendons in each leg in an effort to bring the feet up. She will then be casted again immediately following the procedure for another couple weeks. Her response to this part of the treatment then will determine how many more casts she will have to have. </span><br />
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<span style="font-family: Verdana,sans-serif;">The plan was to have the surgery at the hospital, but because the doctors decided that the anesthesia would be too risky, they will be doing this in the office. I am relieved because I was most worried about the anesthesia part of it, but on the other hand, I hope it's not more painful for Amelia. Another reason they wanted to do it under anesthesia is because Amelia moves so much. It sounds like they're pretty confident they'll have it under control, even if it takes more nurses to hold her down. :( The numbing will be similar to what you would get in the dentist's office if you have ever had a filling or any other type of procedure where they first numb it topically (applying the numbing cream to the area) and then give you a shot to numb it the rest of the way through. So, asking for prayers on Wednesday that: </span><br />
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<span style="font-family: Verdana,sans-serif;">1. She will respond well to this part of the process and surgery will be successful in correcting her club feet for now</span><br />
<span style="font-family: Verdana,sans-serif;">2. She will feel no pain or discomfort during the procedure</span><br />
<span style="font-family: Verdana,sans-serif;">3. That she will come out of the procedure itself with minimal pain over the next couple weeks, if any</span><br />
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<span style="font-family: Verdana,sans-serif;">Thank you again for ALL the prayers! I have received so many messages letting me know they're already lifting us up in prayer for Wednesday. It's so comforting and brings me to tears! </span><br />
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<span style="font-family: Verdana,sans-serif;">Again, I promise to update you on Amelia's prognosis in the very near future! I received a call from the genetics doctor last week that I want to update you on. We are going to really need some prayers for upcoming appointments and tests, so I will do my best to update you on that very soon!</span><br />
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<span style="font-family: Verdana,sans-serif;">In fact, in the meantime, another prayer request would be for Elsie and Sam. It seems to be taking it's toll on them lately, especially Elsie. I know a newborn is an adjustment in itself, but the extra strain on all of us has been hard on them. So prayers for them too would be very much appreciated! </span>
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<span style="font-family: Verdana,sans-serif;">I am going to leave you with some verses that I didn't even realize were right in front of me while writing this post. And, of course, the words are perfect and just what I need to hear from Isaiah 40:26-31. Another AWESOME reminder that God is taking care of us! He never ceases to amaze me!</span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="text Isa-40-26" id="en-NIV-18447"><sup class="versenum">26 </sup>Lift up your eyes and look to the heavens:</span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Isa-40-26">Who created all these?</span></span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b><span class="text Isa-40-26">He who brings out the starry host one by one</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Isa-40-26">and calls forth each of them by name.</span></span><br /><span class="text Isa-40-26">Because of his great power and mighty strength,</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Isa-40-26">not one of them is missing!</span></span></b><span class="text Isa-40-27" id="en-NIV-18448"><sup class="versenum"> </sup></span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="text Isa-40-27" id="en-NIV-18448"><sup class="versenum">27 </sup>Why do you complain, Jacob?</span></span></span></span></div>
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Isa-40-27">Why do you say, Israel,</span></span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="text Isa-40-27">“My way is hidden from the <span class="small-caps" style="font-variant: small-caps;">Lord</span>;</span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Isa-40-27">my cause is disregarded by my God”?</span></span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="text Isa-40-28" id="en-NIV-18449"><sup class="versenum">28 </sup>Do you not know?</span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Isa-40-28">Have you not heard?</span></span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b><span class="text Isa-40-28">The <span class="small-caps" style="font-variant: small-caps;">Lord</span> is the everlasting God,</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Isa-40-28">the Creator of the ends of the earth.</span></span><br /><span class="text Isa-40-28">He will not grow tired or weary,</span></b></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="indent-1"><span class="indent-1-breaks"> <b> </b></span><span class="text Isa-40-28"><b>and his understanding no one can fathom.</b></span></span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="text Isa-40-29" id="en-NIV-18450"><sup class="versenum">29 </sup>He gives strength to the weary</span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Isa-40-29">and increases the power of the weak.</span></span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="text Isa-40-30" id="en-NIV-18451"><sup class="versenum">30 </sup>Even youths grow tired and weary,</span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Isa-40-30">and young men stumble and fall;</span></span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><span class="text Isa-40-31" id="en-NIV-18452"><sup class="versenum">31 </sup><b>but those who hope in the <span class="small-caps" style="font-variant: small-caps;">Lord</span></b></span></span></span></span><br />
<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-family: Verdana,sans-serif;"><span style="font-size: small;"><b><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Isa-40-31">will renew their strength.</span></span><br /><span class="text Isa-40-31">They will soar on wings like eagles;</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Isa-40-31">they will run and not grow weary,</span></span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Isa-40-31">they will walk and not be faint.</span></span></b></span></span></span></div>
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</span></span>Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-78041419647593801532014-02-26T11:24:00.002-05:002014-02-26T11:24:28.530-05:00Number 7<span style="font-family: "Trebuchet MS", sans-serif;">Getting cast #7 put on today! Pray for little Amelia that she takes it even better than she did last time!! :)</span> Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0tag:blogger.com,1999:blog-2621999864544971526.post-18890160876940013502014-02-19T08:59:00.002-05:002014-04-14T22:01:22.494-04:00A look at how far we've come...<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Yesterday, Amelia had an appointment to get cast #6 put on. She is doing so much better with it! This makes me so happy and proud of her! :) She still cries a little when they stretch the feet into position, which is still hard, but at least she's consolable. Of course, we're starting to get the routine down now too! Between the snuggling, sugar water and feeding during the process, we're able to keep her a little more comfortable through it all. Thinking of the first few appointments, I didn't know how I was going to survive each week! God has been good! The first night and day following are a little rough too, but knowing that helps me deal with it. Having another doctor in on the casting has also been good. In fact, she gave us with some really good pointers on how to keep Amelia comfortable. This brings up another huge answer to prayer and it still amazes me to think about. </span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Going back, Amelia's first appointment with her orthopaedic surgeon, Dr. K, didn't go as well as expected. We weren't completely comfortable with him because he didn't seem very personable with Amelia and that was concerning to me since I knew we would be seeing him a lot! He is also very new, but I tried not to let that get to me because I know that doesn't necessarily mean he's not good at what he does. Regardless, we contemplated switching doctors, but in the end decided to stay with him. In fact, he ended up apologizing for the first visit realizing he was a little short with us after a stressful day. I was still a little unsure, but it turned out to be the best thing for Amelia. At the second set of casting, Dr. Maples showed up to weigh in on Amelia's treatment and has been working on Amelia with Dr. K ever since. Dr. Maples has been specializing in pediatric club foot for almost 30 years! In fact, she's the Pediatric Club Foot Program Medical Director at Mary Free Bed. Our pediatrician wanted to get us in with Dr. Maples from the start, but she was not accepting new patients. We're not sure of the details of how and why she got involved, but nonetheless, God's work, no doubt! We have a really good relationship with Dr. Kemppainen now too. Sometimes when we ask for God's direction, He may not answer in the way that we think, but it's always the best! </span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">The plan of care going forward...Amelia will have one more cast and then on March 5, she will be having surgery to stretch the tendons in each leg; a bilateral achilles tenotomy. This is considered a minor surgery, however they will be giving her anesthesia, which can be an issue in babies with the same condition Amelia has. Therefore, they will be doing the surgery at the hospital with an anesthesiologist from the Pediatric Intensive Care Unit (PICU). So please pray the surgery goes as well as expected, that the anesthesia is not an issue and God protects our baby girl from any complications. They will then cast her after surgery for 2 weeks and then probably have 2 more casts after that.</span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">In the next post, I'll update you more on Amelia's condition and prognosis and how the treatment is going on her hands. I know I haven't been good at posting lately; sorry about that! I'm going to try and do a better job of keeping up with it! So, stay tuned! :) </span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;">Again, thank you for the many prayers on behalf of our Amazing Amelia! So many of you have shared different verses with me and one of them was Psalm 71. Leaving you with verse 14 and some pictures of Amelia's progress as of yesterday! <br /> </span></span><br />
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<span style="font-family: Arial,Helvetica,sans-serif;"><span style="font-size: small;"><b>"</b><b><span class="text Ps-71-14" id="en-NIV-14991">As for me, I will always have hope; </span><span class="indent-1"><span class="indent-1-breaks"></span><span class="text Ps-71-14">I will praise you more and more." </span></span></b></span></span></div>
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<span style="font-family: "Helvetica Neue",Arial,Helvetica,sans-serif;"><span style="font-size: small;"><span style="font-family: Arial,Helvetica,sans-serif;"><b><span class="indent-1"><span class="text Ps-71-14">Psalm 71:14</span></span></b></span> </span></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyf972hcYFZqJ7E8efKTvc2GUb448kGZQMrfk4RBTfOMtAm2lof8aO6Mozw8Hk3terPYMBuCa3Zt0giQdx2Y_zTetkUw2G8okC03gQIgjjySVUMNPYsU8mA4XMFJ05aJSdqQ-uQ0K4mzk/s1600/P1150689.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyf972hcYFZqJ7E8efKTvc2GUb448kGZQMrfk4RBTfOMtAm2lof8aO6Mozw8Hk3terPYMBuCa3Zt0giQdx2Y_zTetkUw2G8okC03gQIgjjySVUMNPYsU8mA4XMFJ05aJSdqQ-uQ0K4mzk/s1600/P1150689.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Times,"Times New Roman",serif;">Precast ~ January 15, 2014</span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhihfD_iS3T1b0QPE_jvTsfJxBAn0iNBuKEjM91cofUkqIWItVNEp2tW9b9KkMkE7yqOA-xct2PYNaSyQEA-Hxc5LcQQnNkDQT96vwnKTMpRJiCMhgccuyQPXzDrV1EI4YVu-UXSV7_6_I/s1600/0122141637r.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhihfD_iS3T1b0QPE_jvTsfJxBAn0iNBuKEjM91cofUkqIWItVNEp2tW9b9KkMkE7yqOA-xct2PYNaSyQEA-Hxc5LcQQnNkDQT96vwnKTMpRJiCMhgccuyQPXzDrV1EI4YVu-UXSV7_6_I/s1600/0122141637r.jpg" height="240" width="320" /></a></div>
January 22, 2014</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_y5gXhxFlOnOGRbZ9VLMkw8B6-jWxlIkErboh7HUJ4NBOpH1wxKHPQhRq0Aq9rz4683j1KGr46NfozDaEnEqvvLX-vqvIsFGa2NCjQ49MVCY4PLJsApDDOQ_OQV_NZsNUWPJhl3FcD50/s1600/P1160640.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_y5gXhxFlOnOGRbZ9VLMkw8B6-jWxlIkErboh7HUJ4NBOpH1wxKHPQhRq0Aq9rz4683j1KGr46NfozDaEnEqvvLX-vqvIsFGa2NCjQ49MVCY4PLJsApDDOQ_OQV_NZsNUWPJhl3FcD50/s1600/P1160640.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">January 29, 2013</td></tr>
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<tr align="center"><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1UwrFiB0GaxLYusdVZPMW8aOuNk4TyKMQLSXVYh9NpvBzF6Pc2G45zKoWa5aU_vPP8AdvA_IIhNbrVqBdEBg1YmuRT11AeYXaFXDSR5j4tWBAg_6Jk6FPLmJBIgMdXNnyCS2zVAa3aaU/s1600/P1160942.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1UwrFiB0GaxLYusdVZPMW8aOuNk4TyKMQLSXVYh9NpvBzF6Pc2G45zKoWa5aU_vPP8AdvA_IIhNbrVqBdEBg1YmuRT11AeYXaFXDSR5j4tWBAg_6Jk6FPLmJBIgMdXNnyCS2zVAa3aaU/s1600/P1160942.JPG" height="240" width="320" /></a></td></tr>
<tr align="center"><td class="tr-caption">February 5, 2014</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">February 12, 2014 </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">February 18, 2014</td></tr>
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Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com4tag:blogger.com,1999:blog-2621999864544971526.post-346481616347119792014-02-12T13:27:00.000-05:002014-02-12T13:27:29.542-05:004 down, 6 to go!<span style="font-family: "Trebuchet MS",sans-serif;">Last Wednesday, cast #4 was put on. The appointment itself went pretty good. There were still tears, but it didn't seem as bad as last time. I was so proud of our Amelia! And thankful for your prayers! Although, I did tell her doctors that she was pretty fussy over the last week. Because Amelia can't speak for herself, the doctors measure their limits with her based on her reaction over the week. If in that week, she is inconsolable, that warrants a trip to the doctor before the next casting. She was consolable as long as she was being held. She just couldn't seem to find it. So, I brought this up. Her doctors said that they pushed their limits with her a little bit more that week, so they agreed to back off a little. That made me sad for her, but the longer Amelia has casts on, the less movement her muscles get and that's not good either. But, they were okay in being a little easier on her this week. She also had some sores on her feet where the bone by her big toe is pushing against the cast, so they put some extra cushioning and cream on that. She still wants to be held all the time, but she is cooing and smiling and that is so great to see! In fact, the doctor agreed that because she's becoming more aware of what's going on, that may explain her fussiness.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">So, now we're on our way to the appointments today. Praying for a good day!</span><br />
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<tr><td class="tr-caption" style="text-align: center;">Caught a smile! </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Decorating the casts</td></tr>
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<span style="font-family: "Trebuchet MS",sans-serif;"><br /></span>Anonymoushttp://www.blogger.com/profile/07241909790891079441noreply@blogger.com0