Tuesday, April 22, 2014

Because He Lives, I can face tomorrow!

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.  :)

Smiles from all 3 at the same time!
Sweet sisters...
Enjoying the sun!! 
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.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."  Matthew 6:34

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. 

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.  Pray her eyes check out good! 

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.  Pray for an easy fix! 

Lastly, we'll stop by her cardiologist to get another blood pressure check and if all is good, they'll up the dose again.  Praying we can increase the dose and get closer to our goal! 

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! 

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!"  

Sunday, April 13, 2014

One day at a time...

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!  :)

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! 

sleeping beauty

Taking a much needed break from casting and braces!

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!  Pray that the blood pressures continue to do well and that this medication will be our miracle!  

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.  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!   

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.  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.  

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.

"Against all hope, Abraham in hope 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, being fully persuaded that God had power to do what He had promised."  Romans 8:18, 20, 21
THANK YOU for your continued prayers!!!  

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!!  :) 
Also, I want to apologize to all of our faithful blog followers and prayer warriors; I meant to update this much sooner!