Sunday, May 4, 2014

4 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!

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.

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!

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!

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. 

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.

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!

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...

“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

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.

Where can I go from your Spirit?
    Where can I flee from your presence? 

 If I go up to the heavens, you are there;
    if I make my bed in the depths, you are there. 

 If I rise on the wings of the dawn,
    if I settle on the far side of the sea, 

 even there your hand will guide me,
    your right hand will hold me fast...