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!  

1 comment:

Sue Vis said...

A saying on my refrigerator says that the will of God will never take you where the grace of God will not protect you. Rest in this assurance and know that you are loved and prayed for. Love Randy & Sue Vis