Wednesday, September 5, 2012

Isabella Update!

We have FINALLY settled back in and we are getting back into our normal routine. Isabella is sleeping through the night again (10pm-7am). After a lot of trial and error she is now taking all of her bottles without throwing up! We stopped the methadone about 5 days ago, but she started showing signs of withdrawal and we had to start it back up again for a couple of days, yesterday was the last day. It takes 1-2 days to get completely out of her system, so we will see how she is tomorrow! in my last post I mentioned that Isabella would be going to the eye doctor to check out the shaking of her eyeballs. The doctor confirmed the nystagmus, diagnosed her with strabismus, and discovered a coloboma in her right optic nerve. Her left eye is perfect, so we will be working with her right eye. We still aren't sure how all of this will effect her vision but at least we now know what we are working with. The nystagmus has already improved significantly since I first noticed it. The only thing we can do for now is to patch her left to try and strengthen the right eye. She only has to wear a patch 2 hours a day and it does not seem to bother her. The strabismus (eye turning in) can be fixed if necessary, and there is nothing we can do for the coloboma. All of this news was kind of difficult to hear because I feel like she has gone through enough already and I do not want to have anything else for her to worry about. I am trusting in the Lord and praying for healing so that she will not need surgery in her right eye.

Now, on to some GOOD NEWS! Isabella had her check up with the Cardiologist today and everything looks GREAT! He was very pleased with everything he saw and he cut her medications down from 11 to 6!! We will go back in three months for another check up and an echo. I am PRAISING GOD because this is wonderful news. She can now go out in "public" - Walmart here we come! HA ;) She can now do tummy time so we can really start working with her to build her strength back up. The Dr. told me that any time a child goes through heart surgery it sets them back 6weeks-2months developmentally. I can already see that Isabella has lost a great deal of muscle tone and she is going to have to work so hard to build it back up. Last night she rolled over in her crib and the Angel Care monitor went off (which means there was no movement detected for 15 seconds) so I ran upstairs and her face was smushed in mattress and she was sleeping hard. I rolled her back over and she was fine, but it is so scary because she did not have the strength to clear her airway. Starting next week we will have 2 hours of PT, 2 hours of OT, and 1 hour of speech. I would not be surprised if the PT requested another session because of how much work we have to do. We shall see!

Going in for my first Heart Check up! 

Sleeping during her EKG :) So Sweet! 
I am so thankful that our baby girl is doing so well! Thank you for continuing to check up on her and for praying! I know God hears our prayers - he healed our sweet girl!

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