January 12- New Year, new updates

Happy New Year! We hope everyone had a blessed holiday season! We were so thankful to be home with our family this year enjoying a much healthier and happier New Year. Despite her many set-backs and delays this past year, we are so thankful for the progress Lexi has made. She is a real trooper! We also appreciate everyone's continued prayers and concerns for her. One of my good friends put it very well. Lexi's condition is going to be a very long marathon, not a sprint as we originally thought. Pray that we have the endurance she needs!

We went to Cleveland Clinic last Monday and yesterday. The roads yesterday were the worst I have ever experienced and it took my sister Holly and I 4 1/2 hours to get home last evening! But, we were thankful to make it home safely with the terrible road conditions.

Last week, we saw Neurology. Dr. Friedman is very pleased with Lexi's progress. He is confident that her cranial nerve damage is getting better, but does not know if she will fully recover from the damage she suffered. He said the most difficult thing to hear from impatient people- "give it more time!" We were happy to see that he was pleased with the progress she has made, however, since he is the 1st doctor to see her at Cleveland Clinic exactly 1 year ago!

This week, Lexi saw 4 doctors. ENT (ear, nose & throat) did a swallow study with a scope in the office. The good news is Lexi is not aspirating! The bad news is that because of her cranial nerve damage, she can't control liquids and has no chewing motion. They are having us thicken her food even more and continue therapy. The head of pediatric speech pathology helped with the swallow study and afterwards talked with me about Lexi's unique situation. She has agreed to see Lexi every two weeks when we see the feeding clinic. It's our hope that we can get Lexi communicating, most likely by sign language, in the next few months!

We then saw GI and, since Lexi has been extra fussy that past few weeks and throwing up, they have moved her to yet another formula. This formula costs $150 for 4 cans!! Yikes! I am working today on getting it approved through insurance- please pray that they will approve this highly specialized formula! Lexi has lost over 1 pound this past week as well. She is back down to 17lbs 12 oz. This is very discouraging to us! We are praying this new formula puts her back on the weight-gaining track. (Why is it that she LOSES and I GAIN??- I think we need to get his figured out!) :-)

After GI, we were finally able to see the neurosurgeon. Dr. Luciano spent some time with us and walked us through her MRI scans. There are 2 areas of concern on her MRI. He feels that most of Lexi's symptoms are related to her cranial nerve damage during her heart surgery, most likely from loss of blood flow during surgery. However, he does think that a few of her symptoms are related to her chiari malformation as well. So, he is planning yet another MRI for Lexi along with a flow study of her brain. After this, he will meet with us again to discuss the results and the likelihood of brain surgery. They are hoping to do her MRI while she is already sedated during her eye surgery, which is now scheduled for February 15th.

Finally, we had a 2 hour appointment with the sleep disorders clinic. The neuro-sleep doctor is pretty sure that Lexi has sleep apnea. We are very glad that the GI and ENT doctors insisted we have this checked as sleep apnea can put extra stress on your heart! So, we will be doing a 12 hour sleep study at the clinic on February 9th and 10th.

Lexi is getting stronger (and more ornery) and is finally starting to sit-up on her own! Please pray for her continued therapy as well. Jon and I still struggle to find the necessary time to work with her on speech, OT and PT.

Specific Prayer Requests:
Please pray for continued healing for Lexi. We are praying specifically that she recovers fully from her cranial nerve damage and that the healing is quicker than the doctors would ever expect! We are also praying that the 2 areas of concern to the neurosurgeon would come back clear so Lexi does not need surgery!

Pray for our trips to Cleveland as the roads are very slippery during the winter- especially in Cleveland!

Finally, pray for our family as we continue to try to manage all of Lexi's care and deal with twins in their terrible two's! Pray for strength, wisdom and patience.

We will update again in a few weeks when we find out more information on Lexi's eye surgery and her MRI.