We hope you all had a Happy New Year! My dad and I left at 6:15am to drive to Cleveland Clinic. It was definitely a long drive as Lexi hates car seats! We had no troubles finding the pediatric neurology clinic, which is amazing due to the size of Cleveland Clinic! We met with Dr. Friedman, one of the pediatric neurologists, for an hour today and he gave Lexi a very through exam. He too is "puzzled" by her condition and has never seen it before. He threw out a couple of "thoughts" but would like to take next week to look through her huge stack of medical records, talk with the pediatric cardiology team and the opthamologists to get their take on her condition. For now, he feels we are doing everything we can- keeping her weight up, working on her feeding orally, and keeping her eyes moistened and protected as much as possible since she doesn't have a corneal reflex. In addition, Lexi's gag is still present but very weak.
He will be getting back with us this next week to discuss some further testing. Our home healthcare begins this week. We also hope to begin Lexi's feeding therapy, OT and PT as soon as possible. These will hopefully add some much needed relief for us! We are meeting with the neonatal specialists in Findlay this week as well.
Prayer Requests:
Please continue to pray for Lexi's condition. She currently has 2 states- sleeping and crying. She does not "coo" and is, for the most part, a very unhappy baby. While we definitely understand her being unhappy, this makes for very long days and even longer nights!
We are EXTREMELY excited for an improvement in Lexi's feeding. With help from us (we pull her cheeks in to make her lips into an "ooo") Lexi has taken up to 10mls of formula!! She usually will take at least 3-4 mls a day. While this is small, it is an answer to prayer that she is at least taking something!
Pray for Jon and I as we work through insurance issues. We found out on Wednesday that our Home health nurse program is not in-network so, at this point, we will have to pay 40% of every visit. We are working with the insurance company and asking them to make an exception! Pray that we are able to make this happen!
Finally, we plan to to update the blog every weekend (usually Friday evenings). We may update periodically throughout the week but promise to update at least once a week. We appreciate so many of you asking for her updates and GREATLY appreciate your prayers. Lexi is still in much need of a lot of prayers and it is our hope that God will heal her either through medical intervention or through His divine healing!
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2 comments:
Hi Cherie. My name is Melanie. I went to school with Jon and found your blog on Facebook. I just wanted to let you know that your family will be in my thoughts and prayers. Lexi seems to be a very strong little girl! I really feel for you on her "2 states." My little guy (he turned 1 in December and he has a sister that turned 3 in December) was incredibly fussy as an infant and it can be so frustrating, especially when you have other children to care for. I know my experience was nothing compared to yours.
I'll be following your blog and praying for your beautiful family!
Cherie and Jon, We continue to pray for you as you move forward wtih Lexi's care and continue having so much faith and hope.
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