Happy Easter! We are so excited to celebrate this joyous holiday with our three little ones at home! Lexi got her picture with the Easter bunny today and was able to watch the twins go on their first Easter egg hunt. Many of you have asked how her appointments at Cleveland Clinic went on Wednesday so I wanted to be sure and update everyone!
Wednesday was a very long, but productive day. We were able to see 4 new doctors and get blood work done all in 1 day! We left the house at 6:30am and returned at 8:30pm. We saw G.I. (gastroenterology) first. The doctor was very knowledgeable and gave us some helpful information. She scheduled Lexi for a new swallow study next Wednesday. Cleveland would like their own study done and we are very excited! We are asking everyone to PLEASE pray that Lexi does not aspirate on her next swallow study! The GI doctor also said that Lexi's mic-key tube is too large for her little tummy. This could be part of the reason for her crying and discomfort during her feeds. At her next appointment immediately after her swallow study, the doctor will most likely replace her tube with a smaller one. She also said there is absolutely no reason we should be paying $200 a month (not covered by any insurance) for Lexi's reflux medication. She gave us a script for a new medicine that will only cost $45 a month!
After GI and lunch, we then saw Endocrinology. Lexi has an under active thyroid. We weren't very concerned about this, but the doctor said it can actually lead to poor brain development. An under active thyroid in kids under age 3 is actually a very big deal. We're so glad we got her appointment moved up from July! The doctor did some blood work and put her on some thyroid medication (yeah-one more!)
After Endocrinology, it was on to Opthomology. Instead of a 3 hour appointment, we were only there for about an hour and were able to see 3 eye doctors during that time! They gave Lexi a very thorough check and said her vision looks good. We need to continue her eye drops but they do not need to see her back for 6 months!
Our last appointment was with ENT (ear, nose and throat). The doctor talked with us for quite some time. They are a little concerned about Lexi's raspy voice and the amount of time she spent on the ventilator. So, they put a tiny camera down Lexi's nose and into her throat. We were able to look at her vocal cords on a monitor! Lexi might have a nodule on her vocal cords and they look very red and swollen. This could be due to her reflux. However, at this point, there is nothing they will do for the nodule as operating on vocal cords is very risky. They will see Lexi back in 1 month.
Overall, we had a very productive day and Lexi did a fantastic job with all the poking and prodding! Are biggest prayer request at this point is for her swallow study at 9am next Wednesday, April 15th. PLEASE pray that Lexi does not aspirate during this study. If she does well with the test, we will be able to actively pursue bottle feeds again!
We will hopefully post again next week to update you all on her swallow study! Until then, have a blessed Easter! He is Risen!
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