Has it really been almost 4 months since I've updated this? I can't believe how quickly time flies! BUT, we have a lot of GOOD news to share this time!
Lexi has been making remarkable progress in the past few months. We finally got her heart, brain and spine MRI scheduled for the end of May. It was a 5 hour procedure and Lexi came through it all like a champ! The neurologist's office called us a few days later and told us that the findings on Lexi's brain MRI were "quite remarkable." Lexi's chiari malformation (brain stem hernation) has actually SHRUNK!! Her hernation was 9mm and it is now 6mm! That is quite a remarkable difference! The doctor said they never see this happen and really don't have an explanation for it....we do!! LOTS and lots of prayers from our many friends and family!! Thank you!! Lexi does still have what is considered a moderate chiari, but brain surgery is post-poned yet again for at least another 6 months! Praise the Lord!
Lexi's heart MRI also had pretty good results. Her cardiologist said they did find some additional narrowing in Lexi's blood vessels between her heart and her lungs. They are going to do more frequent Echo-cardiograms (every 2-3 months) for the next year to keep a close eye on the blood vessels and see how things progress. However, her other two narrowings are both "acceptable" so nothing else is needed right now!
Lexi has really taken off developmentally. She is toddling around and climbing on EVERYTHING, including our dishwasher door (which she broke and we had to replace!). Definitely blessings in disguise! :-) She is also starting to use some words on her own and LOVES to sing "Row row row your boat." Lexi is also eating pureed foods for every meal. She's still not able to chew or have a great deal of lip closure, but she is definitely gaining some weight!
I took Lexi to see the hospital pediatrician yesterday. He had not seen her for several months and he was very please with her progress. Perhaps some of the best news we received is that Lexi is up to 27 pounds! She is in the 25% on the growth chart for weight!! The hospital pediatrician took her off her thyroid medication, which means she is just down to two medications a day, AND he has taken her off her morning tube feed. Lexi has gone from 4 feeds daily to one at nap time and a continuous feed overnight. With her being so mobile now, only having her hooked up to a feeding tube while she is sleeping is a HUGE blessing for us!
Please pray that Lexi contiues to keep her weight up! Pray that we find the right foods to feed her (and the time to puree them all) so she does not have to add a feed back into her schedule.
Lexi will be attending Blanchard Valley Schools in the fall, probably once she turns three at the end of October. Jon and I are having a very difficult time sending her off to BVS. Please pray for a sense of peace and comfort for us!
After taking two entire months off of doctors appointments, we are heading up to Cleveland Clinic three times during the next month to get all of her appointments out of the way before she heads to school. Pray that all 10 of her appointments go well! We will keep you posted as we finish this long round of check-ups! We will be seeing ENT, GI, Opthomology, Neurology, Cardiology, Endocrinology, Allergy, and she will be having an audiology test, swallow study and 4 hour allergy test to see if she has outgrown her egg allergy! Shew! It's going to be a whirlwind! Pray for strength for sweet little Lexi!
Enjoy the rest of your summer! Lexi loves the water so we've been spending a lot of time out back in her baby pool!
Thursday, July 14, 2011
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