Lexi Mae

Lexi Mae

Tuesday, August 2, 2011

A HUGE PRAISE!!

We took Lexi to Cleveland Clinic yesterday for four appointments. Here's the break-down of her day:
Opthomology- We had not seen Lexi's Optho for 4 or 5 months and he was very pleased with her progress. Lexi's eyes are much straighter than they were 5 months ago and the Dr. has ruled out her needing more eye surgery for at least the next 6 months!

ENT- The ENT has scheduled another swallow study for Lexi to see if she is still aspirating on thin liquids. This is probably one of her biggest obstacles still in eating/drinking! The swallow study will be in September.

Audiology- Lexi did much better on her hearing test this time and they have been able to rule out a moderate hearing loss! They are certain there is nothing major going on with her hearing and are guessing her extreme speech delays are due to her facial nerve damage.

Feeding Clinic- This was our most productive appointment of the day (although they all went well!). Lexi is exactly 3 feet tall and weights 27lbs 6 oz!! She is in the 30th percentile for her weight!!! The clinic was thrilled with her progress. SO, they have decided to take her off all her day time feeds!!! This means no more chasing her around the house on a tube! We only have to feed her through the night! This is a huge blessing and we are so excited! We have to make sure we really focus on keeping food in her to keep her weight up but we are very determined!!

Finally, the Physical Therapists Lexi sees have decided to put her in AFO's which are taller leg braces then she has been wearing. Lexi is still really unstable when she walks and tends to walk side to side instead of straight forward. We see a pediatric orthotist in Toledo on August 10th to get her fitted for some custom leg braces (can't wait to see THAT bill!) :-)

Please pray that:
We can keep Lexi's weight up and keep her off this feeding tube! This is a HUGE step forward to move her off her day-time feeds and I am determined that she will not move backwards!

Pray for Lexi's Ortho appointment on the 10th. Pray that the Orthotist will be able to find the right braces for Lexi to help her become a more stable walker.

Pray for her upcoming swallow study. Pray that Lexi gets an "all-clear" for thin liquids!

Thank you all for your continued prayers and support!