Lexi Mae

Lexi Mae

Thursday, May 21, 2009

Thursday, May 21

Wow! I can't believe almost an entire month has gone by since we have blogged! It has been a very busy month for our entire family!

Lexi is making some progress. Not nearly as quick as we would like, but still some progress. My dad and I spent most of the day in Cleveland again today at Doctor's apts. In the past month, Lexi has been improving on holding her head up, but she still has some work to do. Her torticollis has made some improvements as well. We do daily exercises and stretches with her to help her as much as we can. The torticollis is the main reason she isn't able to hold her head up well. She is doing a great job, however, at rolling over! She rolls from her stomach to her back all the time and is almost rolling from her back to her tummy!

Mother's day weekend, I actually spent 2 different days in the ER with Lexi. On Friday, May 15th, she was in the ER for an infected G-tube. Findlay did not have the right size tube to replace it, however, so we had to wait until today to see the GI doctor in Cleveland. Then, on Sunday, Lexi got a little stomach bug and threw up many times. She has a hard time catching her breath when she throws up. She was acting very strange that evening, so, back to the ER we went! I'm glad we went though! Lexi aspirated on some of her vomit and was developing pneumonia! They were able to give her a heavy dose of antibiotics and after a trip to the Pediatrician on Monday and 3 nursing visits this week, she is doing much better!

All 3 of her apts. today were follow-ups. The doctors are keeping a close eye on her aspiration, thyroid levels and GI issues. We will have a BIG day on June 29th as we will see a new cardiologist at Cleveland Clinic, Neurology and Lexi will get another EMG- the test that sticks needles in her face, tongue and neck to determine the amount of facial nerve damage. This is going to be able to give us a great deal of information as to whether or not Lexi is improving and healing!!

Lexi is also finally starting to find her voice! She is making a few "oo" sounds from time to time and this is very exciting. Please continue to pray for her as we work on this slow recovery. We are taking Lexi on Children of the Light tour from June 2-7. Pray that we are able to find time to work on her therapies and that she does well with so many different environments!

Finally, the most exciting news is that we have been led to a new home!! We found a foreclosure in our neighborhood that is much bigger AND has an extra bedroom and bathroom. The house has a small front room that we plan to use for all of Lexi's therapy equipment (that we are STILL working on getting through insurance!!) We will be able to get this larger home AND have lower monthly payments! Praise God! We also sold our current home in TWO days!! (my mom is an awesome realtor!!) However, the new house needs quite a bit of work- especially a new roof. So, if anyone just LOVES to spend time working on a roof, we will be taking off the shingles and putting new ones on next weekend, May 29,30 and 31st before we head off on tour for a week:-) Shoot us an e-mail if you'd like to help out even for a few hours!

Prayer Requests:
Please continue to pray for Lexi's feedings. She is working on some spoon feedings and takes between 15-25 bites. However, she has no interest in bottles or pacifiers. Pray that we see major improvements in the next month before her EMG.

Pray for Lexi's G-tube. Her tube is bothersome to her and currently is infected. Pray that her feedings start making HUGE strides so this G-tube is not a permanent thing!!

Pray for Jon and I as we struggle to find time to work with Lexi and pack AND fix up a new house. This is a major undertaking but we really feel it is meant to be! Please pray for patience AND endurance!

Happy Memorial Day!