Season Greetings everyone, hard to believe we are deep in the holiday season and I haven’t posted in over 2 months. Life is moving at a different pace these days. It has been very busy with lots of ups and downs. I’m happy to report that Lily continues to progress every day. She seems to be consistently connecting more with her body. She has quicker responses and reflexes; she even seems to be ticklish again. One area we have been focusing on is her digestive system and oral eating. We have been able to cut a 5th of her formula (tube feeding) so far because she is eating by mouth at least twice a day. Our hopes are to get her enough calories through oral food and take her off tube feeding altogether. It is not an easy task. Lily’s feeding tube goes into her intestine; not her stomach. She also has a g-tube in her stomach that we vent 24/7 because she has bad reflux. So it’s a delicate balance closing off the stomach tube after she eats long enough for digestion without her vomiting from the reflux. This will take much more time than we anticipated . . . but that’s OK, we have started the process . . . we’ll get there.
We have been working with the local public school district over the last 8 months. (Yes, you read that right . . . ugh). We are STILL trying to come to an agreement on what support Lily needs. It is our hope that we will begin school instruction at home in January. Once everything is settled I will be more detailed and hope to post about this process and what families NEED TO KNOW. (Deep breath)
Lily is gaining more strength daily. And Jim and I have been able to continue decreasing her Baclofen (spasticity medicine). She started on 40 mg 4x/day and we are down to 20mg 3x/day . . . this is a true testament that she is getting better! She is still doing about 18-20 hours of therapy a week. Much of the therapy is Neuro based. And her swallowing has improved so much that her therapists no longer feel she needs vital-stim (electronic muscle stimulation during swallowing). She is sitting independently during therapy and requires little assistance most of the time. We are also beginning to finally use her eye-tracking computer for communication now that we have some outside support. It truly is amazing to see her progress. I know most do not see it but when you break down the components of walking (for example) and see that when gravity is taken away that she is able to MOVE HER BODY! For many out there (including other therapists) they see Lily still sitting in her wheelchair and they think to themselves, Is she walking? No. Is she talking? No. Is she waving her arms? No. But what most do not understand is that when you break down each movement, take away gravity and allow her to feel her body move she can do it!
The bottom line is that her brain CAN send the signal!
She also continues her hippo therapy (horseback riding) at the Shea Center. And has Speech therapy with her special pony, Bliss. These two have a very special connection.
We continue to visit her school, Our Lady of Fatima, weekly. We have enjoyed Science Lab with her 5th grade class with one of her favorite teachers, Mrs. Ayer. Lily is extremely motivated by her friends and peers.
Lily’s biggest cheerleader continues to be her little sister, Charlotte. She draws pictures and writes notes to Lily almost daily. She adores her big sister. She loves her so much and misses her playmate dearly . . . we all do. Everyday our hearts ache to hear Lily’s voice or feel her embrace. Sometimes I look at her and forget that she is the same girl . . . the pain never goes away or gets easier.
We have managed to take some needed family time away from home. We have made trips to Mammoth each month, including over the Thanksgiving break. It was great to be with extended family for the holiday. We plan to stay home and spend a lot of time with family over Christmas and then off to mammoth for New Year’s. Thank you for your continued prayers and support for Lily and our family. May you be blessed with good health, peace and love this season and throughout the New Year.
If you would like a TEAM LILY window decal I have LOTS! Send me a note with your address is you’d like one.