It's late and I'm exhausted so just taking the time for a quick update. I spent last night at home with Matthew and as usual, I kept putting off going to bed until much too late. Still was up and going before 6am. Someday, I will learn. Hmmm.... and I complain about Maia not sleeping? As she would say, "Silly mommy!"
Matthew hung out with nana and papa for a while this morning so Mark could run home and sleep for a few hours. Nana came to the hospital to spend the afternoon with Maia. Matthew spent the afternoon with some friends from church (such a huge blessing to us and so wonderful for him to have time with other kids). Mark and I planned to just take a nap, but instead ran errands and spent a little time together. Gosh, I miss my hubby!!
Back at the hospital now. Maia had a pretty good morning. OT went fair, PT was pretty good. She "rode" her trike around the unit both AM and PM sessions. Starting to push on pedals a bit which is progress. The PT asked me about scheduling an appointment for Maia to be evaluated by a company that makes adaptive mobility devices. A wheel chair would not provide adequate upper body support given her significant ataxia. And a regular stroller just is too small for her. It makes me sad that we will need to use something like this, but wishing it wasn't so won't change anything. If it will benefit Maia, then of course we will proceed. I'm waiting to hear when the appointment is scheduled for. She will be evaluated her at the hospital.
Fluid intake is going well, although eating was not great tonight. She would take a bite, but just let the food sit in her mouth. This has been a gradual change over the past few days, so I'm concerned about it. Will be mentioning to the speech therapist tomorrow. The feeding tube won't come out if Maia's intake isn't what it needs to be. She is able to take all of her medications orally, though which is wonderful! Right now, she continues to receive meds every 2 hours, so we aren't waking her during the night just using the tube. From a speech standpoint, we aren't seeing huge progress, but Maia is starting to make some different sounds. Nana and Papa are pretty sure they heard a "bye" this afternoon, too.
That's the short version. She's fighting sleep again tonight. For those who have asked, yes.. I also think she may have some fear of sleeping since she's awakened so many times with more hurts and tubes. And it is something she can control (really, the only thing at this point).
Now, I'm going to be in control of my sleep - lol!! More tomorrow.