Well, Lilly has been out of the hospital for a little over 2 months now. With only a couple of minor scares. This is the longest that she has been hospital-free in her entire life.
She is doing well and really picking up the pace developmentally. She has been approved to do make up sessions from all of the time she missed out. Often, doing up to 12 hours of therapies a week. For lack of a better description, she is working her butt off.
She can roll over now from belly to back and back to belly. Although, she is still uncoordinated and inconsistent, and often gets stuck with her arm trapped underneath. But the tenacity that she is showing leaves me hopeful that she'll get the hang of it pretty soon.
She has finally started to sit **propped**. Meaning, that as long as she keeps her hands on the floor she can sit up by herself for a few minutes. This makes folding clothes a little easier for me because I can actually use BOTH hands. We are waiting for her Theratogs suit to come in from EI. It is a special suit that is designed to provide trunk support for children with low muscle tone. I am hoping that with this suit she is able to sit up and play with her toys for more than 5 minutes at a time because I sense that she is growing very, very tired of lying down all the time. She almost seems frustrated that her mind wants to go but her tiny body just can't quite get her there (yet). If all continues to go well, in the Spring/Summer, her PT would like to start working on standing.
While she is out of the hospital, she will still need a lot of outpatient testing and follow ups. She will need a sedated MRI of her spine to see if there is any sort of abnormality leading to her developmental delay or in some cases it can even be related to shunt failure and/or kidney reflux. She will also need to have a renal scan done to see the actual function of her kidneys and it will also assess the amount of scarring that has been done from all of the previous infections. She will need to do another sleep study to see if she has out grown her sleep apnea, although this is unlikely. She will need another ABR hearing test to see if her hearing has improved now that the fluid on her brain has been controlled. She will also need to be sedated for this. Her neurologist would like for her to have an EEG, which tests for seizures in the brain. Sometimes, they can happen without having an outward appearance, or can be tied into the reason for her sleep apnea.
But the biggest medical decision we are facing right now is whether or not to have a G-tube put in to her belly to help with her weight gain. A just over 1 year old she is just shy of 14 lbs. While we don't expect that she will be a big person, she is now falling off a healthy weight curve. She has been eating the same volume of food for almost 6 months now. And introducing solids has been a tough road, since she seems to have some sensory issues. The tiniest piece of a solid cookie can cause pretty significant vomiting and wrenching. Overall, just not a pleasant experience for ANYONE involved.
We will meet with a GI doctor at the end of the month to discuss the pros and cons of a G-tube and have an upper GI series done to see how much of the eating issues are related to reflux and stomach emptying issues. After that we will hopefully be able to make a decision and move forward, as feeding has been a major issue since the day she was born. I will certainly NOT miss the days of toting around a notebook and pencil to track every ounce she drinks.
No comments:
Post a Comment