The new school year has begun and at our house that means daily visits from therapists and teachers. Her school 'team' met with me 2 weeks ago to talk about her IEP goals and to share ideas of how best to position her for certain tasks, what she has improved on over the summer months and how to implement new signs. After it was over it suddenly hit me that a new year was starting, but more than that... Abby is now in the First Grade!
I don't know whether to smile or cry. Should I be excited? It's easier to just think we are starting another year of home bound services and not put a label on what it really means. We aren't buying new crayons or new school shoes. We aren't reading 'Hop on Pop' hoping she will sound out the words.
Instead we are working on head control and upper body strength that was lost after her April surgery. We are still trying to encourage her to swallow, and take steps in her walker. To use her vision to reach for objects put in front of her eyes. To focus on a task without biting her fingers.
Most days I try not to think about our routine in these terms, but to settle my mind on tiny improvements made and smile about those. And to remember that God's ways are not my ways and His plan for Abby is much higher than what I could imagine.
There is something funny about the beginning and ending of things... somehow it makes you reflect and brings into focus how things really are. This might not make much sense, but it is where I am today. I guess at this point it's easier to ignore what other kids are doing in first grade.
So far her schedule is manageable which I am thankful for. To give a brief idea of what the weeks look like:
Monday- speech + feeding therapies
Tuesday- vision teacher
Wednesday- physical therapy
Thursday- teacher for the hearing impaired + Occupational therapy
Friday- physical therapy at UCP
I am very thankful for a wonderful team of teachers and therapists who genuinely want to see Abby succeed and meet her goals! They love her too, which makes me happy.
On other notes, Abby is doing very well. Her seizures are much better controlled and we haven't been to the ER in over 3 months! Now that some of the school germs are coming into our house I'm trying to be more vigilant about hand washing/sanitizing and trying to keep her sickness-free... as much as possible.
We are waiting to hear news of her new wheel chair arriving! She was measured for it and it was probably ordered back in June, so we hope to see it within the next 2 months. Medicaid takes their time approving things like this!
Abby still seems to be tolerating the G-tube feedings and also some occasional bolus feeds. Most of the day and night she still gets the continuous, slow drip. This is very encouraging although we don't know for sure that she isn't refluxing. We are really hoping to not have to return to the GJ!
The G-tube is great although it is still having problems. In the past we typically changed a G-button every 4 months or so. These days we have been changing anywhere from 7 days to 3 weeks. The balloon on the inside of her stomach keeps popping. We don't know why but suspect it is stomach acid weakening the material, causing it to pop. So far insurance hasn't denied sending us replacements! This is good b/c they aren't supposed to pay for more than one ever 3 months.
This post has gotten much too long, so I'll stop here. Next up - our girl will be celebrating another birthday next week!!
