Friday, October 11, 2013

Big Changes Coming

The last couple of weeks we have been going through some pretty big changes and I have turned into a total wreck. Our schedule was pretty set for the last two years. PT on Monday, OT on Wednesday, ST on Thursday, and doctor appointments sprinkled in between. It became familiar and comfortable. I woke up every day knowing what was going on and when. Well....not anymore.

Rae and Anna (PT)
Firstly, Rae has been discharged from Early Intervention as of October 4th and we had to say goodbye to her therapists. I cried. Not a blubbering mess kind of cry. More like one that acknowledges that words can never properly express how much these women have come to mean to Rae. Every word of encouragement. Every piece of transition advice. Every week they were here working with Rae. Rain or shine. Good humor or screaming ball of fury. They became a part of her team and while we may not have always agreed (at least 95% of the time we did), we always kept Rae's best interest first and foremost. I will never forgot how they help shine a light into the darkness and walked with us into the unknown.

Rae and  Karen (OT)
Secondly, we had our very first IEP (Individualized Education Plan) meeting last week. I felt so uncertain about what we were walking into and have heard more horror stories than encouraging ones. Part of me was ready to go battle and the other part of me wanted to just sit back and observe....I could do neither. We have to participate in creating this plan...a legal contract actually. We worked with representative of our local school board to develop goals and determine which school offers the best program for Rae. I toured two schools, our "home" school (about 6 minutes from our house) and another one about 30 minutes away, before the meeting. After discussing the options over with dear dad, we decided we wanted to make the 30 minute commute, which required a special assignment and was dependent on the school accepting Rae. They did within two days!!!

Our first experience with an IEP meeting was smooth and effortless. I'm sure we will have to do some tweaking here and there over the school year, but right now we are pretty satisfied with the outcome. Rae will still receive all of her therapies, has reasonable goals, and will be enrolled at our first pick school. I'm already shopping online for manatee stuff (the school mascot) and found the cutest pair of socks!!!

These socks can be purchased at Manatee Gifts Galore.
Thirdly, we have a new specialist...a GI doctor. We went because Rae was having a rash of unexplained fevers and we wanted to check her aspiration (better? worse?) The concern was that it had gotten worse and we needed to go from "nectar" to "honey" (liquid thickness) and go back to pureed foods. I had already started making that transition just to be on the safe side. Towards the end of the appointment the doctor asked me if any other doctors have mentioned a G-tube. I wept. Right there. In her office. I could not pull it together fast enough. It is the first time I lost it like that in a doctors office (except when my own doctors mention thyroid cancer...luckily it wasn't cancer...just HUGE and now it's gone). The one thing Rae has been able to maintain and loves is eating. I felt like Rett was coming in to steal something else from my baby.

Yes, there are many pros and cons to a G-tube and we have to weigh them all against each other, but I'm not going to get into all of that just yet. This decision requires more tests (another modified barium swallow and an upper GI...completed this week) and more consultations with her doctors. We aren't jumping into the surgical room at this point. I'm still wrapping my mind around the words and what that means for all of us. In the end, whatever is in Rae's best interest will be the direction we go.


These last three years have just flown by and I know the years ahead will move just as quickly. We didn't have a big party...heck, we didn't even have a small party. It was just immediate family this year and we were able to include my brother and his family via Skype. Being able to share her birthday with them made it even more special.

1 comment:

  1. Wow, lots of changes in your world! Wishing you a smooth transitional period and not too much struggle when it comes to the tough decisions. <3