Today Rob and I went to several places with Reagan to see what kind of therapies and options for care we had available. It started with a trip to the medical day care about 30 minutes from our house and we weren’t overly thrilled with that option or location. While it’s run by a competent staff of nurses who know how to administer medication and feed via the G-tube, and it would give us a break, it just didn’t feel like the right fit for us, at least right now. There is one other place that we will look into that’s a medical day care and it’s a little closer to home so we’ll see how we feel about that place.
After that trip, we visited an Arnold Palmer outpatient place for therapy. Reagan would be able to get all of her therapies (physical, speech, occupational) at one location, but we won’t know if she’ll be able to do all of them at once, or if it will be physical therapy one day, speech another, etc. She will tell us how much she can handle…if she can do an hour and a half and all three at a time, great…if not, that’s OK…we’ll be going at Reagan’s speed on all of these therapies. Rob and I really loved this place, it was clean, in a nice and convenient location, plus it seemed they had every imaginable therapy equipment on the market. The people were super nice too…We feel that Reagan would thrive in that environment.
During our car ride, Rob and I discussed that taking Reagan to these places were not in the grand dreams we had for our daughter. This was not the road we had envisioned. But even still…it’s important that we dream big for Reagan so she can accomplish great things and overcome the adversity that has been put in her path. This is the road God put us on and it looks like it’s going to be a long and bumpy one…but it’s our road so we’re going to have to keep going forward on it until we get to a smoother path…hopefully there’s a smooth path in the future.
While at the Arnold Palmer outpatient place, the lady recommended checking out the UCP (United Cerebral Palsy) center near UCF. I explained that Reagan didn’t have Cerebral Palsy and she said she didn’t need to. Apparently the UCP center caters to both children with special needs and others who don’t have special needs. My understanding is that it’s an integrated learning environment with children who are both “normal” and children who have “issues” which is basically how the lady put it to me. I just thought it was interesting…Reagan is labeled as having “issues” when in reality, we all have issues, whether we want to admit it or not.
Our dream now is to help Reagan overcome the challenges and difficulties that have been placed in front of her. To be quite honest, I feel like everything she’s doing is a complete miracle. Today she was holding her head up really well and reaching for a balloon out of my arms while holding her head up which required a lot of balance and focus. From looking at the MRI and listening to the Dr. about Reagan’s entire basal ganglia being damaged, I don’t understand how she’s doing these things. I feel like she shouldn’t be doing any of this…and yes there’s a long way to go, but she continues to eat when I feed her food in a spoon, she’s holding her head up, making tons of eye contact and is very alert, she smiles A LOT and vocalizes…even if it’s not always with words, she’s telling us things and she’s communicating.
The UCP center seems like something we may consider down the road, but right now I think we will be focusing on therapies at outpatient facilities and possibly in our home if we are able to find someone good. There aren’t a lot of medical day cares, but we are still open to that idea, IF it seems like the right fit.
Today was a good day…I feel like we got the ball rolling for Reagan.
I also made four follow up Dr. appts today…I used to think we were busy doing stuff for Reagan before…that’s nothing compared to this. On the bright side, we fed Reagan in the car through her G-tube while we did all this stuff…and she ate and napped at the same time, now that’s killing two birds with one stone!
Yesterday we took some pictures in the lovely Easter dress that someone gifted to us. Reagan is just so beautiful to us…inside and out.
Dress made and gifted by Well Dressed Wolf
Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea. – Psalm 46:2
Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you. – Deuteronomy 31:6
Yet I am always with you;
you hold me by my right hand.
You guide me with your counsel,
and afterward you will take me into glory.