Today was Sophie’s follow-up with her awesome Pediatrician Dr. Nieves whom we absolutely LOVE! It had been three months, yes 3 MONTHS since I had to take her! That is huge for us, while she has been sick thanks to my stock of medications and equipment no doctor visit necessary.
I have been attempting to take Sophie out without her wheel chair so that she can learn to behave without it, then again she is only four I may be asking for way too much. She seemed fine just a little excited when we arrived, she’s back to twirling her strings so that had her preoccupied for a bit. When we went back to the waiting room the well waiting area was full so naturally I took her to where there was no one and not so loud but you could still hear the loud banging and rattling of the other children playing. It was REALLY loud. And then BOOM. It all became too much for her, she started yelling and pinching and wanting to bit. She begins to laugh nervously and if I don’t calm her it will end in tears and frustration. Thank goodness we were called back to the room before I had to walk out. She immediately calmed once it was quiet but it was still very bright but she handled it well.
Sophie weighs 29lbs, she is just under the 5th percentile for weight on a typical growth chart which for CdC is good because she IS on the chart, finally. Dr. Nieves was happy with her condition, despite being full of phlegm her airways sounded good. We went over diet, meds, education etc as we do every visit. Have I told you I love this doctor, she is amazing! Loves my girl and is always a step ahead thinking of how far my girl will go.
Dr. Nieves was not pleased with the fact that Sophie only get 2 hours of instruction and an hour of speech a week from the school system but I’m over it. We talked about pushing for more therapy but honestly I’m over it for right now. I just don’t have the energy to deal with people coming and going and searching for the right one. I’m not going to fight for such little time. Sophie learns from us everyday, she interacts with all of us at home and is learning everyday. The teacher she does have is awesome with her and Sophie knows it’s time to work when she arrives, they have a great connection. Sophie also has a great OT who works with her an hour a week and an ST. I’m happy with what we have, it’s better than nothing.
Dr. Nieves is very happy with Sophie’s progress both with her health and her cognitive gains. She has by far surpassed the expectations of all the medical professionals that are treating or have treated her as well as mine. The only suggestion was to add some nutritional packets to her almond milk for added calories so we keep her weight up. Oh and of course to keep her in a bubble but that’s nothing new.
Give her the best but she cannot be a part of the outside world. That’s not hard……(can you sense my sarcasm?). I know she only wants to make sure my girl lives and has the best quality of life and I love her for that!
My Dance in the Rain 