I started this post almost two weeks ago! But life got in the way, and then what I had written didn't save! Talk about wanting to cry!!! Anyway, life goes on.
Gracie graduated physical therapy because she is meeting her milestones! Occupational therapist is content with therapy being every other week while watching for sensory problems. She was put in OT due to having problems with swallowing her formula without thickening it, and problems with choking when she was first starting solids. I am taking this both as wins that Gracie is progressing well. She will be continuing with developmental therapy, especially with there not being a speech therapist available. Gracie only says "Mom" and "Dada" and mimics sounds like "woof" "moo" and "vroom". She will make other noises and screams (a lot) when we are at home, but barely makes a sound when outside of the house. She is waving bye, blowing kisses, and clapping her hands. She is even starting to follow along with Ms. Rachel (the Youtube sensation!) for the songs and dances. I love how happy she gets when Ms. Rachel is on.
DJ's teacher called me to let me know how well he is doing in class. He is starting to allow them to put him on the toilet during diaper changes, which is a big improvement! He is also starting to articulate his words better, which is letting others understand him so much more. His speech therapist is really happy with his progress as well. His doctor sent a referral to ENT due to having so many ear infections, though. He has had 4 this year alone, and they cause him so much pain that he just screams.
Andy is struggling with behaviors in school, but he is trying so hard to keep them in check. His teacher messaged me today telling me that Andy is one of the biggest cheerleaders for his classmates. He wants everyone to succeed! However, he had one of his meltdowns this morning. She was telling me that it was fairly quick in terms of how long it lasted. I just hate that it happens so often. I wish his referral appointment for developmental pediatrician would hurry up. He was put on a waitlist back in April.
Sierra has been to so many appointments lately that my head is still spinning. However, she also finished PT recently. She may need it again before to long because of POTS or hEDS symptoms. She has been ordered a CPAP machine to help with sleep apnea, which is a new diagnosis. She also had her appointment with the POTS Clinic - which has her seeing a neurologist and cardiologist in the same appointment. They are adding a ADHD med that also helps with pulse and blood pressure. Her blood pressure can get pretty high. One reading was 157/129. Her pulse stays around 85-90 bpm now that she is on a betablocker. Without the medicine, it would stay 120 and up. She has been having more dizzy spells lately. I told her doctors that I thought her POTS symptoms were getting worse, and has been wanting to stay in bed more days than not. I am praying that Sierra does not end up back in the wheelchair. It makes her depression so much worse because she hates that it does not give her the freedom to get around that she is used to.
Hopefully the appointments will slow down now that we are getting closer to the end of the year. I would love for things to calm down so that I could just breathe. I am getting so worn down with all the running we have to do. Tonight the kids were playing and squealing and I was torn between staying upstairs and playing with them or going downstairs to the quiet. Most nights I try to take a small quiet break but tonight I wanted the laughter.
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