August is only half way over and it’s already proven to be one of the busiest months in a long time. Both girls are getting ready for big transitions in their lives (Charlie to Kindergarten and Ryan to special needs pre-school) and with that comes a laundry list of to dos, to see, to assess, to-buy, etc., etc.
This week as I start my 18th year of teaching, Charlie will get on the bus for the first time all by herself to start her 1st year as a student. Last week I went to a Kindergarten informational meeting at the girls’ elementary school. It took everything I had not to cry but I actually held it together. We found out who her teacher is and what bus she will ride and I even peaked in on the girls’ classrooms. We have purchased all the items on her supply list and she will get to visit her room and meet her teacher tomorrow. She is so excited! Katie will be there for her when she gets on the bus, follow the bus to school, give her one last kiss for encouragement, and watch her walk into the building. I have chosen not to be present for this milestone. The last thing Charlie needs is a blubbering Mama on her first day of school. If I cry, she’ll cry and that will ruin her day. I want everything to be happy and positive for my little big girl. Before we know it, she’ll be walking across the stage to receive her diploma in the graduating class of 2027! In the meantime, we’re squeezing the most out of these last days of summer.
Ryan has been busy too! When she turns 3 next month, Ryan will begin attending the same elementary school as Charlie as a pre-schooler. She will be in the room next to Charlie’s with other special needs students and some typical students as well. She will only go to school 4 half-days a week (Charlie will go 5 half-days) and ride a special bus. We are currently in the process of getting her assessments done by school therapists. Ryan is being seen by the school psych, OT, PT, and speech therapists, and based on their assessments, what her medical records say, and with our Help Me Grow specialists, her IEP will be written. Even though I’ve been to probably a hundred IEP meetings for my students, it will be really weird sitting on the other side of the table. But I have confidence that the district in which I live and work will do what is best for my baby. They better!
Along with all the school assessments and meetings, Ryan has been seen by her usual therapists, Neurosurgery, Immunology, the Department of Developmental and Behavioral Pediatrics, and the dentist. The Monday we returned from San Diego Ryan had an MRI for her neck. We requested that while she was under anesthesia, they do a blood draw to check her immunoglobulin levels. Based on what the immunologist in San Diego said, we knew we needed to follow up with that soon. In a nutshell, the neurosurgeon said her neck is status quo and to follow up in another year. She has a little extra cerebral spinal fluid in her thoracic spine area but it’s not a big concern now. *phew*
Immunology on the other hand did not go as smoothly. Due to the fact that Ryan’s immunoglobulin numbers are lower than before (in other words, she is even more susceptible to infection), she will be starting monthly antibody infusions – known as IVIG – in September. It’s a day-long process where Ryan will have to basically sit all day and get her antibodies intravenously. I’m not sure how it will go considering Ryan hates when people that she doesn’t know touch her, she hates needles, and she hates sitting still. Basically, it’s going to suck. *sigh*
Ryan got an assessment 2 weeks ago at the Department of Developmental and Behavioral Pediatrics (DDBP) because of her lack of progress in speech. They concluded that she either has apraxia of speech, dysarthria (muscle weakness in the mouth), or a combination of both. We are increasing her speech therapy to every other week. At the last session the therapist recorded her voice to have a specialist in voice resonance listen to it. It’s possible that the amount of air she uses when trying to form her words is affecting her speech as well. She sounds really nasally. We’ll find out what they think soon. Because of her lack of speech (and her love of technology) she is now on the waiting list at the Perlman Center to get set up with an adaptive communication device. It will probably be something like an iPad/tablet with pictures that she can click on to form sentences and let us know what she wants and needs. She’s starting to get pretty frustrated with not getting her point across.
Ryan also went to the dentist for the first time. We brought her to someone who specializes in kids with special needs. He was awesome. Ryan did pretty well (for her) at the appointment. I held her in my lap while the dentist counted her teeth and poked them all with the pokey thing. She cried pretty hard and gagged once, but she didn’t puke and she recovered really quickly. We call that a major victory! As a side note: In the waiting room we realized that she can manipulate my iPhone with expertise! I have all my apps categorized in folders and she can get out of one folder and get into the “kids” folder and open the app she wants! She loves the phone… unless she gets a brand new Minnie Mouse toothbrush from the dentist. Then she throws it across the room!
Wishing you all a great start to the new school year!