Rylee's assessment was scheduled for 8:30 this morning at the UW Waisman Center in Madison. Originally, we were going to take Troy with us. Last week, after talking to Grandma Klauer, we decided to send Troy to spend the day with her instead of having to get up early, sit quietly for 4 hours while Rylee got all the attention, and have to sit in the car for 3 hours. Grandma had stuff to do at home so she took Troy on Thursday evening and he spent the night with her. He had quite a busy day of dragging all the toys upstairs and watching/listening (or covering his ears from what I am told) to the trains. It was much better for him than having him come with us. We were able to focus on Rylee and the therapists and paperwork much easier without him there.
Last night, since it was just Rylee and I and we didn't have anything we HAD to do, I decided to take her to a movie that I have been wanting to see. She fell asleep halfway through and was the best baby when she was awake. About the time that she fell asleep, I started having some contractions. Those contractions ended up being every 3 to 4 minutes lasting 1 minute consistently from 9 until 11 ish. At 10, I ate to get some food in my empty belly and by 11 the contractions had slowed way down so I was able to sleep. But once Kristopher got home an hour later, I was up again with identical contractions. They were painful and powerful. Those lasted until 2 am, when I was so exhausted I finally fell asleep with the help of a back massage from Kristopher. I woke often until I got up at 5:30 am. Those contractions lasted throughout the much of the day. They seemed to be worse when my stomach was empty. As of right now, I have only had a few this hour and the baby is wiggling around like crazy. Hopefully, those real deal contractions hold off for another 5 or 6 weeks at least.
We arrived at the Waisman Center early today to schedule the genetics appointment. August 16th was the earliest we could get in. I was tickled pink! I am so glad that we don't have to wait another 3 months! Afterwards, we got Rylee checked into see Dr. Iyama. Rylee went with Dr. Douglas from Audiology first. She passed the hearing screening. She did have some trouble with the low tones but even I could hardly hear them if I wasn't paying attention. She sat on my lap throughout the entire screening. Her eardrums and middle ear are clear of fluid. We'll follow up with them again in the future. Then she played with OT. She sat in a highchair and they did a variety of exercises with her. Jessica our OT would've been floored by what she did with them. When they handed her blocks she instantly picked them up and started to bang them, smiling all the while like "I know exactly what I am suppose to do with these!" After that, we went to our original ice cold room where we fed her and waited for PT. PT brought in a tumbling mat with them for her to hang out on the floor as well as a box of toys. Dr. Iyama came in as the PT was just starting. It was getting to be Rylee's naptime so I kind of figured she wouldn't be the most cooperative. Poor Marcy, our current PT, has been working with her for months to get on all 4s and try to crawl on her own. And she's been trying to get Rylee to put herself into the sitting position. She has never crawled on all 4s or been able to get into the sitting position before. She did it today. She had a smile on her face and looked at me with like "see I can do this when I wanna". Little turd! Marcy is going to have a cow when she hears about this next week. Dr. Iyama did the speech part. Each different therapy categorized her at a different age.
OT placed her at 10 months compared to her 14 months adjusted age
PT placed her at 7-8 months compared to her 14 months adjusted age
Speech placed her at 6-8 months compared to her 14 months adjusted age
Dr. Iyama and PT decided that orthopedic shoes were what was best for her. They signed the prescription and we already have a new message on the answering machine to schedule her fitting. We've been concerned about her feet and the way they roll inward so far so this is nice to finally get someone to help us take care of it. At this point, it's a problem with the lack of muscle tones in her feet and legs so there will just be shoes, no breaking or cutting involved!
We are going to redo this assessment in 6 months. Hopefully she grows 6 months in 6 months. Thus meaning that 6 months from now they place her at an age with an additional 6 months. I.E. OT placed her at 10 months now, hopefully 6 months from now she is placed at 16 months.
Dr. Iyama also fully believes that Rylee's delays are a result of the Chromosome 6 deletion. Even the hairline deletion like hers, can cause huge problems. She explained that if 1 chromosome has too much or too little than it throws off all equilibrium in the brain. Thus resulting in delays. Kris, Troy and I do not have the deletion therefore, it's pretty much a given that that is why she has the delays as a result of the deletion. Genetics is a fast growing study. We have Rylee's deletion registered with the CDO. The particular test that Rylee had done, the microarray test, is new, within the last 2 years, for clinical use. Thus being the reason that we have limited to no information about her deletion. Hopefully, Genetics will shine some new light on us when we visit with them next month. Overall, the appointment went well. Time will tell!
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