I realized this week that I haven’t posted anything in almost 6 months. I truly meant to post earlier than this, but life has been busy. There have been several ups and downs, but that’s typical in most families. So, what has been going on? I’ll try to keep it shorter since there’s a lot to go through…not everything will be written about, at least at this time.
Ok…so back in May we came upon the 1 year anniversary of J getting diagnosed with NF1. We also have been watching as more and more fibromas are popping up under his skin. As of late, I’ve even noticed more cafe au lait spots showing up. I don’t understand why this happens, but it’s NF. It’s apart of it. It stinks to watch it happen, but at least at this point it’s not affecting him.
The end of the public school year and this summer we have been blessed to have been able to receive physical therapy and occupational therapy through Shriner’s. The two ladies who worked with J were wonderful and we are back on the wait list for occupational therapy. The way how that works is since Shriner’s doesn’t ask for payment, there are a set maximum number of sessions that can be done in a set. So for physical therapy, J had 6 sessions with Ms. N. Since it is summer, and in theory we can be outside more, (not here in Illinois because of our crazy rainy summer until recently), his sessions didn’t get extended. With occupational therapy, Ms. K did 12 sessions with him and gave us a list of things to work on with him to strengthen J’s shoulders and things. When our turn comes back around again, we will be making the trek weekly again for sessions with Ms. K. I actually just got the call from the scheduling department yesterday for being about to have speech therapy happen for J starting in just about 2 1/2 weeks. I’m excited for this since J has gone all summer with no speech therapy and from what I can tell, Mrs. N from last year isn’t working with the school district again for therapy.
Something super exciting, and not NF related, but still pretty amazing, our church does a VBS (vacation bible school) every year and this year was J’s year to do something fantastic. If you aren’t a follower of Jesus, it won’t matter to you, but if you are, well, J decided that he wants a personal relationship with God and he asked Jesus to be his personal Savior and forever friend. We are so thrilled and blessed to know that he came to this decision and that he meant everything he prayed with my husband.
In a quick nutshell, that brings us to this week. We had a visit with Dr. A down at Shriner’s yesterday. We are making progress which is fun. J will be moving away from the SMO braces he has had this last year and will be getting something different…something less obvious that he’s got supports of any kind in his shoes. I honestly can’t remember the name of them…but it’s something with a much lower profile. I don’t know if kids at church have pointed any of it out to him, but if they have, it’ll be a moot point soon. 😀 Something that we will be looking into doing in the nearer future is to have J tested for Autism. One of the research things I read this last six months said that 25% of all people with NF are also on the Autism Spectrum. While J is high functioning, there are things that he does and doesn’t do that have us suspecting that he is on the spectrum.
Next week we finally have a check up with Dr. D to see how he feels J is doing and what his thoughts are about doing the testing for an ASD diagnosis. I’ve felt for a long time now that J is apart of the spectrum, but have let others (teachers at our church who have seen kids with autism) tell me that they don’t think he is. There are things, like the fact that even at 7 he will still chew on things (fingers, zippers, etc) is a huge flag for me. He also has a difficult time establishing and maintaining eye contact (something his almost 5-year-old brother and almost 3-year-old sister have no issue doing). There are others, but I am attempting to not have this be a novel today.
We continue home schooling this year, and this year all three of my kids will be home doing school. I’m excited and loving watching and learning how they learn best. It’ll be great to get going in full swing soon. This mama just needs to get the organizing bug and get everything figured out! So much going on!
Until next time…and I promise it won’t be 6 months from now!
our NF journey 