I have a good amount of things to talk about and I wanted to post some pictures. Things will be a little out of order because of the way I uploaded pictures.
The boys have been waking up early in the morning, before Ben's alarm even goes off, and we think it is from so much light in their room from the sun. They have a bad history of breaking blinds and pulling down curtains unfortunately. They also no longer nap and won't even lay down to rest anymore and we once again think it has a little to do with too much light in the room. The other day Zak got a little too crazy in his room and created a hole in his wall! After that we decided we needed to try something to block the light out. We talked with the boys and told them they are big boys and need to behave and not play with their new blinds. So, we put up room darkening blinds which seem to do a good job of blocking the sunlight. Here is a picture of the hole in Zak's wall along with a picture of Ryder carrying his new blinds in the store...
Next, I want to do a health update about the boys. On Thursday I kept Ryder home from school and ended up at the pediatrician with both boys for some really bad coughing and congestion. The pediatrician checked them both out. Zak ended up having a sinus infection which is probably still lingering from the one he had at the beginning of February. She said his lungs were clear which is good. They put him on Zithromax hoping it would kick out the infection since the Omnicef didn't before. Then she looked over Ryder and said his lungs sounded junky. Ryder had pneumonia along with possible strep throat (didn't test since she was going to treat him for the lungs anyway). So he ended up on Zithromax and Orapred. Ryder is sounding a lot better and seems to be acting much better as well. Zak's cough seems to be lingering and possibly worse so we will keep a close eye on it. I am keeping a journal for both boys to track infections, illnesses, antibiotics, and anything else health related to show the Immunologist.
Now I want to share some random pictures from the last few days...
Ryder in the shopping cart at Target today
Ready for baseballRyder gets a backpack sent home with him each week filled with activities to do at home. This week his backpack is all about writing. Here are a few of the things he worked on with Ben the other day along with a few of Zak.
VZ got in the cage with Robin
Zak tracing the monster
using the proper grip on the pen, a new emerging skill!This morning Ben went to school with Ryder to observe him. I was shocked at how different Ryder is at school and wanted Ben to get the chance to see this as well. I then met him at the school for Ryder's IEP meeting at 11am. Once I got there Ryder's teacher told me that Ryder was very quiet and did not participate in much this morning with Ben there. Ben then explained to the teacher that what she saw today in school was just about how he is at home. She was happy to get to see the other side of Ryder, but also baffled just as we are!
The IEP meeting went well which is always a good thing. He will no longer be receiving OT sessions which I am not happy about, but nothing much we can do about it. He has achieved his OT goals in school even though at home he is not doing well with the feeding aspect. The OT talked with us for a while giving us helpful ideas and suggestions. She also said I can e-mail her anytime. I do have Ryder on a waiting list to have an OT evaluation done by a private therapist so hopefully that might get us some more useful information. The speech therapist went over her current evaluations which we pretty much agree with. He will continue to receive two 30-minute speech sessions per week to work towards his new goals for expressive and receptive language. The special ed teacher then went over her current evaluations which show him to be at age level for most everything. We did voice our concerns about a few skills so she will continue to work on those and observe how he does in school with them. She did find him to be at a 2-month level for self-help skills as well as being delayed for social skills still. He will continue going to the special ed pre-k three mornings a week to work on his goals in those areas as well. The school nurse was also at the meeting because she prepared a Health Care Plan to attach to Ryder's IEP which outlines guidelines and needs for Ryder regarding his CVID. We will end up adding actual goals to his IEP once he is in elementary school. They then went on to discuss Extended School Year (ESY) which is services that occur over the summer. Th teacher went over the guidelines and felt Ryder didn't qualify for it, but then asked how we felt. I voiced my concerns about how he shows such a large gap between skills at school and at home. I explained that I was worried he would regress over the summer with no therapy and start back at square one once school started, I also said I would be looking into private therapy for the summer because of this. I was surprised how quickly the speech therapist spoke up and offered speech services for ESY. She set it all up so Ryder will receive two 30-minute sessions per week during the ESY time. I am so excited about this!
Ben and I decided to start with many of the ideas the OT gave us for Ryder's feeding at home. He eats so well at school so we plan to bring some of those skills home! In school he usually eats out of a cup using a spoon or fork because it helps the food move around less. So we went to Target and bought some small bowls to try out along with some divided dishes with high walls. I know it will look strange and probably complicate things for a while, but we are hoping allowing him to eat out of these small bowls will help give him confidence using a spoon and fork. Once he has mastered this we will start to move back to regular plates. We are willing to try anything in order to get meal times less stressful and more successful!