It has been a busy week for the Marshall family. We typically stay pretty busy, but this week was a bit more busy than normal.
On Monday we headed to Champaign for Ethan's eye doctor appointment. Jeff's dad came with us and Ethan enjoyed spending some time with his grandpa. He was so happy that while we were waiting for the eye doctor that Ethan wore his glasses for nearly half an hour. As you know that is very unlike our Ethan.
On Monday we headed to Champaign for Ethan's eye doctor appointment. Jeff's dad came with us and Ethan enjoyed spending some time with his grandpa. He was so happy that while we were waiting for the eye doctor that Ethan wore his glasses for nearly half an hour. As you know that is very unlike our Ethan.
It was an emotional appointment for me. As most of you know when we were there three months ago we got a new prescription for Ethan's glasses and were told that we needed to dilate Ethan's right eye "the good eye" to force his left eye "the bad eye" to work better. We have been unsuccessful at getting Ethan to wear his glasses, and because of that we made the decision not to dilate his eye. I knew the doctor would chastise us for the decision, but after talking with other PBD parents we felt that we had made an informed decision. We have continued to try to get Ethan to wear his glasses but we can't get him to keep them on and they make him hysterical for almost half an hour or more after wearing them for even a few seconds.
So as expected, the doctor had some harsh words for us regarding our decision to not dilate Ethan's right eye. After I shed a few tears and a bit more discussion I decided that we would go ahead and try the dilation for the next three months. The one thing I can't fault the doctor for is that he is actually very optimist about Ethan's vision and his ability to have very functional sight. That is very encouraging because as a mom of a child with special needs I need people on our team that are optimist about the possible potential of my little man and see him as an individual and look beyond the PBD diagnosis while being realistic about the challenges he has due to the PBD diagnosis.
After the eye doctor appointment we headed down to the lab for blood work that had been ordered by Ethan's geneticist. We only did the non-fasting labs, which was still a full tube of blood, but Ethan did really well. The gals in the lab were able to get it on the first stick and although he was very upset -- more for being held down than for being stuck, I think -- he was okay once it was all over. We will go back after Labor Day for the other half of the labs, which will be early morning fasting labs. The labs we did on Monday included a liver panel, since we want to make sure that the increased betaine is not having a negative impact on his liver. The labs that will be done in September will include the VLCFA and other tests that we are hoping to see an improvement in, because if there are improvements that would be an indication that the betaine is doing something. We will keep everyone updated when we have more to share.
On Wednesday morning Ethan had speech therapy here at home. Ethan didn't want to work very hard because we made him mad by trying to get him to wear his glasses. He ripped his glasses off and after about twenty minutes he decided that he was okay after all and that he could work a bit. Then in the afternoon Ethan had hearing therapy. Ethan was napping when his his therapist arrived so we had some time to talk about Ethan's vision, hearing, his upcoming sedated MRI and ABR in November, hearing aids, cochlear implants, and Ethan's transition to the STEPS program. After Ethan woke up he played, 'talked" and even showed off his climbing, standing, and pulling up skills.
Thursday morning we started out with physical therapy. Ethan has had the same PT for almost two years but yesterday was her last official visit because with Ethan transitioning to the STEPS program he will get a new PT. Our PT, who we love, reassured her that the PTs at STEPS are awesome and she knows them both well and that Ethan will be in good hands. I am so thankful that Ethan has had and continues to have such a great Early Intervention team. Ethan worked on his standing, his pulling up, and walked around in his walker -- which he is now officially too tall for. The PT is going to try to get a loaner walker from Easter Seals for Ethan. Part of why Ethan "pushes" himself in the walker is because it is too short. A taller walker will force him to straighten his legs more. Also, for the first time yesterday we saw that Ethan is starting to understand the concept of putting one foot in front of the other! This is a big and important concept he has to learn before he can learn to walk.
After PT we had a short little break and then it was time for vision therapy. We discussed the eye doctor appointment and Ethan played and explored new toys and a silver soccer ball that the therapist brought with her. Ethan loved this ball! He batted it, crawled after it, crawled with it, tried to roll it back and forth with me and the therapist, etc. The therapist left it with us, since Ethan liked it so much. She also dropped off a big mac switch. We are going to start using it to help Ethan learn the concept "all done." We have been saying and signing "all done" for a long time but Ethan still hasn't been able to sign or say it so we only know he is finished with something when he starts to get upset, throws the toy, etc. We can use "all done" and the switch for lots of different situations in everyday life -- meal time, playing, swinging, etc.
Here is what a big mac switch looks like. This isn't exactly what Ethan's looks like, but it will help you get a better understanding of what it is. When you push the switch it can say whatever you program it to say. Our's says "All Done."
After vision we had a little break and Ethan took a nap. He was actually still sleeping when the feeding therapist and the dietitian arrived. We discussed Ethan's eating and updated both therapists about the increase in the betaine and then we had to wake little man up. Ethan is growing! He weighed in at 24 lbs. and 7 oz. and is 34 and a 1/2 inches long! The dietitian is happy with Ethan's growth and if he continues to do well there may be a time in the not so far off future that Ethan can go begin to cut back on his Bright Beginnings (soy-based pediatric drink similar to Pediasure) and transition to regular soy milk. That would be great, but we have to keep Ethan getting balanced nutrition and growing before we can proceed with that plan. Ethan's nap must have put him in a good mood because he did great during feeding therapy. The therapist not only got him to eat pretty well for her he touched his applesauce and even tolerated her bringing a straw to his mouth, although he would not open for it. The feeding therapist will be seeing Ethan twice a month. I am very hopefully that we can begin making some real progress with Ethan and I believe that someday Ethan will grasp the concept of self feeding and that someday he will get to eat puffs, cheerios, and other toddler food and maybe someday he'll even learn to drink from a cup. Until then we continue to puree food and he eats a lot of applesauce, soy yogurt, and some stage 3 baby foods and drinks from a bottle.
It was a busy Thursday! We don't have anything scheduled for today and tomorrow my parents are going to come up for a visit. Ethan will enjoy getting to see his grandparents and I'm sure they will love it too. We are still trying to get Ethan to pull to standing on video. He has probably pulled to standing about a half dozen times in the last week or so but we just can't seem to catch it on camera. He is doing a lot of pulling to kneeling, and as he gets stronger he'll be able to pull to stand without such a struggle. Ethan has been on fire when it comes to gross motor skills since returning from the GFPD Conference three weeks ago. Perhaps we need to get away more.
We are looking forward to Ethan's beginning of the STEPS program next week. A bit nervous of course, but very thankful that we are getting a "first day of school." Something that two years ago I was sure we'd never get, who cares that it is the first day of a two year old special needs program. I'm excited! I think it will be very interesting to see how Ethan does with all the other kids.
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