As a Christmas gift, ds1 wanted to make a doll for his brother. We puchased a 12″ Bright Eyes Doll Kit by Joy’s Waldorf Dolls (Waldorf Dolls at Child’s Dream Come True) and I helped him make it by hand. We’re pretty happy with the results and hope to make another one in the future.
The little man got his glasses for vision therapy and he doesn’t mind them too much. Just pulled them off once but they are a rubber like material so not a real big deal. Been working on his eye exercises throughout the day. Hope I can get in a good reutine with it. Isn’t he cute?
This afternoon, after a busy day of baking sun bread and working on Holiday gifts, DS1 was pleasantly surprised to get a big envelope from The White House. He had sent the President a congratulatory note on winning the re-election about a month ago and this was his reply. What a great Winter Solstice gift from the President.
About a month ago, DS2’s OT recommended we use a corner chair to help him sit up since he still can’t do it unassisted. They didn’t have any available for me to borrow at the time and they cost $100s to purchase so I made my own out of cardboard and duck tape. I’ve since glued on the anti-slip fabric used under futons and carpets. It’s all double layered cardboard from an old shipping box and pizza box on the bottom. It is stable and has held up well.
We ended up seeing the vision therapist on Tuesday when she had a last minute opening. She convinced us to do some therapy with her before and after strabismus surgery to get a better chance of the surgery working the first time. She prescribed glasses and gave us several assignments to work on daily with the eye patch until we get the glasses and then with the glasses once we get them.
Here is a simplified summary of our assignments in the pursuit of helping his eyes team together and help his overall development:
1. Move an object at his centration point (the point at which his eyes work together which will be moved out to 12″ with glasses as its only about 4″ without) in a figure eight for him to follow.
2. Move objects in the z-axis at his centration point for him to follow.
3. Watching gingham pattern cloth held at centration point.
4. Tummy time
5. Work on rolling back to front and front to back.
6. Support laying on stomach on ball to pick toy up and then release.
I may even integrate these suggestions I found online too:
Visual Toys
We will do this for a month once the glasses show up and then back to her to see how it is going. Unfortunately, the glasses are harder to get then I expected. We will be getting the Meriflex baby glasses that are made from soft plastic and considered highly durable for babies/toddlers. There are so few baby glasses and only a handful of local places have them and at a highly inflated rate. I also looked into ordering online but after visiting a couple optometrists, realized it is just too hard to fit babies to be able to order sight unseen. Even ordering locally, my optometrist had the demo kit but still has to order the pair we request so I don’t see us getting them before Christmas. This also means that we will very likely delay the surgery.
We saw the Ophthalmologist this week for DS2. Apparently patching 1-2 hours per day, even though I remembered only half the time, payed off for the babies strabismus. The Ophthalmologist didn’t see the left eye start to dominate as before and we are at a steady 40 prism diopters. He recommended strabismus eye surgery and we are now scheduled for surgery at the end of next month. I’m not looking forward to it but the research supports the benefit for surgery for such a large alignment deviation and the earlier the better.
In the mean time, I’ve contacted two behavioral Optometrists. One was a little too non-conventional for me and seemed to not feel surgery is ever warranted but the research I’ve found, even from The College of Optometrists for Visual Development, says it sometimes is and therapy can’t correct alignments greater then 20 prism diopters at best. The second seems more up my ally. She has years of experience and teaching credentials. She is also not anti-surgery. I was disappointed, however, that she didn’t have any names of Ophthalmologist that are supportive of vision therapy. Our Ophthalmologist is great in many ways but is not at all supportive of vision therapy. Apparently Ophthalmologists and Optometrists don’t generally get along anyway. I believe that vision therapy can help post op to prevent the eyes from going crossed again which is a risk for DS 2 especially with his brain abnormalities. I’m still debating if our first visit with the Optometrist will be before or after surgery as she doesn’t take insurance.
Written November 27, 2012
I just sat down long enough to realize I had a tough day. Forgot our notebook for violin class and my iPad I generally use to record the class. Did have my camera but it died before the end of the class but the teacher kindly recorded the new part of our new song we have to practice this week. Then we go to have lunch and I notice my tire is going flat so had to take the car to firestone for patching while the kids and I walked to eat Chinese in the cold and rain across the street. When I went to get the car, I learned the tire couldn’t get patched because of the nail was on the side so they put my spare on and headed back home (did I mention I was in Mclean?). On the way home I had to pick up my eldests medical records before his doctor appointment the next day which were of course not ready so we had to wait for them (that was after I waited 10 minutes on hold waiting to making my request over the phone). That is when we headed to Merchants the first time. Luckily, I had the reciept for the tires we got last year on this car because there records didn’t show we had them. They were also quite busy so were kind enough to take our tire and call us in the evening to take it in (and my dear husband took it in for me while I put the boys to sleep). Once I got home, The email our teacher sent didn’t contain the video of our lesson.
The thing is, I’m not upset by my day, just a little tired. I’m thankful for all the kind and patient people that prevented it from being a completely insain day. Not once did I feel overwhelmed. Thank you hubby, teacher, nice people at Merchants and Firestone and my boys who patiently experienced this crazy day with me.
After all that, we still managed to get our writing, math and reading done before we left the house and some more reading time after bed in addition to our regular Violin class and Taekwondo class.
DS2 had his MRI Friday. It was a little scary for mommy as he had to be sedated since the scan takes 45 minutes to an hour and requires you to be completely still. It was a really long hour for me but once it was all over baby was fine. He continued to nap for about 30 minutes then woke up slowly. It took a few minutes to get proper sucking down then he was able to nurse. After nursing for about 20 minutes he was smiling and looking around. We were at the hospital for about 3.5 hours total. He napped a little on the way home and slept well that night. I was very happy with the care and patience at National Children’s Hospital as usual.
Yesterday, Tuesday, we got the MRI results. No surprising findings. No tumor and it isn’t Joubert’s Syndrome as suspected. His brain stem is smaller then it should be (this area controls vision) and another area is smaller then it should be (controls vision, motor skills and speech). The nerves to the eyes also appear thinner then they should be. So, his symptoms of optical apraxia and crossed eyes are not surprising nor is his low lone and physical delays.
This does complicate the opthamologists recommendation to do stabismus surgery to straighten his eyes. Given the damage in the brain, there is a lower chance of the surgery being successful. The opto-neurologist said it is worth giving it a try and soon but I’m not convinced. I’ve got to do some more research and sole searching.
All and all, I feel I’m taking this well. Not sure what to do next. The opto-neurologist said there is nothing more we need to do right now but Occupational and Physical Therapy weekly as we are doing and he’ll probably need speech therapy when he is older. He also referred us to a geneticist to see if we can identify a genetic link. He says the abnormality does not look like something that I did wrong or brain damage but rather something that occurred early in the development (first trimester). For now, I like not having a label, as the opto-neurologist said, the brain is plastic and can adapt/change a lot especially at just 8 months old so we just have to keep working on the symptoms and not “type cast” his future potential.
It’s National Chemistry Week so I’m sharing ACS’s new series of videos called “Bit Sized Science”: http://www.bytesizescience.com/
Here is the assessment for DS2’s evaluation at 7 months, October 4, 2012. This was his first assessment and he was evaluated by an OT and Speech therapist for about 1 hour.
Gross Motor: 2-3 mo (atypical)
Fine Motor: 4-5 mo (atypical)
Cognition: 4 mo with scatter to 7 mo
Receptive Communication: 4-6 mo
Expressive Communication: 6 mo
Self Help/Adaptive: 7 mo
Social Emotional: 6 mo
Part C Vision Sceening: monitor
Part C Hearing Screening: no concern