Archive for the ‘Baby’ Category

Sign Language


Over the holidays we realized DS2 had started signing “milk”. He had done it for probably 10 days before we realized he wasn’t just examining his hand. We were so excited. We had been signing to him for awhile like we did with his brother. They both started signing at the same age. Another hint that cognition seems to be intact. He soon after added the signs for “more” and “Mama”. Yay!

Making a Doll


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?

DIY Corner Chair


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.

Vision Therapy


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.

Eye 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.



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.

Assessment Data


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

Evaluation Day


What an emotionally taxing day. DS2 had his developmental evaluation for early intervention by the county. I feel a bit emotionally numb. What they said was consistant with what we’ve observed but so hard to hear and see in writing. Also, some of his delays have been labelled more severe then I realized. He should be rolling and rolling over well at this point, he’s not. He should have visible muscle tone between his shoulders on his back, he doesn’t. His movements are abnormally jerky. He has trouble grabbing for what he wants. He’s much further from sitting up then I expected based on their evaluation. On a positive, he displayed a normal 7 month old behavior when he cried both times (completely crushed) when the evaluator took away the toy she gave him. He engages well but it isn’t clear to me why they have him listed as cognitively delayed, something I hadn’t registered until reviewing the paperwork this afternoon at home. Like I said, rough day. I’m hoping I feel better tomorrow. My boys need me present. My older depends on me for not only love and care but schooling and my little guy needs all the attention I can give him. “Greater Powers that be, give me strength!”

First Nerology Appointment


Today was a long day. While DS1 stayed with our neighbor for several hours making us dinner (yes, I have an amazing neighbor) and playing Legos, Ds2 and I met with Dr. Avery, a pediatric Opto-neurologist, today.  He agreed with the pediatric ophthalmologists diagnoses of OMA and strabismus.  He was impressed the ophthalmologist picked up on the OMA, as it was so subtle.  He also gave DS2 the “Easiest dilated 7 month old exam” award.  He was so tolerant of it all.  Although, DS2 wasn’t so happy with the blood draw later.  The doctor said that he would like to see an MRI but it is no rush.  He felt confident there is no indications this is caused by a tumor or something else progressive (I was relieved to hear that) but an MRI might help us to point to a cause.  Papi and I are still weighing the pros and cons of now versus waiting until he’s a little older.  We are leaning toward waiting until he is 1 or 1.5.

I also wanted to mention, this was the first time I’d ever been to a children’s hospital.  National Children’s felt so welcoming.  Everyone was so helpful, even random people in the halls offered to help when I looked around confused.  I enjoyed all the bright colors.  I spent a fair amount of time at the hospital with my mother this summer.  It was so depressing.  All hospitals should have brightly colored walls.