Happy Swinger

We took Taylor to the playground today with the Huggabebe, and she was able to swing (for a short time) in the toddler swing. We were so excited to be able to let her swing with the proper support. Her head still isn't strong enough, so she didn't last too long, but I think she enjoyed it all the same. Marissa even took a turn pushing her baby sister and thought that was pretty cool.

To Learn or Not To Learn?

I took a quick shot of Taylor's incision this morning when they changed the dressing. There's no stitches or anything on the top, so right now it's just sort of gaping open much to my shock, I was expecting to see a nicely stitched up incision. The stitches are actually in layers underneath so that the scar will be a nice and thin, straight line.

Yesterday while Taylor was napping after her surgery I went to the Family Resource library in the hospital. I signed out a book called "Seizures and Epilepsy in Childhood - A Guide". I thought it would be good to do some reading while Taylor was sleeping and I had time on my hands. This is what I read...

"Only 10 to 20 percent of children with infantile spasms will have normal mental function; the vast majority will have moderate to severe mental retardation. This is the only seizure type for which one can predict such a poor outlook. The poor prognosis is in part a consequence of the underlying brain pathology, but it may also in some way be a result of the effects of this chaotic electrical activity in the brain."

I'm trying to learn more and better understand what we're facing and this just slapped me in the face. I closed the book and put it down.

Surgery Today

Well today was the big surgery day. Taylor's muscle biopsy was this morning on her upper right thigh. She was put under general anaesthetic, it was a quick surgery and Dr. Wong said that everything went smoothly. Thankfully she was scheduled for first thing in the morning because she had to fast before the anaesthetic. She was a pretty hungry girl when she came out of it! The incision is about an inch long and will heal in a straight line. He will follow up with us in a month to see how the incision has healed.

Part of the piece they took out goes to Vancouver, the other part goes somewhere in the US. The first results will come back within a couple of weeks, the rest take a bit longer.

Taylor very rarely cries any more so it's hard listening to her sob, she's obviously in a fair bit of pain today. They're giving her Tylenol every four hours, we're trying to avoid giving her codeine. It was just day surgery but they are keeping her overnight because of her history of an arrythmia. I'll be happy to take my girl home in the morning.

Taylor's Very Own "Little Room"

Above is a picture of Taylor enjoying her "little room", made with love by her Grandad. He built it last month on his turnaround from Fort McMurray and I've been busy shopping around all the local dollar stores to decorate it up. I did the left side all black and white which is what she sees the best, the right wall is an assortment of textures (from velcro to corrugated cardboard to elastics). The back is mirrored posterboard and hanging from the top are various objects with different tactile and auditory qualities. One of her favourite things is shiny pom poms, she also really enjoys beaded necklaces. She gets the yellow tamborine with her feet because she's always kicking, and she really targets the metal measuring cups because they're so shiny. When she accidentally bangs them with her arm she really gets excited.

Another Busy Day

Two appointments at Children's today. First we met with Voon, our Occupational Therapist (OT) for a feeding appointment to introduce Taylor to some texture, she's still on purees. It went fairly well but it will be a slow transition while Taylor learns how to move food over with her tongue and chew it. Voon suggests stimulating her mouth with the toothbrush before a meal, then giving her a few spoonfuls of more chunky food. Once her gag reflex gets triggered, then it's time to stop and finish the meal with her usual pureed food. Then we just gradually increase the amount of chunky food as she can manage it until the purees can be eliminated altogether. As with everything else, this will just take time.

Our second appointment was with Dr. Clegg, the Cardiologist. Taylor had another 24 hour holter monitor on last week and the results were great, it showed no early extra beats. There's a small possibility that it's not showing the arrythmia because the Atenolol (beta blocker meds) is just doing its job. But she is fairly confident that Taylor has outgrown the arrythmia. When her type of arrythmia occurs as a newborn, the vast majority outgrow it within a year. So for the next week Dr. Clegg wants us to drop the morning dose of Atenolol, and then stop it altogether. Yay, we're going off a med! She wants us to do another 24 hour holter monitor a few weeks after Taylor's been off the meds just to confirm that the arrythmia is gone. I'm very hopeful!

Huggabebe

One of the mom's I met at Pace found this thing on the internet called the Huggabebe. It's meant to give support to babies who don't have the ability to sit yet. There's a video on their website from a hospital in the US that uses them with special needs infants/toddlers who do not yet have trunk control. We thought it looked amazing and ordered one right away. It came and it's awesome. We put Taylor in it and sat her on the couch which we haven't been able to do before, even propped up with pillows she wiggles onto her back within 2 seconds. Marissa thinks it is so cool to have her sister sit beside her, and so do we :-)

Rub a Dub Dub...

...Taylor can now go in the tub! Her bathseat finally arrived today. It's quite a medical looking contraption but it will allow her to bathe in the big tub now instead of the baby tub that she has outgrown. I think Marissa may even be able to fit in the tub with her, won't that be nice for our girls to be able to have a bath together.

Vision Clinic

Today was a follow up with Dr. Romanchuk at Vision Clinic, to re-assess her Cortical Visual Impairment, as well as to look at the back of her eye to see if there is any indication of damage from the Sabril. Good news is that there is no damage, and we will soon be starting to wean off the Sabril. Dr. Romanchuk was quite pleased with how well she is fixating and tracking and is very encouraged that she will continue to make progress visually. Exactly what we wanted to hear!

Vision Goals

Today we had a home visit from Lara (the Occupational Therapist with CNIB) and we went through the vision goals for Taylor...

Objective #1 - Optimize Taylor's use of vision

• Goal #1: Increase length of fixation and tracking. Aoid moving the object initially. Show it to her from 1 or 2 feet. Minimize distractions when possible. Present items within 30 degrees from midline at eye level on right and left or above eye level to eyebrow on both sides. Below eye level is difficult to get her attention, central is best. When working on tracking move the object slowly to allow her to re-fixate if she has not been able to maintain her gaze. Practice horizontal and vertical tracking at this stage.
• Goal #2: Taylor will reach, grasp and release items that she locates by sight or sound. Use concepts above to make the target as easy for her to see as possible. Couple with a sound cue if necessary. Use hand under hand to facilitate reach and grasp without illiciting tactile defensiveness. Use simple word t help her anticipate what is going to touch her.
• Goal #3: Accomodate for light sensitivity. Discussed use of wrap around sunglasses for infants and hat to allow her to open her eyes outdoors. Pulling blinds indoors, using a screen on car window, wearing a brimmed hat will help protect her eyes.

Objective #2 - Taylor's development will not be delayed by her vision loss

• Goal #1: Taylor will be comfortable exploring different textures with her hands. Use diffeent textures on her play gym. Participate in water play. Use gel bags. Facilitate with hand under hand to avoid defensiveness.
• Goal #2: Putting one or both hands on the bottle while drinking and working towards her holding the bottle on her own. Make bottle easy to see and easier to grip. Add tactile feature if required to enage her.
• Goal #3: Develop head control, sit with support of hands, shaking and patting objects with hands, holding an object with voluntary grasp, banging an object on a hard surface. Use visual/auditory and tactile targets to encourage her to position her head, move towards the objects, and use engaging objects that will encourage her to bang and swipe (eg. metal measuring cups to bang together). Face paint on caregiver to help her maintain her head upright.
• Goal #4: Taylor will imitate simple gestures such as waving and vocalize to have her needs met. Use cause and effect toys that activate with noise. Reinforce reaction to own name. Use hand under hand for "bye-bye".