Yet Another Test

Taylor had another EEG today. We're quite anxious to find out the results of it as we've been a bit concerned that we're seeing seizures, but it's hard to know because what she's doing is quite different from her initial seizures. We see the Neurologist in a few weeks and we'll fnd out then. She's such a trooper through all of these tests, and constantly amazes me with how well she takes it all. 20'ish wires stuck all over her head, then it gets wrapped up like a mummy and she needs to sleep for it, I gave her a bottle and off she went, just like she was asked. That's my girl :-)

We also had a consult with Dr. Wong in Surgery Clinic today. That was a bit of a gong show. Waited in the waiting room there for about 3 hours before we were seen. All for nothing more than a consult. Good grief. We met Dr. Wong, he'll be doing a muscle biopsy on her sometime soon. The Neurologist wanted us to have this done when we were in the hospital back in March, but we managed to put it off a while. It's just day surgery, but we still weren't too keen on poor Taylor getting cut. They still don't know what the cause is for the onset of the Infantile Spasms, so they want to do a muscle biopsy to look for Mitochondrial Disease. Hopefully it will just rule that possibility out, because it's not a good news story.

Sounds Good To Me!

Yippeeeeee...a good news appointment!!! We went to hearing clinic today at Children`s and Taylor checks out a-okay from an auditory standpoint. They did an ABR test (Auditory Brainstem Response) which is a neurological test of auditory brainstem function in response to auditory stimuli. They test a range of several different tones including normal talking level, as well as lower than that and higher. Every level showed a normal...yes NORMAL...response! This is great news. One less thing to worry about :-)

When Lana comes to work with Taylor, she brings these shiny purple pom-poms. Little girl loves them. Could we have a future cheerleader on our hands?!

Seating Clinic

Today was our first appointment at the seating clinic to assess Taylor's current seating needs. We brought her high chair and stroller and they made foam inserts for both to give her more support. How a few pieces of construction foam can cost $200 is beyond me! Thank goodness for coverage is all I can say. AADL (Alberta Aides to Daily Living) covers 75%, then we pay the remaining 25% to a maximum of $500 every calendar year for all our equipment needs. And that 25% is covered by Francis' company benefit plan. I'm somewhat skeptical about these foam inserts, I don't think they're going to cut it, but we'll give them a try.

Getting inserts at seating clinic

A keeper you sure are!

Chillin at the lake

Vision Assessment

Taylor had a Functional Vision Assessment at CNIB (Canadian National Institute for the Blind) today. It went really well, her visual attention has improved so much over the past four months. The assessment looked at many different things...

Her pupillary response was good, both eyes reacted well and equally to light. Children with vision loss will often gaze at lights or may be very sensitive to different types of light. Taylor has always looked towards lights, and she is sensitive to sunlight (she closes her eyes or looks down). She enjoyed viewing coloured illuminated targets and didn`t cringe when they used the penlight to check pupillary reaction.

Her eyes are well aligned with occasional movement of her right eye towards the nose when she was tired. Blink response was present to both touch and fast approaching objects, but inconsistent to noise.

Fixation is seen when a child looks directly at a target and maintains this gaze. Taylor`s target preference was best with yellow and blue lights followed by red light and the high contrast of black and white. Holding a moving object was not helpful, made it harder for her to maintain gaze. Distance was best from 1 to 2 feet. She occasionally noticed more distant objects but did not maintain her gaze or follow as long.

Visual fields are the areas where one can see visual targets. Taylor can see to about 30 degrees from midline at eye level on right and left, above eye level to eyebrow on both sides, but below eye level it was difficult to get her visual attention. Using central vision is best for her.

Tracking is the ability of the eyes to follow a moving target. Taylor tracks until 45 degrees right of midline and then loses target. Tracking smoothly using yellow sparkle ball horizontally. Less smooth and slower vertically. More difficulty tracking diagonally and with less preferred targets. Able to find the target again often when she lost it while tracking.

Convergence refers to the eyes moving towards the nose to accommodate for objects approaching midline. Divergence occurs when the eyes move away from the nose to focus on an object moving away from midline. Only slight convergence was noted and then she diverted her gaze.

Taylor does not have object permanence. This is the understanding that when an object is moved, falls out of sight and is silent, the object still exists. She also does not show shifting of gaze, the ability to quickly shift fixation from one target to another, either at the same distance or between near and distant objects.

Video Fluoroscopy Swallow Study

There has been much concern on whether Taylor is aspirating (taking food and/or liquid into her airway). She's very gurgly, has been since birth, but it's most pronounced when she's feeding. She had a Video Fluoroscopy Swallow Study done today which is a moving x-ray that shows swallows of food and liquid so that they can see if her swallows are going down the food pipe or if they are getting into her airway. It was very cool to watch actually. She was positioned upright in a special seat and I stood gowned up infront of her feeding her spoonfulls of food when prompted by the technician, as well as formula from her bottle. They put barium in the food and formula so that they could see it in the video x-ray. As I watched onscreen, it looked just like an x-ray of her mouth and throat, but it wasn't a typical picture x-ray, it was moving. So I could see the food sitting in her mouth and watch it move down after she swallowed. Very cool. But the coolest part was the confirmation that she is NOT aspirating....thank god. No more worrying about my sweetheart needing to be tube fed. HUGE relief.

At Taylor's therapy appointments with Infant Team, she always enjoys being in the "Little Room". It's basically a sensory room to stimulate sight, sound and touch. Last week at our therapy appointment my mom was looking at it and said, "Ya know...Bryan could make one of those". So we took lots of pictures and got measurements and we're putting him to work!

There are many benefits of the Little Room...

• develop an awareness, existence, recognition and memory of objects
• an environment where they learn to be independently active and have success from their own explorations
• experience, explore and experiment with objects independently as a way to learn
• begin to establish concept of object permanence
• stability of the equipment and arrangement provides the child with certain feedback on each movement
• experience without adults interpreting for them (the less we interfere with their initiation and exploration, the more they are able to learn)
• the child becomes an active participant in learning instead of passive recipient of information
• learning will become part of the child's personality
• learning opportunities develop from the child's activities
• individual need successes for development
• motor skills (grasp/handle/manipulation of objects)
• location/position of certain objects (object/concept permanence, spatial recall)
• sensory integration (associate kinesthetic/auditory/tactile)
• control of muscle strength
• cause and effect
• auditory experiences (echoes)
• receives feedback from unintentional movements
• motivating the child to produce intentional movements and sounds
• child can listen and learn about sounds they produce...teaching the child they can produce object based sounds
• cognitive skills (problem solving, comparing, sequencing)
• growing familiarity allows for comparison of different tactile experiences, increasing perceptual fields
• increased vocalizations and vocal play

"Taylor Made"...

We were at Children's today for our regular therapy with Infant Team. Our little trooper got her very own "taylor made" hand splints today! Because she is still fisted most of the time with her thumbs still tucked in like a newborn, the OT (Occupational Therapist) recommended Thumb Extension Splints. The purpose of them is to keep her thumbs out of her palms and encourage grasping, which she still isn't doing (other than fingers).

The PT (Physiotherapist) said that it's wonderful to see how well Taylor is fixing and following, and that she thinks the smiles are coming, that's exciting. In therapy we continued working on positioning...

On her back "curled in"

• put rolled face cloths behind Taylor's shoulders to help bring her hands together and to help her reach
• put a towel roll under her bum to promote bringing her hands to her knees and help her discover the lower half of her body

Sidelying

• try to improve her tolerance of this position
• takes weight off the back of her head
• brings hands together

Tummy (bring her arms under her body and help lift her chest up)

• Taylor works on lifting her head, holding it up, and pushing up through her arms/shoulders

Supported Sitting

• give her high trunk support
• work on Taylor tucking her chin while pulling her up to sitting
• work on holding head at midline
• support her head and challenge her trunk with weight shifts

Carrying

• choose times to challenge her to hold her head while being held

Experience a variety of movements

• if adequately supported, Taylor may enjoy swinging, quick movements, etc.

Sitting in highchair

• round in the shoulders and support at hips

Sigh of Relief...

It's a good week! Lana started yesterday as Taylor's Developmental Aide. Two hours every weekday, I'm so hopeful that we're going to start seeing more progress with our beautiful Taylor. I have also started using respite as of today. Part of our contract with FSCD (Family Support for Children with Disabilities) provides funding for respite, someone to come to the house and take care of the girls so that I can have a break for four hours every week. I have been trying to figure out how to go about finding such a person. At our monthly parent support group through Neurology at Children's, one of the other moms spoke very highly of Postnatal Helpers for respite care. So I called them and today was my first 'break'. It went really well, Marissa liked the caregiver and Taylor's pretty indifferent so she was content. I had some nice downtime reading for a while at Starbucks and then did some errands. I can't believe how fast the 4 hours went!

Race for Pace

Today we participated in the Race for Pace! It was a fun run and walk in support of Pacekids Programs, which Taylor is now part of. We managed to raise about $1,500 in pledges, so thank you so much to those of you who helped out. The weather ended up being beautiful. Taylor was awake for the start and for the finish and she collected her first medal.

Back From Beaver Lake

Spent the past week at Beaver Lake for our 4th Annual family fishing trip hosted by Mom & Bryan. Jaime & Justin couldn't be there this year between Justin's job and Jaime's c-section, and we missed them lots. My cousin Erika got to fill the spot and brought lots of laughs. Got back tonight, had a great time, and Francis took the trophy away from Bryan...wahoo!!

Taylor did really well, slept in the playpen all week with no complaints. She's had a tough time with some teething. Her second tooth just broke a couple weeks ago and I think she's working on the next one already. She woke up one morning with the brightest red cheeks I've ever seen. Tylenol seemed to do the trick when she was really fussy, and other than that, she spent the week lounging like only a baby can!

Big sister Marissa had a great week between fishing, the little beach, the great playground and the petting zoo. The girls were both amazing on the road, very happy car travellers which made for very happy parents.