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".

Caught on Camera!!!

Tonight Marissa was blowing raspberries on Taylor's tummy and she smiled right after. I quickly grabbed the camera and told Marissa to keep doing it. I managed to catch one on camera after several attempts and that annoying delay with the digital camera. She looks so very beautiful. So sweet that it was her big sister who made her smile. SOOO excited that we captured that special moment, I will never forget it.

Most beautiful smile in the world

Intensely investigating her hand!

Happy Birthday to Me!

Today is a BIG day!!!! Taylor smiled at me, I couldn't ask for a better birthday present. We were at my Dad's for my birthday dinner and Dad was sitting on the floor with her. I walked up and leaned in to say hi to her and she looked over at me and smiled. How beautiful. This is the best day. Here's some cute shots with a flower in her hair...

New Medication

Well, we saw Dr. Sarnat today, Taylor's Neurologist. He had the results of the EEG and said that it did show an improvement, as it did not show the hypsarrythmia which is the pattern characteristic of the infantile spasms. We were always told that little ones do outgrow infantile spasms and most often develop other forms of epilepsy, and it appears that it is already happening. While he said the EEG shows improvement on the one note, he still said for us to know that it is still very abnormal with alot of seizure activity. The seizures are now myoclonic and partial. Myoclonic seizures are brief, shock-like jerks of a muscle or a group of muscles. Most of Taylor's movements are still very jerky so we're not really sure how to identify what might be a seizure. Partial seizures are more difficult to understand, so I don't have anything to write about that yet!

Since the seizure types are changing and the hypsarrythmia is no longer present, Dr. Sarnat is going to start a new medication called Topomax (Topiramate). It will gradually be ramped up over the next few weeks and then the Sabril will start to be weaned off. This is good news to us because the Sabril can have quite significant side effects on vision.

We have our surgery date now for the muscle biopsy, coming up on September 22nd. Dr. Sarnat will see us again a few weeks after that and he will have the results by then. He's also going to send Taylor for another cranial MRI. They will be able to see more on the MRI now that she is older, so I'm quite anxious for that. It will be a few months before that happens though, hopefully before Christmas.

Taylor's been grasping certain objects with her left hand for a little while now, but last week for the first time she held onto something with her right hand. Go Taylor!

Left hand hold

First hold with her right hand

No hands!

Keep Talking...

Today was therapy again with Infant Team, here are their recommendations for us back at home...

• Continue talking with Taylor and copy her sounds. Sit face to face and try making sounds (ie tongue clicking, raspberries) and wait to see what she does.
• Encourage reaching to request by holding favourite things just out of her reach. Once this is consistent, then try choice making.
• Do let Taylor have some time out of the splints, work on exploring textures.

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.