Seizures Continue

Back to our Neurologist today. Taylor had a cranial MRI a couple of weeks ago and Dr. Sarnat went throught the results with us.

He said that it showed good maturation taking place. He also said that there was some improvement in the thickness of the corpus callosum. This was very surprising to us as we were of the understanding back in March that this malformation would not change, that the corpus callosum was thinner that it was supposed to be and always would be. So this is a positive thing for sure. I'd be hooting and hollering if it was the only reason for Taylor's developmental delays, but it's only a contributing factor.

The other contributing factor is the seizure activity. Because Taylor is having so many seizures, the brain just cannot organize itself to allow normal development. Her seizures are myoclonic bordering on infantile spasms, which they say are the worst kind because they are the most difficult to control. They're multi-focal, meaning they come from different parts of the brain. If they were focal, that could make her a candidate for a surgical approach.

The change in the dose of Sabril has not made any impact on the number of seizures, so the next line of treatment being recommended is prednisolone, a steroid. It has many side effects, it suppresses the immune system, increased appetite/weight gain, ulcers, etc. But it can be very effective, so we're going to give it a try. She'll start it right away and we'll cross our fingers that this is the ticket to control.

The last reason behind Taylor's global developmental delay is the 'unknown' factor. Her epilepsy is "idiopathic", a special word basically meaning they have no idea why she has it. In all of Taylor's tests, metabolic workups, muscle biopsy, etc...they have not found anything that they can say is the cause of her epilepsy.

New Ideas...

Taylor's presentation to Dr. Dulac was this morning. I've never seen so many doctors in one room, all eyes on my little girl. Dr. Sarnat had given him her history beforehand, then Dr. Dulac took some time observing Taylor and examining her before he said anything. He came across very warm, very gentle.

Taylor's been on Topomax since August and based on the EEG from 2 days ago, it's not doing anything to control the seizures, so Dr. Dulac's recommendation...medication wise...was to wean her off it. We had already started to wean her off the Sabril, but his suggestion was to actually bring it back up and increase the dose slightly. All the information that we previously had about Sabril was that it was to be used short term because of the side effect of toxicity to the retina, causing peripheral vision loss. He indicated that those side effects were more to do with adult patients, not children. Further, it was beneficial to give it once a day, in the evening just before bed, rather than twice a day as we had been. Reasoning being that the drug would work its way through the bloodstream over the next several hours while it's dark and her eyes are closed, but it still acted as an anti-convulsant for up to 48 hours. If this change doesn't have any effect on the number of seizures over the next few weeks, his next suggestion is steroid treatment.

Dr. Dulac stressed that the most important thing is to get the seizures under control, because the next high risk period is 2-3 years of age, a time where there is such an incredible amount of cognitive development. Such frequent seizure activity is hindering Taylor's ability to develop, so seizure control has got to be the focus.

Unfortunate Confirmation :-(

Well today was the EEG. I sat there holding Taylor after all the wires were attached to her head and recording was under way. The technician was watching the screen, and asked if Taylor just had one of her jumps. I said "yes" and she responded "okay". A few seconds later I said "there's another one" and she responded "uh huh". So I asked her straight out if they were seizures. Her response was "I'm actually not allowed to say, let's just say this is a VERY productive recording". I felt sick as I sat there thinking of how many months we've been watching Taylor have these seizures and we had no idea.

Seizures???

We saw Dr. Sarnat today and addressed a concern that we suspect Taylor has been having seizures for quite some time, but we didn't realize it.

At therapy recently, Taylor's physiotherapist noticed one of them and said she thought that it looked like a seizure. She has these startle type jumps as if she heard a loud noise across the room, but she has them constantly even in complete silence. When she said that to us I got very nervous, because she has so many of these, constantly all day long, and we've been watching her do that for months. Gulp. Never for a second did we think those could be seizures.

So Dr. Sarnat is sending Taylor for an EEG...TOMORROW...now that's impressive. What's more is later this week she's also being presented to a visiting doctor from Paris. His name is Dr. Olivier Dulac, a leading Pediatric Neurologist and world expert in Infantile Spasms. What an incredible opportunity to get the input of another seasoned Neurologist.

Mommy Went Shopping...

So Francis said that if I ever bought shoes for Taylor I'd be toast (because Marissa has quite the collection of hand-me-downs).

HOWEVER, Taylor's physiotherapist said that it's important for her to have shoes with good support on when she's in the standing frame. AND Marissa's hand-me-downs don't include proper shoes in the right size, Taylor's feet are pretty tiny.

Clearly, under these circumstances, a shopping trip was necessary. Taylor is the proud new owner of her first real pair of shoes. And aren't they gorgeous! Daddy can't even complain because they were on clearance for JUST $16.25 (regular $65)! What a bargain, I should have bought more :-)

Bad Hair Day...

Have you noticed Taylor's crazy hair and wondered what the heck we were doing?!

Well let me clear up a couple of things. No, there is not product in her hair. No, we are not intentionally going for the "faux hawk" look. But YES, it has a mind of its own!!! It's quite long all through the middle and as much as I comb it down after she has her bath, it just springs back to life as soon as it's dry ... too funny! My friend Kim said that it kinda looks like Mt. Rundle!

Little Miss Rundle ... crazy hair or not ... you're beautiful to me!

Torture Device???

Does it look a little like poor Taylor is being punished?!?!

Not really! We were at Children's today for therapy and Jeanette brought in a standing frame for Taylor to try out. Taylor needs to work on standing and this is what she needs to help her since she can't do it on her own. It's time for her to start weight bearing through her legs and work on developing muscle strength. We're supposed to try it for 15 minutes twice a day and build up to an hour a day. We were able to take it home and we can hang onto it until we can get one of our own ordered. Our next appointment we'll be looking at the "Buffalo" and that's likely to be the one we'll get.

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Not the most attractive addition to my living room, but it sure is nice to see Taylor upright instead of lying on the floor! She seems so much bigger! Marissa thinks it's pretty cool, except she keeps referring to it as "the ugly thing" ... I think she heard me describing it as kind of ugly ... oops!

Just Keeps Getting Better

Another great day for Taylor. The Occupational Therapist from CNIB (Lara) was here this morning for a home visit. She did a contrast test on Taylor to see how much contrast Taylor needs to capture her visual attention. She did awesome!!! The test was simply showing her an assortment of faces on big white cards. The first one was a black and white face, which is 100% contrast. They went down from there and the faces looked like a lighter and lighter shade of grey on white down to the very lowest which was nearly white on white. Taylor managed to see all the way down to only 5% contrast!!!! The 10% one was better, but the 5% contrast did capture her attention. Way to go girl :-)

Lara said that we can start working on establishing object permanence so that when Taylor drops an object and it goes out of sight/sound, she will learn that it is still there and that she can find it again. By using objects with noise like bells or rattles or squeaky toys, when she drops it we can make its noise and see if she turns to look for it. If not we can guide her hand and or body towards it. In time she will be able to find the object again after dropping it, rather than just thinking it's gone.

Holding on Tight!

Look at my talented little girl, doing a NEW first. She's holding onto her sparkly wand with BOTH hands and holding it up high and she's totally focused on it. Taylor has been holding onto the right item (has to be small enough) in her left hand for short periods for a little while now and recently started doing the same with her right hand for even shorter periods. Last week she held onto the wand with both hands and today I managed to get it on camera. I'm a very proud mommy, these little milestones mean SOOO much.

Happy Halloween

Happy Halloween everyone! Isn't my Taylor just the cutest little ladybug you've ever seen?!?! We paraded her around Southcentre Mall in costume while Marissa did some trick-or-treating, then she was my partner back at home answering the door to all the wee trick-or-treaters who knocked. Sadly there weren't that many, which means we have hoards of chocolate left over. Oh darn, I guess we'll just have to eat it ourselves :-)

New Set of Wheels

Well, it looks like Taylor`s near future is going to include a wheelchair. This is a difficult one to swallow because it draws attention and screams out loud that something is wrong. We truly believe that this is just a short term need, at least until she can support herself in a sitting position which is likely to take another year. As much as I don`t like the idea of a wheelchair, the support that the insert will give her is amazing. For her hips, her trunk and her head.

The foam inserts that they originally made to put in her stroller just aren`t working, they don`t give her firm enough support and she`s always flopped over with her head hanging. The wheelchair and insert is fully adjustable as she grows, so for where Taylor is at right now it really is going to give her the support she needs. We`ll have to manage with the stroller for a bit longer, it can take up to 3 months to get the wheelchair, seems like such a long wait.

It`s so easy to stare at people in wheelchairs or with at people with special needs, I hate to admit that I`ve done it myself. Boy does it ever feel different to be on the receiving end.

Black & White Birthday Party

Today was a great day! Taylor celebrated her birthday with the Dengis' a few weeks ago and today we had a party at home with my family, a few of our close friends, and Francis' parents were able to make it down from Medicine Hat too. We had a black and white theme. It is what Taylor sees best, so we wanted her celebration to be as stimulating for her as possible. We decorated with black & white streamers and balloons, we had a black & white birthday cake, presents were wrapped in black & white, some of the gifts themselves were black & white, and almost everyone was even dressed in black & white. It was great! Taylor was a happy little birthday girl, she enjoyed lots of cuddles, let Marissa open all of her presents, and indulged in a little birthday cake. What more could a 1 year old ask for :-)

Last Holter???

Well, we went to Cardiology Clinic today for them to put a 24 hour holter monitor on Taylor for hopefully the last time! They just want to see if the arrythmia is still gone since she's been off the beta blocker meds. Once our Cardiologist, Dr. Clegg, has reviewed the results she'll let us know and hopefully that will end our need for Taylor to have a Cardiologist!! One less doctor, one less med, it's all good :-)

Surgery Clinic

Back to surgery clinic today, this time thankfully there was not a 3 hour wait, we got in pretty much right on time. Dr. Wong is pleased with how Taylor's incision has healed and he has given us several sheets of DuoDERM dressing. We just cut it with rounded edges a little larger than the scar itself and stick it over like a bandaid, and change it every 5 to 7 days. There's something in it that will help the scar heal nicely, turn white, and prevent the line from thickening. He also gave us the name of a scar treatment gel in the US for us to order, called Dermatix, so we have ordered that too.

Sensory Room

Well today at Children's our Infant Team appointment was in the Snoezlen Room, a sensory room. Taylor really enjoyed it. She's always liked looking at lights, and in this room they dimmed the main lights and had several different 'light' things for her to explore. There was a tunnel we put her in that was all black with thousands of tiny fibreoptic lights around the ceiling, I wanted to go in there myself :-)

There was a bubble tube with a switch to change the colour of the light shining in it, a huge gently vibrating beanbag type chair, and these skinny (like spaghetti) light tubes. I wish we had some of those at home. She enjoyed lying on her side and looking at them, they changed colours too. There were other things in the room, but I think that was all we used today. We'll have to go back another time for sure.

Happy Birthday Taylor!!!

Our beautiful Taylor is officially 1 year old! In many ways this year has been long and very trying, but I still look at her and can't believe that she's already ONE! Where does time go?! We just spent a quiet night at home, gave Taylor a couple presents, and her very first taste of cake. We had some mini "Crave" cupcakes and with a little assistance from Daddy, she sucked back that icing with no trouble whatsoever. I'm sure she'll find breakfast disgusting tomorrow now that she knows what other yummy things are out there!!! Too funny. After all the excitement she passed out in her high chair surrounded by her gifts. Oh to be a baby :-)

Wahoo!

Taylor does NOT have Mitochondrial Disease!!!!!!! Dr. Wong called today with the good news. He got the results of her muscle biopsy and it didn't show any abnormalities. This is a GIGANTIC relief. Mitochondria are what give every cell in your body energy to sustain life. But I don't care anymore because that is one road we DO NOT NEED TO TRAVEL DOWN :-)

Celebration With the Dengis'...

Taylor's cousins Stephanie and Leah planned a joint birthday celebration today for three of the Dengis babies. Taylor & Clara (Stephanie's daughter) are both turning 1, and Leah's son Scott is turning 2. It was a great day with the Dengis', fun to watch the wee cousins play together, and a nice chance to visit everyone. Daddy got to take Marissa and Taylor to the party but unfortunately I had to miss the festivities as I was in Vancouver for another celebration, the beautiful wedding of a dear family friend. Thanks Steph and Leah for putting on the party!

Therapy Kind of Day

The therapists at CNIB and Children's are partnering to provide group therapy sessions so that we as parents can benefit from the expertise of professionals specializing in infant development and vision loss. The point of the group is to provide parents the opportunity to network and share ideas, to support parents in facilitating skill development in all developmental areas during every day activities, to provide parents and child the opportunity to practice these skills, and to increase awareness of additional resources.

The first session was today on sensory exploration. They had several stations set up including a vibration mat (which Taylor loved and then fell asleep on), the little room (always a hit with Taylor), messy play on a lightbox wrapped in saran wrap (we skipped on the messy stuff and found some squishy stuff in ziplocs instead), various musical instruments (that we didn't get to), and "Nessie", a huge musical water instrument (unfortunately Taylor didn't find that too interesting today because she was tired).

This afternoon we had an appointment with Infant Team back at Children's. We're still working on much of the same positioning techniques but talked about a few new things...

• From her back, pulling Taylor up to sitting, allowing her to put her arm out to start pushing through her arm and pulling up through side.
• When on her tummy, pulling one leg in at a time towards hip to help her propel herself in commando crawling.
• Try pausing in movement games like bouncing on knee and waiting for Taylor to "tell us" (ie facial/body movement) that she would like to continue.

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".

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