Well it's been a few months since Taylor's difficult journey began. So very much has happened, and lots of things are currently in the works so I will try my best to update you on it all. It is quite long, so give this a read when you have 10 or 15 minutes.
First, I'd just like to say thank you so much for your support and encouragement, it's really what's helping us work through this emotional time. I haven't been very good at being in touch, either via phone or email. My world is a series of doctors appointments, therapist appointments, tests, program intakes, caseworkers, assessments, interviews, and information overload. So please don't take it personally if you haven't heard from me/us and understand that we're just still somewhat upside down and extremely busy. So many of you keep asking what we need, and we're still pretty unsure what that is, but I think what we need in the meantime is family and friends. We're not really in the right space to be the initiators right now (with everything else we're trying to stay on top of) but really would love to hear from you, chat on the phone, get together, anything! If we're home, we do answer the phone. If not and you don't hear back right away, just keep bugging us!
So...when we left the hospital in March we didn't yet have the results of the Visual Evoked Potentials (VEP) test. This test was to determine if the signal was getting from the optic nerve back to the part of the brain that is responsible for vision. The results showed that it was. We saw the Opthamologist at the end of March and he did an examination of Taylor's eyes. The structure of both eyes was normal, and the nerve was also normal. Based on Taylor's behaviours in response to various tests and visual stimuli she was diagnosed with Cortical Visual Impairment (CVI). So, her eyes are normal, the nerve is normal, the signal is getting from the nerve to the back of the brain, but her brain isn't interpreting the signal. Your eyes focus, but your brain "sees", is how it was explained to us, and the doctor says that she sees light, colours and shapes, but not images. This explains why she has always preferred lights and not faces or objects. Over the past three months we have noticed a definite improvement. Where three months ago her eyes were all over the place, never fixing on an object or face, and never following anything with her eyes, her eyes are now much calmer, she focuses on objects and faces and follows them briefly. This is all very encouraging. We have been referred to CNIB (Canadian National Institute for the Blind) to access their services for children with vision loss. We went through the intake process at the end of May and we have a Functional Vision Assessment booked for the middle of July. This is done at CNIB and will help determine what things/colours/areas capture her visual attention. An Occupational Therapist from CNIB will then work with us in our home to help appropriately stimulate her vision.
The other outstanding test results when we left the hospital was the ABR (Auditory Brainstem Response). This is a neurological test of auditory brainstem function in response to auditory stimuli. Taylor's results were abnormal in both ears. This is going to be repeated in the next month or two as well as some other test that I can't remember right now. Infants with abnormal ABR results do not necessarily have hearing problems. Taylor does startle to loud noises, and is recently turning her head to figure out where the sound is coming from. The Neurologist is very encouraged by this, so we'll have to wait and see what the further testing reveals, if anything.
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| Taylor's First Easter |
At the end of March we began therapy with Infant Services at Children's Hospital, which is a program for children from birth to three years of age with neurodevelopmental concerns. They focus on movement (rolling, sitting, crawling, walking, running), communication (talking, understanding, gestures, signs), play and attention (using toys appropriately, increasing attention span), hand skills (eye-hand coordination, reaching, grasping, manipulating), feeding (self feeding, texture progression), self care (bathing, dressing), behaviour (sleep concerns, temper tantrums, aggression), family well-being (family relationships, coping, community resources), equipment (walkers, braces, seating, bath seats), growth and weight gain. The Team is made up of a Physical Therapist (PT), Occupational Therapist (OT), Speech-Language Pathologist (SLP), Social Worker, Psychologist and Clinical Dietician. They explore the child's strengths and needs, provide information about child development, discuss and demonstrate ideas to try at home with the child, offer emotional support, coordinate services, advocate for parents and child, and provide links to other programs and resources.
We have been to Infant Services appointments at Children's for PT and OT every 3-4 weeks. They have given us many different exercises to work on her head control, to encourage her to push up when on her tummy, to help her discover her knees and feet, encourage her to reach, and work on supported sitting. Her head control is progressing, slowly, but progressing indeed. I can't wait for her to be able to hold her head. Tummy time is coming along, she doesn't like it, but she's able to go little bits longer each time. She's pushing up for short periods with her arms bent and elbows still behind her shoulders. The goal we're working on now is getting her to push up on straight arms. She's still doesn't reach for anything or grasp objects. She will hold onto your finger, and if you put a small/thin object into her hand she will hold onto it briefly. She does seem to notice her hands from time to time. She brings them together and is clasping them now too. She still has closed fists with thumbs tucked in, but is relaxing and opening them up more often. The OT is making a splint for her right thumb at our next appointment, as it seems to be a little tighter. Because she's not reaching yet, she still hasn't made contact with her knees and feet, so we're still working on encouraging that with positioning and guiding her arm from the elbow. The other goal for now with all the exercises is learning to sit on her own. Right now she can't even sit with support, she flops over to one side or the other. We have been referred to seating clinic and they will be able to design an insert for her stroller so that she can sit in it without tilting over to one side. They will also assess whether or not she needs other equipment to assist with seating. She's now outgrown her infant tub and at our last physio appointment they ordered a bath seat for her. I'm not sure how long it takes. It's kind of like a lawn chair with mesh fabric, a reclining back, straps to secure her and a head support. It fits inside a regular tub, and if she isn't reclined too far back there should be enough room for Marissa and Taylor to have bathtime together.
The exciting news is that she learned to roll over and it happened quite quickly. Around 7 months she started twisting her body when she was on her back and very soon after she was rolling onto her side, but her arm kept stopping her from getting all the way over. Within a couple of weeks she figured it out and now she's rolling easily from her tummy onto her back and sometimes from her back onto her tummy.
We started Taylor on solids and it's going really well. It's pretty messy because she is very wiggly, but she's doing great. When you hold the spoon at her eye level and bring it down towards her mouth she opens her mouth almost every time, so I think that's one of the areas that captures her visual attention.
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| First taste of solids |
Since birth, Taylor's breathing has been very gurgly and it's far more pronounced during feeding. They are concerned that she may be aspirating (taking some fluid/food into her breathing tube). She has been referred to another study where they will put barium in her bottle/food, and put her behind an x-ray while feeding so that they can watch it move down and see if she is inhaling any of it. If she is, treatment could be as simple as thickening up her fluids, or as serious as requiring her to be tube fed. That was the lovely news I was told at the Pediatrician this morning.
The Pediatrician has also put her on an inhaler. Last week when we saw him he was hearing wheezing. She can't be on ventolin (salbutamol) because of her arrythmia so he put her on one called Alvesco. It is an inhaled corticosteroid that helps to control symptoms by decreasing inflammation in the lungs, thereby opening the airways and improving breathing. Where salbutamol is a "reliever" medication used to relieve the symptoms of wheezing, the Alvesco is a "controller" medication to prevent the symptoms from occurring. She has been on it for a week and when he listened to her chest today there was no wheezing. The wheezing could be asthma, but aspirating her fluids/food can also cause wheezing. To air on the side of caution he would like her to stay on the inhaler for the next few months while things are sorted out and whether she is aspirating is determined.
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| Mommy's favourite photo |
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| Sleeping beauty |
In April we were assigned a caseworker with FSCD (Family Support for Children with Disabilities). FSCD is a Government of Alberta program that provides supports and services for children with disabilities and their families. We met with our caseworker in early May. They have put funding in place to cover sibling care for Marissa while we are at appointments for Taylor, as well as funding for weekly respite care so that I can have breaks. They are paying for parking and mileage for our appointments. And the very best thing is that they are providing us with a developmental aide in home for 2 hours every day (not weekends). This is being provided through the Infant & Family Support program at Pacekids.
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| Her SIN card arrived in the mail! |
Pacekids is a non-profit organization which provides learning programs tailored for infants and children with special needs. In the Infant & Family Support program, parents and children learn functional skills through interactive play in the Pacekids' classroom and in the child's home. Developmental aides are assigned to work with the child daily, on a one-to-one basis. The purpose of this program is to assist children in achieving goals in the areas of behaviour, communication, social interactions, cognition, motor development, mobility and functional living skills. Pacekids programs help kids discover their hidden potential. So often, children with motor disabilities and special needs have intellect and abilities that are hidden by their difficulties to communicate or demonstrate. The right combination of support and encouragement can draw out a child's potential and build on his or her abilities. The earlier the child's intervention begins, the greater the benefits. Pacekids classrooms bring together small groups of children with similar requirements. Contact with other children provides motivation and modeling that promote confidence, learning and social development. The children learn at their own pace while having fun with their peers in an inclusive and accessible environment. Their approach empowers parents with information and skills to successfully meet day-to-day challenges and to help their children develop. Parents and caregivers find the resources and support at Pacekids to guide them from diagnosis and information gather, through assessing the services they need, and on to developmental successes.
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| Mother's Day |
Mondays through Thursdays the aide will work with Taylor and I at home for 2 hours a day. On Fridays we go to Pacekids for the 2 hours with the aide and we are all together with other children and their mothers and aides. This gives us the opportunity to connect with other families. I went with Taylor to Pacekids last Friday and I think it's going to be so helpful to have people to talk to who are in similar situations. We got a call this week that Pace has found us an aide so the details will be ironed out over the next week or so, we will meet with Pacekids and FSCD to set goals, and the aide will be able to start with us at the beginning of July. I am so incredibly thrilled that I will soon have daily support at home for Taylor and am hopeful that it will help her progress in her development.
We continue to see the Neurologist. Taylor did have one episode of very mild infantile spasms (seizures) about a month ago. They bumped up her medication a bit since it is based on weight and she has grown since she first went on it. Those mild spasms were the only instance of them re-occurring since the medication got them under control by the 8th of March. The Neurologist is very encouraged that the medication is working and that she has not relapsed with seizures, because this form of epilepsy is very difficult to control. He is also encouraged by the progress that she has made.
I sometimes get caught up wishing that she was further along, but am trying really hard to focus on the fact that she has made some progress and that is very positive. Three months ago she really wasn't doing anything. Now, although she still isn't smiling (which breaks my heart), her head is getting stronger, her scattered eye movement has calmed down and she fixates on things, she turns her head to figure out where a sound is coming from, she clasps her hands, and she's rolling over! When I look at her today versus three months ago, I have hope. I will never forget the doctor telling us that Taylor will never develop as a normal child. What is "normal" anyways? What her future holds may be uncertain, but what we know for sure is that we are going to do everything we can to help her along her journey. She was brought to us for a reason and we will all be touched by the lessons she has to teach.
