Time to tell

Part of my job at work is working in our Neuromuscular clinic, there we see many young boys who have been diagnosed with Muscular Dystrophy. This dreadful disease causes a progressive deterioration of their muscles leading them to an early death. We often discuss with the families how and when to tell their child about their diagnosis; some parents handle this awful task bravely and some avoid it at all lengths leaving these smart boys to find out on their own. Sitting in on these discussions I thought about the talk I haven't had with Elizabeth.

It took a couple of weeks to initiate it and each time I thought about doing it I felt sick to my stomach and then I would remind myself that other families have to give such tragic news to their children.

One day while putting on her AFO's she asked why she and her fiance (yep still engaged to her little friend who also has CP) needed to wear them. So impromptly the discussion began; I explained how she was so tiny and fragile when she was born and how hard she fought to stay strong and come home. Then I explained just like the scars she has on her body she has one in her brain that we can't see but that scar causes her muscles to be weak and her balance to be off. I explained this is called brain damage, it won't get worse but will always cause her to have difficulties with her walking. This whole discussion I am trying not to let her see me cry as it kills me that we even have to talk about this.

Elizabeth is satisfied with what we talked about and even during breakfast blamed her brain damage for some spill she caused. She often now will ask about her other friends with CP and if they were baby birds too. For now I just reply that yes they have a scar in their brain too.

On the Bench

As Elizabeth is doing better at gymnastics and has a young fearless coach I now get to sit on the bench with the other parents and watch (at the edge of my seat). Usually I had joined her and helped her as needed. As I sit on the bench I get to watch other kids and listen to their parents.
I am sure other parents of children with disabilities agree that they often feel very conscious of what others think about their children. I am very aware of when others stare at her or make comments about her. I see how some parents roll their eyes when she takes longer and causes the other kids to wait their turn. I am aware of the complaints to the staff regarding Elizabeth being in their child's class but fortunately for us their 'fair play' rules allow Elizabeth to participate with her peers. I see the kids rush to get in front of her so they don't have to wait and I have even seen a child step over her when she has fallen down just so she could ahead of her.
What I was not prepared for at her last class was to sit by a Grandfather who did not know Elizabeth was my daughter and listen how he was describing to his son a little girl with 'determination, spunk and perseverance' he remarked over and over again how much she improved over the past couple of weeks. He noticed me giving her a thumbs up and asked if I was her mother. Trying to fight tears I told him she was my daughter and thank you for seeing her how we do; determined, spunky and a girl who tries hard in everything she does.
Check out the clip below, she wowed us with walking along the wide balance beam and stepping over obstacles while in her Superwoman suit.

Preemie Brain

After many sleepless nights worrying about the results of Elizabeth's psychological/educational assessment the results are back. I think we have both spent this past month bracing ourselves for the worst as we have been really worried that Elizabeth will be diagnosed with Asperger's Syndrome. Since she has started school she has been doing some pretty odd things (spinning things, constantly moving and I am finding her on her own most often when I pick her up from school). We of course have been very observant of 'symptoms' lately and I am sure we have been on Elizabeth when she does something a bit odd (sorry Elizabeth).
The results did not show Elizabeth is on the Autism spectrum at all (YIPEE). So now we can breathe a huge sigh of relief and know that we have a really quirky kid who now will be allowed to play with her dinosaurs again (I had them banned as she REALLY likes to play with them). She did show pretty typical features associated with ADHD which is not much of a shocker for us she is pretty distractable and still quite impulsive. Similar to previous testing she continues to have problems with visual spatial skills and ranged from the 9-28 %. Her fine motor skills were below the 9 % which we know; despite her best efforts printing is still difficult for her to do because of her shaky uncoordinated movements. Her language skills made us proud as they were ranked at 7 years 10 months for both receptive and expressive but her poor articulation of words still makes things difficult for her as not everyone understands her.
The recommendations for her include; an FM unit which we luckily have, a computer/assistive device for typing as printing is far too difficult and time consuming and close supervision to ensure her safety. The Psychologist said because of her advanced language skills Elizabeth hopefully can compensate for her visual spatial skills as she can understand through description of problems as opposed to looking at them. Her thoughts were Elizabeth should do fine with an academic program with the appropriate support.
We are pretty happy with the results of her testing, the things we had been warned about when she was born regarding ADD, visual processing were present so all in all she has a pretty 'typical' preemie brain.

I was approached by a colleague at work who had just finished a course from Cascades. As part of the course my colleague would receive a free pair of AFO's and she thought Elizabeth would be great to try them. I have been looking at these AFO's for awhile but did not want to invest money buying something that we have not tried.
Elizabeth was fitted for the Cascade Jump Start Bunny orthotics, these ones help to minimize knee hyperextension and keep her foot in proper alignment. We really want to work on Elizabeth's strength and increase her muscle mass to her lower legs and her old AFO's do not allow her to do this.
The bunny's have been great and she really likes them. They do limit her knee extension when she stands and they allow her to sit more comfortable on the floor which is great for school. The bunny's also help keep her feet from dropping when she rides her bike. She still needs the support of her regular AFO's for playing outside and walking distances as she will complain of knee pain at night if she wears them when she is active. We are hoping with her new phsyiotherapy block she will get some increased strength and be able to wear her bunny's when she is active too.

We will take option 'No'

What I despise the most in the summer is going for all Elizabeth's medical appointments. I absolutely hate spending a summer day sitting in dirty hospital waiting rooms trying to keep her occupied (as above we were playing playdough that I had stashed in my purse) and fighting hours of traffic to get in and out of Toronto. Elizabeth continues to puzzle and baffle every Doctor we meet with her varying symptoms. This summer we have seen some of her regular Doctors and also some new ones each one mystified by this 'very interesting and bright child'. As her Movement Disorder Specialist is away we met with the Doctor who trained her. I thought Dr. L in in his endless years of working may give us a glimpse as to what her diagnosis is. Dr. L. was interested in how she moves and specifically how she gets up to standing (think beginning walker on both feet and then pushing up with her hands). He feels she has both Dystonia and Ataxia but is not sure why, he does not feel this is related to prematurity. He was honest in stating that there was nothing than can be done for Ataxia presently and at least he was not too favorable of deep brain stimulation. The only options left for diagnosing were muscle biopsy and cerebral spinal fluid testing, we opted 'no thanks'. We also have seen the Geneticist who once again found Elizabeth's symptoms puzzling and does not feel her balance issues relate to prematurity. Her options; more blood for DNA testing and repeat Friedrich's Ataxia testing (this will be her 3rd time being tested) to rule out a rarer form. She also questioned whether Elizabeth has Perrault syndrome but this cannot be tested presently so we would need to wait until she hits (or doesn't due to the syndrome) puberty. We once again opted for 'no thanks'. Both Dr's think that her hearing impairment (Auditory Neuropathy) may be a key to her diagnosis as it is recently being linked with many disorders.
We feel all this invasive testing at the present is not fair to Elizabeth. A diagnosis of a rare syndrome will not change who she is or what we are doing for her and the search to find out why she is the way she is would just add extra stress on her and us. Her Neurologist was not too happy with our decision and said it could impact her children but Elizabeth has lots of time to decide what she wants done with her body until then we will stick up for her.
We of course tomorrow need to get up at the crack of dawn to see her Audiologist and the ENT, I hope it is rainy so we won't be cooped up on one our few summer days we have left.

Next Time Decaf

After a year and half wait list Elizabeth is now having her psych-educational assessment. Depending on my mood I am okay or anxious about this testing, some days I think she will fly through this testing and they will tell me that she is a very smart girl who will do great and other days my fears are they will come back and tell us she has ADD and/or Asperger's. We feel that this testing is important so her teachers can adapt to her learning needs early on. We have no doubts about her ability to learn as she truly is a walking encyclopedia but her intense knowledge also makes us nervous because she really knows too much for a 5 year old. She continues to be impulsive and distracted at times but it is improving.
Elizabeth did quite well from what I could hear (Mommy's are not allowed to be present) I could hear her singing and giggling during the testing. Me on the other hand not too good the stress of the impending results had me edgy but the biggest problem is I drank a large Starbuck's Iced Coffee just prior to her testing. I don't drink coffee (hot or cold) and I should have thought that Iced Coffee contains caffeine (duh) but I drank a large from a freebie Daddy had got. Those were the longest 3 hours I have spent in a very small waiting room with nothing to do and on an extreme caffeine high. Of course the secretary was sitting near me and I was trying to be still so she would not report me to the Psychologist. To top off our day I had promised to take Elizabeth to a nearby splash pad for a treat for her hard work and of course when we got there it was closed so she at the end of her rope had a meltdown with crying and retching but we got sorted out when I found a nearby outdoor pool for her to paddle in. It took about 7 hours for the caffeine to clear my system even after lots of water and a run.
Elizabeth begins part 2 in a couple of weeks and next time I will be prepared with a decaf tea and a juicy book to pass a couple of hours and I will ensure that her reward won't be a let down.

Confessions

I really try on our blog to emphasize all the amazing things that Elizabeth is doing because she wows us everyday but some days parenting Elizabeth is hard. It could be that Elizabeth is starting a growth spurt and I am sleep deprived because of her waking but I am finding myself short tempered with her. The things that she cannot control get under my skin and make me snap at her. She is very twitchy lately including in her sleep and her twitches include flailing limbs; her flailing knocks over drinks, sends cutlery flying, breaks things and leaves us in bruises. Her distractedness and impulsivity are pretty fierce right now and she needs constant reminders to pay attention to what she should be doing. I am constantly telling her to stop talking which kills me as we worked so hard to get her to talk but she often is too busy chatting to pay attention to where she is going and puts herself in danger. I hate to admit this but there are times when I want to walk without her because walking with her is still painfully slow. Because of her dystonic movements and her distraction walking with her feels like
I am in a funeral procession as we walk slowly to our destination.
I hate that I get upset with her because these are things that she cannot control. On a good day I try to teach her to be aware of others, slow down with her movements and think about what she is doing and we replay what she she should have done but on days like these I yell at her and put her on a time out which I hate. I constantly question myself am I being too critical, too short tempered and am I asking too much of her? I know I should be grateful of how far she has come along but sometimes I hate what her prematurity has done to her and how it has impacted our family.

Trotting

Elizabeth has started trotting at her hippotherapy now and of course she loves it. Elizabeth and her instructor (with much of Elizabeth's persuasion) have worked out a plan, if Elizabeth works hard in her session she gets to end with a trot. It is just a brief trot but she squeals with delight when the horse speeds up. Watching her is like watching a rag doll being bounced around as she still has pretty low tone in her trunk but she hangs an with a big grin. She now is doing most of her session holding on the reins which shows how much of an improvement she has made. Elizabeth has tried a couple times to get her horse into a trot when she shouldn't but so far the horse has not been persuaded. Elizabeth is already upping her requests to begin jumping but for now we will keep with trotting.

Olympic Spirit

Elizabeth has really been enjoying the Olympics and we have been having some Olmypics events here at home. Elizabeth loves watching the skeleton race so we have devised a skeleton run with the board that Daddy uses to work on his car. Elizabeth has perfected the pose that the riders do with their head up and legs straight and squeals with delight as Daddy pushes her around the house. Using Ramon's CME boxes we devised a bobsled run with organza and a rubbermaid box, I am not sure what Ramon would say of his use of the boxes but at least we got the dust off them.

Knees

Elizabeth's poor knees they are causing her so much pain and discomfort. This has been going on for the past year and it comes in spurts but this week has been horrible for her. The pain we think is related to her hyperextending her knees with the most strain on her Rt. knee, when she walks or stands she pops back her knee for stability (as you can see in the picture of her Rt. knee). Certain activities such as bike riding, swimming, walking without AFO's, sitting in the car too long and extended walking really aggravate her pain, we try to be be careful but at the same time she needs to keep active to keep her strength. We have tried so many things to prevent her knee pain; rigid AFO's, AFO's up to her knees, a Benix knee brace, kinesiotaping, heat, Motrin (we are going through a bottle a month), massage and creams. Elizabeth during the day does not complain regularly of the pain but lately she is chewing her fingers and when asked she says her knees hurt, Elizabeth describes her pain as 'a hundred owies biting my knee'. Nighttime is the worst time for Elizabeth, she is up for hours and up frequently in the night writhing and crying. Her sleep lately is so disturbed that she is wetting the bed and during the day she is miserable. During the night we use heat, her Voltaren cream and Motrin and that lasts a couple hours and she is up again. I try not to get in the habit of sleeping with her but on some nights the only way to soothe her is by rubbing her knees. Lately we all have been miserable as we are all very sleep deprived. I talked with her Developmental Pediatrician and she was able to get us an earlier appointment with the new Orthopedic Surgeon as she is very concerned. We will see her Pediatrician for a check up this week as I just want to make sure there is nothing else I have missed and it is not a referred pain. She will also go and see the Orthotist to review her AFO's and see if there is anything else we can do to her AFO's to make her comfortable. We are also starting another block with her PT to work on strengthening to hopefully help her not put as much pressure on her knees. I so worry what it will be like for her when gets older, I see what her dystonia/ataxia/hypotonia (still waiting for a diagnosis) does to her little body now and I cringe to see what it will do to her as she ages. My last thing to try is for her to see a Chiropractor I just need to find some extra time in her busy schedule.

Gymnastics

We have come to a point with Elizabeth where physiotherapy sessions were not benefiting her as a child as a whole. Elizabeth does well at physio she does what is expected and works hard but it must be stressful for her to have to comply while being watched and coaxed by therapists. She was not being socialized with other children only to adults in her weekly phsyio. We enrolled her into gymnastics and for the past year and a half she has been thriving in gym class. In gymnastics Elizabeth is being challenged physically and she is also being socialized with other kids, she is waiting her turn, talking to other kids and getting out in the community.

Elizabeth loves gymnastics and her long time teacher loves having her in the class. I stay with Elizabeth and help her as she needs help for most things, Elizabeth is not physically able to do what the other children can do but she is mastering things on her own pace. Two of the biggest things she can now do is jump on the trampoline (she can actually lift her feet up and can jump for up to 5 consecutive jumps) this is HUGE for her. The other thing she can now do is when holding onto the uneven bars she can lift her feet to the bar, when we started she could not even bring her legs up an inch.

What I love about her current gym class is there are only 3 kids in her class and they have the gym to themselves. Distraction is still a big issue for Elizabeth and the limited kids keeps her engaged. We just have get her teacher to pay as much attention to the other kids as she does for Elizabeth as you can probably see the poor little guy in her class is bored to tears, I spend a bit of my time in the class praising the other kids as they feel a bit left out. Elizabeth still goes to biweekly physiotherapy as it is important that a trained professional keeps an eye on her and helps her progress but being in the community is just as beneficial.

Confused

These past 2 months have been extremely busy with appointments for Elizabeth and I can pretty much say not one of them has helped us at all, it has only left me more confused. We met with her Movement Disorder Specialist, a Metabolic Dr., saw her Developmental Pediatrician and her Neurologist. Most Dr's have their own opinion regarding Elizabeth and why things are so difficult for her. Her Movement Disorder Specialist stands firm that it is Dsytonia related to her Prematurity (which I would assume is Dystonic CP), the Metabolic Dr. was leaning towards a Cerebellar Disorder, her Developmental Pediatrician did notice some dsytonia on assessment and and her Neurologist feels strongly Elizabeth has a genetic Cerebellar Ataxia (not at related to her prematurity). We did go over MRI number 3 with her Neurologist and he agrees this is not a degenerative disease (we can cross off one thing) but that the atrophy of her cerebellum, basal ganglia and superior vermis is not related to prematurity. He wants us to go back to Genetics and ask her to be tested for genetic Cerebellar Ataxia's.
After meeting with her Developmental Pediatrician we agreed to Dystonia and I have accepted it as much as I can but now after meeting her Neurologist I am so confused and fed-up. We are getting near the date of when Elizabeth needs to be enrolled in school and a diagnosis is needed to get her services and support at school. I am so tired of dragging Elizabeth from hospital to hospital to see Specialists and I cannot forgive myself if I have to pin her down one more time while somebody pokes her. Elizabeth needs to be at home playing with her friends, playing with her toys, getting fresh air, eating at the table (we have so many meals in the car) and working on the areas where she has difficulty. Elizabeth should not be sitting in rush hour traffic watching her DVD's and be exposed to so many nasty hospital germs. I don't know what to do now, I will talk with her Developmental Pediatrician to see what she suggests, for now I am hiding from Genetics who have called again wanting to book us in. I will leave you with some pictures Elizabeth had taken while I was talking to her Dr., this was an especially fun day as we waited 3 hours to see this Doctor.

Jumping

Elizabeth is desperate to jump. She frequently is in awe of other children jumping and asks me why she cannot jump too. At her gymnastics it is somethings that we struggle with as a lot of the exercises involve jumping. She has a trampoline at home and she recently has began to jump on her trampoline while she is holding on to the bar. To see if we can help her with jumping independently we are using Ramon's philosophy 'train the brain' and using his CME Medek jumping exercise to teach her how to jump. The exercise mimics what her body would do if she is to jump and with enough repetitions she should have the skill mastered (I think it is 1500). The biggest obstacle for her being able to jump is her uncoordination which sends her limbs flying in all directions when she tries to jump, the CME exercises puts her body through the motions of jumping. She has been working hard with Dad at her jumping and today at gymnastics she jumped a couple of times and actually got her feet off the floor for a brief second. Her gymnastics coach and I were ecstatic and Elizabeth was so proud of herself.

What to say

Elizabeth's Resource Consultant met with us to discuss Elizabeth's progress in the JK program. Elizabeth is doing great; she is initiating play with some of the children, she is sitting her in new chair and completes her seat work independantly and is answering all the teachers questions correctly (even if it is not her turn). Elizabeth has decided to call herself Eliz and now signs her schoolwork with Eliz which I think is pretty smart as Elizabeth is such a long name to print.
One thing her RC mentioned was other children are noticing Elizabeth's differences and asking questions and how would we like her to respond. What do you say to other children without labeling Elizabeth and having her stigmatized? Do we talk about how she was tiny when she was born and needs more time to get stronger or do we say she is wobbly and needs extra help? Do we have this discussion with Elizabeth present and include her? I thought we had a couple years before these questions would begin.

CME Medek

Recently our local news ran a story about CME and the work of Ramon Cuevas. Elizabeth's first Physiotherapist Simona is also featured in the clip, Elizabeth took her very first steps with Simona.

We feel very strongly that CME Medek has enabled Elizabeth to walk independently, I am fairly certain that without CME Elizabeth would be using a walker. A couple of weeks ago we saw Elizabeth's Orthopedic Dr (the one who told me it was time to get Elizabeth an electric wheelchair to keep up with her friends) and she could not believe the progress Elizabeth has made in the past year HA HA.

Presently we are not doing CME at home as Elizabeth is walking quite well but we are ready for the next growth spurt to begin again to give her stability.

Checkout this clip.

http://news.globaltv.com/programs/16x9/Walking+Tall/1980901/story.html#

Labile

Labile was the word the Nurse used to describe the mountain of emotions Elizabeth is going through at the present. I have been playing phone tag with the Nurse this week to decide what to do with Elizabeth and the horrible side effects she is having from the Artane. It pretty much starts as soon as she wakes in the morning looks outside and cries out 'mama there is no sun, oh I am so sad' and it goes in waves throughout the day. Her once a week meltdowns have turned into 5-6 a day of inconsolable crying over fairly minuscule things and at times Elizabeth is so beside herself she just climbs back in her bed begging for a nap. We have tried to ride out the symptoms and there are days when she is better but as soon as we increase her dosage (as ordered weekly) it starts again. We are also finding she is beyond distracted, extremely spacey and quite constipated. For us to know if the Artane helps her dystonia we need to reach the highest dose and presently she is on 1/3 of the dose. We have noticed she is walking better and she is spending less time in her AFO's but is it the Atrane or is just her continuing to improve?
We cannot abruptly stop the Artane as it needs to be weaned slowly. We are hoping that in a couple weeks time she will be back to her old self as things have been pretty rough for her and us. We are so looking forward to having the the mischievous witty kid back.

It's Back......

The brush is back, we hope just for a short time but for now it is needed. I don't know the reason maybe beginning school, her new medication, less time in the pool and a busier schedule but Elizabeth has been a bit 'off' lately. Her anxious behaviors are creeping up, she is humming a lot and clapping her hands, she is really needing tactile stimulation and is finding it in inappropriate ways (pebbles at the park, rubbing food on her face, rolling on her mega blocks and squishing her food). We have tried to give her extra time the bath and the sandbox but it did not meet her needs, her father thinks that not even a bed of nails would meet her current needs. We in the past have tried the 'wilbarger brushing technique' and found it kept Elizabeth calmer, less sensory seeking and less overexcited (and at school it kept her out of trouble). Elizabeth giggled when she saw the brush and savors every moment of the brushing and asks for more on her hands and feet. It is a bit of a time consuming method and we are only doing it in the morning to help her get through school but hopefully it will help her get over this rough patch.

Exciting News

I don't want to jinx this but Elizabeth has been off her stomach meds for 2 weeks. Since she came home from the hospital she has been on meds to control her reflux and I dreaded that she inherited my awful stomach and is succumbed to a life of reflux. We have had a couple of gags when she is hungry but that is pretty normal. We are still keeping the head of her bed up and I have have not heard one gag at night. I hope this will be the end of the reflux chapter and it is something we can cross off her list of diagnoses.
The exciting news for Elizabeth is that it was cold enough tonight for her to wear her new dinosaur pajama's. I have not let her wear them yet as it has been too warm. Each morning Elizabeth comes into our room naked (getting undressed is a new skill as well) dragging her pajama's stating 'Mom, brr it's cold in here I think I need my dinosaur pajama's'. I am sure there will be shrieks in the morning when she wakes up wearing her coveted pj's.

Done!!!

We have officially finished our Toronto block with Ramon and I think we are all relieved that it is done. Elizabeth once again was so good, she works so hard and never complains. While she is great during her therapy we can see the stress it causes on her as her anxious behaviors have crept up again; our 2 markers are hands in her mouth and her toilet paper fetish which both have have reappeared. We have lots of pictures and videos (which I need Daddy to post) but as we need pictures of the block configurations there are few of Elizabeth at work. Now we must sit down print the pictures and add them to her home program binder. Ivan and I have noticed some changes in her walking with seeing Ramon, she picks her knees up a bit more and can walk up the step at her school on her own. Once again it really is an honour to have Elizabeth work with Ramon, he truly is a remarkable and dedicated man.
Elizabeth for all her hard work enjoyed a lunch a Rainforest Cafe and a couple of new toys, I think she could have got a new car out of if she tried as were so proud of her hard work. We even this week celebrated a full day at home which is a milestone as I don't think we have had a full day at home for months lately. We tributed our day with Elizabeth's favorites; making Popsicles, playing in her sandbox, playing in the water and having a backyard picnic.

Elizabeth's Day of Colour

We are having our first fundraising day for Elizabeth. My cousin who is an extremely talented Designer has volunteered her time for Elizabeth. We have secured a venue where she will meet interested parties to answer design/colour scheme questions for your home. Wish us luck for this weekend we are hoping to get enough appointments to make use of my cousins time.

All the funds raised will go towards CME therapy sessions for Elizabeth.