Tuesday, June 30, 2009

A great start for the summer

We are so excited, Elizabeth has learned to ride a bike. It has been something we have been working on for the last year and now she has mastered it. We went for a walk the other day and Elizabeth rode her bike for 10 minutes without tiring. Even this past week she has increased speed and took off down the street with me chasing behind. I am hoping soon she will have enough stamina to get to our nearest park. Once again Elizabeth we are so proud of you you continue to amaze us.

Thursday, June 25, 2009

Face Reality

Amongst a group of professionals discussions came up regarding why so much funding is allocated to children with Autism Spectrum Disorders and not to children with physical disabilities. Many hypothesis's were mentioned but one stung me and left me speechless; parents with children with developmental disabilities need to 'face reality' there is no cure.
I do agree there is no cure; my daughter will always be disabled (I can type this but I am not even close to uttering these words) but I strongly believe there are things we can do to improve her outcome. I do believe in neuronal regeneration and that early intervention is the KEY in improving the quality of life for our children. I do believe that all the early intervention and stimulation for Elizabeth has repaired some of the damage to her brain caused by her prematurity. I do believe that through CME therapy we have enabled our daughter to walk without a walker. I do believe that Auditory Verbal Therapy has given Elizabeth the language she has today. I do believe that Therapeutic Riding has enabled Elizabeth to sit in a chair independently. I do believe that with aggressive sensory stimulation Elizabeth's oral/tactile aversions are minimal.
Despite all of Elizabeth's accomplishments I still get that 'look' when I tell a professional that we have just completed a block of CME therapy, that look is followed by a 'hmmm' and if I could climb in their brain I am sure there is talk of denial, wasting time and money. I think it is such a shame that when a parent asks what can I do for my child that the response is 'nothing, no amount of therapy will help' it is crushing and heartbreaking because as a parent we all need hope for our children.
As for facing reality we face Elizabeth's limitations daily and she gets older she is becoming aware of her limitations. We are not in denial of Elizabeth's disability we know we will not cure her but if we can make life for her just a bit easier it is worth it.

Sunday, June 21, 2009

Happy Father's Day

We hope everyone had a great Father's Day. In an interview with Elizabeth here is the scoop about her Daddy.
1. What is your favorite thing to do with Daddy?
'He takes me out for ice cream'
2. What is Daddy really good at?
'He is a really good driver but sometimes he drives too fast'.
3. What did Daddy teach you to do?
'He taught me how to draw'.
4 What do you think we should get Daddy for Father's Day?
'A paralauphasurus'.
I think one of the favorite things Elizabeth failed to mention was her cuddles with Daddy. As Daddy gets up very early for work in the morning he often falls asleep with Elizabeth when he puts her to bed. All she has to say is 'Daddy just a little cuddle' and he is wrapped around her finger and passed out in her bed.
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Thursday, June 18, 2009


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.

Monday, June 15, 2009

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.

Friday, June 12, 2009

The Culprit

We think we found the culprit to Elizabeth's endless bouts of pink-eye. Elizabeth since February has had numerous pink-eye infections and as it spreads with lightening speed both her father and I have caught it as well. We have tried creams, drops, oral antibiotics, eye soaks and we would be infection free until it reared again. Elizabeth was a total trooper and tolerated being pinned down when I gave her drops. It became so frequent that Elizabeth would wake up in the morning and say 'oh Mom I have pink eye again'. I like a mad women bleached every towel in hot water daily, I disinfected everything in sight, changed soaps, threw out all my make-up and still it came back repeatedly. I started keeping track of all her pink eye infections and noticed it occurred on a Tuesday 2 days after she would go to her Therapeutic Riding. With this information we have tried a new tactic and give her antihistamine drops before and after she rides and now we are pink eye free. We are not sure if it is the dust in the arena or the horses that she is allergic to but the new drops are working. Above is a picture of one of our favourite horses Timmy who was dressed up for the stables annual Christmas open house. He really loved his new look. As for Elizabeth's riding she is doing great she can ride for longer periods with her arms up and her posture is improving. Now that is is warmer she rides outside which is a nice change.

Friday, June 05, 2009

A Failed System

Through creating Elizabeth's blog I have had the privilege to meet some really amazing Mom's who are in similar positions. Through chat groups we discuss our concerns, ask questions and support each other as we learn about raising a micro-preemie. There are some Mom's who are very present in our chat groups and who offer lots of support and advice. A recent thread on our list serve left us all speechless; a mother who is an avid member of our group has been charged with allegedly causing harm to her beautiful little girl. This beautiful girl who due to her prematurity has had some very challenging medical conditions and has spent much of her life in the hospital, with home nursing and in various therapies to help her overcome her challenges. The mother has kept a daily blog of her life and I have at time left encouraging comments as I think how hard it must be to have a child with multiple medical needs. This little girl has recently been hospitalized for weeks with undiagnosed symptoms/infections and due to this the hospital hid video cameras and observed the mother wiping feces into her daughter central lines (IV). The mother allegedly admits to this act which has caused her daughter to be gravely ill.
At first it was disgust that I felt as this child was suffering due to her mothers indescribable acts but then I thought about what would cause someone to do this their own child; mental illness, being unable to care for a child with medical and physical conditions or wanting to put her other children first. I am not condoning what this mother did at all, it is indescribable. But again it makes me realize how little support is given to parents with micro-preemies. Parents have spent months at their child's bedside with the support of Nurses, Social Workers and Doctors and when you have a question or concern it is dealt with immediately. Once you are home with your child the support is gone there are very few people who can and will answer honestly the questions you have about your child. Once you are home you are socially isolated as you are repeatedly told of the risks of RSV therefore most social contact is avoided. Your new life at home with your baby is filled with trips to Dr's, therapy sessions, RSV injections and advocating for your child. You as a parent are told by strangers how to interact with your child, how to pick them up, how to play with them and during all this you are watched and critiqued for your efforts or lack of. The beliefs and misleading information that your preemie will be okay once you are home hits you like a wall once oral aversions, sensory issues, reflux and developmental delays begin to arise. Being told that your child has a disability due to the fact that you could not keep them inutero long enough causes your 'mommy guilt' to go in overdrive. Through all this parents receive little to no social/emotional support and their concerns with their child are often ignored by health professionals.
It is amazing that through all this parents are coping as well as they are. Some Mom's I talk to have been diagnosed with Post-Traumatic Stress Disorder, Depression and Anxiety and through the help of medication and therapy they are coping better. Hearing the case of this child and what she endures makes me so angry at the lack of assistance/support for parents and the constant throne of the media that depicts preemies as unscathed by their early arrival.
What to do about it. I don't know but I did talk with a staff member of the NICU where Elizabeth was cared for and talked about a role of parent liaison or establishing a group for parents when their children come home. The system has failed this child and may have led her mother to do these indescribable acts. I hope that now this child's health will improve and she can go home to her siblings and her father and that her mother gets the help that she requires.