Fall is here

I guess we can officially say good-bye to summer, the cool weather is a reminder that fall is here. One thing we really look forward to in the summer is going to the local farms for apple and pumpkin picking. The warm baked treats they sell are pretty good too. It is a good way to get fresh air and any way to get Elizabeth active without her realizing I am working her is the best. I love seeing how each year her endurance has improved as this year she was able to walk through the orchard and only needed a wagon ride back to the car, last year she spent a fair bit of time in the wagon.
Elizabeth is of course already talking about Halloween and told her teacher her favorite thing about Halloween is 'treats, treats, treats'. Elizabeth has already convinced me to decorate the house for Halloween and on Saturday morning we woke up to a child yelling 'boo' with cat ears and a tail.

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.

Big Girl School

Elizabeth started Senior Kindergarten last week and is loving big girl school. I have not been worried about how she would feel about Kindergarten because she is so easy going. Her first day of school she went off with the other kids and didn't even say good-bye. The little girls flocked to her as her outfit was pretty 'blingy' with her new sparkling lite-up sketchers and her bejeweled shirt all which she chose herself. We arrived at school with all the 'non-normal' first day items that I thought would help with her transition (maybe more the teachers transition), AFO's, handouts regarding dystonia, ataxia and Auditory Neuropathy, 2 Epi-Pens, weighted pencil and FM unit.
I was a bit worried about her going as when she met her teacher last week they gave the impression there would not be an Assistant for her, of course I was not happy. Luckily on her first day I met with the Assistant who would be available to help her get dressed and assist her with gym and recess. We also on the first day met the Itinerant for the Deaf who was there to set-up Elizabeth's FM unit which I was really impressed with.
All in all it was a good first week. There are things that we need to iron out but for now I am biting my tongue and trying to avoid being 'that' Mom. Hopefully as they get to know Elizabeth they will understand how much she just wants to be like her peers and will allow her the same opportunities, for now I will just hang on and wait.
You may have noticed in Elizabeth's pictures no AFO's, we are trying out some new ones and will post her progress soon.

Elizabeth had her routine hearing check at Sick Kids last week and as it is becoming quite monotonous. Elizabeth has to listen for the sounds and place pegs when she hears the sound, this is the same activity she has been doing for the past 3 years (see above old picture). I despise this activity for many reasons; the pegs I am sure have never been cleaned, she of course will still put them in her mouth, the abundance of pegs are tempting for Elizabeth and her sensory needs (she loves run her hands through the bucket), I have to attempt to distract her from running her hands through them and keeping Elizabeth still for any length of time is a challenge. Elizabeth does pretty good despite how boring it really is but after 10-15 minutes we have both run out of patience. We have had the same Audiologist since Elizabeth's Auditory Neuropathy diagnosis and she doesn't mind all Elizabeth demands for stickers and for her to play the animal that make sounds. We also saw her ENT and he is still amazed by her progress as she is one of the few children to not need a cochlear implant. Only 15% of babies with AN regain their hearing and she is one of them which is such a blessing.
Normally her test results show a mild hearing loss in her left ear and her right ear tests fine. Last weeks results showed her left ear with a mild hearing loss and now a loss to her right ear as well which is not typical and is not related to congestion. AN can be such a frustrating diagnosis as it is does fluctuate day to day and we do not know how much distortion Elizabeth deals with. A great example of how AN distorts speech is here.
We will go again in 4 months to be retested and hopefully her right ear will be better. It is a good reminder for me to increase how much we use her FM unit at home and when we are out but the times when she really needs she cannot wear it (the pool and gymnastics). I must remind myself to bring a different activity for Elizabeth, any ideas would be much appreciated.

Swimming

Elizabeth just finished another session of swimming lessons. I know I have said this before but she loves water, I think this a time she feels free. Sometimes this freedom she feels is a bit too much for her and she thinks she can just float away but at least this time they did not have pull her out from the bottom of the pool. She was able to hold still long enough for a back float and is beginning to swim a bit on her own (under the water). As usual we sit on the edge of our seats waiting for her to go under and this time was even worse because they were learning to dive in the deep end. I myself think learning to swim should come before diving in the deep end (with no floaties). Her instructor was great as well and she really worked hard teaching Elizabeth to pull herself out of the pool which too she is getting better at. We will sign her up again in the spring as I think I have enough white hairs for now.

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.

Puddle Jumping

Splashing in puddles is one of Elizabeth's favorite things to do and it is also a great way to work on her jumping. She is now getting both her feet off the ground at once when she stops and concentrates. Elizabeth is sporting a very trendy look of plastic bags over her AFO's as we cannot find a pair of rubber boots to go over her AFO's. Word of advice plastic bags over AFO's do not work they just hold even more water.

Seussical the Musical

Elizabeth finished 2 weeks of performing arts camp at her old pre-school. On the last day the students put on a performance with the senior campers. I was so proud of Elizabeth; she followed the routine perfectly and really did well keeping up with her group.
The performance this year was based on the Dr. Seuss book 'Horton Hears a Who'. This story means a lot to us as we would often read book this to Elizabeth when she was NICU. In an effort to save the 'Who's' living on a small speck Horton teaches his friends 'a person's a person no matter how small'. It is a great story that teaches acceptance and how to stand up for what you believe.
The video is bit shaky as I was giggling at how cute they were.

I am also pretty happy with myself, I uploaded this video to you-tube on my own for me this is huge.

Conversations with Elizabeth

Elizabeth has been asking lots of funny questions lately about babies and about what she was like when she was born. After reading a book she has on the human body and pulling the flap to see how the baby born she expressed her disgust that the baby comes from her mothers 'bum'. I explained where the baby actually comes from and she once again expressed her disgust. She then asked if she was born that way too, I explained that because she was so tiny and needing help the Doctor's helped her come out faster from a incision in my tummy. Elizabeth ended the discussion stating 'I hope the next baby is born out your vagina'.
At least this discussion was at home, many of our impromptu talks happen when out in public and she really catches me off guard.

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.