Saturday, July 31, 2010

Mold update

After a hard day packing up our worldly possessions, with two wonderful cleaning ladies and my parents in-laws helping us, we managed to get everything packed in boxes.

Tomorrow we move a mile down the road to a new house.

A nerve wrecking week of searching for a new place to live, with trying to stay in the same area so that my son does not have to change schools, and also staying in a one bedroom hotel all four of us, all week, my nerves were shot! We eventually got a call Friday morning (thank you Jesus) that we were accepted, and we get to rent the house we wanted.

Tomorrow we move in, hopefully a clean start, MOLD free!

This means tomorrow morning before they take our furniture to the new house, we have to wipe down every surface just in case any mold has settled. I don't want to be taking the mold with us. We have already thrown out any soft furnishings because it is very hard to get mold out of those by just wiping them down.

Annabelle has taken everything in her stride this week, only had one melt down in all that has been happening (which is pretty good for her even in a good week she can have more than one) she has been eating well and is quite happy, we suspect she is happy to be away from the mold or may be she is happy because mummys happy to be away from the mold, who knows?

We have seen yet another doctor, he specializes in environmental medicine so in other words things that make you sick from the environment, he has recommended a urine test for Annabelle this will test if any mycotoxins are coming out of her body through her urine, the results take 3-4 weeks I will keep you posted, next hurdle actully getting urine out of my daughter, who ever invented those pediatric bags to collect urine in babies was obviously a man because they do not work on girl babies.

Well see ya next post will be from the new house.

Thursday, July 29, 2010

The Mold Truth

No doctor has ever told us Annabelle will never, walk, talk, sit ect. No doctor has ever given us a prognosis, for them to be able to do that they first need to have a diagnosis. We don't have a diagnosis!

I read other moms blogs about how they were told there child would be a vegetable for the rest of their lives and never do anything and their child every day proves that doctor wrong by sitting, walking, talking.

We saw 2 new doctors at the beginning of this year and they ran some more tests, we did an EEG and a repeat MRI (the MRI we did at 6 months old was normal) from all of that we got that she had an abnormal EEG but she has no clinical seizures, and the MRI showed that she has a metabolic condition causing things to happen in her brain. All he other tests came back normal the last test that hasn't been done is a muscle biopsy where they cut a chunk of muscle out of your child's leg to see if the child has a mitochondrial disorder. May be all along the problem was right under our noses!?

Well here we sit in a hotel room because at present we are homeless, what started as a leak in the upstairs bathroom has now become a huge problem, walls being torn down and Mold found
behind those walls, and its been going on for a long time. When the remediation company came
in to start the work the guy said to us that we have to be so careful because mold is very
toxic and especially with young children, could cause problems with their development.
At that point he did not know about Annabelle.
Well alarm bells started ringing in my head and what did I do, I went straight to the Internet that place you go to when you want to "scare the hell out of yourself!" especially if you have an undiagnosed child.

Loads of sights come up scaring me more as I read what do I do, who do I call? Should we do tests? what tests? It's all a bit vague with no clear direction.

So I email the doctor that we have been seeing that prescribed HBOT, ask her what to do, she recommends that I call J to come in and do some tests in the house, we stop the remediation company from tearing down any more walls. J comes in the next day and does some air samples. He is also appalled at the poor set up the remediation company had and was really worried they had spread mould all over the house not just in the family room where the damage was.
The test results come back and yes there is mould in our house mostly in the family room and in his report he is most concerned about one type that is hard to capture and there was quite a high amount in the air. It's name I can't recall now but starts with a C, I google it and low and behold it possibly could cause neurological problems. We have been in this house 3,5 years, I was pregnant with Annabelle, she was just a small baby when I brought her home, all these things are going through my head, could this mold have caused all her problems no, no, no, stop yourself your hypercondriac self is showing up have we all been affected? My son suffers from chronic nosebleeds is that a side affect I have been coughing, sneezing since they came in and tore down walls?
OMG will this nightmare never end, will I never have peace, will I be searching for answers for the rest of my life!? This is the Mold Truth!

Sunday, July 11, 2010

Trying new things they might surprise you -VitalStim Update

It has been a month since we stopped doing VitalStim therapy and when the therapists told me that they thought we should take a break for 3 months my heart did stop for a while. I didn't think Annabelle was ready to stop the therapy especially not for 3 months. It's like somebody telling you to stop putting diapers on your child and you know your child is not potty trained, you will just end up with a big old mess, or will you? Will your child surprise you?

Well having a special needs child with developmental delays you become overly cautious about expecting your child to surprise you, as you have had months of wishing, wanting, praying they will surprise you (especially around Christmas and birthdays "wouldn't it be a great present if she just .... ?). This leads you to not trying new things and getting stuck in a rut of what you know they can do. This can be detrimental to your child's progress.

I have been in this situation all to often with Annabelle, scared to try new things because it might upset the status quo, but I am learning that sometimes you don't know until you try. The therapists seemed to be convinced that Annabelle was ready to stop therapy, but all I had in my mind was how she was like before we began therapy choking, coughing, gagging then refusing to eat. Well may be this time round Annabelle will surprise me.

Annabelle is still eating, swallowing and even drinking. We have less than 2 months to go till the swallow study we will keep you posted.

Annabelle decided to surprise us by sitting at the beach

Monday, July 5, 2010

Dive 35 - HBOT update

I was going to do a post about The Feldenkrais Method but still need to upload some video and so I thought I would do this post first.
Well here we are, in the HBOT chamber doing our 35th dive, time has gone fast and I really don't want them to end because we have seen a few good changes, here are a few we have noticed since we started 7 weeks ago.
I will try list the gains in the order we noticed them,

  • Hands softened and opened more (mostly tight fist most of the time before)
  • Lateralization of the tongue, moving tongue to side of mouth
  • New found interest in toys
  • Which leads her to crawl around the house more to find more toys
  • More interest in trying to open cupboards
  • Crawled up a step that was a foot high
  • Getting onto knees and climb into toy box with both arms
  • Cognitively - more interest at school
  • Making more sounds "v" 'b" "d" "g"
  • Ability to make choices better
  • Able to hold objects better, release better
  • Able to get hand to her mouth and chew on fingers
  • Pincer grip emerging (using thumb and pointer finger to pick things up)
  • Sitting more stable and arms supporting more
All these might not seem like huge gains or milestones to anybody that reads them but to Annabelle these are major breakthroughs.

So Martin and I have decided that HBOT has been such a positive therapy for Annabelle that we are going to continue and do another 40 more sessions Yippee! I am so happy.

Friday, July 2, 2010

Why? Why me?

Well we were at a Feldenkrais lesson today (that is going to be the theme of my next post I am still working on it) and I was talking to Elinor who is the practitioner. Elinor and I have been taping Annabelle's lessons and Elinor has been putting them up on You Tube for other practitioners to see and learn from, (if you want to see search "Elinor Silverstein") especially how to work with children, Elinor was saying how many emails she has received from practitioners all over north America and beyond, saying how much they are learning from the videos.
Then I said that was the purpose of doing all this work taping Annabelle was to inspire practitioners so that more have the confidence to work with special children and more children would be helped, and also if parents with special kids saw these, they might seek out a practitioner to help their child.
Then I said, and had an aaahhhhh moment - this is the reason why there are special needs children in this world because they inspire people not to be ordinary but extraordinary, to go beyond their capabilities. Learn new techniques, invent new techniques (feldenkrais, ABR, feeding therapies etc all are relatively new to this world ) to help that child develop. What kind of life this would be if everybody was the same, everybody was able bodied, intelligent, average!! Boring?
Elinor then said -well they won't know it!
Yes they won't know it for sure because until you are faced with the differences, faced with the challenges, faced with overcoming adversities, you just don't know it!
Like when before you had children you knew what it was like to stay up all night( par-tying or studying)it was all about you! But until you faced the challenge of of staying up all night looking after a sick child you just didn't know you could do that, that you had that capability in you.
I still remember when Annabelle was a small baby and she used to wake up frequently at night and not go back to sleep for sometimes 2 hours and I would nurse her and rock her until she eventually go back to sleep - and I would cry and cry and sob and think oh God why me? Why have you given me this child. Well I now know, to challenge me, to become a better person, and inspire, and challenge other people in this world too.
What challenges you? I would love to hear?

My son Matthew and Annabelle 8 months old - I always love rainbows because it always makes me think that no matter how bad the storm you can usually find a rainbow somewhere