Sunday, November 28, 2010

So Thankful

This thanksgiving week we have been in Morro Bay it was a vacation we planned long before we knew we were moving back to England. I was annoyed before going away that we had so much to do and going away would stop us getting things done, and that it wasn't good timing just before moving! It was planned to celebrate my father-in-law 70th birthday and Thanksgiving, together in Morro bay.

The Boys went fishing and caught a fish.

But this week has not been what I expected, it was great to get away from it all. My stomach has been in a knot with all the things that have to be done, things we still have to sell or give away and doing budgets figuring out if we can afford to get through it all without bankrupting ourselves. So to get away and take a step back from it all has really helped us see things clearer and relax about everything, things don't seem as bad as they did a week ago.

Annabelle sitting more and more

Having a special needs child is a bit like this, you constantly have this knot in your stomach about what the future holds for your child. You are so close to the everyday problems, in the thick of things, that you can't see an image of your child progressing, and seeing other children progressing can really make you sad and overwhelmed, such as when I saw Charlie from Bird on the street sitting up, the thoughts running through my head was real happiness for Charlie that he was sitting but sadness that Annabelle wasn't. I just couldn't picture her sitting up, it just seemed impossible at the time! I knew that we were doing similar therapies but that doesn't mean that your child will follow the same path. Sometimes you have to take a step back, and accept we are not in control ( even if you would like to be) away from all the therapies, the supplements, the doctors and relax! Then that image of your child progressing can form in your head. Your child can relax too.

Very happy to be on holiday with Nanna and Grandad
I have been exhausted constantly on the go from therapy to doctors to more therapy sometimes we just need a break.
I am so thankful for the time to relax and spend time with our family to create our future together and when you relax, and leave the things that are out of your control, the plan becomes clear.
Happy Thanksgiving everybody.

Thursday, November 18, 2010

Banana love affair

Yes my child is in love with bananas she will eat them for breakfast, lunch and dinner. She will even take her medicine with no complaints when its mixed with .. yes you guessed it.....bananas. This morning it was like she was in heaven eating her banana. Rolling it around her mouth even getting good lip closure (for those of you who don't know the world of special needs terminology - kiddo's with oral motor issues usually have trouble closing their lips hence a lot of kiddo's drool a lot.) Because Annabelle has oral motor issues and swallowing issues she battles with movement of her tongue and movement of her lips and coordinating it all so that she can eat - But it seems not when it comes to bananas.
So bananas will be on the menu for the foreseeable future.

Well you are probably thinking, if you have been following our blog, what happened to the swallow study that we were supposed to do? If you want to catch up here and here .
We were due to do a repeat swallow study to see if there was any regression after having stopped doing the Vitalstim therapy for 3 months.  To see if she has started to aspirate again. Well it has been 5 months since we stopped Vitalstim she has not had a chest infection, bronchitis, pneumonia in this time ( this would definitely indicate that food/liquids when swallowed was going into the lungs, meaning she was still aspirating) and she hasn't so that's good news. Also since we left our previous house the vomiting has been minimal and she is still eating and drinking well.

So I emailed the therapist that used to see Annabelle for Vital Stim and we have decided to put the swallow study on hold for now because Annabelle is going through this detoxing of the mold toxins and to subject her body to unnecessary test which includes X-rays (radiation) would be silly, when we can see clinically that she is doing a lot better. Just in time to eat all that turkey next week for Thanksgiving.
"Get me out of these pumpkins and give me a BANANA!"Said Miss Lip

Monday, November 15, 2010

If only we knew....

This ones for you Sharna - a Purple Couch
Caramel Macchiato mmmmm

Tonight I was chatting with an old friend on FB, we used to work together in England. We became friends because of our love of coffee, we used to go to Starbucks in our lunch break order Caramel Macchiato's and sip them and lounge on these wonderful purple couches they had there, until it was time to go back to work. Sometimes we used to moan about work, well actually all of the time we used to moan about work, little did we know how good we had it back then!

We said that we longed for those days and would love to have the freedom we had back then, we have fond memories of those days. We both said that every time we pass a Starbucks we try recreate those times and remember each other. But it's just not the same now.  There are no Starbucks in Perth Australia where she lives now, and the Starbucks here in California don't have couches and you don't get coffee in proper mugs only in paper cups. And of course we both have 2 children now and there is always something on the To do list and there certainly is no time for lounging. 
The fond memories need to stay in the past.

You need to appreciate the moment you are in now. Back then we didn't really appreciate those moments, where you bond with friends and they leave a mark on your heart forever.

Saturday, November 13, 2010

Take a look at what I can do now!

 Where is the video camera when you need it? Anyway, we took photos of this amazing thing Annabelle did last weekend at our last California ABR satellite. She was on the floor crawling around, while I was learning the new exercises for her. She crawled over to the stroller pulled herself up on it, Cristina our trainer went behind the stroller to support it and then she pulled herself up to stand while being supported by the stroller. We, us and another family in the room also training, all watched in amazement at what Annabelle did. We all were dumb struck.

Saturday, November 6, 2010

"No matter where you go, there you are"

So today and for the past week we have been selling our worldly possessions, Craigs list, Ebay, and then this morning a Garage Sale.

We have been in the USA for 4,5 years and our Visas run out May '11 my husbands employer wants him back in the UK to manage things in Europe now. We have taken this opportunity to make a clean start, sell everything that could have possibly be contaminated by the mold, and live simpler lives.

If there is any slim chance that Annabelle could be still affected by the furniture that was in the house and if it means that we have to get rid of it, we are willing to take that chance by getting rid of it. Our daughter has done so well since we have moved and her life is far more important than a couch that we own or the clothes that we wear.

At the moment we are trusting God to lead us he has promised that with Him all things are possible and I believe he is showing us the way we just have to listen to him.

The title of this blog "No matter where you go, there you are" I never really understood it until recently I was chatting to Elinor, Annabelle's Feldenkrais practitioner, and it came up, Yes we are moving back home, yes we are leaving everything behind, no we are not trying to run away, we are still who we are, we still have deep feelings of sorrow for what has happened to our daughter and to our family, we have had to face some hard stuff, loss of our health, our home, our worldly possessions. But we still have each other, we still can laugh, cry and love. And most importantly we have God to help us through.


Wednesday, November 3, 2010

Mold Case Part 4

Previously on Mold Case Part 1 and Part 2 and Part 3

We were ready to leave it all behind.... what have we decided to do?
Read on and you will find out.

So last Thursday we drove up the coast 3 hours to get to Santa Barbara (wow California is beautiful! You tend to forget how beautiful when you are rushing to therapies every day!) to go see a Doctor who is a mold specialist. She was affected by mold sickness herself and now treats mold patients. I had sent her all the test results before hand so she could revise them, so after a short history she started to do an extensive treatment plan (5 pages) for Annabelle, here's a shortened version:
She said Annabelle's body has been subjected to many toxins and is like a barrel that is filled to the brim and possibly over flowing. Her body is finding it difficult to process and eliminate these toxins and to develop at the same time, so what we need to do is eliminate all toxins in her environment and also try to eliminate the toxins inside her body too, to help her heal.

Environmental controls
  1. Avoid exposure to water damaged/moldy environments
  2. Avoid exposure to pesticides, solvents/VOC's (paint, carpeting, adhesives furniture, cleaning products personal care products, smoke, traffic pollution, Plastics, heavy metals, Dry cleaning
  3. Clean all household with baking soda, vinegar, Borax including clothes.
  4. Organic diets minimizes exposure to pesticides and other contaminants
  5. Filter drinking, bathing and washing water
  6. Use a triple element air filter
  7. Create bedroom sanctuary un-carpeted room with healthy non-contaminated bedding and sleeepware
  8. If outdoor air quality is good spend as much time outdoors
  9. Spend time daily in sun without sunblock
Just to add this in for those who don't live in California this is a fumigation tent that is put over the whole house and pesticides are pumped into the house and left there for 16 hours then they take the tent off and it kills all the bugs. This is what I came home to on Friday morning, this is the house next door and this is after the Doctor had specifically told us to avoid pesticides well to say the least I freaked out.

We called the company and made sure they secured the tent down properly so that none would come over to us they assure us they would. We closed our windows and went out the whole day when the tent came off so that we wouldn't breath in any of the pesticides! This is just one of the challenges we have faced this past week.

Internal controls

She has also prescribed Cholestrymine (this will help bind the mold toxins in her system and excrete it in her stool) to be taken with Charcoal also a binding agent
Nasal Fluconazole spray for her nose
Ketoconazole shampoo to be used all over her body for the rashes she has.

She recommended this great soap which we all tried tonight its by Collective Wellbeing Detox Charcoal Cleanse Soap  we really felt good after using it

Warm Epsom salt baths with 1 cup of espom salt per bath

Sauna therapy ideally with far infared sauna

She also has given us Nasal glutathione to be used in conjunction with the glutathione cream

Supplements - she has recommended an whole bunch of new ones to add to the ones she is already taking I will be taking that slowly introducing one at a time.

We talked about what to do with our furniture and she recommended we get in touch with Jack Thrasher Phd which we did. He did not say yes or no directly he said that mold affects different people in different ways some people will be fine taking their stuff and would have no problems others who are more sensitive would not be fine with taking their stuff. This includes clothes even after washing them. Which we did take with us. And until we go away and leave our stuff, clothes and furniture we will not know how badly its affecting Annabelle just like we didn't know how badly the house was affecting her before we moved.

In the mean time while we make up our minds about what to do we have done a huge clean, washing everything in Borax and wiping everything with hydrogen peroxide. Making her bedroom a sanctuary.

Watch out mold spores your days are numbered!

Monday, November 1, 2010

Halloween 2010 pic's

We had a great time trick or treating last night, Annabelle had fun in her stroller watching Matthew and our next door neighbors kids running up to all the doors asking "trick or treat" and then getting a whole bunch of candy.

Annabelle chose a lady bug fairy costume, Matthew was a storm trooper, and Martin decided to be James Bond in shorts??? Very dashing! We had loads of fun.