Burnt out

Moving country is a one of the big stressful things you can do in your life, it's up there with getting divorced and losing a loved one. Before we left California I was running around like a headless chicken trying to get in as much as possible (that is therapies). Just to list them, 2 times Feldenkrais a week, 1 times osteopath a week (all the way down in San Diego), NAET allergy elimination, we had started this in December after a very good friend convinced us that this would be very good for Annabelle to help her get rid of her allergies and help her absorb her nutrients better we did over 20 sessions with Dr Devi the founder of NAET. We were doing ABR 3-4 manual hours a day and 10-12 machine hours, HBOT 1 hour dive every week day up until 2 days before we left California. We had more blood and urine tests done through the environmental specialist doctor and had a consultation over the phone a week before we left CA. Its quite a list of therapies we squeezed in before we left CA.

We then moved to England and I was given the task of remodeling our new home. Then we discovered mould in the house this devastated me it felt like the mould had followed us from California and we couldn't get away from it! I know mellow dramatic! We eventually got through that moved into our new home, and then I get the email from Blue balloon that they had a cancellation and would we like to come do an intensive therapy week with Simona di Marchi well this is what we thought would help Annabelle the most,and the following week Annabelle and I were on a plane to Toronto Canada.

We did the CME intensive therapy course in Canada (details will follow I promise). Just Annabelle and I went my husband stayed back in England and looked after Matthew our son,took him to school etc. But I felt like I was losing it and not just my brain which I incidentally lost having my first child. But I kept having panic attacks, losing things like my passport/hotel room keys then finding them after huge a panic attack, heart racing brain fuzzy, I was not in a good way. The best I could do was try to keep it together until Annabelle and I got home.

We got home and I now know how it feels to be truly burnt out, I'd been burning the candle at both ends as they would say. They always say when you fly you need to put your face mask on before you put on your child's, look after yourself first otherwise you are going to be no good to anybody else! Well that's what I was doing I was free falling out of the sky my plane was about crash and I hadn't even put my face mask on! I was too busy looking after everybody else.

Well I've taken 4 months off I feel like I checked out of the hotel crazy that I'd been staying in. The place that was filled with therapies and doctors! I decided that I needed me time to get back some of me so that I would have something to give again. I started to do something that I'd forgotten that I loved to do before we moved to California, gardening! It is my escape place, the place where I don't think about Annabelle or therapies or doctors or mould or anything really, just digging in the dirt.

It's amazing really life does go on even if you don't have full control over everything. And sometimes if you loosen your grip on things that you have in your control they actually have a chance to flourish on their own and find their own way through.

Go ahead and create some time for yourself especially if you are a parent of a special child.

We're going to Canada!

Annabelle 15 months old

We are off to Toronto, Canada tomorrow morning,  just me and Annabelle the photos above are from when we were there last when Annabelle was 15 months old. We went to do an intensive therapy session for 2 weeks and on the first day Annabelle was standing and walking in Simona's hands, the therapy is call CME short for Cuevas Medek Exercise and we saw an amazing therapist called Simona DeMarchi at Blue Balloon health services she is the most qualified therapist under Ramon Cuevas the inventor of the therapy.

We haven't focused on this therapy as much as the other ones we do with Annabelle but we feel that she is stronger now her body seems to be recovering from the mould toxicity, she is eating better, she now can pull herself up to tall kneeling, she can hold onto a bar and stand for a few seconds by herself she can crawl on all fours ( not just commando crawling), So she has been doing amazing things in the last few months and we feel that re-introducing this therapy again will help her development along.

The realization that we need to go back to alternative therapies came when one night I sat crying because I was confused. Do I take the easy road and just go with traditional (which we have not done any traditional therapy since last year June) or the hard road alternative? We have come to England and everything is great here the system supports parents and children with special needs, and you could not ask for a better system everybody is very positive and people bend over backwards to help us out, but when the PT started to mention standers and AFO braces and Annabelle having to get casts put on her legs to get these. Everything we have been working towards the last 2 years with ABR and other alternative therapies. Traditional therapy just goes against the grain of what I believe is possible for my child. To be strapped into a stander half an hour a day OR do exercises that builds pathways in the brain to enable the child to stand on their own??
I think I choose the later, so we will have a week of intensive therapy with Simona and hopefully will come back with lots of new exercises for Annabelle to do.

Annabelle Crawling on all fours

Love this!

Love Katy's blog this post is one of her best in my humble opinion. Follow this link.

All I Ask

Trip to the Zoo

The Carroll children center sponsored families with special needs children to go to Marwell Zoo for the day. So we thought we would join in on the fun, and considering the Zoo is only 15 minutes drive from our house it was a fantastic day out.

In the middle is this beautiful stately home, Martin and I loved it especially after taking it in turns pushing the wheel chair around the 3km zoo or holding Annabelle up so that she can see the animals we were both shattered and just wanted to have a nap on the grass.

Matthew was in charge of the map and finding the animals.

We found giraffes these were Annabelle's favourites!

We found some sleeping camels, and a lots of sleeping animals that we didn't take pictures of!

We even found some fish.

 But the favourite thing we found was this swinging monkey.

Lets zoom in, no its Annabelle, she loved this swing.

And after a hard morning playing in the park and finding animals theres nothing like using my sisters wheelchair to rest on and eat my snack!

The whole family enjoyed a well deserved day out!

Imagine

Imagine all the people coming together as one
All to discuss a child that needs them
To collaborate and plan
What's best for that child for the next months
And make sure it gets done
You may say I'm a dreamer
But I'm not the only one!

Imagine no medical insurance
No authorization needed
To get the treatment for a child
No money changing hands
You may say I'm a dreamer
But I'm not the only one!


Yes today we (Annabelle and I) went to a meeting, all in the same room together at the same time, all the people who will be working with Annabelle for the next 6 months.
Physical therapist
Occupational therapist
Speech and language therapist
Pediatrician
Key worker
Portage
Head teacher of her new school
Me and Annabelle
I couldn't believe it! And each took turns in speaking about what they are going to be doing for Annabelle over the next 6 months, and how they can work together to achieve this, and what equipment Annabelle needs. It was wonderful and the pediatrician was right there too, so if any medical tests or referrals were needed she was right to hand. Not like in California it would take months before a report was sent to the pediatrician before we could get him to sign off on things then months for it to be sent back. There was no insurance authorization to wait for. And I didn't have to pay a single penny to any of them not even a co-pay for the doctor!

Simple as this Annabelle needs help with feeding she first needs a supportive feeding chair - OT is organizing chairs, OT and SLT will then observe Annabelle in new chairs (note 1 for school and 1 for home) and then devise best plan for helping Annabelle with feeding.

Then I had a chance to ask any of them any questions or bring up anything that I thought Annabelle needed. Such as Annabelle is in a crib/ cotbed at the moment and the other night she wriggled her foot between the bars and couldn't get herself free she started crying in the middle of the night I had to help her get free and help her get back to sleep. Also now that she can pull herself up to kneeling we are afraid she will tip out of the crib, anyway the OT is coming out on a home visit next week to help us find a solution. Wow I wish things were like this in California!

So the school that we had the meeting at is the pre-school we hope Annabelle will go to in September. She is eligible for 15 hours a weeks preschool at the moment but unfortunately all the spaces are full up until September. Until then we are going to their Smart Start group which is a parent accompanied class, which I am happy about because we both get a chance to settle in and get to know the school and hope the separation anxiety won't be too bad in September for both of us.

Back from the dark ages

Three weeks without internet, it's not an experience I want to go through very soon again. We moved into our house but didn't realize how long it would take to get connected up to the internet - 3 weeks! We must live out in the country now or something? The hum of the modem was replaced with the beautiful songs of red breasted robins while I hung out the washing on the line outside, daffodils have sprung into bloom everywhere and spring is in the air. Trees full with pink white and yellow blossoms. I've had time to notice all these things instead of my eyes and ears being stuck to a computer screen.

I did try to get hooked up once, I found out that there was free wi-fi down at the local library so I took the Ipad and went down there with Annabelle took her inside in her stroller, got the user name and password from the librarian and went to the childrens section were they have great selection of board books and bean bags for children to sit on. So I get her out of her stroller and put her on a bean bag with some books around and I proceeded to log on to the internet getting ready to update myself on all the blogging I had missed out on for weeks and may be even muster up a post.

I got stuck into reading one of my favorite blogs, I don't notice that Annabelle has crawled off the bean bag and is on her way to the book shelf and is reaching out to pull the books off the shelf, next I know, she is screaming her head off, the books fell on top of her head. Being in the library and having to be quiet because people are reading and a screaming child is not what they want in there, so what do I do? I grab Annabelle and leg it out of there.

Needless to say we haven't been back to the library since!

Well now we have internet and I have so many updates on what has been happening over the last couple months but we now have satellite TV and House is on tonight and I have been deprived for 2 months so you guys have to wait till later. Sorry!

What's behind the green door?

So you know we have been doing a bit of work to our house while we waited for our stuff to arrive from California, right? When I say a bit its an under statement here is a list of what we have accomplished in 5 and a half weeks - as our plumber says one of the quickest refurbishments he has ever seen.

• We ripped off wall paper of the walls and even off the ceiling.
• We then found mould in the en suite bathroom which we ripped out and had to replace stud walls and floors and ceilings in the room.
• We had the family bathroom window enlarged and a brand new window placed in the en-suite bathroom.
• We had the window in the dining room changed to french doors.
• We had new replacement windows fitted throughout the whole house.
• We had the main bathroom ripped out.
• We had the house painted throughout.
• We replaced the 2 bathrooms with new suites.
• We had a new back door fitted.
• We had a new front door fitted.

• We had demolished the front and back steps and made it into ramps so that the house is wheelchair accessible.

Now we have a new blue front door and a ramp that we can push Annabelle in her wheelchair up into the house.

Tonight the carpet fitters are busy in our house laying new carpets, tomorrow we are going to the house to finish any last minute jobs like putting up curtains poles and cleaning. And then our shipment is going to be delivered on Thursday morning and finally we will move into our house! After 3 long months of living out of suitcases we can finally unpack and settle down.