Thursday, March 31, 2011

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!

Tuesday, March 8, 2011

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.

Friday, February 25, 2011

HBOT summary

Before we left Orange County, California we squeezed in as many hyperbaric oxygen therapy sessions as possible, bringing our total to 138 dives since we started in May 2010. Reason being we saw such great results since we started. Out of all the alternative therapies we looked into doing for Annabelle I was most sceptical about HBOT I thought it was very expensive and that the improvement weren't consistent from child to child. There is not much information out there about how it works and how it can help brain injured children. Well I was very misinformed, luckily the doctor we saw said to us to just try 20 sessions if we saw improvements in Annabelle then we would know then that HBOT will help her, if we saw nothing then HBOT won't help her. It was as simple as that.


Well we tried 20, but it didn't take us 20 dives to realise that HBOT was going to help Annabelle, after 5 dives her hands that were permanently fisted started to open.



She gained more control over her hands and could hold onto things she couldn't before. It seeme like a light had been switched on in her head she would concentrate better at preschool, could match picture to objects, recognise colours. We were so excited after the first 40 dives we decided to do another 40.



She started to commando crawl around the house even navigating up a step then down it too. She  became curious about her surroundings looking into cupboards. Every time we did another 40 session we saw more imrovements happening.



We were so happy with California Integrative Hyperbaric Center  they were great with helping us with anything we needed and truly made us feel at home while we were there, it truly is  place of Grace just like its name says. In California we were lucky, it was really easy to do the sessions we lived only 10 minutes drive from the center. We have brought Annabelles hood with us and we are hoping to find a center here in England where we can get HBOT for Annabelle in the near future.

Monday, February 21, 2011

New Tricks

Annabelle has been really happy discovering Nanna and Grandad's house. While I have been busy sorting our things at our new house she has been happy to stay with Nanna and play, but she also has gotten up to mischief and has found out she can do new things too.


She sits in a W-sit position then she gets up on her knees then she reaches out to the chair and pulls herself up to the chair on her knees.


Then she wobbles a bit until she stabilises herself.



Then she is very proud of herself!
"Look at me Mummy I'm up here!"

Saturday, February 19, 2011

MIA

Yes we have been MIA for a while this is the reason why!





No it's not a new type of pregnancy test!
It's a mould test and it reads positive!
Yes we have the dangerous type of mould in our new home! It was discovered when my decorator pulled the wallpaper?? Yes wallpaper off the ceiling? and a big patch of mould was found above, which originated from the shower in the en suite bathroom upstairs. We called the previous owners to ask them about it they said they had a leak 5 years ago and they had fixed it? Clearly not well enough! We can only assume that they also had other leaks in the shower, because when we pulled out the shower and all the tiles, behind the walls were all covered in mould. We hadn't planned on redoing the bathrooms but this has forced us too.



When we first discovered the mould a feeling of complete panic came over me, I stood there looking up at the mould on the ceiling in complete disbelief, like how could this be happening to us for the second time?
Part of me wanted to run away, another part of me wanted to cover up the mould and pretend I never saw it, but the part that won decided that we have to first test if its the toxic mould that we have, then have to clear it all away and rebuild the damaged area so that we have a clean home to move into, for our whole family recovering from our previous mould exposure.

We first had to find somewhere that tests mould samples we looked online found somebody but they could only come out in 2 weeks time that was no good. We continued our search we eventually found on Amazon this test kit from Germany, you do it yourself, it was £40.00 and you get results in 5 minutes it tests for the 2 main toxic moulds Stachybotrys and Aspergillus niger and just like a pregnancy test with the pink lines come up if its positive. Once we knew it was positve we have been very carefully remediating the area, pulling out, bagging and disposing of any of the affected area. We have also invested in a whole house air purifier that purifies the air of mould, vocs (volitile organic compounds), bacteria, pollution, smoke, bad odours, well just about any nasty substances in the air, this thing has got 4 different filters!

So this last week has been devoted to removing all the affected areas, today the last bits were removed. So now the builders can start rebuilding what was removed and we can put a new bathroom suite in (at least there is some perks to this whole ordeal I get a new bathroom!) We are still living with Martin's parents while all the work is being finished off, I am not sure how much longer they will put us up, hopefully we can get the house sorted out soon!

Thursday, February 3, 2011

Jet Lag and an update

Jet lag is the funniest thing if you have never experienced it, it is worth a trip around the world to see what you are missing out. So inside our bodies seemingly we have a body clock and it gets used to waking up at a certain time, going to sleep at a certain time, eating meals at certain times. And when you travel across the world in an east or west direction and the time zone changes more than a few hours and the time changes that you would normally be doing those things your body takes a while to adapt to the new schedule so it will be 1am in the morning and you will wake up and your body will be thinking I am hungry I want dinner!

So we arrived in the UK safely after the whole family was upgraded to business class (just in case you hadn't seen my post on facebook) so we had those seats that fold down flat so you can get some sleep. Well I did not get a wink of sleep I watched Social Network and Eat pray love both great movies and before I knew it we were landing, but instead of it being 2am California time it was 10am. Luckily the homeopathic jet lag tablets got me through the day.

We crashed at 7pm that night and Annabelle woke up at 1am and the whole week she been waking up at really odd hours not going back to sleep. We give her 2mg of melatonin it helps her go to sleep but doesn't always keep her asleep. So hopefully she adapts to the new time zone soon because I am not sure how long I can do this for. Isn't lack of sleep a form of torture!

Well I am organizing a lot of things this week before our stuff (what was left over after we cleared everything out) arrives from California, we are trying to redecorate our new house. We are living with my parents-in-law while the work goes on. Lots of wall paper has been removed, carpets ripped out, and then a fresh coat of very low VOC paint put on the walls, so I am having fun choosing colours. (yes that's the English way of spelling that)

Then we are trying to get Matthew into a school you have to choose three in the area and send the application in (because he is starting mid year there might not be a space at the nearest school to us) so please prayer that he gets into one of the schools in my top three. We are homeschooling him until he gets in, which mainly consists of doing a few pages of the work book his old school gave us, and the some reading, then the rest of the day playing games with Nanna and Grandad. Oh how I love having grandparents around.

Then Miss Annabelle I have called the Hampshire county council children services and they are going to send somebody around to assess Annabelle. They also said I should call the Department of works and pensions, which I did and file in a new claim for Disability living allowance. So we should find out what this means for her and what kind of therapies we will get. I will keep you posted.