Please comment on Toys R Us Differently-Abled toy catalogue

A friend of mine who is an OT is working with Toys R Us on toys for special needs kids. I had mentioned to her my issues with the Toys R Us  "Differently-Abled" catalogue and now Toys R Us have asked for some feedback from special needs parents. The purpose of this is to see if Toys R Us and their special needs catalogue is appropriate and caters to the varied needs of special needs kids. Please take some time to post a comment on my blog so we can give our honest feedback to Toys R Us. The type of things they would like to know are what are the strengths and weaknesses of the Differently-abled guide and what would be valuable to us as parents when shopping for toys for our special children.

Please ask all your fellow special needs parents to participate so we can make a difference!!

Please give me your feedback via a comment on this blog and I will be giving the feedback to Toys R Us

Neurologist appointment

We had our 3 monthly check up with Bella’s neurologist on Monday. She is pleased with Bella’s progress and puts her at a 12 – 14 month old in terms of her development. What I am pleased about is that she put her gross motor, fine motor and speech skills all at roughly the same level. I know in some areas it’s a bit more or a bit less but I am pleased it’s all somewhat on a par. It does worry me that the gap between her actual age and developmental age is slowly getting wider but as long as she keeps on moving forward steadily I am happy.

Bella is so close to walking, I can just feel it. She doesn’t want to crawl anymore and she grabs my hands and marches off to wherever she wants to go. She is now starting to walk with me just holding one hand! We have decided to reduce her Tegretol dose slightly but to not wean it off completely. I am happy with this decision. The last thing I want is a relapse in her seizures.

We are going to do another MRI so we can see how her delayed myelination is doing and get a more accurate picture of the lesions on her brain. I actually found some researchers at GOSH in London who are researching stem cell therapy for cortical malformations . Up until now there has only been research done on stem cell therapy for cerebral palsy so I am quite excited to see what feedback they can give me. I hate to think Bella’s stem cells not being used when they possibly could be helping her.

A cute saying from Max: “Mommy are there herbs in dinosaur land?” … No why?... “then what do the herbivore’s eat?”

Questions...

As we get closer to spring the weather is getting warmer and I am really looking forward to warm summer evenings, swimming with the kids, green lawns and pretty girlie dresses. Bella is doing reasonably well. Her stomach is not where it was before the tummy bug and measles vaccine but is getting there. She is also getting her bottom molars and is miserable from those. When she is uncomfortable or sick she is a completely different child and really struggles to self soothe. I’m really hoping everything normalises again soon so she can at least look at her iPad rather than trying to chew it…

We are seeing Bella’s neurologist on the 16th of August and we will discuss what to do with her medicine. So far we are dropping her Tegretol dose slightly but Dr T is not keen to wean it off completely and have her on Keppra monotherapy . Bella has been seizure free for 18 months and has had numerous normal EEG’s so when is it going to be ok to wean her of at least ONE drug????? Has anyone been in a similar situation? Dr T’s rationale is that Bella has Cortical Dysplasia / Polymicrogyria as an underlying pathology and suffered severe seizures (up to 30 a day) and it is therefore risky to go from Polytherapy to Monotherapy. I am going to request that we do a follow up MRI now as the last one she had was at 1 year of age. I would like to see if her delayed myelination has improved and if the Polymicrogyria is clearer / more defined now as the last MRI report said, and I quote “There may be a mild form of Polymicrogyria in the….”

I spent quite a bit of time talking to Bella’s OT today. I have been concerned that Bella doesn’t seem to understand much which really doesn’t seem to fit as she is a very curious child, always exploring and playing with new things. She is very interested in her environment and has bright sparkly eye. I often feel that she doesn’t understand anything I say which just seems very strange to me. Bella’s OT explained to me that children with delays in the motor planning ability often appear to not understand anything because they don’t have the motor planning skills to respond but it doesn’t mean that they are not understanding. This is quite an interesting concept. Anyone of experience or thoughts on this? Next week we are doing an intensive OT week with OT every day. This is something I have wanted to do for a while and it just so happened that Bella’s other therapies were cancelled and Bella’s OT had extra space for us.


I have been worrying quite a lot about Bella’s development lately. My worrying seems to go in cycles and I guess I am in worry mode at the moment..

Other news..

It looks like I am off to London again in October for work so I can see Helen. We are also going on a family holiday in October which Max is super excited about!! Max my darling boy, how I wish I wasnt always so distracted and thinking about Bella. I am really trying not to be!