Our ROHHAD world

While the world keeps turning out there in ROHHAD developments we have stayed on the quieter side lately. We know approximately 38 families now with a child with ROHHAD - ranging from early 20's to 3 years old. All very similar yet different symptoms. It's interesting to learn about each child because we are all hit with varying symptoms at different ages and stages.

We are heading back in to Oncology next week for another round of IVIG and then we are back in with Endocrine after that. I'm not sure where Haven's counts are at this point - I know we tried to extend her IVIG visits from every 6 weeks to every 12 weeks and that didn't work out very well. So we are still on the every 6 weeks schedule. There are two other important topics we are bringing to discuss - Haven's height/growth issues and finally breaking down to go in to meet with Kennedy Krieger Institute. They are internationally known and well respected in the medical community. We just never had the mental capacity to add more to our schedule when we were first asked to start going over 2 years ago. It's a lot of work to get an appointment and we should definitely take advantage of our doctors being able to get Haven in there.

Other than that Haven is doing well. She has excellent grades at school and is a good little helper. Her only issue is that she likes to be the boss.....we are working on that! ;) She is still doing her adaptive PE class to help with balance, core, and strength. She is learning to go up the stairs with both legs instead of just the right leg. We still have lots of issues with that, as well as, fear of getting in to a car. I know........it gives me a headache every time we have to get in a vehicle.

Well - I guess I haven't taken any photos in the past few weeks....at least not anything cool. Haven took this wonderful photo - I thought I'd share it. Can you guess what it is?


I would also like to invite everyone to read up on Haven's friends. I posted a note about Denika from Newfoundland in there and have another coming up about our wonderful friend in the UK - Jessica! You can find this site at: Friends Of Haven -- see below for a peek at Denika's story:


Denika is a beautiful girl we met almost 2 years ago now. Amazing to think back when first meeting and mentally review everything you have gone through together. She lives in Newfoundland and we have been friends pretty much since she was diagnosed. Her mom found me through Haven's web site. At the time she had just had the same surgery Haven did to remove her Ganglioneuroblastoma Tumor and was officially diagnosed with ROHHAD Syndrome. She then went on to Sick Kids in Toronto where I was contacted by an Endocrine doctor that wanted more information about my child. I put her in contact with our doctors immediately and asked them to help this little girl. Our doctors are so awesome they immediately took it on to work with her - they contacted me for permission to discuss Haven and off they went. Denika slowly began to follow Haven's treatments and what she had started with. Then suddenly Denika was found to have a second Ganglioneuroblastoma Tumor - this one in her chest. I couldn't believe it. Still Denika has battled on.........



Oh yea.....what was that picture? It is a picture of Deezy wearing Haven's headband....obviously the dog was in motion to run away! :)

Whew.....long week and slow weekend

Gotta love my girls....here they are relaxing. Deezy is such a princess when she's with Haven. She is so spoiled. This is the two of them watching movies. I was deadly sick all last week and barely moving so it was fitting that they wanted to be lazy! Haven decided we'd watch Lord of the Rings all weekend. Sunday it rained all day and night but I guess that's better than our friends up north that were hit with 20" of snow! :)


Starting Saturday off right! :) Miss Haven knows how to get her motor going on an early weekend. She and her dad spent the day on Saturday cleaning up the house and taking junk to the dump. We are going to give her the bigger room upstairs now since she has more stuff and another machine to add to her decor. We made a small dent in the pink room - it will probably take a week or two before we can get her in there. That room became overflow and storage! :)