I was waiting until we had a date for Daniel to have his fixator removed to post my next blog entry but that date never seems to come so I thought it was worth an update.
The fantastic news is that on the 10 July we found out Daniel can have his fixator off! Originally, his fixator was going to be removed in the UK. However, Daniel's surgeon, Dr Paley (check out his new website - www.paleyinstitute.org) has decided that because it turned out to be such a complicated procedure, he has recommended that we return to Florida to have it removed. Dr Paley also wants to perform an arthrogram (inject dye into his hip) to ensure that it has healed properly and also plan for rehabilitation. Our surgeon in the UK supports this recommendation and has supported another application to the NHS for funding.
Unfortunately, the funding process is taking longer than we hoped. I won't go into it too much as the NHS has been very supportive with their funding so far but we are hoping they speed up their decision making process so our little boy can have his fixator off!
Daniel occasionally knocks people with his fixator. Max has copped quite a few knocks. This morning when he accidentally knocked me with his fixator he said, "Sorry Mummy, when I get my fixator off, I won't hurt anyone anymore." We forget most of the time that he has a fixator because he has had it for so long and deals with it so well but when I hear him say something like that it makes me sad that he has to go through all this.
The fantastic news is that on the 10 July we found out Daniel can have his fixator off! Originally, his fixator was going to be removed in the UK. However, Daniel's surgeon, Dr Paley (check out his new website - www.paleyinstitute.org) has decided that because it turned out to be such a complicated procedure, he has recommended that we return to Florida to have it removed. Dr Paley also wants to perform an arthrogram (inject dye into his hip) to ensure that it has healed properly and also plan for rehabilitation. Our surgeon in the UK supports this recommendation and has supported another application to the NHS for funding.
Unfortunately, the funding process is taking longer than we hoped. I won't go into it too much as the NHS has been very supportive with their funding so far but we are hoping they speed up their decision making process so our little boy can have his fixator off!
Daniel occasionally knocks people with his fixator. Max has copped quite a few knocks. This morning when he accidentally knocked me with his fixator he said, "Sorry Mummy, when I get my fixator off, I won't hurt anyone anymore." We forget most of the time that he has a fixator because he has had it for so long and deals with it so well but when I hear him say something like that it makes me sad that he has to go through all this.
In the meantime, here are some photos of the last couple of months....
Our friends Seamus and Yo's wedding in Canada
Chicken pox in a fixator! How many 2 year olds have experienced that?
Enjoying summer in London with Buzz Lightyear
Losing football teams but winning smiles
Wrestling with little bro...which apparently is a lot of fun!
Posted By: Kristen (Daniel's Mum)
3 comments :
I love your blog's new look Kristen and Shane. The photos are gorgeous, and the Smilebox slideshow is very special.
I hope all is going well for you guys! I saw your comment on Carter's blog and I understand the "funding frustration". I'll keep my fingers crossed that things work out. Good luck! Jamie
What a beautiful boy! Thank you for sharing your story and updates with us other moms and dads out there a few steps behind you. Good luck with the funding!!! I hope things move in your favor and fast!
Post a Comment