Celebration

January 29, 2011

Celebration

Today we took all 3 kidlets out to celebrate William being off the ACTH injections, being infantile spasms-free since Christmas Eve, and being able to go back out into public places now his immune system should be able to cope with it again. It feels like a very long time that i have effectively been shut-up in the house with both babies and it was starting to drive me a little crazy. But now it's like a fresh start and we have lots of new clubs and groups to try out with the boys, so i'm looking forward to the next few weeks.

Today we went to an indoor kids' play area, with ball pools and soft play equipment and slides and hammocks and ropes and nets and swings and trampolines for Poppy, and a special section for babies with smaller soft play equipment and a little ball pool and sensory play stuff and lots of interesting baby toys. All 3 kiddies loved it and were sooooo happy and Poppy was very proud and kept telling anyone who would listen that we were there to "sellbrate Willum being sooooooooo brave" (with the injections).

i know that we still have a long way to go in our quest to help William be the best that he can be, and we have several medical appointments coming up to check his vision and his sensory processing and his liver and other internal organs, and also a review of his seizure meds and both boys' 6 month check-ups. And after that we are hoping to get him some more therapy or at least some equipment so we can do it ourselves. And we're planning to start baby sensory classes with both boys, and hydrotherapy with William and baby swim sessions with Finn and also possibly a music club with both of them. And Poppy has started ballet classes and also wants to go to French classes with her nursery. So we're going to be busy!

On top of all that we have our loft conversion starting next month and it will also be Sir's birthday and then Valentines' Day and then pancake day and then Mother's Day and then Easter and then Poppy's birthday. So loads to keep us occupied. But i'm feeling very optimistic right now about everything that's coming up and it feels like all the changes are for the better and will really benefit our family, especially William. And since he's come off the ACTH injections his usual sleeping/feeding schedule has been resumed, and he's much less cranky and also he has been able to lift his head briefly when doing his physio again which we haven't seen for quite a few weeks. The other exciting news is that William responded positively to a tactile experience for the first time ever - we were given a toy hedgehog which has soft spikes made of this weird fur stuff and William loves to have this rubbed on his face and will even nuzzle his own cheek against it which is such great progress for him! So i'm hopeful that now the infantile spasms have stopped and he's also off the ACTHar he can make more progress in other areas too. Watch this space!