Friday, September 30, 2011

Sleep study number 3

This week Skye went for her 3rd sleep study at the Arnold Palmer sleep unit. They monitored her without the trach and her stoma open, and with it covered up with a band-aid (very hi-tech). We will see what they say when all the data is reviewd - my guess is it will be hard to find anything out as I think she slept for a total of 2-3 hours max. She went to sleep finally at 11pm, and they kept coming in all the time to adjust her canula, reconnect a wire, turn her over, cover the stoma, adjust the canula, etc and on it went. Each time she woke up, she started crying and pulling off her bandages (they bandage their faces to protect the electrodes on the face) so of course we would then have to start over. Finally after they wanted her to move from her stomach to her back again (she always has been a stomach sleeper) she woke up and after an hour of trying to get her back down (she was up and babbling) they abandoned the study. i think that was about 4am. Next time, its Keith's turn.....

Dont know how she slept at all with all this on.....
On the way to the study, I had to drop Henley off to Keith as he was finishing work, and the babies got to have fun and run around... as he was tidying up they were tipping stuff out he he he....

Skye was having fun and was very upset to leave (we had to get going for the study) so threw one of her hissy fits, which she is getting really good at. Notice how at the end she stops suddenly, thats because daddy came over... they are both so good for him, and only do this for me!

Finally, just wanted to say how gorgeous Skye's hair is and show all of you who havent seen her in a while how long and thick it is....I would love just half her hair!. Also there is a photo of Henley's 'tattoos' which he gave himself when he was left alone for a minute with a marker pen (well, could have been his face)

the tattooed toddler

Saturday, September 24, 2011


So I have finally given in to the whole therapy thing - Skye and Henley will now be getting lots of therapy to try to get them to catch up as they are falling behind. Physically they are good, except Henley still walks on his toes and doesnt like loud noises. He may have some sensory processing issues so OT will be working with him to try to identify and rectify this. We are also going to get speech therapy for both of them as neither of them speak yet and they are nearly 2 1/2 yrs old. They will say mama, dadda and baba but seriously thats it and they have said these words since they were about 18months old!! They will both do some sign language with us and will follow commands but wont speak. Skye already has feeding therapy (but still only picks at tiny crumbs of food) and luckily our current therapist will also do the speech therapies. Henley also only drinks with a baby bottle still (he thows anything else back at you and says 'baba') which is no big deal to me, but I know its something our pediatrician and feeding therapist really hate....

Part of the problem I think is that they have been so isolated, which I did on purpose so that they wouldnt get sick. When Skye did get sick she would need oxygen and it was a big deal, and with their bad lungs, even a simple cold hits them hard. However, they are older now and I think they need to mix with other kids more. I have been tentatively looking at preschools for a while now, but they have never been clean or nice enough (I'm very picky) and then I heard about a place that Keith and I checked out last week AND LOVED! Its called Space Coast Early Intervention Center. Its preschool for kids with special needs, although they do take a number of kids without any issues as well. There are a lot of former preemies who are just behind a little, as well as kids with various issues such as CP and autism. Very nice place, super clean, with fantastic playground (designed so kids in wheelchairs can use it as well). They do special therapies there such as speech etc, and we will be enrolling the kids from mid October, for 3 mornings a week. As it is a non-profit, parents have to do volunteer work in the school (4 hours a week), which means one of the 3 days they are in class, I will be there with them. The only down side is its a long drive but its worth it. They will be getting their flu shots next week in preparation......

Wednesday, September 7, 2011

Another new shoes dance

So Skye has once again a 'new shoes dance' to perform for us all. When Henley gets new shoes he walks really carefully like he's forgotten how to walk, which is not nearly as much fun as the little tap dancing show we get from Skye... So here we are, New shoes part 2. next time I will try to keep the camera upright (I guess you live and learn)

Skye's new shoes!!

Henley forgets how to walk because he has new shoes.... (maybe its because they arent normally allowed to wear shoes in the house?)

They just love the camera now!

boo Boo saying Cheeeese !

Friday, September 2, 2011

Henley can swim!!

Yes, Henley has finished all of his swimming lessons and has passed his infant swim course! He is very confident in the water and loves it!. I have posted some short videos of him with his instructor ...

Also this month, we had a visit from my frind April with her triplets. They stayed over and we had a lot of (noisy) fun. Skye is like a social butterfly and loves the attention. Next time I will take proper footage, these were just little 'shorts'!!

Finally on the whole trach issue, we are going for another sleep study which Dr Weatherly the Pulmo has arranged. I am much happier with this rather than doing a bronch with and ENT under general anesthetic, and we really just need to see if Skye is using her tracheostomy opening at all (I think she does). He says if she isnt using it, the stoma should be surgically closed, but if she is using it, we should allow it to stay open (like it is now without a tube) as it shows she still needs some of the support it gives her. We can keep checking her every 6 months or so with a sleep study till she isnt using it anymore, and even though it doesnt show physically what her trachea looks like inside(like a bronch would) it will show us the physiology of her trachea (how it is working in practice).I am very happy with this, and even if she has to keep the little hole in her neck open right now, it seems like a huge improvement on the trach tubes, ties,and suctioning we had till recently!