Cryptic blog entries

Just in case anyone was wondering why occasionally there is a post with sports scores, and practice times, let me explain... Keith also runs a blog for his baseball travelteams and we share a computer. If I'm not logged out his posts end up on my blog. I delete them as I find them, but now at least this answers someone's recent question "what's with these random cryptic blog entries?"...

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



Therapies!!

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......

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 !

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!

Updated photos!!

So we have not put Skye's trach in for months now. I do put the cannula (tail of the trach) into the stoma (hole) each night just to keep it open, but its out the rest of the time. I truly belive the trach doc just wants to keep her trached for the $$$. Yes, there you go, I thought it for a long time, now I said it out loud.  They went to do a bronchoscopy last week, but the anesthetist at our local hospital was not happy putting her under without a PICU back up, so her procedure was canceled. No probs, now I guess we will be referred to someone else to decide whether or not we can take her trach out, when in reality I took it out last May. Ho hum, here are some updated photos!

S

This is what he does when you say 'show me your teeth!!'



Having fun with mashed potato.



Isn't she beautiful!!!! Skye on the giraffe feeding platform




Last May on their 2nd birthday at disney. You can see how much bigger Henley is !

 Henley trying to use Skye's feeding tube on himself

Henley playing with Skye's trach



Yes, I know....

You're all right, it has been a LONG time since I sat down to post. I keep waiting for things to slow down around here, but if anything they are getting busier, so I figure if I dont get back into my blog now, it will just fizzle out, so here goes !!!

Firstly we moved house. Only about 10 miles south of where we were but even though our house still needs some work, WE LOVE IT !!! We have been painting, painting and painting, although of course we can only really do this when the babies (still call them that, will have to think of a new word as they are far from babies) are asleep. We made the mistake of trying to paint one evening when Henley was still up, and suddenly I saw him running  past me with  yellow hands - he had found the paint lid. He also tries to rattle the ladder when Keith is up it, so we were back to painting at night time. The main color in the house right now for those of you who are interested is MUSTARD. Sounds horrible, I know but it looks fab and we love it, come and check it out when we are done and I will prove you wrong!!

Secondly I am in school!! I decided to go for Diagnostic Medical Sonography. I especially like the abdomen and cardiology side of the work for some strange reason... It will be another 2 years till I graduate, which seems like forever, but the timing will be good as the babies will be going to school as I start work. Most of my spare time after babies, chores and painting is now schoolwork, so yes, my blog has suffered.

What else... Oh yeah, the babies turned 2!!! We went to Disney and they enjoyed themselves, but half a day is enough. We got 6 month passes so we can keep going back and do a little at a time. It takes so long to get into the park from your car I think they thought that was part of the fun. All 4 of us crammed into one of Dumbos flying cars and went on that ride - they loved it - Im scared of heights so I had my eyes shut through most of it, while saying 'weeeeeee' like it was fun, they were fooled and said 'weeeeeee' back so it worked out.

I have photos, I'll upload them seperately, and I'm going to Target today to book them ion to get their 'official' photos taken, they always do a good job. Medically speaking there are no changes, Skye still has her trach, still pulls it out all the time and wont keep a cap on, she still is tube fed, but is starting to eat more food and to eat it more consistently. For 2 days I only gave her a little juice through her tube (2 oz every 4 hrs) to make her hungry and it worked. She did eat way more, but Keith said she was looking skinny after 2 days so I caved and she's back on pediasure. My plan is to fatten her up and then try again!

Henley still wont talk really, Im holding off on speech therapy for both of them for now, but they are doing loads of other funny things. Skye will do just about anything you ask her to - point to anywhere on her body, stand up, sit down, jump, brush her teeth, although she wont say any of it, and Henley likes to brush my hair, brush my teeth, and drive Skye's car (she has a powered car) all over the house. He is also huge and in the 80% for height and weight. You will see when I post the photos!!!