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!!!

Tickle Time

Well as a family we have been really busy lately and the babies have been doing great, with everyone growing and learning new skills... even Henley is starting to talk (a little). He is still mostly the strong silent type, but he's getting there!!

Skye had a GI appointment today... I have to say it was as usual a non-event, where she is weighed, is looked at for 2 seconds and he says "she looks great, no changes". I'm not complaining - we are in and out in no time at all, its my favourite kind of appointment!! Coming up next month we will have the ENT (trach), Pulmo and 2 yr old check up/shots with the pediatircian, so I will enjoy the quiet while I can!!!

Last weekend we went to  he beach and whilst Skye still HATES the ocean and does not like being in the sun, Henley will run full throttle accross the beach and into the ocean as soon as you let go of him. He has to be carried out (crying). I bought them both new swimming shorts and those tight SPF shirts - they look like little surfers.

Here are our latest pics, I dont have many as my last memory stick was full and I only just got around to replacing it, but here we go.....

Tickle Time!!!

Baseball and a bump on the head

This weekend, Henley went out with Keith to watch his first baseball game and had a great time!!! I stayed at home with Skye but Keith said Henley was playing on the field next to the game, running and running (his favourite thing). He was also playing with a little girl (about 7 or 8) chasing her and running away. He was apparantly laughing each time the players were throwing the ball around and joined in clapping along with everyone else at the game and he came back exhausted!!!

Poor Skye !!!! She fell and bashed her forehead on the marble windowsill today.... she is going to have a corker of a bruise. As everyone knows Henley is always black and blue as he is always a daredevil and his favourite game is running with his eyes closed, but this is the first time Skye has really hurt herself. I think, however it may not be the last bump she gets as she is starting to become more adventurous...

One more thing.... I think we are entering into the terrible two's territory as both Henley and Skye have started to throw themselves around when the dont get their own way. Skye couldnt get her little purse open today and she started to cry then scream !!! I had to laugh but I'm sure I wont be laughing for long!!!!

Lazy Blogger

Yes, yes, I know I have been a lazy blogger this month...My resolution to post once a week isnt going well right now due to being so busy with everything else and the babies no longer let me sit at the computer.. in fact we no longer have any chairs out around the table due to Henley's climbing antics.

That said, I do have some updates from today's pulmo visit!!!! Firstly it's an important day as it was Henley's LAST synagis double torture shot(s) and he doesn't need to go back till May for a check up. Skye will go back next month and she will still be able to get Synagis till May when she is 2 due to the trach etc. Still I think it will a better visit for her without Henley as he does demand the most attention and his screaming and crying when he sees the nurse/doctor/receptionist sets her off too.

Skye weighed 24lb 7oz and was 31.5 inches. I personally think her weight last month which showed no increase was inaccurate as this is gain reflects what she normally gains in 2 months. She is the 5-10% for height (but am I !!!) and 25-50% weight

Henley weighed 29lb 12oz and was 35.5 inches. He does seem big. When I was holding him the other day, Keith commented he was almost as big as me now!!! He is (amazingly) 75-90% for height and 50-75% for weight

At the playground

So here as promised are some photos as taken by our official photographer Erin (Thanks!!) She visited and we took the babies to the park and she snapped away and got some great shots.

As for the sickness at home, I am all better, Keith had the sniffles one evening (that was it!) and Henley and Skye are feeling better (playing, eating etc, back to themselves) except they still both have a lot of secretions which they are coughing up mostly, so I will watch them over the next few days....

Here are the photos!!

Sick babies quick update

Today Skye seems much better!! No suctioning last night or today... still lots of secretions, but she is coughing them out herself now. Henley woke up so snotty with a horrible rattly cough (although his chest sounds clear), so I have given him breathing treatments as well. The pulmonologist has also ordered him some prednisolone so hopefully he will get much better in the next 24 hours like Skye did. Now I am sick!!! (hardly surprising considering I have been coughed and sneezed at non stop since Sunday!) Keith is the last man standing!!! Warm baths and advil for everyone!!!