A LOT to catch up on....

Firstly, since my last post the babies turned 3 so I guess by default I should no longer call them 'the babies'. We had a great little family birthday in our backyard, had party hats, a cake, sung happy birthday blew out the candles, took some photos and then at the end of the evening Henley tossed our new camera over the pool fence and right into the pool. Hmmm sounds about right....

As it has been 10 months since I last updated this blog they have grown and changed so much. They are both in an exceptional student education class at the local elementary school and still get speech (both of them) and occupational therapy (Henley only).

Skye lost her MIC-Key button the week before starting school and as she was a good weight and was starting to eat much more by mouth we decided to see how things went. She is doing great and although she doesnt eat any more than before, she is happy to drink 3 bottles of pediasure instead of having them tube fed to her - she even goes and gets one of of the pantry when she wants one!

I have to say since they started school they have both been sick a lot (expecially first 6 weeks) and so both of them went a bit skinny due to feeling ill/having a vomiting bug then a pooping bug). Right now, they have both put a bit back on and are looking good!

Skye still has her trach and wears it in and capped for school, mostly to keep the germs out and keep her safe from drinks (she will pick up anyones glass and try to drink from it, but usually spills it down her neck - VERY dangerous if you have an open tracheostomy!) She also has a nurse in the classroom to keep an eye on her due to the trach and she is very good, so my mind is at rest with her there!

She is also starting to talk. I know she is waaaay behind a 3 1/2 year old, but she will copy lots of things you say now and is starting to use her words to ask for things which is a huge step in the right direction. I also think she is very smart as she can count to 20, knows her alphabet, colors, shapes, animals and she knows a lot of sight words, to the point where is is almost  'reading' her books.

Henley is also doing well at school and I really think he is smart as he knows all the same things as Skye. His speaking however is still pretty much non-existant, although he has added 'no' to his vocabulary recently. If I show him flashcards of colors, shapes and words, he points out anything I ask him (e.g where is the oval shape, where is the giraffe, which word says please etc). he is also getting used to kids a little bit more and doesnt have full on meltdowns in the grocery store because another child screamed. He does have some headphones, however that he uses at school and he puts them on  when he wants to if someone is loud, and he uses them at playtime - we also have some for when we go out with him!

Here are some updated photos of them - there is one of Skye sitting in snow - this was only 'fake' snow at Celebration....

2 years today since Summer died

I can't believe a whole two years has gone since Summer died..... In Feb 2010, all three babies were at home and I remember life was very fast and stressful with everyone on monitors (Henley just when asleep) and Summer and Skye on CPAP, oxygen, tube feeds, nebulizers etc etc. It was a as  crazy time and upon reflection, now life is relatively calm - yes Skye still has her trach and feeding tube, but there are no more machines, no more constant beeping and no more being in a state of high alert at all times. Although we dont know how Summer would have been if she hadnt died 2 years ago today, I like to think she would be off the vent just like Skye (they did have the same settings most of the time) and might even have had her trach out, as she only needed hers for ventilation, not due to trachea damage (like Skye has). We know she had some brain injury and her little legs were stiff, so I dont imagine she would have been walking but I always knew her mind was good so it didnt matter that her body might not work like it should - She would look at you with such intensity and there was a connection and understanding in her eyes that let me know no matter what had happened to her, she was still Summer inside and she was going to be ok... and it is this part of Summer that I miss the most.

Here is Summy aged about 7 months

Hanging out and watching TV!

Poop Fest!

Apologies for my lame posting, but my main reason for a new post is usually to show updated pictures, and as we left our camera at someone's house last month (and are still waiting for it to come back in the mail) I dont have anything to upload. Although lacking in pictures, we are not lacking in drama - I consider myself lucky in that we have had relatively few vomit or poop disasters, but the other night Henley changed all that. He is taking off his clothes and diaper ALL the time now, and as long as he is wearing at least a diaper when visitors come I am happy. So the other night as usual he stripped off and as he ran over to me in the lounge I could smell poop. I got off the couch to investigate just as he smeared bear claw tracks of poop all over the seat of our couch... One bathed baby and scrubbed couch later, I think things are good, until I see Skye with something in her mouth...I look (as I hadnt given her anything) and yes,  it was a nugget of Henley's poop OMG... I also discovered it on her feet and she had been walking it around the carpet in the family room... One more baby bathed and one rug scrubbed, I decide I can still smell poop... now Henley is naked again and has smushed poop into the couch of the family room while I was bathing Skye. At this point I'm red hot and decide ITS BEDTIME PEOPLE.... So we go to bed, and as Henley gets into our bed (he still sleeps with us), he is once again naked and smears a big poop smear all over the bed and 2 pillows. Its a good job neither of them can talk, as I wouldn't like them to repeat anything I said at this point as I stripped the bed, changed Henley and got them to sleep for the night... I think its time to potty train for sure.....

As for Skye eating poop, I cant believe she wont eat food , but will eat poop! (yuk) Just wondering if it as disgusting as the time I caught Henley drinking Skye's stomach contents by sucking out of her G-tube last year? Its a toss up....

Henley reading!!

I know... I dont post for ages, then you get 2 posts in 3 days! Here is the little video I made of Henley 'reading'. Even though he cant sign or speak, we have found out if we show him a word once he will remember it! I think he picked the first few up from 'Your Baby Can Read' which I never thought he paid any attention to, but since then I can show him a word like 'ball' and he will go fetch the ball. I taught him 'wiggle' and 'kick' once and he still knows  them! Its good to see he is learning even if its differently to Skye (who we think is super smart) and evn if he hides it well!

Sensory Issues and Beautiful Photos

Henley finally had his occupational therapy assessment last week (we had been waiting forever) due to his only walking on his toes, and having his hands over his ears all the time. He also has meltdowns if another child cries or shouts, which makes going to the park an issue. Firstly, let me say that I know these symptoms, especially  when you include the fact that he doesnt talk at all are classic red flags for autism, but it seems that I was right to listen to my gut feeling that this wasnt autism we were dealing with. The OT diagnosed him as having sensory issues and may give us an official diagnosis of Sensory Processing Disorder after he is worked with a little more. The fact that he makes great eye contact with everyone (including therapists he has just met), loves to play and involves everyone and is extremently loving (he hugs everyone and is very social) means they are not looking at autism, and that his issues are likely all sensory. What this means in a nutshell is that he hates loud noises, they really bother him, almost causing him pain (he fell to his knees with his hands over his ears screaming the other day when Keith forgot and whistled) and he needs specific sensory input, especially if we expect him to concentrate. So he will be having deep tissue massages, wearing weights (sounds crazy I know) and playing with funny things likestretch body suits and pushing heavy things around. He LOVES all this by the way! and it explains a lot - when he gets all the toys out and instead of playing with them, ROLLS all over them, swimming in them he is trying to get this input. He is also so strong and a daredevil with no fear, common with sensory issues.

Skye is doing well, and we went to see a special VPK place last week, where they take them at 3 instead of 4 if they have developmental delays or health issues - she loved it! She instantly integrates into a classroom setting and is off, doing her little 'dance' in front of other kids (its her way of saying hi, as she doesnt speak) and playing with them. (Henley of course, is in my arms with his hands over his ears). I hope she gets accepted there as its exactly what she needs, she is like a social butterfly and never wants to come home when we go anywhere!

Finally, before I show you some beautiful pictures Erin took of them (thanks once again, I love them!) I must just say a thankyou to Shelby for entertaining/wrestling Skye while we were at the hearing clinic at CMS a couple of weeks ago (both of them passed their hearing tests by the way) - I guess she is definately more lively than she was last time you looked after her!


Here are the pictures, Henley was sleepy and almost fell asleep while he was on the swing, he's not normally this calm!!

Yes, we still have the trach....

So, I've taken a long time updating once again, I know, but I realized I never posted the results from Skye's sleep study. As expected, it seems she is still using her trach 'hole' to breathe through slightly. Dr Weatherly said she did well and better than he though she would - her sats were not affected by sleeping with the stoma covered up, although she registered a few minor episodes of hypopnea (shallow breathing as opposed to apnea, which is stopping breathing) which led them to conclude she has evidence of a mild obstruction. So no big deal, we will just keep her trach open for now, and repeat the study in 6 months or so. When she has no obstruction evident, she can get another bronchoscopy and they can sew up the hole if everything looks ok from the inside - I dont really want her to have a bronch before then, as there seems little point. Anyway, she is doing great and has 2 new words: 'baby' and 'more' This makes 5 words in total for her and 3 for Henley - I have no idea why they are reluctant to talk! We are still getting speech therapy twice a week and Henley goes for his first Occupational Therapy on Friday, so I will update. Finally, here are just quick 2 pictures I took - this time they are both Henley - one shows you what a strange/funny/odd (you decide) boy he is. He likes to watch tv from inside his basketball hoop...and one to show you Henley with his hair up (it was in his eyes,so I tied it up), when Keith came home he said 'Oh, now I've got TWO girls!' Still, it will be a great picture to show to his girlfriends in the future.....

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?"...