Christmas photos and Skye's button...

Skye's button came out for the first time ever yesterday. I noticed that it usually lays flat on the skin but the 'stalk' was more exposed than normal. After a quick call to my friend whose baby has a button, I checked the water level in the balloon under the skin. It was empty so i refilled it and it seemed ok (flat again and secure) but after her nap it was hanging again and just seemed loose. So i pulled it out !!! I filled it with water and saw it had a leak, so I had to put in a new button, This was kind of scary as it didnt want to go in and I had to kind of just go for it. Skye was crying but it finally went in, inflated easily and has been great since. According to my frined, they just wear out every couple of months, so now at least I know....

We got our Christmas photos so I thought I would scan a few in. I have also included one from our Christmas photos last year.... Of course we still had Summer then as well, but both her and Skye were not doing well that week. Both were trached and on ventilators.... you can see how far Skye has come since then and of course Summer is conspicuous by her absence, but they are beautiful pictures....

Summer, Henley & Skye

Skye & Henley

'A few drinks at the office party'

New Tricks

This week the babies have both learnt new skills. Skye can now point to her head, nose and mouth when you ask her to (photos below) and Henley can get to the water and ice dispenser on the refrigerator and flood the kitchen (photos below) even when you ask him not to.....

Point to your head

point to your nose

Point to your mouth

The problem.....

The solution !!!

Scribble Time

So whenever we go to the pediatricians, she asks questions about the babies development, I guess to check they dont fall too far behind, especially as neither babies have any therapies any more ( I cancelled them) so its up to me to make sure we stay on track.

I have a book that tells me (month by month) what they should be doing, and I dont take it too seriously as the babies being born at 25 weeks are nearly 4 months behind before they even start!!! That said, I am going to do more stuctured play at least a couple of times a day as the 'book' tells me they should be doing more than they do. I bought Your Baby Can read volume 1 and they love it, even Henley has been fixated and he cant concentrate on anything generally.

The pediatrician also asked me if they were scribbling with crayons... it had never occured to me to give them a crayon as I know they would just eat it, but I did find these scribblling markers especially for toddlers 18months + so we are using those too. Here are some pictures of Henley's artwork in progress. As you will see from the photos, he would draw some, then lay on it, draw some more, lay on it... and so on.... I guess artists are supposed to be eccentric......

Christmas photos and nasty needles

So the babies seem to be ok and although Henley's cheeks are still a bit red, they seem to be getting better. Also his skin especially on his face is very dry, almost chapped so Im now thinking its the weather and slathering him with baby lotion.

Yesterday we went and got our Christmas photos done. I had planned to get photos made into Christmas cards this year, but I had no idea that to organize and do this you need to get started around Thanksgiving.... Firstly Im very fussy about taking the babies out in public as I dont want them sick, so if we go out its super early before it gets busy, and so I needed a photo appointment first thing, not second or third in the day after 3-4 kids have been climbing all over the place, sneezing etc, so of course all the first appointments in the area were taken weeks ago.

Finally after much phoning around and waiting on cancellation lists I found a slot at 10am first appoinment  of the day at a Walmart not too far away. So to cut a long story short we had some great photos done and I ordered a sheet of wallet photos which I will give to everyone I know will want one!!! Next year I will be ahead of the game!n

Today we went to the pulmonologist for the babies' Synagis shots. Dr Weatherley said that he doubted Henley had fifth's disease as the fever normally breaks when the red cheeks disappear and it just looked like the weather or possible teething as he does have 2 huge side teeth errupting. I was slightly disappointed that the babies did not increase in weight from last month they are 21.7lb and 25.7lb and heights are 29.5ins and 33ins. To me they dont look that different in size or weight, yet while Skye scrapes in at the 5th percentile, Henley is between 50th and 75th percentile (for 18 months old, so not adjusted) This month I'm going to try fattening them up which is hard as they are so fussy........

Heres a picture I took this morning, the babies were killing themselves laughing when Keith got in their pack and play with them!!!

Bright red cheeks !!

Today Henley woke up with bright red cheeks and chin (very festive I thought). He also seemed a little clingy and whiny... Well after their mid morning nap I noticed Skye had slightly pink cheeks also, so after taking their temps, which were not horrible, but elevated (99.6 & 99.4 forehead) I called the pediatrician and we went in. Henley was tested for strep throat but was negative, so we have 2 possibilities..

1. (likely) Fifth Disease a.k.a parvovirus (I thought only dogs got this, but seems its common in toddlers) and this will just run its course although they may get body rashes too.

2. They are sickening for something else yet unknown so I will have to keep my beady eye on them!!! At least they have ahd their flu shots and are still getting the Synagis.

Of course Skye was all smiles for the doctor and Henley screamed non stop and wound himself up into a right snotty state. She commented he did have a runny nose, and I had to explain he didnt 5 minutes ago!!! Friday we have an appointment with the pulmonologist so Im hoping they are better by then otherwise I'll have to reschedule which will mean driving to Orlando as they only come to Melbourne monthly.....

Skye's Trach....

I am so done with Skye's trach. Anyone who knows us knows that the trach is out more than its in.  She has been off the vent and CPAP for ages now but due to her issue of scarring and stenosis from repeated intubations, she couldnt have it removed without a bronch to check her airway looked ok.

She had her trach capped for a month and an overnight sleep study showed she was ok without it, so we thought GREAT finally we can get it out. Of course, her bronch showed that there was still a little stenosis (part of her airway is a still narrow) so to be on the safe side we should keep it in and look again in 6 months..... We had been counting the days to the bronch and trach removal as over the last few months Skye has become an expert and removing it. Here's my dilema.... If i leave it in but uncapped with no HME it gets blocked solid by what looks like boogers that her suction machine wont suck up, so I have to remove it, poke out the 'boogers', wash her trach and put it back in, so I am decannulating her about 3 x a day for 20 mins at a time. The benefit of this is that she cant decan herdelf so easily but she can and does put things down her trach, like grains of rice (not kidding). Alternatively I can put her cap or HME on, but they last no time at all, especially the cap, its usually in her mouth, under the sofa, in Henley's mouth, or she uses it to decann by pulling it and her trach at the same time. I have tried putting her ties super tight, and she decannulates by putting her thumb at the base of the trach and flicking out the tube......

Her record to date was 27 decannulations in one day - and sometimes I dont even see right away. Surely that is a major potential for infection??? also what about damaging her airway more???

Heres a clip of her with no trach, as you can see it doesnt bother her....

Here are a couple more pics and Skye feeding Henley.....



No trach



my tarzan

Santa's Little Helper

SO both the babies are teething once again... Skye always just gets on with it, drools more than normal, chews her shirt non stop and never makes a fuss. Henley on the other hand is very miserable, feverish, soaking every shirt ond bib within minutes and lots of crying/whining/stuffed up nose etc. He is the Tylenol King when he's teething and his sleep pattern is all over the place right now and we are all exhausted.

Henley has also become a great 'help' around the house. He wants to do whatever you are doing, as you will see from the picture, its hard to get stuff done sometimes!!



Doing the laundry

 His new trick of the week, is climbing on the dining chairs to get on top of the table - our house is already stripped of all ornaments, decor etc as its not Henley-proof, now it seems the table is not safe....and people are asking me if I'm getting a Christmas tree this year...er, no.