Henley

I just had to post these photos of Henley who was absolutely enthralled by Keith on a ladder!!! He was so excited!

Summy

Every Feb 26th is our day to remember Summer.... Its hard to comprehend that it has been 3 YEARS since she died but I guess it has. I have resolved that each year we should do something fun as a family and each year on this day we will take time to both remember Summer but also to have fun... One of the reasons for this is that I dont have any new photos of Summy an never will...all I can do is turn out the same photos year after year. From now on Feb 26 will be a family outing and family photo day... here are our 2013 photos...of course Summer is included

Summer loved lollipops!

These guys love their bikes & I-pads/pods

We are hiding from the flu!

Its been about a month since I pulled the kids out of their special Ed VPK at the local elementary school and I think they are going stir-crazy at home....

After Skye's hospital stay over Christmas for a cold and several local and national news reports about how bad and how fast the flu was spreading the first week of January, I started to get spooked. After reading about the 17 pediatric flu deaths so far and how this flu was specifically casing respiratory issues we decided that we would pull the kids out till (prob) end of Feb/early March.

Luckily we have been reasonably quiet at work, and Keith and I have managed to juggle schedules so one of us is at home with them all the time - they are bored and I feel bad for them. After a month of not really going out (except to the playgound before bath time each day) we broke down and took them to Downtown Disney armed with plenty of handsanitizer at the weekend and they had a great time.

I have been working with them every day to try and get them talking and reading more. Skye is doing so well now, but I have decided Henley needs some more help than he is getting. He wants to talk and tries to read, but I think the problem is more that he cant get the words out - he tries but they dont come out right -hard to explain, but for example, I will say, the cow says 'moo' and he copies it as 'mow' as in mow the lawn,and makes a funny face trying to make it come out. When he goes back I will have to arrange a sit down meeting at the school I think...

Here are a couple of pictures from our outing. Henley attempted several times to climb up that dinosaur skeleton...

I told her 'say cheese'

I could definately get up there if you let me.....

In hospital for Christmas !

Things didnt go according to plan this year.... the week before Christmas Henley was off school for the whole week with a bad cold - runny nose, very chesty croupy cough and high temperatures. As luck would have it, that week co-incided with our 6 monthly pulmonology visit, so we got to see Dr S. and he gave Henley a prescription for pulmicort, albuterol (2 medicines we always have plenty of anyway and were already giving him) as well as some steroids and antibiotics. He seemed to be doing much better, but all of a sudden Skye got sick too.

The night before Christmas Eve, Skye's O2 sats were 94/95 overnight - lower than usual, but what you would expect for a bad cold (she still has a pulseox at night). On Christmas Eve however, I put her to bed around 9pm and by 10pm I could not keep her sats above her alarm level of 90, depsite much repositioning and several breathing treatments... by 10.30 I decided to pack us a bag (I know how this goes...) and head off for the local hospital.

They were excellent, but of course the first thing they always do is put in a line, so that got Skye very upset as she then had her arm on a board. Next they gave her a more potent breathing threatment and gave her IV steroid, took blood, nose & throat swabs, all the time saying 'lets get you out of here as fast as possible'. By 5am they decided she had not improved and she was already on 30% oxygen and we were waiting for tranport to Florida hospital Pediatric ICU. I followed her in the ambulance and by 7am she was in a bed in the PICU up to 70% oxygen via humidifier to the trach and looking very pale. As this was the first time Skye had been in hospital since the NICU I couldnt leave her so we had Christmas day amidst all the moitors and beeps that go along with an intensive care unit. The nurses and doctors there I thought were really good! They just let me get on with looking after Skye, suctioning her when she needed it or de-satted and generally just being her mom and doing the things I would do at home but with oxygen hooked up!

After a couple of days, her oxygen needs decreased and she was wanting to get up  out of bed and go play - we wnt for walks around the PICU and everyone told us we shoud be transferred to pediatric now as they had a playroom and Skye was getting bored. By the next day she was needing oxygen at night only and with several phone calls to our medical supply company and a lot of organization by Alicia our urse, they agreed Skye could go home with oxygen for night time use.

So we are back home -- Skye is on a concentrator at night - last night she had 1 liter and satted at 98 or above, so I will try her at 1/2 liter tonight - we used to have a concentrator that had low flow graduations but this one does not - its a half liter or one liter only!
Here are some pictures of her hospital stay.... Starting with day one and ending just before she came home... you can tell she is ready!

 

 

DOnt know why pictures are on the side!! on my phone and on the download they are the right way up??!!

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....