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....

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?"...

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!!!

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