Busy Bodies...

Support...Gotta love it! My friends Val and Christy, who I worked with in ER in FSJ, came down to teach a trauma course in PG last weekend. Last Saturday evening they came out to visit us on the farm and then took me out for a great dinner. It was such good timing for me. I really haven't been the most stable of individuals since the last onset of seizures. So when they came they seemed to help lift the mental strain. It was great. Not only did they bring all the well wishes and generous gifts from my buds in Emerg but they also helped shed some light on all the possibilities of Alistair's seizure activity. It just helped me get refocused and realized I can and will cope with whatever we are dealt. Again I need to just focus my energy on what I can affect rather than wasting prestious energy on what I can't. So ya PERFECT timing you guys. That lot up in Emerg has actually been a continuous support for me right from when I first shared the fact I was pregnant. They've shared smiles, tears, support, and advice to hold me together when I have struggled. They shown it through hugs, smiles, pats on the back, crazy generous gifts, to wonderfully supportive E-mails, phone calls, and personal visits. Ya you guys ROCK. Love Ya!

Anyhooo...yesterday I got my butt out on a pair of cross country skis and tested my trails I've been hacking away at out back. We had some pretty hefty winds here so I ended up having to take my skis off quite a bit to jump trees that had been blown down. Nevertheless it was wonderful just to get out and breath some fresh air and feel the sunshine on my face. More healthy and happy brain cells were created this day!

Today I found out that Alistair was accepted to receive the RSV (respiratory synctial virus) shot. I was so happy as RSV is a virus that is the most common and very contagious virus to infect children's lungs under the age of 1yr. For the average healthy kid it isn't too too bad but for little guys like Alistair with lung conditions it can be a serious set back that could cause for hospitalization...which as you all know is the last thing we need. But anyhow one does have to fill out paperwork and apply for it...so yippee, not to my surprise....we got it. So they gave him his first dose today. He cried for about 15 sec and decided that he didn't want to interupt his sleep time anymore and he headed back to sleep mode. I knew the shot was expensive ....the nurse informed me its $800 a shot! Yikearoos...thanks again for paying your taxes...I LOVE PUBLIC HEALTH! O and did I say he needs a shot monthly for 5 months!

So ya Mr Alistair, Grandma Hedges, and I are heading South to Vancouver tomorrow morning. We'll be seeing Linda Huh, a neurologist, tomorrow. Then on Friday we see the neonatalogist, OT, hand specialist, possibly the hand surgeon, Dr Skarsgaard ...the fella that preformed Alistairs surgery, and Dr Patel in genetics. Thats a busy day. I think we're there from 9am till 4 pm with one break somewheres in the middle of it all. Saturday we're heading to Jan Louises for supper. She gave me a lot of mental support while I was down in Van for the summer. Then we'll head out to my cousin Bo's for a couple nights out in Burnaby and then we're back to the hosptial Tuesday and Wednesday for feeding studies and an upper GI assessment. So its going to be a busy week. I don't really expect answers but I do expect a plan. I also know that Women's and Children's in itself will have a placebo affect on me. I'm just so comfortable with them and have put so much trust in them in the past that to go down and be assessed at that level will be reassuring to me.

Well I hope the sun is shining where ever you are at!
Cheers for now ~ Julie

Here's a little clip of Alistair chatting. Mind you he gets a lot more chatty then this but everytime I bring the camera out he likes to look at it and forgets that he's chatting. He has been doing really good since his last seizure. He's had the best weight gain per day at 22 grams or more a day which is a far cry from his 9-12 grams a day he was at. Like I said he's also very chatty, started to try flexion head control again and much more into rolling on his tummy with assistance. So progression is happening again...just a tad slow for the medical world...but mama his happy!

CT OVER WITH....

Hangin Out With Rocco

Alistair Snoozin During His CT

Well we went and got through the whole CT thing. I planned it out so that he last fed at 5 am and then I gave him a nice big feed just before the CT. He zonked right out for the whole thing. I was determined that he would go that route as they were saying they like to try to CT babes without anesthetic but if it doesn't work they try again with it. So I figured over my darn body was he going to have two CTs! So thankfully it worked like clock work. He crashed for a very quick CT. It literally was 30 seconds and bam it was over. I think I worked my self up over it...actually I know I did as I was somewhat light headed for the process. So thank gaud it was only 30 seconds. They said he was one of the easiest babies they ever scanned! Yahoo Alistair....We were to come back at 1:30 pm for a visit with the Pediatrician so instead of heading back out to the farm we went and had a pow wow with my old elementry school bud...Lisa and her 1 yr old son Rocco. It was super nice to get out of the house. Once things normalize somewhat we're going to try and get together on a weekly basis. Actually once we're back from our week of marathon appointments in Vancouver I think I'll go buy a stroller as there are a couple great indoor tracks here in PG. One at the multiplex and one up at the university. Just another way to get out and about and keep myself somewhat sane. I'm determined to try and normalize my life and get away from such a medical focus. Maybe a weekly swim and a couple weekly social outtings and perhaps a biweekly cross country ski on the farm. We'll just see how that goes. Moms game to help me out with that which is SO AWESOME as I think or rather I know my brain desperately needs it....Well we went and saw the Pediatrician and we didn't get the best of news. There is no signs of lesions, tumors, growths...however there appears to be a fair amount of fluid around the brain and possible concerns with brain structure. HOWEVER....it "could also be a variation of normal". Dr. Earl did say they do read the CT's here in PG quite cautiously so perhaps when we see the neurologist down south it'll be a bit of a different story... but needless to say he is concerned with Alistair's overall development. So ya thats it....definitely not the easiest news to take for any of us but like Jason said it won't change anything. We still will love him and take care of him as we were before. ONE STEP AT A TIME......Anyhow on a more positive note Alistair decided to flip himself over from front to back yesterday and he is also attempting some flexion head control. So I'm just hoping he proves the medical world all wrong. There really is nothing we can do...so I'm going to try and focus on what I can change such as focused physio session, love, and good food!

K Cheers for now

Julie

Alistair and Rocco dancing to classical music

Still Cute!

Alistair & I did a little photo shoot the other day with all his goodies he got...he seemed to enjoy it as much as I did! : )
Alistair & Mr Bunny

Its hard to believe he'll get into this stuff one day!

Jason has this magic touch. When Alistair is having a melt down Jason holds him just like this and he totally crashes!

Yep ...here it is again...it takes about 30 secounds!

Another cute bunny shot

Mr Giggles

Here's a little clip of Mr Man having a chat

Well we have our CT appointment booked for tomorrow morning. I'm just glad we don't have to wait now that we've decided to ge it done. Fingers crossed it doesn't show anything....A friend just called and said "try to focus on the things you can control rather than the things you ca not change" ...Wise words there Jan-Louise! (NICU nurse at Women's/Carol Wards Bud!)...Sometimes its the most basic thing someone says or does that can truly affect the course your on.....

Well Peps Enjoy the pics of little Alistair and thanks for all the support!

Cheers Julie

More seizures....

Yep unfortunately Alistair had another cluster of seizures on Monday morning. We were on the floor playing together and all of a sudden his face and neck got tight and he grunted away for 5 sec and then it was over and he smiled at me like nothing happened. At first I thought this can wait till Friday when we see our pediatrician but unfortunately they just kept coming. In aproximately 4 hours he had fifteen 5-10 sec seizures. They didn't seem nearly as intense as the last cluster at the end of October. He would just grunt and it seemed more to just affect his head and face rather than the whole curving of the body. Plus he didn't cry out in pain like the last time....... So back to Emergency we went. I have to say ones gotta love the triage system as the waiting room was packed but we were escorted in pretty near immediately. They didn't even want us in the waiting room. Before we knew it we were back up in our well known Peds Unit. It was nice to see some famliar faces for consistency. Dr Hay, the pediatrician on call, took Alistair on. Wow was she thorough. She had just been to Vancouver to a conference on seizures in children. So she was ordering tests the lab had never heard of before. So at least I felt Alistair was in good hands. She put him on phenobarb an aniconvulsant and Vitamin B6 as I guess sometimes these little guys can not metabolize it and it could be a cause for seizures. He got a hefty dose of 70mg per kg. I was warned he mat get drowsy. But of course Alistair has to do the opposite of all expectations...he was one active little hyper harriety. As for the tests...so far we just know the regular blood work is normal. He had another EEG and we unforuntately are at the stage we need to go for a CT scan. En route to the hosptial I called my "life line" and talked to some buds in Emerg in FSJ. I got to chat with Christy about some meds, tests, and just for some general support. Then Dr. Mackey was wonderful and chatted with me and answered a few questions in regards to the CT scanning. Its just wonderful to have that level of support when one is emotional and going in blind regarding all this. To have that support when i was feeling pretty darn unstable and getting some basic answers just did me some good. So if you read this i thank you guys for that! Anyhow... Dr Hay discharged us today with several pending tests such as a CT. She just wanted us out of the hospital environment as there is some H1N1 and influenza about in the hospital. So nice to be back home in our little safe zone. As for the H1N1 I went and got my dose yesterday. Frick thats a painful little injection. Feels like someone knuckled me right in the deltoid. But hey ...nice to know I will have that protection for Alistair. Anyhow.....we're still heading down to Vancouver on the 19th. I've decided that Mom would be great to have along so she's going to be come for support. I decided I don't need to be any wonderwoman at this point in the game. Just carting Alistair and all my stuff around could be a lot easier with Mom there. It's just so nice that we have these appointments all lined up so close to Alistair having this most recent episode of seizures. Hopefully we get some answers.....and hopefully it is a very basic issue....Well this mama has felt like the rollercoaster was flying down hill but were starting to normalize and chugging back up to a nicer view.

The little man is vocalizing away here so I had better go feed Mr Milkface!
Cheers Julie

Halloween

Mom, Jason, & I put our heads together briefly and this is what we came up with!

Alistair is smiling a whole bunch now!

Hangin out in his little halloween outfit

Lookin pretty spiffy

Catching him just after a big smile!

Hello Hello!

Well life has pretty much gotten back to normal for us. Alistair still isn't sure he wants to do the holding your own head up thingy but he is slowly putting effort into it here and there. The physiotherapist came out the other day and gave me some pointers in helping him with rolling over on his tummy and head control. He's just so content to not progress. So with a little "rolly polly" time with each diaper change and a few different positions were helping him along. He also likes to hyperextend a lot so we're trying to get him to do the opposite as like the PT said the hyperextension doesn't help him progress its the flexion. I'm also starting to put him in his carseat each day in the house here. I'm hoping that he'll get accoustomed to it prior to heading to Vancouver. So we will see. You know I was thinking about why he's such a Mr Fusspot when it comes to being outside and getting in the carseat and my rational is that most kids are outside and in a carseat within 24 hrs of birth where as Alistair didn't do any of it until he was 9 weeks old. So its just not his normal. So this mama has her work cut out for her in making it his normal. Mind you ......after landing in the hospital due to the seizures that occured after going outside and having a MAJOR meltdown I have to admit I'm very slowly trying to convert him but I am trying! ......I am also getting him more and more on a schedule now. He pretty much sleeps through the night now. My wake up time is 5:30am but I can't complain when he sleeps from 9pm! He's also getting the hang of putting himself to sleep without caudeling for naps. So another bonus....I also massage his legs daily now as he loves it. I first thought the idea of massaging a baby was a lot of hokey pokey pooped but I'll tell you what Alistair is in absolute heaven with it. He coos and smiles away. Its so nice to see......Well we still don't have a stitch of snow here but I hear up north there is 14 inches! I'm still trimming away at my ski trails waiting for the day it will come. But for now I have to admit the sunshine and dry weather is nice for Jason while he's doing outside work.

Well peps...have a good one!

Cheers Julie