Time Flies!

Grandma Hedges found a hat Alistair actually likes to wear!
Alistair on the verge of a full on snooze

My little happy camper and his bear!

Hello Hello

Well isn't it just crazy how time flies. Wow its already December. I find that just unbelievable myself. So far its just been beautiful. Granted we've had some -27 deg weather but hey its been sunny sunny sunny. Thats when we really appreciate Mom's sun room as it allows us to totally appreciate and love the outdoors while staying snug and warm with a cup of tea. Actually its great for me when life has taken a turn to being a more house bound individual....All has been quite ticketyboo since our trip down south. I'm still trying to be quite aggressive with his phyio. He seems to like to hyperextend a little too much so I'm trying to work with him to do the opposite as hyper extending is going to get him no wheres in this world! He continues to attempt head control, loves to vocalize like crazy, and is starting to really interact with us which of course is quite fun....Alistair and I helped my mom celebrate her birthday yesterday with eggnog, christmas tree decorating, and scrabble while we listened to Andrea Bocelli's Christmas CD....Jason is up North at the present closing up our little home in FSJ. The poor guy...he's been working every single day since he came to PG and now he has to pack up a house. Mind you in a positive light he's got work and we're not going to be paying rent for something we aren't using! So woo hoo for that!...It just seems to be all falling into place quite nicely for us here. Its surprising when one starts talking to people and getting aquainted with old friends how many people we still actually know in the Central Interior which is of course a bonus when youre trying to get work lined up in the construction business! So thanks to all you folks! Yahoo for word of mouth. If you ever need or want to check out Jason's blog address I've added it onto this blog under "Fellow Bloggers" . I just put pictures on of some local work that he's done. ....Anyhow it is darn nice to have some normalacy in our lives. I have to admit I think I'm being the typical mother. Once one thing is cleared off the worry list (no more blocked tear duct, hardly any reflux) a new one takes its place...but hey I just keep focusing on the things I can change not what I can't! ( At least I try!!!)...well the last post was ridiculously long so I'll cut myself off here. Just wanted to put out some Christmas cheer with these fun photos....Enjoy Cheers Julie

Back to the Great White North

Mr Alistair looking like a Smurf during his EEGNot looking phased in the least with all the hands on!

Alistair obviously likes all the ladies surrounding him. The lady second to the left is the hand splint OT specialist and the lady on the right is the plastic surgeon

Mmmm if I had $750 bucks I would have bought this. It was in the local coffee shop. The artist is Catherine Adamson. Check out more of her stuff at http://www.catherineadamson.com/

Another if I had $350 bucks. Love it!

Alistair and Mommy just prior to the feeding study

My good bud Kim McBurney and her son Grady. Grady was born 8 days after Alistair at 1 lb 14 oz and 24 weeks. He's a little fighter and proving to go against the grain. Yahoo Grady! Kim and I had alot of coffees together in Childrens.

Alistair lovin his Grandma Hedges

Mr Mellow on the plane!

This was a dreamy flight home. GORGEOUS day!

Well we finally got back to good ol' PG on Friday. What a whirlwind of a week. It really was a good week...just EXTREMELY full. We didn't really find out any answers just a plan which I expected. However, they do say Alistair has Epilepsy. This is said as an EEG indicated that he has overactive areas of the bilateral temporal regions of his brain. So really all this says is he has a neurological disorder characterized by recurrent unprovoked seizures. Whether it will be there for a life time or he will grow out of it is anyones guess. I'm just hoping that it will be controlled by meds at this point. For the most part it seems to be but every so often he has a eye flicking episode or goes into his own little world. (Mind you I know a lot of people would say I'm in my own little world a lot of the time !). Thursday we got to Vancouver and had an appointment with the Neurologist. She was concerned with his central tone and stiff extremities so ordered an MRI for the following week. He really was on his worst behaviour. He had strong ATNR reflexes, major head leg, no tone in his lower body, tight upper extremities and no visual interaction. So some would say if hes going to show his worst this is the best time. Well the funny thing was when we got back to the Holiday Inn on Broadway (great staff, medical prices, and close to down down, even good room service food!) I laid Alistair on my lap on an incline and all the little gaffer wanted to do was raise his head! What a little nutcase. Dr Huh must have given him a little kick or something. Anyhow that was big as he has really had no interest in head control since the middle set of seizures in Oct. ...Friday was stupid crazy busy although it was great to have all the access to specialists. We had appointments from 7 am which started with an EEG (yes its his 3rd- it shows the electrical activity of the brain) to 6:30 pm which ended with an Opthamologist. We didn't get the results for this particular EEG but the Opthamologist said he didn't see any sign of cataracts (yes, infants can have them too!) and he had an unusually large optic disc which he said wasn't a bad thing (small is bad or not good). In between all that we saw Dr Skarsgaard the surgeon who was happy with Alistairs lung progress, the neonatal team which consisted of an extensive OT (occupation therapist) evaulation and she was quite positive about his interaction and progress (mind you he was a different kid friday then thursday!). She also was impressed with the Child Development Centre PT that visits Alistair at home here every couple weeks. Lynn Bergmen (PT) is obviously on top of things here with Alistair. Then we saw the Neonatologist and Nurse who spent more time on how I was doing rather than Alistair. Then we saw the Geneticist Dr Patel (awesome fella). He still didn't see any corolation to any syndromes but wanted to refer us to Endocrinology on our next visit as he did have cortisol issues in the NICU and felt that showed be followed up. Then he got into talking to me about our next pregnancy! NO NO NO we're not prego but would like to be in the DISTANT future. So he talked about following me when that happens. He also ordered an Array Test which is a blood test that takes about a year to get the results as its so new and there is a back log of stuff. The Array Test uses molecular (DNA) techniques to look at the genetic material by analyzing Jason, Alistair and my blood. The test provides information about chromosome imbalances, including some that may be too small to detect by traditional methods of chromosome analysis. Then if something comes back that isn't consistent with Jason or I we would have a 25% chance of having another little Alistair and they could test for this via amniocentesis..........Anyhoo I also mentioned to Dr Patel that i was hoping someone could tell me what they thought of the CT scan that was done in PG. It hadn't been on the grid on thursday so Dr Huh couldn't tell me anything. He wasn't too impressed that someone up north read the CT with such a wide variance (ie normal or brain atrophy) he said whats the point in going to school for 8 years if thats the case! Hmmm i kinda wondered that myself but I was advised PG reads their CT's quite generously. ANYHOW...with just a quick look Dr Patel felt that the ventricles looked good in the brain (VERY POSITIVE THING!) He did say the brain was sitting low in the skull but he didn't see anything that stood out for him. I guess it wasn't the clearist of CT scans but that may be on purpose due to the low radiation levels they want to give kids. ...K moving on....We then went and saw the plastic surgeon and the OT in regards to Alistair's hands. He got a new set of hard hand splints to wear at night and neoprene ones for the day. They were happy with his progress and the plastic surgeon ( can't remember her name but phenomeonl women) said that with the hard splints will allow Alistair's extensor tendons to shorten and the flexors to relax and in time they can see if he actually has tendons that will extend his fingers. If not they can do surgery and take tendons from one part of his hand and put them on the distal end of his middle finger to get it working properly. Crazy stuff. So ya that was our crazy ONE day! Saturday we just totally vedged and then we headed out to see my cousin Bo in Burnaby for a couple days. It was good down time and allowed the brain to separate away from the hospital world for a bit. Bo ( a Ft St John'er ) had some good ol' Northern beef for us from his Dad's cattle ranch. Mmmm scrummy. We were back into the Children's Hospital world on Tuesday for an Upper GI Study & Chest X Ray. The Chest Xray was just for the surgeon to follow up and the Study was to determine how his body deals with the milk from swallowing right to the first part of his small intestine. Due to his surgery and everything there can be complications and I was informed it all looked well. Wednesday we had a Feeding Study done and that determined whether Alistair was aspirating while eatting. There did indicate slight aspiration but not enough for them to get me to stop breast feeding THANK GAUD! If that was the case I'd have to feed him thickened breast milk! ACK that would have been a headache. They do want me to start him on iron fortified pablum here sooner than later though as they feel he could acquire an aversion to solids. So that will be just fun! Well our last day at the hospital was Thursday. Alistair couldn't eat after 9:30 as they put him under anaesthetic for the MRI and a spinal tap. That was lovely really as he was so unaware of the invasive procedure. I find that those bloody spinal taps, although very needed at times, are horrendous with kids. Dr Miliea who performed the spinal tap was incredible she does a substantial amount of the ones in Children's. I have quite a lot of concern with them due to various reasons. I asked what their limit is on poking before they stop due to unsuccessful attempts. Well she said "If I can't get it on the second attempt its generally due to a physiological reason" and then they do it under flouroscopy. So in other words She ROCKS! Alistair got one poke. They did a spinal tap as they want to send it to test his neurotransmitters. Basically they want to rule out any metabolic issues. I also found out that there wasn't anything drastically standing out on the MRI but that it needed to be read appropriately in detail to determine the full results. I have to say i like the fact there is nothing drastically standing out. Who knows it may indicate he had a hypoxic event (lack of O2 to the brain at some point during delivery or something) but I can deal with that over a cancerous tumor. Its all relative.....You know just being down at Children's makes one thankful for the little amount they have to deal with. One sees children of all ages obviously dealing with cancer, others have severe deformities, some are being wheeled around appearing ghostly white with who knows what on their plate,.....although mom says that one can never compare your problems to others as they are not your problems it still pulls one out of there own little bubble and makes one realize how many people out there are dealing with a shyt load of stuff. ...........For example...While waiting for the Upper GI we had a little chat with a young mom whose son was 10 months old. One month ago they diagnosed him with Cystic Fibrosis. They started to investigate as he hadn't gained any weight from 5 months on. The little guy was so super alert yet obviously very tiny. While we chatted she fed him 4 teaspoons of vanilla pudding stuffed with pills. She said "this is nothing. I have to give him medication 30 times a day!" Yes not 30 meds but 30 TIMES. ...I will no longer complain about Alistair and meds! ...It was actually something I brought up down south as he tends to aspirate on his meds and we were able to do some major down sizing on volume solely by several ideas from various people. The dietician told me about Vitamin D drops that you literally give your kid a drop. You either put the drop on the soother or nipple and voila finito! No 1 ml of stick stuff. If any of you want to check it out go to http://ddrops.ca/ Another thing the neurologist did was give me a perscription for phenobarb tablets. I just crush the pill finely and mix it with breast milk and again no more sticky stuff and I went from 2.5ml of sticky to 0.8 ml of no sticky! Yahoo. Honestly it makes the world of difference.........Well I'm obviously rambling on and on and on. Sorry I took a bit to get on and update you all. I was a tad pooped to say the least when I got back and I tend to forget how many people stay updated and support us through the blog. All it took was a few concerned phone calls and here I am writing up a storm. Trust me anyone can call when ever they want as if I wanted to keep it all to myself i would never have started bloggin or I would have stopped by now!...........Just one more thing. I've had several people concerned how I'm making out! THANKS! I'm honestly feeling really good. Of course I have my total break down days where I feel mentally and physically out to lunch but truthfully I'm on top of my game about 95% of the time and the other 5% I need support. So thankfully as I've said time and again i have an incredibly supportive husband to the point he just won't go to work if he sees I'm in need of a solid support and my mother his also fabulous. She interacts and takes Alistair a lot relieving me of the guilt of not interacting and promoting his overall being all the time. Mom actually came down with me to Vancouver and THANK GAUD. It was just nice to go back to the hotel room and watch the Raptors get squashed with my mom and chat about the deep stuff when need be or have a laugh over the Mercer Report (my favorite tv show). So yep I don't feel at all bluely or depressed I just have a rough day here and there which i would thing would be expected. Well little Mr Munchkin is calling out for me!

Can you believe its December?! Merry HO HO to all

Cheers for now!

Julie
PS the one video shows a side few of alistair during the feeding study. you can see the nipple of the bottle and the fluif going down his throat...the other is alistair rockin out to rascal flats

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