Let the Festivities Begin!

This is a cross stitch pattern I'm doing and converting into a stocking for Alistair. I'm about half way through so it will just be pinned to another stocking but next year it should be finnito!

Growing up Mom made us a gingerbread house each December and then on New Years Eve at the strike of midnight we'd smash it to smithereens with some random utensil from the kitchen. Then of course mow down until we had an uncontrolable sugar high! This was my little way to make the house a tad more festive even if Alistair isn't at the smashing things to smithereens stage!

Since I am the official cook of the house (to moms delight) I decided we would have a traditional danish feast tonight. It included apple and prune stuffed pork, cream and white wine gravy, purple cabbage, caramilzed new potatoes, salad, and rice pudding.....Mind you we were all too stuffed to eat the rice pudding tonight. We also have another tradition where you sneak one full almond in one of the individual rice desserts and whoever gets it wins a box of chocolates. So needless to say the chocolates remain wrapped!

Daddy and Alistair resting by the Christmas tree

Have a Great Christmas Everyone!

Love to All

Julie

Jason

&

Alistair

YUM YUM......PABLUM!

Alistair's First Feed EVER!!!!
Yessiree we have started the good ol' messy pablum and he is in heaven with the stuff! Ya I know its a little early but when we were down having the feeding study preformed the OT recommended an early start due to the possibility of him acquiring oral confusion. So by starting early we may get around that. Well the kid thinks its the best stuff ever. He literally hums through the whole feeding and I've already thickened it up pretty good and he tolerates it quite well. No choking but lots of pablum art occuring...LOL The little gaffer has given us a few nice surprises lately. Just yesterday he decided it was about time he stopped laying flat on his back and started rolling to his side with bigs smiles on board. Then this morning he nearly got right over on his tummy. This of course made me all extremely happy as he obviously has it in him to progress and develop forward. As Jason says..."the kid isn't going to be 7 and laying on his back there hun!" Well if you know me I was worried about it..but hey I have found out that that is a part of what motherhood is about. Once one thing has cleared up you seem to literally dig for another to get worried about. Its amazing really when I think back of all the things I don't have to worry about anymore....no feeding/latching issues, no pumping off milk before each feeding, no more blocked tear duct, no holding Alistair upright for an hour after each feed, he's had his 4 month immunizations and he didn't react, the CT is over, his lungs seem clear and working as they should, he's vocalizing, he's put his hands to his mouth.....like wow thats a ton not to worry about so bonus for that! And like I said its just nice to know he is progressing even if its at his own rate!...Jason got one whole trailer full of stuff down thanks to the help of his sister Bonita with packing! Now just a few more and we can get the rest in the spring! Bonus for that!....Now for house hunting in PG. We've decided to look at fixer uppers but the last was more like a demolisher! ......Well I had better run as Alistair and I are off to the Paeds Unit here in PG for a interview. WHOOP WHOOP were gonna be on the telly! I'll tell you more about that later!....

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

The Proof is in the Pictures....

Grandma Hedges babysitting while doing some watercolor painting

This is how I heal the brain! Yes he's my new buddy. I heard he's not going to stick around!

The eyes and mouth were made with my chocolate shortcake I made.

Daddy having his calming affect

Alistair mezmorized by the camera

Mom and Alistair cuddling while in the hosptial.

Alistair receiving the noninvasive EEG which was thankfully cleared.


So ya I just thought it would be nice to send you all some pictures after I had obviously had verbal diarrhea on the blog. I always find its best to write when I'm still in the emotion and I guess i obviously was there. I didn't realize how carried away I got until I posted it. So thanks for reading, replying, phoning, and just thinking of us. Because ya...that was a little heavy on this household. So as you can see I have found pleasure in getting outside. Just me and Mr. Snowman hung out and had a very good time actually. I've made a pact with myself that I have to get outside daily no matter what. Yesterday, I started clearing a cross country ski trail out back here on Mom's farm. It should be really nice as its a bit rolly polly and cuts through a lot of nice popular and pine. I was going to take the whipper snipper out today and clear it even better but obviously the snow came and changed my plans. It definitely created a winter wonderland here. It was absolutely gorgeous when we woke up...mind you I LOVE snow!

K Thanks Again

Julie

Truth Be Told! and the Latest Drama...

Hi Hi!


Jason and I have decided to give PG a good go. We've always talked about moving back to PG and now with a little fella part of the package it makes it all the nicer to be closer to mom. Plus it's good timing to trial PG out while I'm on mat leave and Jason can test the waters down here. He'll still do odd jobs up north but we'll just see how it goes. I don't really expect either place to be hummin busy over the winter so we may as well be here with Grandma. I actually made a blog for his business as well to add a visual when we advertise in the paper. Check it out at http://jrmacmillanconstruction.blogspot.com/ Mom is in absolute heaven having Alistair about. I'm sure at times its a bit of a challenge for her having the full house. She went from having a place all to herself to sharing it with 2 dogs, her daugher, her son in law, and her grandson. I think for the most part she's lovin it!.... I have to say if we do move permanently away from FSJ I'll miss the people forsure. I've made some really good friends there. But another one of the drawing factors to PG is the huge slash in house prices.

So I have been attempting to write about moving here for awhile now but I always get started and then something else happens. Well SOMETHING ELSE HAPPENED. Friday afternoon I took Alistair outside for a walk. As usual he had his massive melt down as he seems to not be a lover of the outdoors as of yet. But my attitude was "tough kid" I've been feeling quite house bound so he had a good fit while I walked around moms farm with him flailing in my arms. Well when we got back inside I put him on the floor and he instantly fell asleep. Mom and I laughed as his leg was all cocked up funny and I came to the computer to start the above blog. Well I heard mom fussing in the living room and went in and she said he was really stiff. Well when I took him he was what seemed to me spasming to the right. His spine was completely curved to the right along with his neck and right leg. But along with all that his bloomin eyes were fixed up and over to the left. This lasted a couple minutes and then it went away and bam he was zonked again. Then it happened again. I stopped ...put on my nursing hat ( as I'm always worried that I'm just being paranoid from instutionalization) and assessed the situation....a minute later Mom and I were heading to Emerg in PG with Alistair....When we got there the place was hummin busy. As you know I've been quarantining him and being strict with his interactions. So to my utter dismay we head into this craziness. Well I have to say I was very impressed with how quick they got us in. I think we waited 5 minutes. The part that really got me was the Locum Doc. The bloody fellow was hackin and coughing up a storm....at least into his sleeve...and yes he did use hand sanitizer but even Jason, who turned up shortly after we arrived, gave me the look...anyhoo on top of all that the silly bugger stuck his bare sanitized finger into his mouth! ACK. I kept my mouth shut as it wouldn't have made a difference at that point and plus I didn't want to burn any bridges of getting fast tracked. Before long they were taking us up to the Pediatric Unit. So between the time of 4pm and 7 pm Alistair had aproximately 10 of these spasms and then he would zonk out. I was so hoping that this was just going to be a simple febrile seizure. But there was no fever. The Pediatrician on call that night started talking of spinal taps, CT scans, EEG, and blood work. First of all, I've experienced being the nurse during spinal taps with larger children and it isn't the nicest experience to say the least let alone on my 4 month old son! Plus with the CT scan I was like WOOOOO hold your horses there. This is said as when I worked up North I had heard people such as Dr Mackey talk about how children who have had a CT scan can have a higher risk of aquiring cancer. So to me that was a absolute NO or at least a last resort after seeing results from less invasive stuff ....I tell you its a bugger to be suddenly put in a position where you have to make decisions and quick ones in regards to your kid. I said yes to blood work and an EEG (which is a noninvasive test that measures and records the electrical activity of the brain) and with a hell of a lot of persuation I said yes to a spinal tap but I told the Pediatrican he had 2 attempts and that was it. ....Well I nearly threw up during the spinal tap as I sat in the corner watching them fold our poor kid literally in half as he had a massive melt down. I was so close to calling it all off. But one sure struggles with that...you want the results ....does Alistairs symptoms really show a need for a spinal tap....if we don't try and it is something then what...like hells bells its not easy. Plus you have some random guy with a needle sticking it into your kids back. And yes I know he's a pediatrician but we all know that there are people in every profession that shouldn't be there. Not that I'm putting this guy down I'm just saying mama goes in blind. I have to say I sure was wishin I was in FSJ with Dr Moody at the bedside. I just say Dr Moody as I've seen him do a spinal tap on a child and man he was smooth for a lack of a better word. Anyhow the doc wasn't successful and we called it quits. They drew the blood work and that all came back normal except the lymphocytes (shows a viral infection) were elevated and thats it. I was so hoping that something would show up there that would just clearly explain these "spasms" or seizures as the doc was starting to call them. Anyhow, the weekend was hell. We were really just waiting for Monday to arrive where our own Pediatrician would take over care and everyone would come back to work so all these other tests could be done. The other crappy part is the doc was talking tumors, lesions on the brain, viruses, etc... Then on top of it Alistair went down hill over the weekend. His anterior fontanel or front soft spot was visually sucken in on Sat and Sun which had never been the case before. His vitals were super stable yet he would have a total conniption whenever we would pick him up. He just wanted to remain in the crib on his own and he's usually a pretty cuddly fella. Monday at 1am Alistair finally let me hold him. At this point I was beside myself. I definitely was trying to keep things together but flipp ones brain sure can go on a run away. Each time I held him I wondered if it could be the last. The sucken fontanel alarmed me and all his other symptoms. After having a good bawl and cuddle for several hours I jumped in the shower and talked myself back to sanity. Needless to say I really didn't sleep that night. ...Luckily he just got better and better from Monday AM onward, wanting and craving more attention. At least during this whole weekend process he would put up with me holding him just for a feed and then it was instant melt down. So at least his intake was ok. Anyhoo Monday we got an EEG done and today we had a head ultrasound. This evening we found out from Doctor Earl, our pediatrician, that they both came back normal. Whew! I nearly cried. As for his sunken fontanels they are still depressed. However, my super smart little bud there ~ Sandra Whitney~ was chatting with me today and came up with the idea that perhaps Alistair's spinal column was nicked during the attempted spinal tap. Therefore, CSF (spinal fluid) could have leaked out and caused a depressed fontanel as the brain and spinal column are as one. When prego women have this happen after an epidural they can get massive headaches when they move or elevated their heads so they need to remain horizontal. So this could explain why Alistair wanted to remain horizontal all weekend and would have a melt down every time we tried to pick him up. Anyhow, I passed this by Dr. Earl and he agreed this was very likely the case. My poor little man! .............So its been a hellava long weekend for this mama along with Dad and Grandma. I have to say though that there were a heap of wonderful staff that kept on checking up on Alistair and I while we were in the hospital. Eunice, the lactation consultant, Rita, the physiotherapist, and many of the nurses who had originally cared for us when we returned from Women's Hosptial. They were so great for my brain. Everytime they came around I would have verbal diarrhea to get things off my chest! Jason of course was the best. He stayed in the hosptial with us the whole weekend and kept me grounded and slowed me down when I really started to sprial out of control. You know now it almost seems ridiculous how worked up I got internally but hells bells you just don't know whats causing those stupid seizures. Mind you we still don't. Even though the pediatrican doesn't think they were febrile I still think they may have been. This is said as when we were at Women's the nurses always commented on how low Alistairs average temperature always was. Therefore, perhaps a temp of 37.6 C for him would actually be quite a significant temp. Plus he had one of these similar episodes within a week of his 2 month immunizations but it lasted seconds and I put it down to my paranoia. However, he had been dealing with a fever from the shots and it was a scorching 30+ C outside. Then with this last situation he had been off all day but I never took his temp. Then when I bundled him for outside he truly went a bit bazzerk and perhaps his temp sky rocketed quickly and he had a seizure. Its common for kids under 3 (i think 3) to have temperature induced seizures however Dr. Earl said its rare for under 6 months. Not sure why though...I should have asked. Anyhow, perhaps I'm grasping a bit but at least the electrical activity of his brain came back normal and we'll just hope that this seizure issue has or will peter out! He definitely has been his little normal self since Monday...smiling....kickin....swattin....so yahflippinhooo for that! You wouldn't believe how much I loved the smell of the dirt on the farm as i opened the car door to take Alistair inside Mom's house!!! Ahhh yes hopefully I can just continue to look back and smile........Cheers Peps J

Grandma MacMillan

Grandma Hedges Getting Some Looks

Alistair and Grandma MacMillan Having Cuddle Time

Enjoying some Snuggles

Alistair intently listening to Polly

Grandma MacMillan with Alistair

Hello Hello

Well its about time that I stuck another little note up (actually knowing me it won't be so little!) We've been busy with a bunch of visitors the last few days. Grandma MacMillan flew in from Nova Scotia to Grande Praire and then drove down with Jason's sister Bonita and her family towards the end of last week. So we had a bit of a full house for a couple days which was nice. Polly (Grandma MacMillan) was in her hayday cuddling and cooing over Alistair and Hayley (Alistair's 2yr old cousin) while she was over. It was great for her to see how well Alistair really is doing. I forget sometimes that people wonder how "right" he really is as sometimes its hard to tell by the pictures and little video clips. And all of you are too polite to bluntly ask! (Not like me!) Well for all of your information he is right as rain! Ya we are very fortunate. He seems to be mentally a little whipper snapper. As I've said before he does seem somewhat delayed with reaching milestones such as being able to hold his head up, pushing himself off the floor when on his tummy, etc...but like I've said the poor little gaffer was paralyzed and sedated for the first two weeks and then pretty much on his back for the next 4 weeks, AND 2 weeks early! So heck what can we expect. But ya ...he mentally and physically seems to be pluggin along perfectly. The only thing that really needs work is his little fingers. Alistair and I are going back down to Vancouver to see the team at Women's on November 20th. While we're there I also got an appointment with the Occupational Therapist who is a hand specialist and she wants to make him another pair of splints. We almost can stretch his little fingers out completely straight now but he isn't able to extend them on his own so that'll need a bit of work. If she is available we will also get to see the plastic surgeon again for her to reevaluate his little fingers....I guess I shouldn't say thats the only thing that needs work as we are constantly working with him in different ways to help with gaining head control, upper back strength, and just general stimulation. But really I think we all do that in some way or another probably without realizing it. .....Well I'm going to be looking into the H1N1 and general flu shot here tomorrow. I don't know if you realize it but you may get the flu bug or H1N1 bug and not be affected at all but by not being vaccinated against them then that means you may acquire the bug and pass it on to those that are not as strong to ward the bugs off. So thats why they always give Health Care Professionals first dibs on getting the shots as we tend to be around a lot of immunocompromised people. So ya a little sniffle for us can be a deadly sniffle for another....So if you were ever wondering what the heck the point is.......THATS THE POINT! : )...Food for thought anyhoo......Well I had better run off to bed or I'm going to be bagged like I was today! Hope all is well on your end! Cheers Julie.

Milestones!

Alistair lovin the new tub from Grandma Hedges

Grandma conquers two in one day~ soother and bottle

Peaceful!

Grandma Hedges and Alistair

Tummy time

Alistair in some funky little booties from Aunt Bonita

I still have Rita's voice, the physiotherapist at the PG Hospital, echo in my ear on a regular basis. "BreastFeeding isn't the only thing you have to work on with Alistair Julie" Although I know this I still find myself hoping up to his demanding slap of the tongue. I have to remind myself that he doesn't have to be fed at that very instant. So the last few days I've been making an extra effort to work with him prior to the feed. Especially since we can't do any tummy time or anything that manipulates him too much for the first 1 1/2 after a feed as then he has a big ol' up chuck. Because Alistair was on his back for the first two months of his life without tummy time he really doesn't find it a great position to be in. So the fact that we have graduate to 10-15min of tummy time 2X a day is huge. Its my next big push is to get him more and more comfortable with it as I read and hear everywhere that this generation of kids are naturally more behind then the last generations as there is such a lack of tummy time. This is partially due to the SIDS (sudden infant death syndrome)rules to never let a kid sleep on their tummy due to the higher rate of SIDS in this position but also due to the strollers, swings, bouncers, etc.... People just forget to put them on their tummies. Interestingly enough the physiotherapist told me at Women's Hospital that they see a lot of children coming where parents brag about the fact their kid went from lying on their back to walking and totally skipped crawling. However, she says this isn't as great as they think. This is because when they are on their tummies they develop strong upper back muscles from pushing and crawling, plus they develop a lot of their fine motor skills with all the tactile on their hands, tummy, knees, arms etc....So she was telling me that these kids get in school and actually are set back and need learning assistance as they lack fine motor skills and control. They have a hard time reach the opposite hand across their bodies and fine motor control for holding pencils etc...I thought this was very interesting. Its just funny to think that in this day and age we are setting our kids back from something so incredibly basic. I have to say thats what is so wonderful about having all this access to OT's, PT's and the neonatology clinic as they intervene and educate me where need be instead of trying to intervene and change things at a later age when its a lot more difficult. ...The Infant Development Program lady is coming out today to teach me some massage therapy techniques that I can use with Alistair. I was reading this morning that a study showed that if one massaged premature babies 20min a day they thrived better than those who weren't. They are not sure if it is due to the massage or the basic interaction but hey what a great way to interact. I have to say I'm a total sucker for a good back massage so it sure can't hurt him any. If anything the massage I'm already doing on his hands is helping immensly......Mom was playing with Alistair yesterday and got him to take the soother and then on a bottle of my breast milk. This was super as we tried the first time and it worked but it hadn't dawned on me that I needed to keep it up or he'd loose it. So we were definitely struggling with the bottle. But now he's back at it. Just a relief in a way incase something every happened to me where I couldn't feed him for a bit at least we have a couple months worth of milk for back up in the freezer....Alistair has also started to smile a lot more...loves his Dad! He's cooing more, intentionally hitting things, holding his head up a 45 deg when on his tummy, weight baring on his legs when held, and he actually did a little bit of a giggle here a few minutes ago for the very first time! He is literally changing before our eyes. I can't believe the sleepers he's getting into now! Well I had better get off this blog and go have a shower.....

Toodaloo! Julie