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