Topped Up

Love the sweater Sandra A.! Honestly I've had a pretty rough past week or more like it Alistair has. I feel melt downish really and have done so many a times. The whole trip started off great. I took Alistair down and we had our stroller and a backpack to get everywhere. It worked out perfectly as a friend that worked in the NICU lived between Main and Cambie so I'd just have a 20 min walk every day to the hospital which was so refreshing and of course its gorgeous as she lives right in the middle of all these old homes with amazing vegetation growing everywhere. We even managed to bypass the rain for the most part. So why the melt down? Well its just everytime I go down there everyone says something a little different and they all ANALYZE as they should but sometimes it gets a bit much hearing them say this isn't right that isn't right and then they bring in more specialists because hes "so interesting" My thoughts are its just great you think my kids issues are "so" f....ing "interesting" while I sit here trying to hold it together. Mind you they do ask me if I would mind if specialist come to see him and of course I say no problem as I think perhaps they can shed new light as no one seems to know what he really is dealing with. Plus I do think that perhaps specialist or students seeing Alistair will help other little kiddlets down the road. Anyhow the last two days he had to be NPO (no eatting) for tests...... one being a brain stem hearing study in which they put him to sleep and see how his hearing functions go and the other was for a growth stimulating hormone test to see if his glands are pumping out the right stuff in the right amounts. So then he blinks his little eyes at me and smacks his lips saying why the flip don't you get that I'm starving! One great thing is we got a new neurologist. The neonatolgy team pulled some strings and got us in with Dr. Connolly while we were down. That was great just a much better fit for us. So the last day she comes by with some more specialists and tells me that she reviewed his MRI and thinks there may be some development issues with the brain! That sent me toppling as I had been told that part was free and clear. Now I know its all grey...no black and white answers so one never knows but March had been so positive for us with his development etc and I was so optimistic and hopefull. Not that I can't remain positive but it seems every month we're hit with some unexpected turn of events. Anyhow we came home, mom (ie me) totally mentally exhausted, and the following night he has a cluster of aproximately 10 seizures in 50 min. The worst part was he was in a lot of pain ....he gave out a screaming type of cry. We didn't know if it was going to stop so we took him in and of course his last one was here at home. But they presented so differently then the others. These ones his arms were stretched out at 90 deg to his side with his hands open, his head stayed midline, and his eyes would roll back as he curled his torso. At least I can have contact now with a nurse down south and she informs the neurologist there. The nurse is very supportive and available for me to call which is a major bonus when you sit at home stewing about your line of action. The good thing is hes started on a new antiseizure med but they take 9 weeks to bring it up to their perferred dose as they slowly introduce it due to possible adverse reactions but mainly steven johnsons sydrome is the biggest concern! ACK! Luckily so far he's only had two doses and no signs of a rash. So ya I'm topped the flip up. I've also been house bound since as of course I don't want to leave him. I just like to be close when hes possibly going to go into unstable mode. Not that he really gets too unstable like he doesn't loose his airway or anything. I did get out for a walk last night though on the farm here so thats good. Jason and Mom also offer to watch him but I'm just stubborn. Hopefully thats the end of his seizing for a bit and life can go somewhat back to normal. It just is so awful to see your kid in so much pain and you can't do a flippin thing!

....Oooo to go on about the hearing test...they ended up finding that he has conduction issues in his right ear possibly due to the fact he has stenosis of his ear canal....meaning his ear canal shrinks to a diameter of about 1-2mm. The bummer part is we likely can't use an air conduction hearing aid as they won't beable to make a good fit for it so he'll have to use a bone conduction hearing aid. Which just means he'll look like he's going to be working out with whats her name on Flash Dance. Yes he'll just have a little blue band on his head that will hold on this small little box that sends vibrations of sound through the bone to be picked up by the cochlea. As for the other ear it has sensory issues which means something isn't working properly with his inner ear. Unfortunately Alistair woke up before the test is done so we are going back down in April for more tests but it looks like he can have a air conduction hearing aid which looks like the typical ones we all know. He just won't get it until after the test. However, the great news is he gets a trial bone conduction hearing aid for his right ear by next Wednesday! I can't wait to see how he'll react. The audiologist says its always fun when they get the hearing aid on for the first time. Another great thing is we don't have to buy them for the first 5 years. Thank goodness as this bone conduction one is definitely a pretty penny!....$3500.00 So in other words don't step on it! We found out all about him getting the hearing aids today so it made for a great day. I'm just so happy there is something that can be done for his hearing. Lovely stuff. ...Well peps its obviously been a bit of a roller coaster ride this past week but things are starting to settle off and I am definitely starting to renormalize. Just a lot of input in a short time. Ooo yes one more thing WE GOT A DOC in PG! The Emerg doc the other night said he'd take Alistair on as a patient. That really is a huge relief as there are ZERO docs accepting here. The other bonus is I got good vibes....so ya we've had a few real bonuses in this chaotic week. ...K I had better sign off before my finger pads start to bleed....thanks for listening......Julie

A bit of this & that!

We got out and about the last two days. He loves it as long as he doesn't have a whole lot of wind in his face. So this is making mama happy as we can perhaps do some mini hikes this summer if we keep this up!

Alistair peekin out into the large beautiful world
Mama and Alistair doing a bit of posing

Ah yes I celebrated my 21st birthday (he he) on the 20th of March and started it out with some fresh raspberries and nutella on toast! Mmmm you gotta try it people!

Mom built a scrummy vanilla pineapple pudding pie topped with strawberries. It was to die for! Prior to the pie Jason put together one of my favorites. Homemade spanakopita which I washed down with a nice Shriaz

Alistair giving you a side profile. He had the hearing test hear in PG the other day. He has small ear canals which we already knew but it does make it hard to do some test. So what we did find out was that his inner ear on his right side is not full of fluid or infection. The left couldn't be determined as they weren't able to do the test. Then they checked the cilia (small ear hairs that transmit sound) in the ears and he seems to hear low

frequencies but the high ones are questionable. We are heading down to Vancouver tomorrow for four days and we were super lucky to have audiology include a brain stem hearing test in which he'll be put to sleep for. So that will be interesting to see what they come up with! We also get to see endocrinology, the neonatology team, plastic surgeon (for his hands) and the OT for new splints. Quite incredilbe really. I still feel humble with all the amazing access we have to health care. Anyhooo Alistair remains sparkly and is showing progress once again which is lovely. You'll see in the video below that he is make a significant attempt to sit up with head control. He was starting to get a bit tired of it by the time we pulled out the camera but it sure is rewarding to see him progress. He worked on it for a good 15 minutes before he let his ma know he'd had enough.... Well folks it actually floors me how many of your are on a challenging road at the moment. Some times life just seems to deal us a hand to see what we can take. I hope you feel supported, have someones shoulder to cry on, and that you can just let yourself shed those tears and feel those emotions you need to feel in order make sense of the challenges you face. As several wise ladies said to me "try not to focus on what you can't change but on what you CAN change and channel your energy in this direction" It sounds so simple but holds so true. It helped me when times were a tad too overwhelming so hopefully it does the same for you......

Lots of Love Julie

Quite the Success!

Well we weren't sure how this weekend was going to pan out as we put alot of eggs in one basket, but it turned out to be well worth all the effort. Jason built a deck to fit a 10 by 20 foot space in the Home and Leisure Show here in PG. In order to showcase his work he included bench seating, a wheelchair ramp, wrap around stairs, and a sturdy railing. While Alistair hung out in his little tent attracting his own set of people Jason and I talked to a slew of people and handed out business cards. We ended up handing out well over 150 business cards over this weekend. Now we're looking at getting a booth in the Home Show at the end of April which is suppose to be a great deal larger then this show. We hear they have 20,000 people go through their show! At least the deck is built so it'll just be a matter of printing out a bunch more cards and doing some more schmoozing! Anyhoo it was great exposure which we were very pleased with.......As for Alistair he still is doing so awesome. It really is such a treat for us to wake up and have him look right into our eyes with a HUGE grin on his face and go to bed with the same. Tomorrow we get his hearing tested again so that'll be interesting to see what results reveal. Hopefully its promising............

A Little Helen Keller?

Alistair continues to keep us guessing! He has never been on a constant path of incline or decline. One day the kid is alert, giggling, providing lots of eye contact, reacting to stuff, and generally progressing. Then the following day or even in the same day he can become totally vacant....no eye contact, little reaction, low tone, no conversation....all of which creates a very stressed out momma! Thankfully he seems to be on a path of progression more often than not. In addition, when he comes out of his vacant state he hasn't regressed. If anything he accelerates forward a bit. The thing is when he goes into this vacant state for a longer period of time, the latest one was 3 days, than I start to wonder if he'll come out of it. All along I've figured he has had hearing issues. He did pass the hearing test while he was in the hospital; however, I was warned that sometimes CDH kids can become deaf. Why? I have no idea and I don't think the specialist know either. He just doesn't react at all to rattles or loud noises. He never startles. However, he will start to chat away when I sing. Perhaps to attempt to tune out his mother... he he he....Anyhow I can deal with that. If he's deaf we'll learn sign language. Its not like we'll have to talk over scientific papers with him tomorrow or anything. Actually I know the alphabet already as my buddy Marta and I use to only talk in sign language on our bus rides home from school! Yes ...we were the kids at the front of the bus....and proud of it I must add! But back to the Helen Keller concern....when he was in the vacant state he wouldn't look at me at all. NO EYECONTACT. At the best of times he struggles with it but once you have the connection he turns into a total chatter box and his face lights right up. But not during the vacant time. So the idea of a deaf and blind kid really started to get me. Of course one deals with whatever one is handed BUT I sure don't want Alistair to deal with that! Honestly the whole Helen Keller thing gave me some hope at least in that regard. So...I figured if those two senses weren't available I had better step up the tactile side of things. I've always massaged him off and on but now its a daily thing and he acts like he's totally in heaven with it. He coos up a storm, smiling and grinning away. I also focused on getting different textures into his hands. ....Thankfully, he is back into his lovely sparkling self which is wonderful and he can obviously see even if it takes some extra time in gaining his attention. Jason and I went to see Dr. Earl our pediatrician (who I think is GREAT!) and his whole view on this was that Alistair may be dealing with sensory overload so when he gets topped up he just shuts right off. I guess its quite common in premature babies and actually makes quite a bit of sense with the whole path that Alistair has chosen to take. Ooo it would be lovely if that were the case. Today he was actually quiet hilarious and even somewhat goofy and there was no need to even try to get eye contact which is very unusual for my little man. But o so rewarding for me! I'll post a video of my little chatterbox! He's been attentive, chatty, focusing more on head control, and he even chowed down on some hard "Farley" cookies that disolve quickly. This is a big thing as everyone has been saying he may have a significant issue with graduating to more adult like foods due to his oral issues. But if anyone knows Alistair, all the things you'd think would be an issue aren't and the ones you never expect are! ....Anyhow this mama is back on happy mode...hope this finds you all in your happy mode! ((HUGS)) & enjoy the pics!

Working on Head Control with Grandma Hedges

Sucking on a Spoon After Supper

Chewin on His Favorite Thing ...his Thumb!

Jason just had a birthday and I try to make him a special cake each year.

This one was a Bavarian Cream Chocolate Cake...Very SCRUMMY