Quick Note~ well not quite quick : )

Jeeze louise! I'm a little delayed on the bloggin eh! Life has been HECTIC but GREAT! I just suddenly realized how long its been when I started getting phone calls and E-mails to make sure things are still ok! Yep things are GREAT. We've had a bunch of Audiology appointments to get things perfected. His little bone conducter wasn't working properly so we got a new one. Alistair and I also did a planned whirl wind trip down to Vancouver April 20th and 21st to have a check up with the Neurologist and to have more tests down on his other ear. I had to have him NPO (nothing by mouth) from 6 am and have him as tired as possible for a 9am appointment and we left the farm here at 6am. So the poor little gaffer was so tired on the plane and I kept jiggling him. I finally had to explain myself as the lady beside me started to advocate for him. "He can sleep just a little bit can't he?" Anyhow she still convinced me that a 5 min kip would be ok. It all worked out great and we got all the information from the Auditory Brain Response test. Basically no new news. He has moderate to severe hearing loss in both ears. I did get to talk to an Audiologist there who follows all the CDH kids. They still don't know why these kids have a high risk of hearing loss but they think it may have to do with the medical cocktail they are on in their first few weeks of life. The good thing is that out of the 65 kids she's followed none have gone profoundly deaf. So yes there is a risk that he could continue to loose more hearing. I thought that perhaps due to the fact one ear has a conduction problem and the other is sensory that the one ear would be scott free but no. Sensory lose can slowly transfer to the other ear. As usual nothing is cut and dry. We and everyone else are just really happy we caught the hearing loss so early as we can now stimulate that auditory nerve as much as possible and go in the right direction. One thing that really puts me at ease is Jenny, the Audiologist in Van. She was born profoundly deaf in one ear and with mod to severe sensory loss in the other ear. You would never know it! She counts on her little air conducter and nothing else. Her speech isn't altered in any way, shape or form and her loss wasn't caught until she was 2 years old! Her mother was a teacher though and I guess they did ALOT of daily speech therapy. But very reassuring for me......Anyhooo ya the trip was short and sweet. I got to buy my favorite Terra Breads Granola and mow down. Plus I got to see Crystal and her son Walter (born at 24 weeks)in the NICU who is looking so much better! He's extubated and the sites are set on PG. In addition, I shared some wine and yummy cheese with Jan Louise my gracious friend who puts us up when we're down south. Oooo yes Alistair has also been fitted for an air conduction hearing aid. SO we'll see next week if it works as his little ear canals are tinny which could cause a problem in regards to getting a good seal......Apart from all that. Jason's brother and girlfriend decided to drive out from Manitoba and stay in the basement of our ransacked home. He's going to work for Jason for some of the summer which is a bonus as he's done it before. So he knows how Jason likes to work.Soo ya, Jason is now crazy busy. He also has another guy working for him that he had last fall. He has built three fair sized decks in the last couple of weeks and he has a couple months of stuff lined up. To top it off we have the HUGE homeshow to go into this weekend so hopefully that'll create some more work for the rest of the summer! Its just so nice to not have to worry or wonder if the work is going to be here for Jason. So needless to say our home is on stand still at the moment. I have taken down the Xmas lights that were up for the past 20 years, cleaned the gutters and done some pruning which all spruces the place up. Now its time for me to tackle the backyard. Well so much for my short and sweet note....Jason took the camera today to photograph his deck so allas no pictures or videos until maybe tonight! K hope all is well on your side of the fence people! ((HUGS)) Julie

My Little Miner.. Priceless

OOOOoooo what an incredilbly special day. Jason and I took Alistair into Audiology here in Prince George to experience his first ever time hearing clearly. It was priceless. I thought there could be quite the issue as the kid hates hats. For the life of me I have never been able to get him to wear one. Basically I get a full on melt down. Well his bone conduction hearing aid is made so that he will have to wear a stretchy velcro strap on his head to ensure the hearing aid contacts securly with his skull bones so the vibration will transmit to his cochlea. I was expecting this to be quite the lung expansion experience for Alistair. Well he definitely got started on that mode and then all of a sudden it was like he stopped dead in his tracks. He was absolutely in awe with the ability to hear. Even how his eyes reacted was priceless. He calmed right down and just listened. I have a couple little videos that I'll add and its neat to see him just stunned with the ability to hear. He hasn't been on his prime here the last couple days. I think he's dealing with some constipation. So when thats not an issue and he's quite reactive it'll be fun to watch. We even tried putting some music on and he grinned from ear to ear. Ahh yes the things we take for granted. I have to say I really have been impressed with all the resources available for Alistair in regards to his hearing. The whole reason we won't have to pay for his hearing aids is due to the BC Early Hearing Program. The program was implemented only 5 years ago so needless to say we are quite fortunate. They pay for the first set of hearing aids (the bone conduction for one ear is $3500.00!) , all batteries for 5 years, maintenance, and one replacement if damaged. They also set you up with other parents going through the same thing as a support network and line you up with any other resources you may need such as assistance with sign language, educating preschool staff and teachers on how to optimally work with your child, an FM system for the teacher to wear so your kid can hear him or her as if they are right in front of them etc... So ya really quite amazing! ....Well I would have posted this two hours ago but a parent from the Guide By Your Side program called and we had a long wonderful chat. The neat thing is she happens to be from PG so she was very aware of all the resources available at hand. It really is amazing what you can clear and the voids that can be filled in a good chat with a parent thats dealt with the same things your going through. Yes is was good for this mama! She told me about Victory Hill Residence which is actually a cluster of 6 homes in Burnaby in which we could stay at for free if we needed to go down at any time for any sort hearing examinations and didn't have a place to stay. Just another great resource! Anyhoooo I could go on forever about the stuff I learnt today but i think we'll stop there for now as its almost midnight! Toodaloo & enjoy the videos!

Back on Track!

Hey just a quick note to let you all know I'm not going off the deep end. I have normalized forsure. I think the fact that I was dealing with PMS and the possibility that I was pregnant didn't help the heavy situation...LOL....ya it was heavy but now that Alistair is back smiling at his mother like the painful seizures never happened I'm totally good to go. Not that I wouldn't love to have another little gaffer about but for now I think Alistair needs all my energy and love. Plus I need to continue to breastfeeding for several months yet just to make his life easier, and doing that and being prego at the same time just isn't a good idea. 2010 is all about normailzing for the MacMillan family. I have decided that I need to pick up something that will get me out and about socializing a bit and getting a sweat on. So I figure a bunch of my girl cousins have to have the right idea so I'm going to join a novice soccer team here in town. The registration starts in a week. ....O some good news is I just heard from the Endocrinolgist and his pituitary gland is functioning just as it should. So thats just one more thing we DON'T have to worry about. YAHOO!!!. Well my bro decided to come home for the weekend and celebrate easter with us. So its all going to be about chocolate, BBQing and family! Have a wonderful weekend there people.....I know I plan to.

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