Born July 8th, 2009 @ 1041 & May 25, 2012 @ 2305; Sept 4, 2015 @ 2250
Tuesday, April 27, 2010
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
Wednesday, April 7, 2010
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!
Thursday, April 1, 2010
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.
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