Neonatology followup

Kenny had a Neonatology Follow-up Clinic on Tuesday. The PT felt bad bringing us in for the visit. She knows that we are well supported in the community. Of course they saw lots of change in him and were happy. It's slow for us to watch daily though. But the last time they saw him, he was only about a month post-op for the hydrocephalus. So of course there were tonnes of change since then. They have classified him as a level 4 maybe 5 on the CP scale. There are only 5 levels, one being maybe walks with a limp. I said, that's nice, no one will be able to predict his future and every baby has a different early intervention stage, and really since he has only been without brain pressure for 8/9 months, that took him right to almost a newborn stage again, he is doing well. Now don't think that I'm burying my head in the sand in denial. I do believe that Kenny will need a wheel chair. I do believe that he will have some mobility. How much, that I don't know. But I like to think postitive. I do know the reality too. But it doesn't change who he is.

The pediatrician there has put in a referal for full genetic counselling and work up for the whole family. It's just so curious how we have won the lotto on our kids, and why. Is there a genetic componant? Who know's? Again, doesn't change anything or anyone, but will just give us more information.

Sand....yep!

I think that we have officially hit all of the tactile issues with Kristen! She has been through all of it! I think it has to do with her vision as well. So we started with cement, grass, gravel, bark mulch, and now we have achieved sand. If you saw her last year, taking her to the beach...yikes...it was like putting a cat in a bag! She would scream and dig her heels in and refuse to go! I'd pick her up and just sit her on a chair beside me. Well we went camping at Camperland in Bridal Falls last weekend. And she walked on the sand on the first day. Shoes on...but did it. No screaming, and on her own free will. The next day it was shoes with no socks and dumping the shoes every 5 minutes. Then out of no where...shoes off...thrown to the side and walking! Barefoot! HUH??!! And then the kicker, she started kicking her toes in the sand! How far she has come!

BioChemical Says....

We met with the Dr yesterday. She said it could be another 4 weeks for the muscle results to come back. They have basically ruled out almost every type of metabolic disorder that we can at this point. Our blood work showed that Gary had the same broken chromosome as Kenny, but because Gary doesn't have the same things wrong with him, it can't be genetic to that specific gene. At the end of all of this we may find that we won't find anything. But at least we have investigated. And I have exhausted all options. We will still do a genetic testing on the family after this is all complete. Just to see if there is a link between the kids and all that is challenged with them. Not that it changes anything, but it is just information. Or it may change course of treatment. I feel like I'm just a medical journal here sometimes. People's eyes start to glaze over when I have gone through our list, and the medical terms. But I'm glad to know that at least I can educate myself on my kids to the extent that I have.

Walk Walk Walk

Our family will be participating in the Walk for Bright Futures. These funds are used for both BC Family Hearing Resource Center, and Surrey Early Speech and Language Program. We have used both of these wonderful services and I am pationate about fundraising for them. To be able to support an organization that is so family based and supportive, is such a blessing. Please, if you can pledge us as we walk 4.1kms. Help to get the funds to bring down the wait list for the SESLP. They service the hearing children with speech delays. Our wait time for Joe was over 18mths. With more funds, we potencially can bring down these waits, as we all know early intervention is of the utmost importance!! And we have had the honour of being the poster family this year!! The poster has my husband and my second daughter on it, and the pledge brochure has Gary pushing Courtney and Kristen in the stroller and Joe on his bike! So cool!!
Thanks so much for your support!

http://www.gifttool.com/athon/MyFundraisingPage?ID=1761&AID=1487&PID=199183

The kids and technology

I was wondering why my screen saver was saying that it couldn't find the file. I have it as a slide show of my photo's. Well then I went looking for the photo's. Joe has officially deleted a years worth of pics from my computer. I understand why he accidently did this. The kids are constantly dragging things on the iPad into new groups. Well I guess he did the same with the pictures on the PC. I have to now go through my Facebook and copy all of the uploaded photo's back to the computer to be able to have copies. All I can say is thank goodness for FB!! And can I be mad at him, nope, I should have really been watching him on the computer. He has usually just played his games, but with the use of the iPad he was looking for youtube! And movies to watch. Darn mommy, for letting them have the freedom!

Surgery complete

Kenny went in this morning to have his muscle biopsy done. He so far has done fantastic. I can't see the incision as of yet, the dressing needs to stay on for some time. Now we wait for results. I have an appointment with Biochemical on the 20th of next month. So we'll see what they have to say.

Spring Break

Well we are half way through our spring break here. We get two weeks! They added on 10 minutes a day, to give us another week off. They did this last year with the oh so beloved Olympics here, and just carried it to this year. I personally like it. I need the break from everything. So what have we done...

We had an adventure on the Ferry Boat to Victoria. The kids just loved this. We had a beautiful hotel room and were able to just really relax. While we were there we went to the Undersea Gardens. That was amazing! There is a guy in a scuba suit that comes down and shows us all of the fish life that can be handled. We were able to see star fish, and an octopus...creepy little fella, and he has even conditioned the fish to come to a bell when it's time to feed! Really cool! We checked out the bug zoo....a bit expensive, neat, but above the kids level. But that's ok, it's all about the experience for them. We swam in the pool at the hotel and ate dinner on the roof top restaurant on the 18th floor! On the boat back, Joe saw a kid that was on the boat over, so he REALLY thought that was neat. They were making playdates with eachother, high fiving, and telling eachother "see you later dude!". The kid lives in Seachelt...lol...we will probably never see him again. But that's ok. Tues we visited my sister in law in Ferndale where she was camping. Well acutally we met her at the mall for dinner, and the kids played in the play area for an hour. It was late so back we came. The next day we went back again...it was beautiful out. Spring MUST be here! (finger's crossed anyways) They played for 5.5 hours! It was awesome. Thank goodness for my Nexus pass...the border lineup was over 70 minutes long! Thursday we played it mellow, and I just soaked the kids in the bath for 2 hours!! lol! Friday, Gary stayed home, so off to the McD's play place and then to JYSK. We needed a new mattress for our trailer. We got one a heck of a deal...then I lifted the mattress in the trailer to find MOULD!! EWWWWW!!! Could not believe it! It's not even 2 mths old. How the heck does moisture get in there...anyways to the shop it went....and now Kristen is asking every 5 minutes, Trailer??!! Fix it??!! Man they love to sleep in it even if it's outside the house!! Saturday, I did a Kids Swap meet for my Tupperware, and then we did a Costco shop after. The kids love this, cause they know that we eat there after! And who wouldn't??!! We all eat for under $18.00! It's so cheap and good!! Today, so far is just mellow. Who know's what the rest of the week will present. I'm sending Kristen to PALS (her deaf pre-school) and Courtney will join her. This will give me 3 days of 4 hours to spend with just Kenny and Joe.

Kenny has his muscle biopsy on Thurs. I was able to get in on a cancellation! That's right it pays to say, "PUT ME ON A CANCELLATION LIST" If I hadn't we'd be waiting at least 5 mths. Then we meet with biochemical disease control on the 20th of next month...we'll see what that says!