School's coming!

I cannot believe that the summer is almost done! School starts next tues. I am SO excited. Kristen is too! I got a phone call yesterday from her teacher. I was shocked! Just wanting to see if anything had changed over the summer, or anything she should know going in! REALLY serious! A teacher who cares outside of the classroom! How often does one see this?! And the great thing is...she was Joe's Grade one teacher. She's teaching Kindergarten next year, and then going back to grade one! This means, Kristen will have her for two years! A teacher for two years that gives a rats bum for her students! WOW! The principal called me later in regards to the fundraiser that we're doing. Same day!! lol. She also let me know that the SEA for kristen does have level one sign! There's support of a school for a child's success! We are sure blessed. Advice going into school....for those who have children with needs, or really without needs and you have worries. Start with all of the workshops that the agencies you are dealing with have to offer. GO to them!!! They are informative. There are other parents with experience too. Write down your questions. Ask them! Go to the school. Talk with the principal. Get to know him/her. Join PAC/PTA meetings, just to get a feel for them, before you get into the school. Get to know the teacher's. Make yourself seen! They will treat you with respect when they know that you are on board with education! Don't be in their faces either. Let them do their job, but allow them to know that you're supporting them. Try and volunteer in the classroom's with reading. Not too often as to take away from your child's school experience either. Let your children go...they will be ok!!! Happy Summer, and first day of school!

Disneyland

Well here I am sitting in Disneyland. I've been here for four days, and go home tomorrow. I am here for a Tupperware conference and am having a blast. I left my kids at home. I feel guilty about it. But at the same time for my mental health, I really needed this break. I have never left my kids except to give birth...lol...which happened a few times over the last number of years...lol. I must say, I have never been here before. WOW! I am in stimulation overload. I have had so much fun. But I am so ready to go home to hug my babies. I can't say that I won't do it again though. I think that for my sanity, now that I know I have some, I really did need a get away. But I still feel guilty. I know how much my kids would love it here.

Oh well. MAYBE next time. We'll see.

School starts in a week and a half, so the routine will be back to the grind. I'm pretty excited about that. I know that the kids have been asking over the last couple of weeks to go back, and that they miss it. I think that Kristen will be the biggest change. She's talking so much more now, and so much more clearer! Truely, it is amazing. I can't wait to have school start so that I can get back into the classroom's to help out too! There isn't much left to get together. Just a few more shirts for Joe, and away we'll go!

A Gift

I was given the most amazing gift from my best friend yesterday. I was given the opportunity to watch the miracle of life being born. It was truly an amazing experience. Isobella was born at 4:17am. After her poor mommy was in labour for 24 hours...to the minute! She was 6lbs 2oz. The amazing thing was the nurse was having my friend try to push a bit before the dr was called. And there was the head. Second push, and the head was half out. I just told the nurse, let me know what you want me to do? She said here, put a pad over the half born head, and said hold. Ok, no problem. I held, looked at my friend, and knew, baby wasn't waiting. She delivered the rest of the head into my hand. Now some may think this is all weird or gross. But it is the miracle of life, and when in the postion you don't look at things the same way. I was just in awe. At the end of it all, her little girl is just the perfect of perfect babies! And to see daddy's face when he heard it was a girl. You can NEVER duplicate that! Thank-you so much to my best friend. Although she may as well be family!

Renal Clinic

Because Kristen had complete renal (kidney) failure while she was on ECMO and in the ICU, we became a part of a study that BC Children's was doing. They wanted to know if there was long term effects on the kidney's after function resolved. Kristen was the oldest (almost three at the time) and most severe case (almost 7 weeks of failure) that they had. So I agreed to do the study. I wanted to know for my own knowledge as well, as no one had any answers as to whether or not we follow her or not.

The findings were that she was indeed on the border line of being almost mildly kidney diseased. Meaning, if we hadn't done the study, and hadn't done a 3 hour GFR test (radioactive dye put in her and four blood works), we would have never known....until it was too late. She would have been in complete kidney failure. And would have been needing a kidney transplant. Now because they caught it so early, we are monitoring it.

So the plan, nothing has changed too much. She is still stable. Her creatine (sp?) has risen, but she's also grown too, so it should a bit. So in another year, we repeat the GFR test and see where we're at!

Joe turns SEVEN!

Holy moley! My baby boy is now seven! How he's grown. He starts grade 2 in a month. He's so excited!....lol...as am I! He is doing so well now. No one would really recongize that he is on the ASD (Autism Spectrum Disorder....he's PDD-NOS) at most times. He's reading now, and doing math adding and subtracting. He's so proud of himself!

It's been a rainy Summer

Since the end of school, we have gone camping, gone to the movies, had the kids playing in the back yard...well when it's not raining. What a pitiful summer it has been! We got the kids a little pool, and they love it....when they can enjoy it that is! I think that mother nature has been PMSing lately.

We leave for a two week camping trip on monday. Well not really a full two weeks. I will be back and forth with the kids through out the first week. Joe still has tutoring and sportball soccer, and Kenny has IDP etc. The second week, I only need to come back once. But the kids are just as happy to go for the nights anyways.

Kenny has received his new stander. He's liking it. We saw the neurosurgeon this week. He's happy with the lack of brain pressures as of now. So we don't have to see him for another year now.

It's just been busy as usual...with a bit of sleeping in! September will kill me with that one...lol!

Kristen, Kristen, Kristen!

Well my little CHERUB is growing up. Last week we had her intergration meeting with the school. And believe it or not, I left feeling good! I feel like Kristen, and myself are going to be supported to the fullest. She is doing amazing things this little girl of mine.

We had a CI mapping today. We were taken into the booth, and she did her listening. She did such great conditioned play. She even hit the button when there was nothing even being presented....well, I figured out pretty quickly it was because I didn't hear it! But she did! Uh Oh, time for mommy to have a hearing test!

She was then presented with an assesment of vocabulary for 5 year olds. She quickly got bored, because she was getting it! And so the audiologist moved up to the 6 year old assessment. WOW. She did really well with that one too! I am just so proud of where she was, and where she is!

Slow!!!! Down!!!!

A blog to follow

This blog is of a 23 year old man, who has PDD-NOS, and is giving insight into what he feels and see's. So very interesting, and nice to have a voice as to what we may be dealing with with Joe. I thank him for allowing me to share!

http://voicefromthespectrumop.blogspot.com/

Water proof hearing aids.

http://talkingtwentyfourseven.blogspot.com/2009/03/water-aids.html

this person has allowed me to share this post with you. I felt that it was a nice way to let people see this too!

http://talkingtwentyfourseven.blogspot.com/2010/06/prepping-for-water-fun.html

This one was for short tuerm spraying!

Thanks so much for letting me share!

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!

Muscle Biopsy

I had a call about two weeks ago from Biochemical Disease control, letting me know that they want to do a muscle biopsy on Kenny. The hitch is that the OR time can be anywhere from 5-8 months to get a date. Well, I just stated about 3 times...lol...that she needed to physically write on his paper work, that I want to be on a cancellation list. And to put it in BIG BOLD letters. And told her that if she didn't they won't call me to do it!! Well, they called today. He has an appointment on the last day of this month! And to get those results from that test can be another 3-6 mths. Thank goodness I'm able to get him in quicker. Who know's what and if they end up finding anything at the end of all of this testing. She says sometimes it's just a mystery. The neurologist isn't convinced that based off of his brain MRI's that it's metabolic, but something genetic. So really who know's. At the end of the day, his damage is done, and he's still my little Kenny. And he will still always have challenges.

Just curious!

I see so many people from all of the world that are following my blog. I'd love to hear who you are and where you are from. Also what brings you to show interest. I'm not saying this in a bad way, just really want to 'meet' you all! So just comment and let me know, and thanks for following! It means a lot that in the world of cyber space that people that you don't know and never met, care and pray for your family! Bobbi :)

She's teaching him!

It was so cute! I put Kenny beside Kristen and Courtney on the couch, just to sit with them. Kristen started saying and signing 'play' to him. He looked at her, and she then proceeded to hand over hand him to sign play! I was filled with so much pride, and couldn't believe that she was being a leader!! She then was taking his hand, and trying to get him to press on the iPod. And in her jargon, was telling him how to use it! Adorable!