Friday, January 29, 2010

Nothin' really going on around here

It's just been day to day as usual. Nothing new. I guess that that is a good thing too I've been quite tired lately. I think that I should get my thyroid levels checked again. After I had Joe I ended up with hyperthyroidism so I did the radioiodine treatment and now i'm hypothyroid. Kinda suck's. Well, I've never felt like myself since then. My blood levels say that I can be fine, but the way that I feel never is. I gain weight so much easier now too. And have a heck of a time losing it. I also have ZERO energy. Well partially having four kids does that I've been following a story in Alberta though and would like to share it with you.

This link has some of the more specific details, but all in all the hospital wants to take this little boy off of life support. As a parent who has had sick kids we all know how hard it is even with that. The family is fighting it, but I feel that they need our prayers and thoughts no matter what the final outcome is.

Wednesday, January 20, 2010

Greatest sound to a mother's ear

He did it! He did it! He laughed out loud when I tickled him! It was so cute, and amazing for us! We have been so worried about the big things going on with Kenny that we haven't really been enjoying the baby Kenny that he is. He laughed out loud, and it was so normal! I know what is normal, but it brought tears to my eyes. It was great! Here's some pic's of the kids doing what they do best! Being kids. You can see how Courtney has been liking to fall Kenny in his great dud's. Kristen finally getting Courtney And a great one of Joe and Daddy!

Tuesday, January 19, 2010

Kenny's Pediatrician Appointment

Kenny had his regular monthly Dr's appointment yesterday. Somethings made me feel better. I told him how I've come to the conclusion that he's going to be in a wheel chair and how I'm upset that neurology hasn't followed up with us etc. And so he has put in a request for an EEG, which I can't say is unreasonable. He said that he could be tightening his hands etc due to the reflux as well. He said his legs and stuff don't seem tight, so that really put me at ease. But of course time will still tell. His weight is now at 13lbs 6oz, so he's growing. He's 61cm longs, sorry I haven't converted that His reflux is still terrible, and we can't go up any more on his meds, but you would think with all of the past experience that I've had with reflux that I would have thickened it by now! Duh!! So I started that last nite, and he's not screaming as badly through his feeds anymore. So hopefully that will help. Now his eyes. Well we know he's not tracking things. We do know he's seeing something, just not too sure what. He likes to watch hockey, but what kid wouldn't??!! Big white screen with little dark figures going around. So we do see his eye dr next month so we'll get more answers then. We also have a neonatology follow-up clinic next month for his six month assessment. We'll get a real picture of where he's at then. I just hope that they don't say..."oh he's doing so well if you correct his age!!" But hey, that's the way the dr's roll. So now I think that my heart rate and blood pressure can drop for now back to a normal For the moment anyways!

Saturday, January 16, 2010

We hit the money shots right now!

Yep, I can say it...Kristen now goes pee pee on the potty. I thought that I'd never see the day come! But it's here! I'm so's so normal! But really what is normal??!! Not my household by the general publics opinions...but it's my normal. Courtney sure is cute when she goes, she does the deaf clap and says 'yay' It's so cute and funny. She cheers for Kristen as well. Now I know that number two's may be an issue, but it'll come with time. I can officially say that in the day time, i only have one kid in diaper's!

Now on another note. I've been so absorbed and my mind has been so stuck on the outcome in the future for Kenny. I wish that I could just enjoy him as a baby, but I want him to grow up so that we know what we will be dealing with. I've added a couple of links if you'd like to read them. If you don't that's fine too. I just figure it's easier than explaining everything myself.

The other thing that's now got my worries going is something called Infantile Spasms. Now I wouldn't have even known about them or what they looked like if it wasn't for another mom that I met on FB! Well, i'm not sure if Kenny is having them, but the movements sure look similar. I have an appointment with the Dr on Monday anyways so I can vent out on him then. i'm so frustrated! Everytime I go to the Pediatrician he asks if the neourologist has contacted me...and I keep saying no, should they have. And he just kind of looks at me. so this time, I'm going to let him know how I feel. The fact that I had to ask him for the MRI report even though I had left a message at BCCH for them to call me and fax me a copy of the report and NO ONE got back to me!

I know how lucky that I am to have my kids with me. i just have trouble sometimes wracking my brain around how can these challenges happen to my kids. Why?? How come?? What are their futures going to look like?? I love them so much and there is so much inside of me with the unknown that scares me and breaks me up inside. Sorry, I just read the infantile spasms information last nite, and it just made me break down. Our brain is such a sensitive organ. And it can rewire itself, but sometimes there is just not enough for it rewire too. And I fear that Kenny may be that. He doesn't bring his hands to his mouth to play with them. He has no awareness of toys around him. He sometimes just looks right through you. We still don't know what he is or isn't seeing. Or if he will see. I know that he hears, because his demeanour sure changes when he hears me. And that means he needs to become my body wart and attach himself to! Again, I just wish that I could just be a mom, and be able to complain about normal my kid always just wants my attention, or won't stop whining, or why can't he write his name yet he is 4 years old. My kids will always have to work so hard just to match their peers. It makes all of Courtney's developmental milestones seem so little, when they are still big.

Ok, I think that I've gotten some of my mind out again, so now maybe I can get a good nites sleep. It's hard when it's all in your brain and needs to come out. Whether someone is reading it or not.

Again, please know that I am so happy that I have my children with me, and i do appreciate the fact that I can hold them everyday. And trust me, I do. I make sure that I hold them tight.

Tuesday, January 12, 2010

Moving along

Things have been so hectic around here. Working on potty training. Yep the big P I decided to do both girls at the same time. Kristen is going to be 4 next month and Courtney will be 2. So I figured that it would be a good example for Kristen to see Courtney working on it with her together. Court was basically just my bonus child. I didn't really think that she was ready, but figured hey why not. Well, the little one gets it! Yep Courtney is potty trained, well mommy is trained to run to the toilet every time the kid says potty pee or poo! But hey, it's not a diaper. Well and Kristen! well that's about it...she doesn't give one rat's behind about being wet, dirty, cold, or in pee! I even have cloth washable pull ups. Nope, doesn't care. we aren't giving up....but it's so frustrating! She talks about it, and smiles on the potty! Signs pee pee, says pee pee...I even went out and bought what I like to call the 'kid krapper'. It's a kid size toilet like the one's that we've all seen at the mall or where they have a lot of small kids. It's only 10 inches off of the ground and it's perfect. And since the girls share the master bedroom with the ensuite bathroom...we installed it for them. Yep, Kristen doesn't care! She will stand right there in the middle of the kitchen, lift a leg like a dog, and whiz on my floor....and then she cheers and claps. I think I'm at the point where I'm going to line my house with newspaper!!!

Thursday, January 7, 2010

I know I haven't posted in awhile

I know it's been awhile! We had a great Christmas holiday season, and a happy new year. I've been having trouble with my emotions and realizing that my little boy may end up not walking with his brother and sister's. I know that I have him with me, and I thank God for that everyday. Because after living through a child with CDH and following other families, I do know how quickly those lives can be changed and taken from you. My CDH baby is a survivor. Actually she will be 4 next month! But I did the thing that I should have done to begin with, I started googling "very extensive cysic periventricular leukomalacia" PLV for short. And well the stats show a 60-100% chance of some form of cerbral palsy. I'm fine with that, I guess...well really do I have a choice??!! I know that God only sends us special kids for special parents...I just didn't realize how much God must REALLY like Sorry sometimes I have to laugh over my situation sometimes. I have to admit that there are times that I do wonder WHY??? Why will my 3 of my 4 kids have to work so much harder to achieve what other's can do with their eyes closed. Why will Courtney have to be that sibling that is going to possibly the snickers and giggles behind the other's back's at school. We all know how mean kids can be as they get older. Who know's what the future will hold. I will raise my children to be proud of who they are, not what they have.

I have people say all of the time how strong I am...really do I have a choice. I didn't choose all of this! It was given to me. These are my children. I love them with all of my heart. I have met wonderful people and families all VIA the internet who can relate to the specific challenges that I deal with daily. I think that one day after Kenny's in school....I may hide out for a year under a bridge and just watch the world go kidding. But I will probably have my mental break then. I can't be for myself right now. My kids need to have what I have set for them to happen to have them be successful in their own right.

I should be able to be JUST a mom, and not a Physio therapist, Occupational therapist, dietitian, Speech therapist, ABA therapist, and well the scheduling manager to make all of this actually happen at the same time. I feel like I'm a part of so many cliques that I would never want to invite anyone into...the CDH clique, the deaf and HOH clique, the autism clique, the brain injury clique, the global delayed clique. Don't get me wrong. The cliques that I'm a part of have the most wonderful families and children along with them. And I have had my ignorance to all of these different challenges put to shame, and now I am more educated. I actually don't know if I'm making and real sense at this exact moment and that's why it's taken me awhile to

But here, I'll leave you with all of the stats that I have accumulated over the last 5.5 years of my child rearing days thus far....

1 in 100 will miscarry from an amnio
50/50 chance of survival with CDH
5% chance of survival before Kristen went on ECMO
40% chance that Kristen wouldn't have survived ECMO
21% is the air oxygen saturation that we breathe
1 in 150 children will be diagnosed with Autism
4-6% chance that one of their siblings will too be diagnosed
60-100% chance that PVL will also carry CP
150cal per Kg Per day to have a baby grow and thrive and have good brain development
1 in 2500 lives births will have CDH
.4% chance of pregnancy after a tubal ligation
4-26% chance of PVL in premature infants before 32 weeks
100% chance that I love all of my perfect children with all of my heart and I will fight for them to the end to help to make them self confident caring adults!