Moving along

Things have been so hectic around here. Working on potty training. Yep the big P word...lol. 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!!!

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 me....lol. 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 by...lol...just 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 Blog...lol

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!

Christmas time at the Taylor's

We had such a great Christmas. It was so nice that all three of the older ones FINALLY got the idea of what the opening part of the gifts was. I know it sounds bad, but when your five year old only got the idea of presents when he was 4, these are the milestones that you wait for. Kristen thought that it was just amazing, and Courtney did the open dance for every present...it was so cute. Joe wanted to help with everyone's gifts, so I let him help Kenny!

Baby Briana Hayes

You know I've been having a bit of a hard time lately with Kenny's diagnosis. I have pretty much come to the conclusion that he's going to be wheel chair bound and blind. I'm Ok with this. It's not that I've given up hope that he'll be fine it's just that I want to feel like I'm being realistic. His brain injury is called Cystic Periventricular Leukomalacia. PVL for short. I found a FB group on it. And hopefully I can get support from those families. And in all of these feelings of the unknown, I do know how lucky I am to have him with me. All four of my kids for that matter. Another CDH baby has earned her Angel wings. Briana Hayes. http://hayesfamily091308.blogspot.com/ I know how much these families would just love to have their children with them through out everything. It makes me then feel guilty for feeling the way that I do sometimes. Although in my mind I sometimes justify it that I'm allowed...but really am I??!! I know that I have been given the gifts of my children for a reason. I will always love them unconditonally. I just think that the unknown of the future scares me. I haven't had a worry like this one before. But in reality, these are MY PERFECT kids. Please continue to pray for all of the sick kids that we may or may not know.

A proud mommy!

Joe had his first school Christmas Concert tonite! It was so cute! I am so proud of him to get up in front of everyone and say his piece of the Christmas ABC's...
J is for Joy
the kind that you share
it makes people happy
to know that you care!

And so she climbs

I went to go on a quick Christmas shopping adventure to the States with the boys, and while I was down there Gary called. "now don't panic, but which is the closest hospital" Oh geeze, what happened??!! Courtney had climbed up onto the stove VIA the oven door, and pulled a boiling pot of water on herself. The pot was on the back burner like it's supposed to be. It only takes a second! It's not Gary's fault, it's just something that happens so quickly with kids. She has second degree burns on her left wrist, and will be wrapped up for awhile. You wouldn't know that she didn't even have use of her left hand right now! It's amazing actually!

CDH on the Little People!!

I just thought for the CDH community that this would be great for us all to see! Another baby who was born where they tape the Little People may be on the show! Here's the link to check out the baby's blog. I hope that TLC can do a bit for some CDH awareness!! http://jlozano2009.blogspot.com/2009_11_08_archive.html