Sunday, December 27, 2009

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 was so cute. Joe wanted to help with everyone's gifts, so I let him help Kenny!

Sunday, December 20, 2009

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. 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.

Tuesday, December 15, 2009

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!

Sunday, December 13, 2009

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!

Tuesday, December 8, 2009

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!!

Saturday, December 5, 2009

2 years hearing

Two years ago today, Kristen was activated with her Cochlear Implant. She heard me say her name again for the first time. Kristen lost her hearing at about 6 mths old. It was confirmed at a sedated ABR when she was 7.5 mths old. It was routine scanning due to ECMO and high frequency ventilation. It also could have been all of the different life saving med's that she needed as well. Without this life saving measures she wouldn't be here with us today. She may be deaf, but she's alive. And as I meet, read about, and hear about these CDH babies that don't make it, trust me, I don't take for granted that my baby is here. She's almost 4 years old now, and I'm so lucky to have her. We may have challenges all related back to her rough start at life, but we survive and we make it.

Kristen has just begun to have expressive language as well. We have worked for sooooo long on signing! I mean really! Since we got diagnosis! So now going into three years! And she now has about 10 signs. YAY!! And she's also begun to have spoken words too! 10-20!! I know it's not as quick as a typical CI canidate, but I take what I can get, and celebrate the small steps each day. It's almost like because she has to work so much harder to get the small milestones that a 'normal' kid does, that it seems that much more exciting because she has truely worked hard for it!

Well Kristen, my baby girl! Here's to a happy two years of happy listening!

Thursday, December 3, 2009

Roll over Roll over so they all rolled over....

Kenny rolled over today! And he wasn't even mad when he did it! He did it with such intent and so slowly and precisely. I was worried about the direction that he went, so I put him back on his stomach to see if he would go the same way again...nope he went the other way! I was so impressed with him! It's earlier than any of the other three kids, and he was the earliest! And considering he's such a grumpy child, I thought that he would just sit there screaming...but nope! I can't wait to see what he can do next!