Wednesday, July 29, 2009

Baby Beal is here!

Another baby was born this evening, and we need lots of prayers for him. Jackson Beal was born with CDH, and the dr's are having trouble stabilizing him. I ask that you go to the list of blogs that I follow, and just check in and pray for them. This is such a hard time for parents, and it brings back a lot of memories. Sorry here's the link...

Wednesday, July 22, 2009

And Baby makes four!

I had an ultrasound today. Just because I'm high risk, with having three previous early babies, gestational diabetes, hypoactive thyroid, and at times high blood pressure! Wow, I sound like I'm living in a 62 year olds body. Actually I think that there are a lot of healthier 62 year old's out I just get nervous with the ultrasounds. Even though I've already had one with this pregnancy, I still fear that they will find something. Once you've been through them finding something wrong with your baby, I guess I just seem to worry. All of the questions that I have, not what is it??!! But is the heart in the right spot, is the stomach where it should be, the liver is under the diaphram, no thickening of the base of the neck, the brain looks ok, the kidney's, I'm not carrying too much extra fluid??!! The poor tech' must be a nightmare for them. And they can't tell you what they find, because they're not the Dr's. The tech today was nice though and really put me at ease. My cervix is long and closed, the baby is healthy, and active. Boy is he ever...even when she went to show him to me, he turned his head away!!! Camera shy I

Sunday, July 19, 2009

Joe's Birthday Party

We do Joe's birthday parties a little bit earlier than his birthday. It's hard in the summer for everyone to get here, with everyone on different holiday's etc. The kids had so much fun!

Tuesday, July 14, 2009

Baby Avery

I am sad to read that Baby Avery's parents have made the most difficult decision that any parent would have to be faced with, to allow their daughter who has been fighting CDH for the last two months, off of all supports. I know how hard it is to live with a child going through all of the processes and medical proceedures and struggles of CDH. I cry when I read these families stories and blogs. I pray for the parents, children, and medical staff involved. I will never meet these people in person! That's even sadder! I ask that as you read this you remember how precious the children that we have with are. No matter if they are healthy, sick, or special needs. Please let people know what CDH is! If you don't know, check it out and learn. It's an awful thing for anyone to go through or endure. We have too many angels from it. We need more awareness, and research to help to stop this from happening to our children. We need the survival rate to be more than 50/50! We should NOT have to bury our children. We should NOT hold our child for the first time as he/she takes their last breath's in our arms! Here is the link to Avery's blog! Grab a tissue, and say a prayer.

Pivot Point

I met with Pivot Point ABA therapy today. It was about a 2.5 hour long meeting, just of my expectations, and what we would like to see happen with Joe and Kristen. I think that it's going to be a good fit. I just have to be on the ball and see how things go. I'm not too happy that with the funding that there is still about 10 hours of therapy time alotted a week! We have so much going on, that I don't want to be stuck at home while this is happening! We'll see what happens though. Can't knock it until we try it! We are just fortunate that living where we live that we can be picky with the supports, and how the money is spent!

Monday, July 6, 2009

Calming down

I've started to be ok with my emotions over the last couple of days. Now I just need to start getting everything in place to begin therapies for Kristen. W've had a pretty mellow weekend, and summer so far. Just relaxing and not stressing over taking the kids here, there, and everywhere. We have a camping trip planned this weekend at Chilliwack lake. That will be nice and relaxing. Not too sure on how I'll be able to deal with the It's starting to get harder to move now. I get stuck if I lay on the couch the wrong And I grunt to move! I know that's hot! Joe is really trying to engage Kristen in playing with him, and she's sometimes willing! Courtney, well she is going to give me a run! She's got my attitude. Two of me in one house...oh dear! We're all in trouble!!!

Thursday, July 2, 2009

We have diagnosis

We got the diagnosis for Kristen today. She is ASD, autistic. Wow, that was hard to write. It's not like we didn't know something was wrong with her. For me it's just hearing the 'professionals' say it. I'm happy because the funding that we get for her is huge! She will be able to have support all throughout school! It's just the label that people assume with it. Joe is also on the ASD, PDD-NOS. So it's not like we don't know where to go, or what to do with it.

I just get angry! Why does she have to have all of these challenges. Isn't there enough going on with her??!! Can't anything just be easy for her! CDH! ECMO! BRAIN INJURY! MILD KIDNEY DISEASE! HEARING LOSS! and now ASD!! I know that she will be fine, and I will be the biggest advocate for her. Joe is doing amazingly well with the supports that we have in place for him. So I have huge hope for Kristen. It doesn't change who she is to me. Or how I love her. It's just hard to know that there is something else going on with my little girl. I had these same feelings when I got Joe's diagnosis, so I know in a couple of weeks I'll be fine. In the mean time, I just get angry, and sad, and emotional, and worried about my children's future. I know from my stand point for the future that I will give them what they need, it's the worry of other kids/peers making them feel like less of a person. We all know it's a mean, hard world. I want to protect them and shelter them, but I know that that is not going to help prepare them for the real world. I don't treat them differently. I treat them like typical kids. They get in trouble just like a 'normal' kid would. They get toys like a 'normal' kid would. They get excited like 'normal' kids do...well maybe over different things, but excitement none the less.

I think that the pregnancy hormones are making this worse on me as well. I worry about Courtney. And now about the new baby. Is this something that all of them will have. No one can tell until it happens. It's not like I can stop it or have control over it either. I just hope that because it is now 2009, the awareness of everything around us is educating people to know what's out there and that 'different' isn't a scary thing. I can only have that hope. I do know that the reality is that it's not a reality yet!

Ok, now that I've gone on and on, I should try and get some rest, the little guy is kickin' up a storm telling me it's bed time!