Talking to my animals

Caleb loves being in his swing....most of the time :) He has learned that being held a lot is not so bad either. Which we don't mind doing. I think the fact that he acts so much like any other baby is amazing. You can really hear him talk in the video. It may make you a little motion sick, I was loopy after taking it. But I love all the talking he did.

Laughs

Daddy was kissing on Caleb and making him laugh. I LOVE IT! There is nothing better than the laughter of your children.

Forgot to Mention

Caleb is 10lbs 7 1/2 oz!!!!

Sept 10, 2009 Neurology Appt

It is Devin's Birthday!!! He is 5 years old. Where does the time go. We made a HUGE deal about his special day. We got him ready for school, he was all set to let everyone know it was his special day :) We will be having a party on Saturday...hopefully it won't rain.

We had Caleb's Neurology appt today. Dr. Carney is absolutely wonderful. He is so positive. We went over Caleb's MRI. Yes, there are big problems because there are parts of his brain that aren't fully developed. It is a complete brain just not developed adequately. He also has Dandy Walker Malformation. This all basically means that his development is slow (which we knew), and it means that he will continue to have seizures. Dr. Carney expresses it as, it is what it is and we will handle it. I love it. He said that Caleb has great eye contact, and is pleased that he coos, smiles and laughs. Caleb will have a problem with tone bc that part of the brain is deficient. So we need to continue to work with pt/st/ot. There is a concern with the tuft of hair he has at the bottom part of his spine. There is a 40% chance with Dandy Walker Mal. to have neuro tubal issues. Trisomys also often have the same issues. There is a soft spot where the tuft of hair is and he wants to look at it through ultrasound. We may not get a great image of it but the next option is an MRI that is done under sedation. We are so angry that this wasn't done when he was under before during the his last MRI. We asked the Dr's at the hospital if we could have that area imaged. They said they don't do that it is done through ultrasound. We have 2 doctors that said differently. Anyway, we have to move forward now. There are a couple of concerns with this spot bc Dr. Carney says it is possible for him to get meningitis. My heart just sank and my head just about exploded!! There are also other things that can be a problem but usually not until later in life. So we just wait to get the ultrasound and go from there. Dr. Carney agreed that there may not be anything that we can do in our situation but we won't know that without knowing the full extent of what is going on.

September 8, 2009

Hospice called with the results of his pulse ox from over the weekend. He didn't do well. His sat levels were really low. I know we will probably have to put him on a canula or mask. He just hates anything on his face. We will get with his pulmonologist to see what she thinks. Devin had a great day at school. I asked what he learned. He said Bible. I asked what and he said that they closed their eyes and that God said let there be light. And there was. He said that only God can make darkness. That God said let there be the seas, the skies, flowers and it was done. He made people and children. He even made push pops! I just love him to pieces.

Quiet weekend

It's Labor Day weekend. It has been a relaxing weekend so far. We went over to our friends house for a bar-b-que. It was really nice. Devin had a great time swimming. He is so sweet. We have been monitoring Caleb's oxygen with a pulse ox that Hospice brought over. We need to make sure that the blow by we are giving him is adequate enough to keep his sat levels up. During the day when he is awake his sat levels are great. But when he is sleeping they dip down way too low. We will keep monitoring him for a couple more nights.

A Father's Love

I put this video together for Steven. So many times we forget that our husbands are hurting just like we are. I see how much Steven loves his children. Caleb has really stole his heart. He walks by him and says he is the most precious baby I've ever seen. They spend time just staring at each other sharing a special moment of love. After showing Steven the video, he asked to add something at the end. He is a wonderful father. I just wanted him to know how much he is loved.