Cardiology appt

The appointment went well. There hasn't been any change. Which is a good thing. We would like it to be better but at least it isn't worse. I talked with his Cardiologist about how another t18 mommy had told me about how her little one's pulmonary hypertension had gotten better with having a bipap. He explained that it can get better if the ph isn't caused by lung disease. I asked if we knew that with Caleb. He said no but that it may be a good idea to have a scan of his lungs to see where the cause of the ph may be. If it isn't lung disease then there may be hope to correct some of it. Praying, praying, praying. The only problem is that we will not allow Caleb to go under sedation for any of these tests. It is too dangerous. So we need to see how creative we can get to get this done. He is weighing in at 11 lbs 8 oz!!

Happy 6 month Birthday!!!!

We celebrated Caleb's big day at Silver Springs. It was a beautiful day. I can't believe that he is 6 months old...I just cry when I think of how incredibly blessed we are. Not only for having Caleb but for having such a wonderful family.

There were hardly any people there. Caleb got to see birds for the first time....and boy were they loud. We got to tell Caleb's story to several people. They wondered why we were celebrating his 6 month birthday. So I had to gladly tell them :) We made some beautiful memories. Devin just adores his little brother. We were sad that Corey wasn't with us. But we will go again soon. WHAT AN INCREDIBLE DAY! We love you so much Caleb.

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.