Friday, September 25, 2009

Synagis Shot

Went in to his Pediatrician's office to get his Synagis shot for RSV and his flu shot. I've heard other t18 mommies whose little ones have gotten RSV and gotten really sick or died. It is so scary. Blessed that we were able to get the shots. They are $1800.00 a shot each month for I think 5 months. Thank goodness for insurance!
Since last week he is up to 11 lbs 13.5 oz! Yay!!!

Wednesday, September 23, 2009

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!!

Sunday, September 20, 2009

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.

Tuesday, September 15, 2009

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.

video

Saturday, September 12, 2009

Laughs



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

Friday, September 11, 2009

Forgot to Mention

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

Thursday, September 10, 2009

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.

Tuesday, September 8, 2009

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.

Sunday, September 6, 2009

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.


video

Wednesday, September 2, 2009

September 2, 2009

Caleb woke up this morning like usual at about 6:30 am. He is like clockwork. He starts flailing around because he wants out of his bassinet and wants to lay in our bed. Tell me he's not like any other baby :) Daddy & I layed there with him. It was a nice morning. Then he wanted to be held. This is something new. He usually wants to be left alone. Now he cries because he wants to be held. And don't you dare try to lay him down when he finally falls asleep...he knows...then he's REALLY mad. I love watching him sleep in my arms. His eyes roll to the back of his head, he gets this silly Mr. McGoo grin and sometimes I get a little laugh. What must he be dreaming about? Must be the angels playing with him.


Had his GI appt. Caleb is 10lbs 4 oz and is 22 1/2 inches long. Way to go son! Daddy & I love you so much. You continue to amaze us.

Tuesday, September 1, 2009

September 1, 2009

I am finally getting Caleb's blog set up. It has only taken me 5 months to do! It was a pretty quiet day other than the arguing with different agencies trying to get respite care. It looks like it just isn't going to happen. It is hard when you don't have any help or just relief sometimes. But then I look at my little mouse's face and it all seems better. Caleb loves to get kissed on the forhead. He just laughs. I sat here thinking about all the things I'd love for Caleb to experience. Will he ever get to see a sunset, play in the sand, get to see Shamu or be able to hold his head up so he can rest on my shoulder. I would love for him to wrap his arms around me and I'd hold him so tight. I love him so much that whatever he does is such a miracle...I'll take it and cherish each and every moment.