April 24, 2013 - 188 days post transplant

We have made it nearly 200 days since Cael had his stem cell transplant! Cael is doing great. He is now allowed to go outside anytime we want to take him for a walk or for a swing on the front porch. And the best news, which came just this past week, is that we can start to take him out more often. He cannot be around anyone sick, crowds, or school aged children, but it is still a huge step!

Cael still isn't walking, but he is crawling everywhere! He also can walk with me holding just one of his hands in mine. It seems he just doesn't quite have the confidence to take those first steps on his own. That's ok though. He will get there when he is ready.

Today he combined his first words. Adam is away for 2 weeks right now, and while we were FaceTiming, Cael looked at him and said, "Hi, Dada". It was the cutest thing! 

Visit from Nana and Grandpa

We are finally HOME!!!

We got to come home to Austin on Feb 8 after 2 1/2 months out of the hospital, but still in Houston. We are now able to do clinic visits in both Austin and Houston. We go back and forth every other week, but still visit clinic every week.

Cael's Nana and Grandpa (on Sarah's side) have been visiting for the past 3 weeks. Both they and Cael have been having a great time. Cael has really been showing off for them. We have been working on some sign language. He now knows hungry, thirsty, milk, more, all done, doggie and monkey. He also knows where his head is, his belly, his chin, and MY nose. :) He also now knows "boiler up". It is the sign that we did at Purdue University.

Since we have been home he has figured out how to pull himself up on absolutely EVERYTHING. He really likes to furniture cruise now. Just today he finally figured out how to crawl on his knees, and how to climb the stairs. All by himself. He just crawled over to the stairs and made his way up 5 of the steps.

Cael has made a lot of progress eating. He is no longer on formula, but takes whole milk. He is eating lots of new foods, including all kinds of fruits and veggies, cheerios (one of his favorites now), bread, pasta, and brisket. He is really liking to try a little bit of our dinner every night. It's nice to not have to always feed him, but let him feed himself a bit now.

Medically (I know that's really what you want to know about) he is doing very well. He has B and T cells, but they still don't know if they are functioning. He is still getting IVIG every 4 weeks. That doesn't look like it will be decreasing anytime soon. The doctor did tell us we should be able to start taking him outside in April or May, once the flu season has finished. We still won't be able to take him to the stores, but at least we will be able to take him on a walk occasionally.

I am finally back to work full time. It is a little hard to leave for so long every day when Cael is doing so many new things, but it is nice to be getting back to a routine.

Big Day!

Holy frijoles Skippito Friskito! (That's what Adam and I say all the time...comes from a book we read to Cael - Skippyjon Jones) It has been a long time since I have written a blog. I thought I would be one of those who kept up with it so well, but apparently not!

Christmas was great. Cael ended up with presents from some amazing people this year. Thank you to all of those who sent presents. He has been non stop playing since Christmas. And he has a whole new wardrobe, it seems! It only took him about 3 presents before he really got the hang of the opening idea. Then, any box he saw, he assumed was a present for him to open. And bags....he just ripped the tissue right out of those and threw it to the side. He had such a fun time. We got a lot on video, at least until the battery died. When will I learn to charge BEFORE big events like that? I'm so glad we were able to spend this Christmas with family and out of the hospital. Just being out was present enough, but to be able to help Cael open presents and have a great meal with family made my day that much better.

Since then, we started to reduce the number of trips to clinic each week. We were going 3 times a week before Christmas, and now we are down to twice a week. That makes things so much nicer! Going to clinic is always such a deal. We have to get up early, deal with traffic, wait in clinic for hours, then deal with it all on the way back, too. (Small price to pay to be out of the hospital, but still not enjoyable)

Cael is finally negative for both RSV and parainfluenza 3! This means he is no longer on isolation at the hospital. He still isn't able to go anywhere except the hospital and the house, but this is such a big step. He doesn't have a cough any more, and no more runny nose. That might not sound all that impressive, but Cael has had a runny nose and cough since he was 2 months old.

Today is one of the biggest, best days since he left the hospital. Today is the last day of IV nutrition!!! They started him at 50% of his nutrition being IV, then last week it was dropped to 30% by IV. He did so great after the drop. He increased his formula and baby food intake perfectly to make up the nutritional difference. Since he did so great, they have decided to stop the TPN! I am so excited about this. No more backpack and tubes to deal with at night time. And no more getting out late in the morning because we didn't start the TPN on time the night before! I feel like this is such a monumental day for Cael!

I hope the new year has brought all of you as much good fortune as our has so far. It is only the second day of the year and we already have had 2 great days. I am so looking forward to a new year and all the new things it will bring. I think it will be a big one for Cael. He is doing so well that I think it will be his best yet. :)

Happy New Year everyone!