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!

IVIG, B & T cells

Blogging has definitely taken a back seat to everything lately. We have just been so busy enjoying Cael's energy. Well, that, and the fact that we spend half of every Monday, Wednesday, and Friday at clinic.

Yesterday, Cael got his monthly dose of IVIG. They don't know if he has B cells yet, so until they know that for sure, they will continue to give him IVIG every 4 weeks. They say it will take about 6 months to determine if he has functioning T cells. There is a chance that he will never have those, and if that happens, he will need to get the IVIG indefinitely. Not ideal, but better than having no T cells or B cells.

They did another test to see what percent of donor cells he has. Right now he has about 60% donor neutrophils, and 40% of his own. The better news is that all of the T cells he has are donor! They didn't say exactly how many T cells he has, and I don't even know what is normal. But I'm glad to hear that he does have some, and those are donor.

There isn't a lot of new stuff going on. Everyone is preparing for Christmas. We have been baking like crazy! Lots and lots of cookies. It's a good thing no one is on a diet around here. I think I've gained a few pounds in just the last few days from all the cookies!

Cael's birthday is in just 3 days! I can't believe he will be 1 year old! This has been such an eventful year, and we finally get to finish it off with a celebration and some family. Can't wait to see what the new year brings. Look for pics soon!

Best Day Yet!

Cael has been doing better every day, and today was the best one in several months. He is eating so much better. Today he has had 14 ounces (420 mL), and it is only 5:00. I imagine he will eat at least one more time today, so I am hoping he will take about 16-18 ounces total today. He also is working on his baby foods. Today he has had 3 ounces so far. We might try to give him some more at dinner, too.

He has been rolling a lot today, as well as working on pulling up and walking! We put him down on his mat, and he rolled over all the way to the other edge. So much for being able to put him down and turn away for even a minute! He is going to need constant watching from now on. When I sit down on the floor with him, he also tries to immediately pull up to a stand. And most excitingly for me, when we have him standing up, he is starting to take steps!! This started just a few days ago, at which time, I pretty much had to lift him up to get him to take the steps. The entire time he would be upset, too. Now he is stepping all on his own, and he is so happy about it.

Other things that he now does that are exciting...If someone claps and he sees it, he will also clap. When he does this, we all yell, "Yay, Cael!" And I think he is starting to wave "bye, bye". I was skyping with my family, and at the end I was waving bye to my mom and Cael started flapping his hands up and down like I was. We will have to see if he continues to do that.

Medically, he is also doing better. His neutrophil count went down after the GCSF was stopped, but as of Friday, it has started to increase again. His platelets, white cell count and ANC have all gone up without any help from medicine. All of that is happening by Cael's new immune system.

I just can't believe how fast he is developing. I shouldn't be surprised, as many people have told me that he will fly through the steps more quickly than usual. Still, it is so exciting!

Lemons

Someone recently sent me a message with a comment that I feel is so true. She said it seems like I am tired and frustrated and that life has given me lemons. I think that is a good way to put how I was feeling when I wrote the last post. I forget sometimes how many people see what I am writing. I don't mean to ask people for their pity or anything like that. It's time that we start making lemonade, I suppose.

Yesterday and today have been good! Cael has been eating solids (baby food) like a champ! We have been starting to give him some baby food with every dinner, and this morning he even ate some. He didn't really want his milk this morning, so we tried sweet potatoes instead, which he really liked. He was so happy to eat!

He has also been rolling around a lot. The floors here are tile, so Pam got some really thick batting and is making a nice big pad for him to lay on instead of the hard tile. And he is dancing up a storm right now. We are sitting at the table, with him in his high chair, listening to Disney music, and he is just bouncing around.

His new game is to cry until we give him a toy in his high chair, then he immediately pushes it off. And of course, we have to wash EVERYTHING that falls on the ground. So we are spending quite a bit of time washing toys. Well, that is if we aren't just sitting and waiting for the toy to fall so we can catch it. He must have pushed his monkey toy off about 10 times this morning, with Adam waiting and catching it every time.

Today is going to be a good day. I got up at 7:00 and went for a run! (I haven't run consistently in years) I really have to work off some of the weight I gained from sitting in the hospital every day for 4 months. lol. I have a big day planned of Cael time and relaxing. I really like days that we don't have to go to the hospital. :)

Dec 4

What a great day we had today! Cael did so great with all his meds, and he is eating better than yesterday! His weight has gone down just a little, so we have to track everything that he eats so they can analyze it and determine if he needs more TPN. Yesterday was good, and today even better. He even ate 2.5 ounces of apples! That is his absolute favorite solid food. We are starting over with the solids and working back up.

I really try hard to be optimistic about everything. Sometimes I find myself a little jealous of those who have kids that are "normal". Because of everything that Cael has been through, he is so far behind in his development. He doesn't crawl, walk, stand on his own, or even get himself up to a sitting position on his own. I'm sure he will get there before too long, but I can't help but compare him to all the other babies of my friends. I see those whose babies are younger than Cael, but already pulling up to a stand or walking, or I see those who are a little bit older who are walking so well and celebrating their first birthdays. Until today, I was even worried he wouldn't be able to eat cake next weekend on his birthday. I'm still not sure we will be ready for him to eat the cake part, for fear of him choking.

I also am a little sad that we won't be able to afford the Christmas and first birthday we always wanted to have with Cael. Fortunately, we have received some presents from some loyal followers for Cael. I'm sure family will also be sending some things for him as well, but I still feel like I am somewhat failing in my inability to give Cael many presents. I know I sound a bit materialistic right now, and I'm a bit ashamed about that. I know there are always families who are way worse off than us. We still have a home and life that we will be able to return to when this is all done. We are out of the hospital (hopefully we won't have to go back before the holidays) with an adorable little boy who is on his way to being all healthy, and we get to spend the holidays with some family who loves us and Cael. I am so thankful to have that.

To this point, it has been the amazing donations of everyone that has gotten us this far, allowing us to spend all our time with Cael. We so appreciate everyone's help. As everyone celebrates the holidays this year, please be extra thankful that you have your children and your health. And if you see fit, please try to help someone who needs it more than you.