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!
Friday, December 14, 2012
Saturday, December 8, 2012
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!
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!
Thursday, December 6, 2012
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. :)
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. :)
Tuesday, December 4, 2012
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.
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.
Sunday, December 2, 2012
Keeping the Meds Down!
Cael took all 8 of his morning meds and his 2 inhalers without throwing up at all! Yesterday was pretty good, too. He did throw up a couple times, but it has definitely decreased. Add to that the fact that he is eating a little bit again, and it all adds up to a really good weekend!
We are getting things figured out, for sure. We have learned to give the anti-nausea medicine about an hour before the rest, and that will help to keep him from throwing up. We spread the meds out to be about 15-20 minutes between them to make sure we only have to ever redose 1 medicine. We only give him 1 ounce of formula at a time to keep his tummy calm, but we offer it to him several times a day. We will work back up eventually to what he was at before.
Cael does NOT like the Christmas tree! I helped Pam (Adam's aunt) put up the tree on Friday, and whenever Cael gets close to it, he pulls back and turns his head away. He likes to look at it, but does NOT want to be close to it at all. There are a few ornaments that he really likes, like Mr. Potato Head, but he won't even touch it while it is on the tree.
It is so nice to be here at Adam's family's house. I really like having people around that aren't hospital related. I love sitting at table and eating together with Cael in his high chair. We haven't done that in ages! I even cooked dinner for everyone on Friday. I don't usually cook, even when we were home, but it was nice to be able to cook something. We were eating out ALL the time in the hospital. Cael does so well sitting with us while we eat. He just watches everyone and plays with his toys.
We have also been working on his strength and development. For the first time ever, I put him down, and he immediately was on all fours. He even started rocking forward and backward! He doesn't stay that way long, but he is doing it more than ever before.
I feel like we are finally able to relax a little bit now. We are getting into our groove and we have a home away from home for now. The holidays are coming up, and I can't wait to make cookies! The Christmas tree is up, I've been listening to Christmas music, and drinking hot chocolate. I wasn't really feeling the holidays while we were in the hospital, but now I am warming up to them. At least we will be with family this year!
We are getting things figured out, for sure. We have learned to give the anti-nausea medicine about an hour before the rest, and that will help to keep him from throwing up. We spread the meds out to be about 15-20 minutes between them to make sure we only have to ever redose 1 medicine. We only give him 1 ounce of formula at a time to keep his tummy calm, but we offer it to him several times a day. We will work back up eventually to what he was at before.
Cael does NOT like the Christmas tree! I helped Pam (Adam's aunt) put up the tree on Friday, and whenever Cael gets close to it, he pulls back and turns his head away. He likes to look at it, but does NOT want to be close to it at all. There are a few ornaments that he really likes, like Mr. Potato Head, but he won't even touch it while it is on the tree.
It is so nice to be here at Adam's family's house. I really like having people around that aren't hospital related. I love sitting at table and eating together with Cael in his high chair. We haven't done that in ages! I even cooked dinner for everyone on Friday. I don't usually cook, even when we were home, but it was nice to be able to cook something. We were eating out ALL the time in the hospital. Cael does so well sitting with us while we eat. He just watches everyone and plays with his toys.
We have also been working on his strength and development. For the first time ever, I put him down, and he immediately was on all fours. He even started rocking forward and backward! He doesn't stay that way long, but he is doing it more than ever before.
I feel like we are finally able to relax a little bit now. We are getting into our groove and we have a home away from home for now. The holidays are coming up, and I can't wait to make cookies! The Christmas tree is up, I've been listening to Christmas music, and drinking hot chocolate. I wasn't really feeling the holidays while we were in the hospital, but now I am warming up to them. At least we will be with family this year!
2 Days Post Hospital
Oops! I wrote this a few days ago and forgot to post it!!! I even linked to the blog on facebook a few days ago. Sorry everyone!
It has been 2 days since Cael was discharged from the hospital. It has been incredibly busy since then! We went to clinic yesterday and today, and will go again tomorrow. They are just being super conservative and careful to start with. They want to make sure things are going well for the first few days. Going to clinic takes forever! It takes about an hour to get to the hospital, plus we are at the hospital for about 2 hours, so the entire morning is spent going to the hospital.
We have been enjoying being out of the hospital so much! Cael has so many new things to look at. We can just walk around the house and he is so entertained! He has played in his jumper, done some tummy time, watched us put up a Christmas tree, sat in his high chair, and just enjoyed being free!
At night time, he is still getting TPN. We have to set it all up and hook him up to a pump in the evenings and turn it off in the morning. It is really easy to do. It's so nice to still have the TPN because he isn't really eating very well right now. I think that is due to the oral medications. Hopefully he will get used to the meds and get back to eating before too long. We've been having some problems with him throwing up his meds, still. It seems to be getting a little better, but we still don't know why he is throwing them up so much. I think we just need some time to figure out what works best for giving the meds. It seems we are giving meds all day long. There are 7 in the morning and 8 in the evening, plus 3 more at 3:00. We try to space the meds out to be about 15-20 minutes apart so if he does throw up, we don't have to redose more than 1 medication. So it takes about 2 hours to give the meds in the morning and evening.
I have spent so much time in the hospital with Cael that I haven't really been moving around too much. We are staying with some of Adam's family, and it is a 2 story house. I am constantly going up and down the stairs and walking all over the house getting things and whatnot. My legs are so sore!! I can't believe how bad it is. lol. At least I'm moving around, which is way more than I was doing in that little hospital room all that time. I'm not used to being so active, so it is only 6:00 pm and I am tired!
All in all, I think things are going ok so far. I think we just need some time to adjust to the new routine and all the things with being out of the hospital.
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