Xyler had a cardiologist appointment the other week. We took all of our kids to it so that they could get their blood drawn for a research study we are a part of. Xyler has a chromosome deletion so they want to see if anyone else in our family has it too. Xander and Nika did well with it and this made Xavian want to do it too since he has to do everything they do. He did fine until she put the needle in his arm and then he started to cry. I think he was very brave because he wasn't kicking or anything, just crying. She wasn't able to get a vein with him so his will have to wait for another day. The chromosome deletion that Xyler has they really don't know anything about it. So far in their research he is the first to have what he has so they don't know if it is going to cause any issues for him down the road. That scares me so I hope they find out with the research they are doing.
Dr Arrington was impressed with how well Xyler looked. Xyler was crawling everywhere and was super busy. The nurses even commented on how much better he looked than before his surgery. One talked about how blue he was. Dr. Arrington comes up to Logan once a month and uses the cardiology office in the hospital. These nurses don't deal much with little kids since the office is for adults. We are just so grateful that he comes up to Logan so that we don't have to drive down to Salt Lake every time. He told us everything looked good on Xyler's x-ray and that he didn't need to be seen until spring. That visit he will have an echo done at Primary Children's and then after that it will be yearly visits until he is needing his next surgery. This was great news for us! What a blessing it has been with him doing as well as he is. He is such a strong little boy. When you look at him now you would never be able to guess that he has had two open heart surgeries. He is our CHD Hero.
I talked to the dr about getting my other kids checked so he listened to their hearts to see if he could hear anything that didn't sound right. He said they all sounded great. This was good news too. Now we will just have to see what the blood tests show for all of us on if anyone else has the chromosome deletion. He is really interested to see what it shows for Xander since he had Meckles Divirticulum two years ago. He said that it is strange for a family to have a child with Meckle's and a chd. I guess I should explain what Meckle's is. When you are in the womb you have a little flap on your small intestine and it is fed by an artery. After you are born it disappears except for in 2% of people. And of that 2% only 2% have a problem with it. In Xander's case it caused his intestine to twist. He was really sick for a few days before and couldn't keep anything down. He also didn't have the strength to do anything, not even to watch tv. He just slept all day and night. It was scary! He was sent down to Primary Children's where they did exploratory surgery and found out the problem. They took out some of his small intestine and his appendix. I cannot say enough about how wonderful Primary Children's is and their wonderful doctors, nurses and staff. We absolutely love that hospital!
Monday, September 24, 2012
CHD Walk for Awareness
On Sept 8th we went down to Provo, UT, to participate in the CHD Walk for Awareness. We decided to stay in a hotel the night before close to Provo so that we didn't have to travel so early to get there. We also just wanted to have a little mini vacation. My sister and her family live not too far from Provo so we went out to dinner with them and then went back to the hotel to go swimming. My kids were so excited to go swimming, especially with their cousins. It was a fun time. I just wish we had more time to enjoy it. My sister didn't want to swim so I tried having her hold Xyler while I played in the water but Xyler did not want that. He was only happy if I was holding him. So, we sat in the luke warm hot tub. He was so cute to watch as he started to like the water more. He loved to just put his hands in and splash.
We had to be to Provo by 8:00 the next morning and we did not get much sleep. It sounded like a fun idea to sleep in a hotel until you try to get a 2 year old who is used to a crib to fall asleep in a bed. Needless to say it was a long night of not much sleep.
The walk was such a fun experience. I have always wanted to go do things for causes but never really knew which ones to go to. There are so many good causes out there! Now, we have a cause and a reason for it. It was neat to see all of the other people and the chd warriors who were there. My sister and her family came to the walk and it really meant a lot to us to have them there supporting the chd cause. I was so busy trying to keep Xyler happy that I didn't think about taking a group pic of all of us there for Xyler. I did get a few shots of everyone but my sister and her hubby. I don't know how I missed getting one of them.
We had to be to Provo by 8:00 the next morning and we did not get much sleep. It sounded like a fun idea to sleep in a hotel until you try to get a 2 year old who is used to a crib to fall asleep in a bed. Needless to say it was a long night of not much sleep.
The walk was such a fun experience. I have always wanted to go do things for causes but never really knew which ones to go to. There are so many good causes out there! Now, we have a cause and a reason for it. It was neat to see all of the other people and the chd warriors who were there. My sister and her family came to the walk and it really meant a lot to us to have them there supporting the chd cause. I was so busy trying to keep Xyler happy that I didn't think about taking a group pic of all of us there for Xyler. I did get a few shots of everyone but my sister and her hubby. I don't know how I missed getting one of them.
This was Xyler's first time in a swing while we were there and he loved it!
Xander and Scott hanging out.
Poor Xavian was so tired by the end of it. It didn't help that he didn't sleep much the night before. :)
Nika with her cousins Kendri and Kaiya and Dalton in the second pic. They had a lot of fun!
Xyler and me. This truly was a special day for us because of our little heart hero.
Thursday, September 6, 2012
One day I'm hoping I will finally get on top of things and be super organized so that I actually have time to do the things I want to do, like updating this blog. That day may be when my kids are all in school, but that day will come. :)
We have been pretty busy since my last post. Xyler is doing really well and is now crawling all over the place! He is also our little vacuum because he seems to find any little piece of dirt on the floor and puts it in his mouth. He is pretty fast at crawling and likes to book it out to the kitchen to our dogs food dish and tries to eat her food. Then I have Xavian who gets a little jealous if I give Xyler more attention than him, so he decides to get my attention by getting into things he shouldn't. So between Xyler and Xavian I stay pretty busy while Xander and Nika are at school. I'm still having a hard time with the fact that I'm old enough to have a 4th & 3rd grader. :) They are enjoying school and like their new teachers so it has been good for them to go back.
Since Xyler's last surgery he has had issues with throwing up. For a while It was everyday. He would eat something and gag, then throw up. He would cough, gag, then throw up. It was not much fun for him or me. I felt so bad for him and never knew what would cause it or when it would happen. Now he doesn't throw up from gagging and is doing a lot better. I have noticed if we feed him any food with dairy in it he throws up later. I already have two kids that are lactose intolerant but I have never had one that throws up from dairy. I have been really leery on feeding him anything but baby food!
We also think that he has an allergy to nuts. The other week we were eating a dessert where there were some chopped up pecans in the crust. My hubby was holding Xyler, feeding him some of it and was making sure to not give him any of the crust since babies aren't supposed to have any nuts until after they are one. Xyler reached out and grabbed the plate and got some of the dessert on his hand. He then rubbed his eye with that hand. A bit later the side of his face that he had rubbed was red and puffy. The only thing we could figure was that he got some of the nuts on his hand and rubbed it onto his face. I washed off his face and gave him some Zyrtec and it went away. I have never had this happen to a child and I am a little worried about him being allergic and being able to handle it. This poor kid just can't seem to get a break! I'm hoping he will outgrow the nut allergy and the issues he has with milk. If not we will handle it the best that we can! He is such a strong boy and I know he will handle anything that is thrown at him.
We have been pretty busy since my last post. Xyler is doing really well and is now crawling all over the place! He is also our little vacuum because he seems to find any little piece of dirt on the floor and puts it in his mouth. He is pretty fast at crawling and likes to book it out to the kitchen to our dogs food dish and tries to eat her food. Then I have Xavian who gets a little jealous if I give Xyler more attention than him, so he decides to get my attention by getting into things he shouldn't. So between Xyler and Xavian I stay pretty busy while Xander and Nika are at school. I'm still having a hard time with the fact that I'm old enough to have a 4th & 3rd grader. :) They are enjoying school and like their new teachers so it has been good for them to go back.
Since Xyler's last surgery he has had issues with throwing up. For a while It was everyday. He would eat something and gag, then throw up. He would cough, gag, then throw up. It was not much fun for him or me. I felt so bad for him and never knew what would cause it or when it would happen. Now he doesn't throw up from gagging and is doing a lot better. I have noticed if we feed him any food with dairy in it he throws up later. I already have two kids that are lactose intolerant but I have never had one that throws up from dairy. I have been really leery on feeding him anything but baby food!
We also think that he has an allergy to nuts. The other week we were eating a dessert where there were some chopped up pecans in the crust. My hubby was holding Xyler, feeding him some of it and was making sure to not give him any of the crust since babies aren't supposed to have any nuts until after they are one. Xyler reached out and grabbed the plate and got some of the dessert on his hand. He then rubbed his eye with that hand. A bit later the side of his face that he had rubbed was red and puffy. The only thing we could figure was that he got some of the nuts on his hand and rubbed it onto his face. I washed off his face and gave him some Zyrtec and it went away. I have never had this happen to a child and I am a little worried about him being allergic and being able to handle it. This poor kid just can't seem to get a break! I'm hoping he will outgrow the nut allergy and the issues he has with milk. If not we will handle it the best that we can! He is such a strong boy and I know he will handle anything that is thrown at him.
This is Xyler with his red blotchy face.
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