Friday, February 15, 2013

Update on Anton

Sorry I haven't posted in awhile. Things were going amazingly well with Anton but this past week has been really hard. I update his FB page a lot more than I do the blog so if you want more regular updates on his "like" his FB page

I am just going to copy my updates from that page and post them here because I am too tired to do a real post.


Good days:

January 23: 
Anton did a repeat swallow study and he PASSED! My sweet boy who has had no food or drink by mouth for the past 10 months can now eat baby food BY MOUTH!!! I am praising God and smiling from ear to ear! 

January 26: 
I wanted to give you all more detailed results from his swallow study just so you have a better idea of what we are dealing with. 

During a swallow study they add barium to whatever they are going to feed him then they do a live x-ray as he eats to see if he is swallowing the food properly. They started with baby food and were going to work their way down to water as long as he was tolerating it. They let me feed him which was great because if they had done it he most likely would have freaked out. I gave him half of a baby spoon of food every time then we would all watch on the screen as he swallowed it where it went. It took Anton two swallows to get the food down every time he took a bite and on the second time he swallowed he aspirated. They gave him about 6 bites to watch him and see how he did. Once they were done with that they didn't give him any thing else because he was aspirating on baby food so they didn't want to go to anything thinner. The speech therapist went over the results with me and gave me a plan for feeding him. When he is aspirating on the second swallow it is only a little bit so she is okay with him eating a tiny bit by mouth as long as we go super slow and are very careful. He can only have 10 bites and he only gets to have 1/4 of a baby spoon at a time. His food has to be cold so he can feel it in his mouth and I have to make sure he swallowed twice before I give him another bite. We have to watch him closely to see if he gets congested or gets a cough (both would be signs that he is aspirating and not tolerating the food). If those things happen we have to stop feeding him by mouth, call the speech therapist and go in for another swallow study. We will be working closely with his speech therapist at home on how to do his feeds and she will be making sure he is safe while doing them. We are very excited he can start eating because he is all caught up in speech therapy and we were going to be so sad when his ST Britt had to stop coming but now she can start feeding therapy which we are thrilled about! We are also starting to do a blenderized diet through his g-tube. What that means is we put baby food into his gtube instead of milk. We haven't been doing it for that long so we are starting slow. So far he has had green beans and beef, we are adding sweet potatoes and chicken this week then next week we will add a fruit. We are doing it slow to make sure he can tolerate it and to make sure he isn't allergic to anything we are giving him. The goal will be to have him eating the blenderized diet throughout the day and only getting formula at night. I am so excited about getting some real food in this kid! We also had an appointment with his GI doctor and Anton has lost a little bit of weight. They are adding more calories to his food so he went from getting 1250 calories a day to getting around 1700 a day. We are hoping this will help him steadily gain weight. I know it a lot of calories for a 3 year old but Anton's body is in a constant state of healing so he burns a TON of calories through out the day. I will let you know once he starts gaining weight and I will let you know how his feeding therapy goes.

February 4: Today has been a great day! We had an appointment at Anton's Hematology doctor and Anton's iron levels are PERFECT! His iron has been VERY low since we brought him home. He has had iron supplements (didn't work), iron infusions (didn't work), and 3 blood transfusions since he has been home. His doctor said the blood from the last transfusion should totally be out of his system at this point so his body is making enough iron on its own and he said today is the best he has seen Anton look. He was very pleased with how well Anton is doing! Praise God for that! At this point we don't have to anything and we will go back to have it rechecked in four months. I am so very excited about this news!

Anton got to have sweet potatoes by mouth at dinner tonight and he LOVED them. I love that he is enjoying eating by mouth, he is such a brave boy!

Well that is about as exciting as it gets around here, let me know if you have any questions about Anton and I will try to answer them as quickly as I can.

Anton got to have sweet potatoes by mouth at dinner tonight and he LOVED them. I love that he is enjoying eating by mouth, he is such a brave boy! 
Well that is about as exciting as it gets around here, let me know if you have any questions about Anton and I will try to answer them as quickly as I can.Anton got to have sweet potatoes by mouth at dinner tonight and he LOVED them. I love that he is enjoying eating by mouth, he is such a brave boy! Well that is about as exciting as it gets around here, let me know if you have any questions about Anton and I will try to answer them as quickly as I can.

Bad Days:

February 12:Anton has had a great few weeks as far as infections being under control and just the ease of his care. The last few days though have been a little rough. I tend to just post the happy news because I try to look on the bright side but I think it is also important that y'all know there are challenges that come with EB. Right now Anton is missing all the skin on each butt cheek. The skin on his booty is normally tough and he really doesn't get wounds on it. We always put a patch of meplix light over each cheek though just to make sure it doesn't break down. Right now though it's really bad, it has been bleeding a lot and has caused him a lot of pain. I have been talking with his doctors and the EB nurse educator on the best way to treat his booty, so hopefully it will be all healed up soon.

I think as parents we always want to know why things happen to our kids. I have NO idea what changed that caused his butt to break down and that drives me crazy. I have to remind myself that he has EB and these things are going to happen sometimes. We are doing the best we can to keep him comfortable and keep his pain under control. It has already started healing a little bit so hopefully in a few days it will be back to normal.

Some good news though is Anton is doing GREAT eating by mouth. So far he has had green beans, and sweet potatoes. I had just been buying his baby food but we had sweet potatoes for lunch so I mashed some up for him and added a little water. He LOVED them, I was so excited to be the one making his food and so thankful that he was getting real food for a change. Not that baby food isn't real food but nothing beats homemade baby food. :) Right now I am making him homemade apple sauce, so fun being a Mom!

We ordered a wheelchair for Anton and it is going to look super cool. The frame is lime green and the chair is bright blue and black. The seat will be super soft and they are adding some soft of gel to make it even more comfortable for Anton. We are still working on getting him to walk but it will be nice to have a wheelchair for now.

That is all I can't think of for now. I hope you all have a great week!


February 13:Epidermolysis Bullosa not only effects Anton's skin but it can also cause blistering on his lips, in his mouth, throat, and esophagus. It also can effect his eyes. If Anton's eyes get too dry and he blinks he can literally blink off the first layer of his eye ball. Or if he rubs his eyes the same thing can happen. Right now Anton has a corneal abrasion (scratch on his eye) which can be very painful. He hasn't gotten one in a very long time so I was surprised when I got him out of bed today and he wouldn't open his eyes. After some pain meds, ointment in his eyes, and Yo Gabba Gabba he has opened his eyes and is overall pretty happy. Yo Gabba Gabba always cheers Anton up. It will take a few days for his eye to heal so until them we just keep the house dark and keep applying ointment to his eyes.

This past week has been a pretty hard one for Anton as far as skin break down and pain goes. He is a trooper though and is getting lots of love for all of us.

I am hoping to do more updates on the day to day life of Anton so you all can get a better idea of what his life is like and so you have a better idea of how to pray for him.

This past week has been a pretty hard one for Anton as far as skin break down and pain goes. He is a trooper though and is getting lots of love for all of us. 
I am hoping to do more updates on the day to day life of Anton so you all can get a better idea of what his life is like and so you have a better idea of how to pray for him.This past week has been a pretty hard one for Anton as far as skin break down and pain goes. He is a trooper though and is getting lots of love for all of us. I am hoping to do more updates on the day to day life of Anton so you all can get a better idea of what his life is like and so you have a better idea of how to pray for him.


February 14:Sweet Anton is not getting any better :( He had a fever of 103.3 today and he has several infected wounds. His booty is still very raw and has been bleeding since last Friday (not a ton but enough that I am worried about it). Today was one of the worst dressing changes we have had in a very long time. He cried almost the whole time and he never does that. I am taking him to the doctor tomorrow so they can culture his wounds and hopefully offer some suggestions for his little bottom. I also have a call in to his hematologist to see if they want to recheck his iron levels since he has been bleeding so much and I have a call in to his pain management doctor so hopefully we can adjust his meds and get his pain a little more under control. He has also started throwing up at night again which is awful because it gets all over his bandages and his bed. We have slowed down his formula at night, raised his mattress to a 45 degree angle, and added baby food to his formula, all per his dietitian's advice.

I feel like I have been saying for weeks "oh Anton is doing amazing, he has been having an amazing few weeks" then BAM everything got all crazy.

I am very thankful to be his Mama though and very thankful to get to be the one to comfort him through all of this. Please keep praying for our boy. I know this is just all part of EB but makes me so sad for him when it all hits him so hard at once.

I feel like I have been saying for weeks "oh Anton is doing amazing, he has been having an amazing few weeks" then BAM everything got all crazy. 
I am very thankful to be his Mama though and very thankful to get to be the one to comfort him through all of this. Please keep praying for our boy. I know this is just all part of EB but makes me so sad for him when it all hits him so hard at once.I feel like I have been saying for weeks "oh Anton is doing amazing, he has been having an amazing few weeks" then BAM everything got all crazy. I am very thankful to be his Mama though and very thankful to get to be the one to comfort him through all of this. Please keep praying for our boy. I know this is just all part of EB but makes me so sad for him when it all hits him so hard at once.



2 comments:

Blessed mommy said...

Praying everyday for your family and your beautiful son. Praying for healing of his sores right now and praising God that Anton is enjoying eating real food right now.

Karin said...

Prayers for sweet Anton! Have they ruled out an allergic reaction to the newer foods he is eatting? One of my kids reacts first via skin and then vomiting and breathing problems. Just a thought!