We are home and other exciting news!

I am so sorry I am a few days late posting this but I wanted to let everyone know WE ARE HOME!! Anton is doing much better and is back to his happy little self.

He is not up to his total volume on his feeds yet but we are slowing bumping up his rate until he is getting a full days feeds without throwing up. He hasn't thrown up in several days so we want to make sure it stays that way. Anton has lost around 4 pounds (we weighed 25 pounds and now weighs 21 pounds) in the last few months so our goal right now is to get him back up to the total volume he needs a day and once we get him there he will be getting around 1700 calories a day. Hopefully this with jump start him to gaining weight again.

Other than that he is doing amazing and we have never seen his skin look as good as it does right now.

We have some pretty exciting news too. We have been working for several months to get Anton on Medically Dependent Child Program, it is a medicaid program that based off of Anton's income not ours, and is for children that are medically fragile. Our insurance is billed first then medicaid and medicaid covers anything out insurance doesn't. It has already been a HUGE blessing! Anton also qualified for 50 hours of nursing a week through the program and 15 hours of respite care a week. We hired our nurse yesterday and she starts on Monday! The respite care means we can hire family or friends to come help with Anton or his things around the house to lighten our load a little so we can rest. It was hard for me to want to have help but I know this will be a blessing and will free us up to do.... well I have no idea what we will do :)

We were in the process of enrolling Anton in preschool at our local public school and were almost done with the process for him to start but we decided not to enroll him at this time. I was very excited about it but we just don't think this is the right time to do it.

Other than that not much is going on with us.

Hope you are all doing well.

Anton is in the hospital

I'm pretty tired so I am just gong to re-post my status' from Anton's FB page:

February 17th:

Today has been a long, crazy, scary day. I took Anton to the hospital to get an x-ray of his thumb because he wont move it and I'm pretty sure it's dislocated well by the time we got here Anton was having trouble breathing and his lips were blue. He wasn't doing well at all and was getting worse and worse by the second. His O2 stats were in the 70s so they did a breathing treatment which helped and put him on oxygen. As long as he has oxygen blowing in his face he is fine but if the oxygen moves from his face his oxygen levels start drooping. They x-rayed his thumb but said it's not broken and they couldn't really tell if it was dislocated (I'm pretty sure it is, so at some point we will take him to an Eb hand doc to look at it). The doctor was getting really worried about him and really thought he was septic (infection in blood) or would be soon. He was having a hard time breathing, talking and moving. I was getting crazy worried about him. I was so thankful once they got his blood work back and the infection was not in his blood! He does have pneumonia though so that's why he is having such a hard time breathing. He is doing breathing treatments every 4 hours, is on antibiotics and steroids. The are also giving him iv antibiotics for his infected wounds. Can you believe that?!?! God is so good that we were coming in to get. Anton's thumb x-rayed but really we got here at the perfect time cause he was in distress and I didn't even realize it. I will keep y'all updated if there are any changes.

February 18th:

We had an awful night last night and didn't hardly sleep at all. Every time Anton moved the oxygen moved away from his mouth and his stats would drop. He has had a really bad morning too and has a very painful cough. But as of a few minutes ago he is talking and acting a little more like his normal self. He still has a long way to go but I was so happy to hear him talk. The hospital gave him a prayer bear and Anton said "ohhhh I like a bear" then he hugged it and said " look I hug a bear". So cute!!!

February 18th (sometime in the afternoon): 

Jason came to the hospital for a few hours today so I could go home to pack a bag and rest. I had an awful headache by the time I got home but after some meds and a few.hours sleep I felt great. Anton is still in a lot of pain even though he is one some crazy strong pain meds. The plan is to give him enough pain mess to get him comfortable for the next few days to give his body a chance to focus on recovering from the pneumonia. His doctors think it will take awhile because he was so sick when we got here. He is already breathing a little better though and the oxygen doesn't have to be right in his face anymore. He still needs it but not as much. We saw the hand surgeon and she said they can't do anything for his thumb right now since he is having a hard time breathing but once he is recovered from pneumonia and gets a little stronger they will have to do surgery to get his thumb back in place. :( makes me so sad but also so.thankful it was dislocated otherwise we might not have even come to the hospital. Our friend Jen came to visit and had Anton talking, singing, smiling and laughing. It was so great to see him happy!

February 19th (in the morning): 

Anton and I slept great last night! He has been off of oxygen for the last few hours and is breathing great on his own. He has been more alert today but still not back to his happy little self. He is getting better day by day and hopefully he will be fully recovered soon!

February 19th (in the evening):

I don't know if I already posted this or not so sorry if I already did. Sunday through Friday of last week Anton would start coughing after he had been asleep for a few hours then he would throw up a few times and I would then stop his night feeds. I took him to the doctor on Friday because I was worried that he was aspirating on his throw up and also wanted to have a few of his wounds cultured. His doctor said Anton's lungs sounded great so he wasn't worried about pneumonia. I was still concerned but was glad his lings sounded clear. Well fast forward to Sunday and my fears were confirmed he did have pneumonia (I think it just took a few days to start sounding bad). Anton has had a full days feed in a few days and he also hasn't thrown up in a few days, well wouldn't you know it, he got almost a full days feeds today and started throwing up. He threw up several times while I held him bent over so he wouldn't swallow his vomit then he started throwing up a little blood ( totally normal for Anton to throw up blood if he vomits a lot because it tears up the lining of his throat ). So sweet boy for whatever reason can't handle his full days feeds. We stopped his food for the night and will be talking to his dietitian tomorrow to see how we can fix this problem.

Information I haven't put on FB:

Anton's breathing is getting a lot better and he doesn't have to have oxygen blowing in his face anymore. I think they were thinking about sending us home in the next few days but I asked if we could stay to get iv antibiotics for his infected wounds. Even though his infections are under control at this time I didn't want to get home them have to come right back if for some reason his infections got worse. So the doctor agreed and we will be here until he finishes his IV antibiotics. 

My sweet Mother in Law, Rose, brought me a ton of food to the hospital today so I have plenty to eat and I wont have to leave Anton to go downstairs to get food. Anton doesn't want anyone else but me or Jason so trying to go get food has been hard. I am very thankful to have plenty now :) My MIL and FIL are also watching Kenya and Judah while Jason is a work. All of that has been a HUGE help! Thank you guys so much, we love y'all are so so blessed by all of the help! 

I will try to update as much as I can but I only have the kindle at the hospital so it makes it hard for me to write a good post using that instead of a computer. My sweet friend Shannon brought me some egg rolls from Jack in the Box (my favorite) and brought me her computer so I could update you all. Thanks Shannon, I love your face :) 

Okay that is all I can think of for tonight. 

Anton when we first got to the hospital, the thing in his face is blowing oxygen on him. 

 Sweet boy not feeling well.

The sign on the door and in two other places.

 Jen entertaining Anton : )

Anton getting a breathing treatment.  His super sweet RT in that picture got him that Brobee balloon!!!!

This is Anton tonight after his rough time of throwing up, he finally settled down and went to sleep.

 I was trying to get a picture of how red my cheeks were after the throwing up episode but the redness didn't show up. Imagine super red, hot cheeks after worrying about my boy. 

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.

Random Cuteness

I was working on a post about the boys birthday party but I can't figure out how to attach the pictures so I decided to post random cute pictures of the boys.

Judah and Anton's last day of being 2.

My sweet boys on their third birthday!

He is getting so big!

Love Judah's sweet eyes!

I will work in their birthday post and hopefully get it up soon.