I have opened blogger hundreds of times only to close it because I didn't really have anything to say. I have tons of pictures to share but when I think about writing a blog my words fail me. Jason suggested just posting pictures he said I didn't have to write a ton. I thought I would give it a shot and who knows my writers block may leave me. Here goes...
But see now I thought of stuff to say, ha. I think I am going to do an update on Anton because I haven't done one in a while then I will try and just post pictures.
Anton has been battling infections since July, in fact he was readmitted to the hospital for a week in October because his infection was back and he wasn't feeling well at all. Thankfully we didn't have to stay long and we got to go home the day before Kenya's 6th birthday.
A few days after we got home his skin started looking bad again and his fever came back. I was freaking out because I didn't want to have to go back to the hospital. In the hospital his cultures came back showing he had Pseudomonas so I was giving Anton vinegar baths everyday to kill his infection. It was working great and most of his wounds were scabbing over. Then I noticed a few wounds were draining more and getting worse so I was pretty sure those had MRSA. I took Anton to the doctor and they cultured his remaining wounds and they were MRSA. They put him on antibiotics for 10 days and also put him on bactroban cream. He also had his first ear infection since he has been home. It went away on it's own though and it wasn't too bad. After the 10 days his infection was still there so we started doing bleach baths (it kills MRSA) and are continuing the bactroban and his skin looks AMAZING. He only has a few wounds and they are very small. His right leg is also getting a lot better. We took him to a new derm and she put him on KeragelT because that leg hasn't healed since we brought him home. It is still missing a lot of skin but it looks a TON better.
I talked to another EB Mom and she told me their routine to clean out the bed and bathroom so I have started doing that and it has made a world of difference. I think the way I clean now has a lot to do with the reason his infection is almost cleared up. I have added a few steps to what she told me but here is what I do... Once he wakes up in the morning I change out his pillow cases and sheet, I use cavi wipes and wipe down his crib, mattress and pillow cases. Then I bleach out the tub before I bathe him, then after the bath I bleach out the tub then rinse that out, then I scrub it with comet and rinse that out, then I fill up the tub with water and poor vinegar in it and let that sit for 15 minutes and then rinse that out, after that I cavi wipe the inside and outside of the tub, the light switches, the door knobs, sink and soap dispenser. I think that's it...
Anton had also been throwing up a lot. Every time he cried he would throw up. He would throw up 6 or 7 times and then he would eventually throw up blood. If he cried at night I had to FLY out of bed and run to his room in hopes to calm him down before he puked. It was a hard few months. He had done this for several months so his GI decided to change out his G-Tube for a GJ-Tube. This would make his food go right to his intestines because we didn't think his stomach could tolerate the food. We slowed down his feeds until he could get scheduled to change out his tube and wouldn't you know it he stopped throwing up!!! He is also sleeping through the night again! Life around here is getting easier! He has only spit up once since we slowed down his feeds, other than that he has done amazing! We still have the G-Tube which I like because I can change it if it comes out. He is doing great and is feeling a TON better.
Anton is doing great in physical therapy. This week he learned how to stand up by himself when he starts by sitting on a stool and he learned to lay down.
He also started to crawl!!! He doesn't do it a lot but the first time he did it I was sitting on one end of the couch and he was on the other side then the next thing I know he was crawling over a pillow to get to me. It was so cute and I was so excited!
We have had a great few weeks and I am so glad Anton is feeling better! Well there you have it, all I have to say is "I'm not going to write anymore" then it starts flowing.
I hope y'all have a great weekend!
But see now I thought of stuff to say, ha. I think I am going to do an update on Anton because I haven't done one in a while then I will try and just post pictures.
Anton has been battling infections since July, in fact he was readmitted to the hospital for a week in October because his infection was back and he wasn't feeling well at all. Thankfully we didn't have to stay long and we got to go home the day before Kenya's 6th birthday.
While we were in the hospital Judah, Jason and Kenya visited a lot.
Kenya put on a puppet show for her brother.
Even with his medical diagnosis Anton is the happiest most content child EVER!
This was our room! It was HUGE and had a really neat view of the hospital.
This is Kenya and I on her last day of being 5.
A few days after we got home his skin started looking bad again and his fever came back. I was freaking out because I didn't want to have to go back to the hospital. In the hospital his cultures came back showing he had Pseudomonas so I was giving Anton vinegar baths everyday to kill his infection. It was working great and most of his wounds were scabbing over. Then I noticed a few wounds were draining more and getting worse so I was pretty sure those had MRSA. I took Anton to the doctor and they cultured his remaining wounds and they were MRSA. They put him on antibiotics for 10 days and also put him on bactroban cream. He also had his first ear infection since he has been home. It went away on it's own though and it wasn't too bad. After the 10 days his infection was still there so we started doing bleach baths (it kills MRSA) and are continuing the bactroban and his skin looks AMAZING. He only has a few wounds and they are very small. His right leg is also getting a lot better. We took him to a new derm and she put him on KeragelT because that leg hasn't healed since we brought him home. It is still missing a lot of skin but it looks a TON better.
I talked to another EB Mom and she told me their routine to clean out the bed and bathroom so I have started doing that and it has made a world of difference. I think the way I clean now has a lot to do with the reason his infection is almost cleared up. I have added a few steps to what she told me but here is what I do... Once he wakes up in the morning I change out his pillow cases and sheet, I use cavi wipes and wipe down his crib, mattress and pillow cases. Then I bleach out the tub before I bathe him, then after the bath I bleach out the tub then rinse that out, then I scrub it with comet and rinse that out, then I fill up the tub with water and poor vinegar in it and let that sit for 15 minutes and then rinse that out, after that I cavi wipe the inside and outside of the tub, the light switches, the door knobs, sink and soap dispenser. I think that's it...
Anton had also been throwing up a lot. Every time he cried he would throw up. He would throw up 6 or 7 times and then he would eventually throw up blood. If he cried at night I had to FLY out of bed and run to his room in hopes to calm him down before he puked. It was a hard few months. He had done this for several months so his GI decided to change out his G-Tube for a GJ-Tube. This would make his food go right to his intestines because we didn't think his stomach could tolerate the food. We slowed down his feeds until he could get scheduled to change out his tube and wouldn't you know it he stopped throwing up!!! He is also sleeping through the night again! Life around here is getting easier! He has only spit up once since we slowed down his feeds, other than that he has done amazing! We still have the G-Tube which I like because I can change it if it comes out. He is doing great and is feeling a TON better.
Anton is doing great in physical therapy. This week he learned how to stand up by himself when he starts by sitting on a stool and he learned to lay down.
Anton standing up watching cartoons.
He also started to crawl!!! He doesn't do it a lot but the first time he did it I was sitting on one end of the couch and he was on the other side then the next thing I know he was crawling over a pillow to get to me. It was so cute and I was so excited!
We have had a great few weeks and I am so glad Anton is feeling better! Well there you have it, all I have to say is "I'm not going to write anymore" then it starts flowing.
I hope y'all have a great weekend!
4 comments:
Vanessa, it brings out so much emotion just to read about you guys. I cannot believe everything you are doing to make Anton's life easier, what an incredible person you are! I am also in tears learning about Anton's personal struggles and his huge wins. God bless you guys. I love your family!
So happy that you updated and shared with us the ups and downs Anton has been going through... He is so beautiful, and so strong. Will keep praying for his continued improvement, I'm sure the changes you made in the cleaning made all the difference! He must have been so happy to make it home for his sister's birthday!
Much love to you and your beautiful family - my thoughts and prayers are with you!
You are an AMAZING mom, Vanessa! God bless you and your family!!!
Anton - attaboy! Your family is wonderful! We love you very much!
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