Thursday, April 25, 2013


Hello everyone!

I have so much to update you all on but so little desire to blog :/ I will make it short and sweet.

We took a day trip to Austin last week to celebrate Uncle Toe Toe's new book Jump Little Cake, Jump. We had such a great time and we really love the book. If you haven't gotten a copy yet you really should, you can get it HERE. It is a super cute children's book about Preston Spice, an adopted cupcake, who is trying to find his flavor in the world. Super, super cute book and it comes with a CD featuring the shake it like a cupcake song, which at the moment is Anton's very favorite song. We shake it like a cupcake at least three times a day.


On the long drive to Austin and home from Austin we were able to finish up Kenya's Kindergarten curriculum!!! I couldn't believe my baby finished Kindergarten and that I actually was able to teach it to her! I am still on cloud nine about that one! I'm so excited I can hardly stand it!!!


Yes, Kenya is still in a 5 point harness at six and a half years old. Watch this video and you might reconsider how soon you put your child in a booster chair. I LOVE the car seat she is in and all three of our kids have one. They are super safe and we can fit all three of them in the back of our small car! Here is the car seat she has in case you were looking into this sort of thing :) 

Anton is doing... okay. His skin is infection free (from what I can tell) :) , he has a cold :(, and he has a pretty big wound on his face :( He woke up Friday morning and had somehow caused most of the skin to slide down on his right cheek while he was sleeping. It was a very harsh reminder of just how awful EB can be.

Judah has gotten to the age where he likes to dress himself and it is always super cute! He is a strong willed child and right now is extremely defiant most of the time, but he is also so so cute and charming. I love that boy so much but I am ready for this phase of testing me all the time to be over. I have never had a child go through terrible twos but I am pretty sure the terrible threes are among us. I was thinking tonight about the fact that he is only going to be this little once and I am just so so thankful to have him.

That is all I can think of for tonight.

Friday, April 5, 2013


Anton is doing well and his infections are clearing up! We started doing vinegar baths daily and it has made a HUGE difference. He only has one spot left that looks infected but it is getting smaller daily!

We met with the hand surgeon yesterday and she got some more x-rays of Anton's right hand. His thumb is not dislocated but is broken :( I was so sad to hear that but she said it is healing well. We have no idea how he broke it but she said the bones in his hands are tiny so it wouldn't take much to dislocate or break them. We had been wrapping his hand in coflex (it is a stronger bandage) to hold his thumb in place every since he was in the hospital the last time and she said I can stop doing that now. She said he looked so much better than when he was in the hospital which was nice to hear.

The left side is the x-ray of Anton' hand yesterday. The part that is broken is his thumb. You can see a think white line toward the top of the bone and that is the break. The bone in the middle is his pointer finger and the one that is beside it with the top bent over is his middle finger (I might have gotten those backwards), his ring finger and pinky finger are totally fused to the palm of his hand and lay flat. You can see them in the x-ray if you look at the middle of the x-ray. 

His doctor took a lot of time with us and answered all of my questions. We are going to be working with the PT hand specialist to help his fingers open up more. They are going to make him a mold out of some soft material that hardens after they apply it (it stays soft on the inside) we will put that on him at night to get his fingers to slowly open up more. She also asked about his wound healing and I told her that everything takes about 2 to 3 weeks to heal except for his right knee which hasn't healed at all since we brought him home over a year ago.  She said that she has also done wound care in the past and she wanted to follow him and see if she can help get that knee to heal. We are seeing the wound care team at the hospital today to show them his leg and see if they have any ideas. She had talked about whirlpool therapy but I'm not sure if we would do that or not. I know at Cincinnati Children's Hospital (in their EB clinic) does whirlpool therapy but they do it under anesthesia because it can be pretty painful. I will be asking a lot of questions today and if I am not comfortable with the way they do it here we will just wait until we can go to the EB clinic. I am excited that she is wanting to help and help with things I hadn't really thought of yet. She can also do skin grafts and a few other things to encourage that leg to heal. I am hopeful that we can get his leg to heal! We will go back in a month to see her for a recheck of his thumb and to talk more about possibly doing hand surgery in the future to release some of his fingers.

I hope y'all have a great weekend!

Wednesday, April 3, 2013


Sunday morning Anton still wouldn't open his eyes. I was already planning on staying home from church but about thirty minutes after he woke up he opened his eyes and has been fine every since.We had a great Lord's Day and enjoyed celebrating the resurrection of Jesus with our church family.

When I was getting Anton ready for church on Sunday he said he wanted to wear his spider-man undies and I thought "why not?" so he got to wear Judah's spider-man undies over his diaper. He was so excited and made sure to tell everyone he talked to at church that he was wearing spider-man underwear.

Here is what Anton wore to church, he said he wanted to wear a nice shirt :)

Anton has ZERO desire to walk. He is in PT twice a week and we work with him throughout the week but I am telling you this boy doesn't want to walk. I got a few blister on my foot the other day and it hurt so bad to walk I can't imagine trying to walk if you knew you would most likely get blister every time you walked. I so want him to walk but he doesn't have the desire to and there really isn't much we can do. I hate even saying that because I really really want him to walk but at the same time if it causes him a lot of pain and he doesn't want to do it I am not going to make him. He loves scooting around the house on his booty but I also thought it would be fun if he could ride around the house so we got him a baby walker and he LOVES it. He can only go backwards right now but he is enjoying some freedom in his walker and I'm sure he will figure out how to go forward soon.

We are staying pretty busy these days, between homeschooling and daily bandage changes there isn't really time for much else. I am enjoying life even though it is busy, I love getting to spend so much time with our kids (well most days I enjoy it :) )

Judah and Anton continue to be best friends and love playing together! 

We are going to see a hand surgeon tomorrow to talk about doing surgery to fix Anton's thumb that is dislocated, we will also talk about releasing some of his other fingers. I will let you all know how it goes.