Well hello everyone!!! I have so many things to share but hardly any time to do it so I am going to write a super long post and hopefully fill y'all in on all the details.
Anton is doing sooooo good. I wish I could record one full day of his life and share it with y'all because you would all be shocked at how well he has adjusted to being a part of our family.
When we brought Anton home he could only say three words (that we knew of) and with in two months we couldn't even count all the words he could say. Anton has been in speech therapy since he got out of the hospital and it has helped a TON. Now he is starting to put three words together most of the time and he has even made some five word sentences. We were sitting at the table eating lunch today and Judah said something to Anton and then Anton looked right at Judah and said "Don't say that Judah." Jason and I died laughing and at the same time were amazed by how well he is talking. He also speaks so clear. It doesn't matter if you have been around him for 5 minutes or his whole life you will be able to understand what he says because of how clear he talks.
One of my favorite things he does is when I open his closet to pick out a shirt for him he says "green one, soccer ball." He always wants to wear his green shirt with a soccer ball on it. If you ask him what do they say in soccer he yells "GOOOOOOOOOAAAAAALLLLLLL!" Yes we are brain washing him early to LOVE soccer.
He picks up on words so fast too. We were at a baby shower and someone was telling us that her phone sounded like a grasshopper then about thirty minutes later Anton started saying "grasshopper, grasshopper." We have never said that to him that I know of, so he just picked it up from listening to her. He also has an amazing memory. I will introduce him to someone and tell him their name then I say "Anton what is her name?" Then he gets really quiet thinks for a minute then says the persons name. There has never been a name he wasn't able to say. So far he has gotten everyone's names right.
Anton can count to 5, he knows seven of his shapes, he knows all of his body parts, he knows seven of his colors, and if we write his name down he says "Anton Delgado." One of my favorite things he does right now is we ask him "who made you?" Then he says "God made me!" I LOVE it!!!
This boy is BRILLIANT!!! He is caught up with where he needs to be for speech which is amazing since he has only been here for five months. He will have a speech evaluation done next month and will most likely not need speech therapy after that review. It is such and exciting thing but also sad because we LOVE Mrs. Britt.
Anton has also been in physical therapy since we brought him home. He was crawling a little bit before we brought him home from Russia and could pull himself up to stand when he was sitting but he hasn't done any of those things since we brought him home. His physical therapist has been working with him twice a week and our goals right now are to keep his body parts moving and teach him to walk. He wont really bend his right leg so we try to work on that and we are working on walking!!! He has the cutest little walker he uses and I love seeing him with it. He gets tried really fast but hopefully he will get more endurance as the time goes on. He has HATED walking every since we brought him home and really didn't even want to try but on the way home from the EB conference we were sitting at the airport with him and he said "Kenya walking?" I said yes Kenya's walking." Then he said "Daddy walking." I said "yes Daddy's walking." He went through everyone in our family then he pointed to himself and said ANTON'S walking." Every since then it seemed like something clicked and he has the desire to walk. He can't do it on his own yet but he doesn't cry anymore when he tries which is amazing!
He is also doing occupationally therapy. She works with him on opening and closing his fingers. Bending his arms and reaching way up high. We LOVE his occupationally therapist and we were so surprised that we ended up getting a good friend of our as his OT. He LOVE it when she comes over.
All of his therapists have been amazing with him and with Kenya and Judah. I kinda get stressed out when they come because Kenya and Judah are always trying to "help" but the therapists are great and include them in everything.
Anton sees one million doctors... okay not really but sometimes it seems like it :)
He sees a hematologist because he has anemia (low iron). He had an iron infusion in July and it has seemed to help a lot. An iron infusion is where they give him iron through an IV. The process took about 6 hours but the hospital we went to was amazing and took great care of us. His iron was around 6 when we had it done and it is up to 8.6 now. He will get his blood checked every few months to see where his levels are and as long as they stay in a normal range his doctor will just check on him and if they get low again we will do another infusion. If it gets really bad and the iron infusions aren't working then we will do a blood transfusion but we are trying to avoid that. I really like his hematologist and everything he has told me is exactly what I learned at the EB conference so I know he knows what he is talking about.
He also sees his pediatrician as needed. His pediatrician has been amazing. I call their office ALL THE time and they are always soooo helpful and get us in right away if we need to be seen. I can't say enough good things about them. Anton's health has been up and down. He will do really great for a few months then get an infection and we just have to stay on top of it and work super hard to get it cleared up. We found out on the 27th of July that he had an MRSA infection which can be a big deal so I ended up taking him to the hospital and they admitted him for two days so they could give him IV antibiotics. His infection took about a week to clear up after that but as of now it is under control. We gave the whole house a good cleaning and are just being overly careful to avoid further infections. We now bathe him in hibiclens and also make all of his therapists wash their hands with it before they do therapy with Anton. We make everyone take off their shoes once they come in our house and they have to wash their hands as soon as they walk in. We also got Caviwipes and that is what we sanitize with. We are doing everything we can to keep Anton healthy and infection free.
This is Anton when he was in the hospital with MRSA he is with his favorite nurse Jason. Every time he would come in the room Anton would yell "HI JASON!" It was so cute!
Anton and Tona.
He has seen his dermatologist once and I was not impressed. Other people have raved about him but I decided to change doctors so he has his first appointment in October with his new dermatologist. I am really excited about this appointment because right on their website it says "treating rare conditions such as epidermolysis bullosa." YES PLEASE!!! What doctors office has that on their website?!?! I will tell you NONE!
He also sees a Gastroenterology doctor. A VERY good family friend is his GI which is really neat! She is the one who ordered the swallow study after we brought him home and that is when we learned that he was aspirating. She has also ordered a repeat swallow study to be done next month and we will see if he is still aspirating. If he is aspirating then we will just continue with the g-tube feedings and if he is not then we can start feeding therapy with him (along with the g-tube feeds)!!! Please pray this has improved, we would LOVE for him to get to eat and drink by mouth. He will always have his g-tube as he can't get enough calories without it but if he can also eat by mouth that would be great!
We will be taking him to see the pain management doctor at the local children's hospital soon to make sure we have his pain under control during baths. He doesn't really need anything other than baths and when he does the whole not opening his eyes thing. But we do want to make sure he is on the right dosage for what he needs.
He sees an infectious disease doctor as needed. They saw him in the hospital when he had MRSA.
He will be going to an orthopedic doctor soon so he can get fitted for an AFO (splint to help straiten out his right foot).
He sees his surgeon that placed his G-tube only as needed.
I think that is all the doctors he sees :)
I was talking to Patrice the other day and I told her I felt like I was made to do this.On a totally random side note if you haven't been to Patrice's blog in a while GO check it out. God is doing amazing things for their family and I could not be more excited for them! Back to Anton... I have always loved all things medical. I love watching the real ER shows and I wanted to be a nurse when I was little. Don't get me wrong I would love nothing more than for Anton to be healed of his EB but while he has it I will take the very best care of him that I can. In the same breath as I was telling her I feel like I was made to do this I said and other times I feel like I have no clue what I'm doing. And that's the truth, sometimes I am at a loss. When his whole body is cleared up (except for his right leg which hasn't healed at all since we brought him home) then he is missing skin in random places and I am just thinking "what happened, we didn't do anything different???" Or sometimes Anton wont open his eyes for a few days at a time. We have ran every test we could and NOTHING is wrong with him during those times and our best guess is he is just in a lot of pain and shuts down. I have started giving him pain meds when he does that and after about an hour he snaps out of it and opens his eyes. But times like that can be really hard. We just keep on loving our boy and trying to figure out the best way to help him heal.
Anton is so happy and is so easy. He is so laid back and just goes with the flow. He is a JOY to be around and anyone that is around him just falls in love with him. When we were at the EB conference I had him in the meeting with me for several hours one day and he was so good and so quiet. Anton was coloring and got a little on his bandages so Patrice and I started coloring on his bandages. That was great fun. If he got loud I just whispered "Anton you have to whisper" and he would get so quiet. He did soooo good!!!
Anton is also FINALLY gaining weight. He weighed 19 pounds when we brought him home and his weight has gone from 19 to 20 pounds to 21 pounds to 20 pounds to 19 pounds it was crazy there for awhile but he finally hit 22 pounds and I could not be more excited. He is 34 inches long and weights 22 pounds.
I'm trying to think if there is anything else about him... I can't think of anything else but if y'all have questions please feel free to ask.
I hope to blog a little bit more to keep you all updated and so I can look back and see what neat things our kids were doing.
I hope you all are having a great day and please if you haven't read the tab at the top of our blog that says The Gospel please do so. There is nothing more important than where you will spend ALL of eternity.
LOVE you all!!!