We are home!

Sorry I didn't update more it was hard with the hospital's Internet only working when it wanted to.

After our 18 day stay at the hospital we are finally home. Overall it was a great stay and I didn't go stir crazy too much. If I got overwhelmed I just tried to remind myself that there were children in that hospital fighting for their lives and we had so much to be thankful for. Now don't get me wrong there were times that were really hard and I had to have some cry fests but overall it wasn't that bad.

I have lots of cute pictures and lots of stories that I can't wait to post but it will just have to wait because I'm tired and my brain needs a reboot.

love you all!

Anton is doing Great!

Anton is doing great!

They were able to place his central line without any problems (well other than the fact they couldn't really secure it). Once he got back up to the room Jason, two nurses and myself all brain stormed and figured out a way to secure it a little better. Hopefully it will stay in for the rest of our hospital stay.

The staff here has been amazing and have (for the most part) done a great job of listening to my dos and do nots for EB. I am the only one who takes his temp., moves him, changes his diaper and every nurse that comes in has to ask me before they do anything, even at night. I'm pretty tired at this point but it's worth it to keep Anton safe.

Now don't get me wrong the staff here is amazing and I have grown very close with some of them, it's just hard because they are use to doing things one way and they just can't do the things they normally do with Anton. So I just stay on top of it. All of the nurses have been very eager to learn about Anton's skin and several of them have personal experience taking care of an EB kid. I can't say enough how much I love this hospital and love the staff.

Anton hasn't had a fever in two days and his infections are looking amazing!!' I'm not sure how much longer we will have to stay but hopefully we will be going home soon. I miss Jason, Kenya and Judah a TON and I can't wait till we're back together in our house. I can't complain though because every time I do I am flooded with the thought that right now in this hospital there are many, many kids fighting for their lives. We have so much to be thankful for and I hope we never forget. If you guys could be praying for a friend of two of my friends, their son went to be with Jesus yesterday. My heart breaks for their family.

I was able to take Anton outside for the first time yesterday and he LOVED it. It is finally cooling off in Texas and I'm pretty sure we will be playing outside everyday. I can't think of anything else to say except thank you all for loving and praying for our boy! God is so faithful and is so so good to us no matter what!

updates

Anton woke up very grumpy today and wouldn't open his eyes. He stayed grumpy most of the day. Anton's midline was leaking a ton today so we had to take it out and he will be going into surgery tomorrow to have a central line placed. Anton has been home for six months today!!! Well I'm tired, sorry for the lame post. Goodnight.

Anton is in the Hospital

It's amazing how fast things can change.

September 6th Anton had a great day. We had a very special visitor come all the way from Russia to meet him. We laughed and played and had a great time. September 7th I took Anton to the GI because he was having some issues with feeding. She put him on new meds to help his stomach empty a little faster (he was throwing up cause his stomach was holding the food in too long.) That night he had a fever of 102 and wasn't feeling well at all.

September 8th Anton wouldn't open his eyes and cried most of the day.

September 9th Anton still wasn't feeling all that great so Anton and I stayed home from church. At about 4pm I noticed Anton was feeling warm so I took him temperature and it was 104. I packed a bag and we went straight to the ER and have been in the hospital every since.

September 10th his second IV infiltrated and there was no where else they could put one. So they gave him antibiotics through his g-tube hoping they would clear up his infection and we could avoid getting a PICC line. 

September 11th they checked to see if the infection was in his blood and praise God it wasn't.

September 12th Anton's fever broke and his infections were looking a lot better, they were even saying we might get to go home. Then his fever hit 103 again and I knew we were staying.

September 13th his infections were clearing up and he was doing awesome until about 3pm and he went down hill fast. He was in a ton of pian and was thrashing around and couldn't keep still it hurt so bad. He woke up all night screaming even though we were giving him pain meds around the clock. I have never before seen anyone in as much pain as he was in. He wouldn't even let me hold him because it hurt him too much.

September 14th same thing, he was in tons of pain no matter how many meds we gave him. There is nothing like seeing your child in pain and knowing you can't fix it.

September 15th Anton had the biggest poo of his life and was back to his happy little self. Anton went into the O.R. to have a PICC line placed but they couldn't get it in as far as they wanted so he ended up getting a Midline, which is in between an IV and PICC line. The antibiotics they were giving him through his g-tube weren't strong enough so he had to have IV antibiotics.

September 16th Anton was pretty fussy today but overall it was a good day. I went outside today for the first time in five days and I couldn't believe how nice it felt outside!!! Jason and the kids came to see us and a few friends from church. I miss my family but I'm just trying to enjoy my time with Anton. God has always been so faithful to us and we will continue to praise His name. Sorry I didn't update sooner but the Internet hasn't been working very well at the hospital. I am back on Facebook (it's a long story) so you can follow us there or I will try to update on here as much as I can.

All about Anton

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!!!

Last chance to win an iPad

Two blogs in one day w00t :)

I just wanted to let you all know the iPad giveaway ends TONIGHT!!!!!

So PLEASE go enter to win this prize! I can't stand the thought of Baby N in an orphanage not getting the proper care he needs. He NEEDS to come home to his family, he NEEDS his Mama to love on him and snuggle him close, he NEEDS the medical care that he will receive once he gets home. YOU can be a huge part in making this happen even by making the smallest donation to his adoption fund.

HERE is the link to the giveaway, now go try to win yourself an iPad :)

Favorite picture of Anton

I am in a blogging slump and I can't really think of anything to say but I did want to share my very favorite picture of Anton. This was taken at the EB conference by Laurie Sterner President and CEO of The Butterfly Fund

Not only did she take this amazing picture but she sent us the most amazing print of it. I can't wait to hang it up in the living room. THANK YOU Mrs. Laurie we LOVE, LOVE, LOVE this picture!!!

Vanessa

Baby N and Tona :)

It is so hard to put into words what has gone on the past two weeks of our lives but I will try to do it justice and try to shine a little light on an amazing person who is now one of my dear dear friends. 

A few months ago I got an email from the family who would be pursuing Baby N's adoption. If you don't know who Baby N is I can't really give many details other then he is one year old, has EB, and is an orphan in Eastern Europe. I told her to call me right away because I had so many things I needed to tell her and I couldn't wait to hear the details of their adoption from her! Once she called we talked for a really long time and I knew without a doubt that she was serious and that her family would do whatever it took to adopt Baby N. Before we got off the phone I told her we would LOVE for her to come stay with us and I would teach her everything I knew about EB. She was very excited and agreed to come stay with us. I kinda laugh about it now because Anton has only been home for 4 months so I really didn't have much to offer her but I was sure I would teach her everything I knew. 

Fast forward to the 22nd of July when Tona arrived in Texas I think she was as nervous as I was but it didn't take us long to hit it off and we became instant friends :) Tona wanted to learn as much as she could so when they bring their baby home she will be prepared to care for his needs. We spent the next ten days getting to know each other but more importantly I tried to pour into her everything I knew about EB. Tona was a very fast learner and by the middle of her trip she was bandaging Anton's arms and legs by herself. I know without a doubt Tona will make an amazing EB Mama and the fact that her husband is on board and is excited about adopting him makes me so happy. 

Tona advocated for EB for a few years before her family decided to adopt Baby N so she knows what she is getting herself into and I can not be more excited for her family. Baby N will be so loved and so well cared for and I can't wait to see him in their arms! 

Most of you followed our journey as we adopted Anton and you guys know how hard the process is and how much money it takes to adopt a child from EE. The Crooker family can not do this alone they need our help and here is what we can do to help them. Tona is giving away a brand new Apple iPad away to help raise money for their adoption so please please please donate to their fundraiser and PLEASE share their fundraiser on your blog and your FB pages HERE is the link to the fundraiser! They can not do this alone but together we can help get Baby N into his family's arms where he belongs! 

Here are lots of pictures of Tona's visit :) 

Thank you in advance for helping this sweet sweet family! 

Well hello friends

Life has been so busy these past few months and I cant wait to fill you all in on all the detail but that will have to wait because I want to update you one what's going on right now.

WE ARE AT THE PATIENT CARE CONFERENCE (PCC) FOR EB!!!!!

Well Anton, Tona, and I are here but Jason and the kids are doing a staycation with his parents at the Great Wolf Lodge in Texas.

Tona and her husband William are adopting a very special baby from Eastern Europe who has EB. She came to our house on the 22nd and I have been training her on all things EB. We have had a BLAST and she is going to be a GREAT EB Mom.

I was so excited about coming to the PCC and meeting so many families effected by EB. We had dinner with Matt, Patrice and Jonah tonight and let me tell you Jonah has grown up so much. Every time he would see Anton he would say "there's Anton" or "hi Anton" SO SO SO CUTE!!! I has LOVED hanging out with so many different people and IT'S JUST THE FIRST DAY!!!

So here are some pictures of the first day of the PCC.

Getting to meet Geri was a highlight for sure. She is the EB nurse through dEBra and I have called her a TON with questions. We LOVE Geri!

 

I have missed Patrice sooooo much!!!

And this is Bill at National Rehab. We order all of our bandages through him and he has been amazing! Once we brought Anton home and he was admitted to the hospital he overnighted everything we needed. I couldn't figure out how to get a wound to heal on Anton and he suggested I use Poly-Mem and that product has helped soooo much! We LOVE Bill!

And here is Anton with his little girlfriend. Yes I realize he is way too young for a girlfriend but these two hit it off :) He was being such a ham and LOVED playing with her. Ms. Ava is such a fire cracker I don't think she stopped moving and dancing the entire time we were there.

We got to meet so many amazing people and so many who followed Anton's story. It was overwhelming (in a good way) and beautiful all at the same time.

Some of the babies got a little loud so here we are at our spur of the moment baby play group.

 

 I will add a few more pictures of that play date tonight.

Here is Anton being cute!

Patrice and Jonah. Jonah has gotten so big and I think I told him I loved him one million times last night.

Matt, Patrice and Jonah! 

Dinner with Matt, Jonah, Patrice, Tona and Anton (he was asleep :)

I fell asleep before I finished this post but last night was awesome and I can't wait to learn more and meet new people today! Tona has been such a HUGE help and she is already wrapping Anton's arms and legs by herself. She is going to be an amazing EB Mama and I can't wait to write a post all about her! 

Happy Birthday America!!

I wanted to post some pictures from today because I think it is so special that this is Anton's very first time to celebrate The Fourth of July and as an American citizen at that!!!

Enjoy the pictures :)