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.

Happy Birthday Judah and Anton

Anton Ezekiel, I love you more than words could ever express. You have brought more joy to our family in the past 10 months then I could have ever imagined. You are the sweetest, happiest and most easy going child I have ever been around. You live most of your days in some amount of pain but no one would ever know it because you are always joyful. You amaze me with your problem solving skills. If there is something you want to accomplish you will figure out a way to do it no matter what. You LOVE Yo Gabba Gabba and yell in excitement every time we put it on.You love your brother and sister and often ask for hugs from them both. I am so thankful that you were with your Mama Olga on your first and second birthdays and you were surrounded by love as you celebrated these birthdays. Sweet boy you now have your very own family and you have your brother to share a birthday with you. What a neat gift you have been given sweet boy but really we are the one who have been given a gift by having you as our son! Anton we love you so so much, HAPPY THIRD BIRTHDAY SWEET BOY!

Judah Adoniram, I don't think you will ever fully know what God has done in my life through yours. From the moment you were born you have filled my heart with joy. We spoiled you rotten buddy and I enjoyed every second of it. You are the sweetest most crazy 3 year old I know. You go from snuggling and saying I love you a million times to running through the house, jumping off the couch and yelling like a crazy man. You are so much fun to be around and you have the sweetest little voice. You love to pretend to be baby Asher and you love making us pretend to be his family. Your smile lights up the room and your singing voice makes everyone around you smile. You love your family so much and your favorite thing to tell people before they leave is "don't fall down." You are a funny, fun, happy, spunky kid and I love you to the moon and back. You love Anton and often call him "my Anton" you are so blessed to share a birthday with your brother. I love you kid, HAPPY THIRD BIRTHDAY!

Judah's new "smile"

Judah and Anton together! 

HAPPY THIRD BIRTHDAY JUDAH AND ANTON!

Russia banned adoptions to the US.

I'm not sure how many of you know but Putin just signed a law banning US Citizens from adopting Russian children. This doesn't effect Anton since he is already home but it does effect thousands of orphans in Russia. In fact there are 46 kids that have been approved by Russia to come home to their American families who may now have to stay in Russia. I am so heartbroken for all of the kids and for their families. I feel like there is nothing we can do because he has already signed this into a law but we have to do something!

 American families that have adopted from Russia have been posting before and after pictures on FB and on their blogs to show the world what love can do in these children's lives. Please feel free to link up to this post with your children's before and after pictures. To do a side by side picture you can use this software.  If you can't figure out how to link up please email me and I will walk you through it (vkdelgado@hotmail.com).

Here is Anton's before and after picture: 

Merry Christmas!

Hello everyone! Everything is going great on the home front and I will post a detailed update soon.

I wanted to wish you all a very Merry Christmas!

11/30/2012

Sometimes I hate coming up with names for my posts so today it just gets a date.

Anton is talking a lot. He is now saying some 5 word sentences which is a big deal! My favorite thing lately is to listen to Anton and Judah talk to each other. Judah will bring Anton a toy and ask him if he wants to play with it then Anton will answer him and they just carry on this cute little conversation. Anton also likes to correct Judah. He will tell him "Judah Adoniram don't say that" or in a whiny voice he will say "no Judah no." Judah LOVES Anton and within the past few days they seem to have gotten closer to each other. They are always together and really love playing with each other. Judah will just play and play with him and he always calls him "my Anton" He will say "Mommy My Anton needs a cup" or "My Anton wants to sit at the table" Their bond is growing stronger and stronger and I know they are going to be the best of friends.

Here are some cute things Anton has said lately:

I asked Judah and Anton if they wanted to watch Cars and Anton said "yes yes I so excited."

A few days ago I was holding Anton when he leaned over put his cheek up to mine and gave me a huge hug we stayed like that for about a minute and then Anton said "Mommy I so happy." It was the sweetest moment ever and it made me cry!

Anton is also really good at remembering peoples names. The last time we were in the hospital we had a nurse the first day we were there and she didn't come back for several days but once she came back and walked in the room Anton said "Hi, Rachael." We were both shocked he remembered her name.

We were teaching Kenya the Lords prayer for Sunday school and within a few weeks Anton had learned most of it just by listening to me teach it to Kenya.

Oh and one more crazy cool thing he did. My nephew Blake was talking to Anton and he pointed to the word you on his shirt and he said Anton what does this say and with out missing a beat Anton says "you." We all just looked at each other like "he did not just do that." So the next day I typed out the word you and sure enough Anton knew what it was. He only knows that word and his name but I still thought that was amazing.

He is so happy and content and such a joy to be around. I sure do love my boy!

I hope you guys have a great weekend!

We met Anton for the first time...

It was one year ago today that we met Anton for the first time. That day was like a dream and even the memories don't seem real because it was such an amazing day. We didn't blog while in country and I don't think I really blogged about our first trip at all but I did email updates to our family and friends and so I am now going to share those with all of you!

So here you go DAY 1 OF MEETING ANTON:

We had our meeting with the Ministry of Education today and it went so good. She told us all about his medical condition and his parents. She even copied the paper she was reading for us so we know have his full name and his parents names (we found out in court his surrogate signed the paperwork so we don't have his bio-parents info). She questioned us about how we are going to be able to care for him and was happy with our answers. She told us "thank you so much for wanting to adopt our Anton and for knowing how to care for him." Then she gave us the invitation to meet him and we were off!  

Our first visit with Anton went REALLY well. We were thinking he wouldn't want anything to do with us and that he would cry the whole time but he did great. When we first walked into his part of the hospital I saw him through an open door and I got SOOOOO excited. We didn't get to go to him right away though because his doctors wanted to ask us a few questions first. They drilled us and I think maybe got us a little more prepared for court with all the questions they were asking. After about 45 minutes of questions the doctors seemed satisfied with our answers and took us to see him. 

His nanny was helping him walk out of his room as we were walking up and I couldn't believe we were really getting to see him. We watched him for a few minutes before we really tried to interact with him too much. I couldn't wait to get my hands on him but didn't think we would be able to hold him the first visit. Well not too long after we first saw him they took us in his room and started showing him our family picture that has been in his room for several months now and they would say Papa and he would look at Jason then they would say Mama and he would look at me or his nanny (he called her Mama but they had also been teaching him that I was Mama) :) He recognized us from the picture which was amazing!  Then is nanny handed him to Jason and he did really good. He didn't cry at all or try to get out of his lap. I LOVED getting to see Jason holding our son and interact with him. Then his nanny gave him to me and he cried a little but overall did really well.

We played with him for a few minutes and talked to him but then he was ready to go back to his nanny. We were able to spend about 45 minutes with him before he got tired and wanted to take a nap. At that point we said good bye and went back into the doctors office for more questioning. They wanted to know how we liked him and if the meeting went as we expected to which we replied we LOVE him and it went way better than we could have thought. They also asked what the Grandparents thought so we told them how excited they were and how they can't wait to meet him. 

His doctors really liked us and are very glad we want to adopt him and are able to care for him. 

We will go visit him again tomorrow and watch them feed him and watch them do his dressing change. We are really excited they invited us to watch his dressing change because at first it seemed like they weren't going to let us be there for that. 

We love you all and thank you so much for praying! God is so so faithful and we are so blessed by everything that has happened so far on this trip! 

and now for some pictures! 

-------------------------------

I am so excited we emailed our family and friends, it is so neat to go back and read what was going on each day! 

What Disability Says vs What God Says

...For now I live with disability.
Disability still says ugly things to me.
Disability is a part of this broken sin-filled world.

But God has so many beautiful things to say.
And so I’m filled with hope.
God’s words grow louder and louder in my life.
The glory of his grace and mercy grow stronger and stronger.

I need to listen to his words.
I want to listen to his words.

God’s words change everything.
God’s beautiful words have changed my life.
And that is how I live with disability.

Read the entire transcript of this 9 minute testimony from God's Good Design in Disability

The Gospel