4/3/13

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. 

good days and bad days

Sweet little Anton had a really hard day. He wouldn't open his eyes after he woke up and he was in a lot of pain all day long. Anton gets corneal abrasions really easily and it seems like no matter what I do it doesn't prevent them from happening. We try to put ointment in his eyes every night but even when we do he still gets corneal abrasions. Anton's eyes are just like his skin, if his eyes get too dry and he blinks he can scratch his eyes or if he rubs his eyes he can scratch them. It is very painful when this happens and it normally takes several days to heal. We keep the lights low, give him pain meds and keep his eyes lubricated until they heal. 

The craziest part about it all is he was fine yesterday. We painted Easter eggs and Papa T and Wita's house (Jason's parents) and he has a great time. Here are some super cute pictures from yesterday.

 If I have learned anything over the past year it is we just have to roll with it. We make VERY tentative plans when we make plans and we make sure that whoever we make plans with knows it all depends on how Anton is doing. Typing it out makes it sound worse than it is, this is just the way our lives are and we don't stress or worry too much about what tomorrow will bring. We take advantage of the good days and rest on the bad days. 

I was talking to Anton today and sharing with him how he can always remember that the good days outweigh the bad. Having bad days are hard but he has far more good days than bad and we can be thankful for that. I was talking to him about how this life is but a vapor and no matter how hard our lives her we can still use them for God's glory. 

So we do not lose heart. Though our otter self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing is for an eternal weight of glory beyond all comparison, we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 2 Corinthians 4: 16-18

I hope and pray Anton will understand the hard truths of God's word from a young age and I pray he will always look more at what he can do than what he can't. I pray he will know that nothing we do in this life matters if we are not doing it for the glory of God. 

This life can be so hard but God is so good and so faithful and so kind! We will praise him through the good and the bad because he is so so worthy of our praise. 

I know I just said it yesterday but I have to say it again, if you are not right with God, if you have never repented of your sins and put your full trust in Jesus Christ alone for your salvation PLEASE do so while there is still time. Please read THIS because there is nothing more important than where you will spend eternity. 

3/27/2013

Have I ever said how much I dislike trying to come up with a title for my posts? Well if I haven't let me just say I do not enjoy coming up with titles for my posts. I  have decided if for some reason I don't know what to title it then I will just put the date, it's lame, I know...

I was trying to upload pictures from my camera but I couldn't get it to work so I will just post pictures I already have on my computer that I haven't posted yet. 

Yo Gabba Gabba was SO much fun. I still get all giddy every time I think about it. I am going to write a whole post about that night but for now here is my very favorite picture of Anton.

This is the look on Anton's face when the show started.

 He was so excited he was shaking and screaming, I loved watching how excited he was!

The rest of this post is going to be totally random updates. 

Anton has several wounds that are infected with pseudomonas, which is by far the hardest infection to get rid of (well for us it is). The only way we can treat it at home is by giving Anton baths in vinegar.  It is CRAZY painful (Anton is heavily medicated when we have to do vinegar baths) and I HATE doing it. We will start them tomorrow in hopes to keep him out of the hospital. If we can't get them cleared up or if he gets worse (behavior changes, he gets more tired, starts acting sick) we will have to take him to the hospital to get IV antibiotics but I am so hoping it wont come to that. 

Our nurse started March 5th and we LOVE her. The first day she got here I took her in his room and showed her how I get him out of bed and he just started talking her ear off. He really likes her and I am shocked at how well he has adjusted to her being here. He still looks to me for comfort but he lets her carry him around, feed him and change his diaper without any complaints. I didn't think I needed help at all but now that she is here I never want her to leave :) It really has been a HUGE blessing having her here. Just feeding Anton and giving him meds takes up several hours a day so to have help in those areas has been great and she does so much more than that. She is learning how to do dressing change but it will be awhile before she is really able to do it on her own. I know she will get there but it will just take time. She has already wrapped a leg though so we are getting there. 

Anton hasn't been tolerating his feed well and has been throwing up quite a bit and losing weight so we changed him over to a blenderized diet through his G-Tube and we are loving it! He eats (through his tube) 5 times a day and it takes an hour to feed him each time. Five hours a day are spent feeding him (see why I am so happy Whitney is here Monday- Friday) but it is so worth it to be able to feed him real food. Right now we are mixing formula with baby food (2 meats, 2 veggies and 2 fruits), avocado, vitamins and I can't really remember what else right now (I have a list of things to add).  We just got a vitamix blender so once I run out of baby food I will start making his baby food and blending it in the vitamix. I can't wait to be the one who makes his food! If you have to do a blenderized diet for your kiddo vitamix offers a medical discount with a doctors note we did that and saved quite a bit of money.! Oh and my vitamix is blue and I love it, ha. 

Jason and I celebrated our eighth year of marriage on March 5th and I surprised him with an overnight stay at a ranch close to our house. We had a blast!!! We sat in a paddle boat that didn't work but we didn't know until we were stuck in the middle of a pound, rode horses, shot shot guns (that was my favorite thing we did), and relaxed! It was so great being alone with my hubby for a whole 24 hours :) 

Kenya is doing great and has really taken on a love of reading. She could only read small words for about a year but she has finally figured out how to sound out most words (if they aren't huge). I was amazed at how much of her school work she was able to read today. It has been so neat getting to watch her learn as I have been homeschooling her. She is so smart and picks up on things so fast. 

Judah is... well all boy. He is the sweetest and most kindhearted kid you have ever seen one minute and then the next he is hitting you in the face because you said something he didn't like. For about 5 days in a row last week he got in trouble for hitting. He isn't just hitting while playing but he will get mad at someone then just punch them as hard as he can (he is NEVER mean to Anton though). It has made me so sad to see him act that way but I know (well at least I hope) if we are consistent in disciplining him he will stop doing it soon. 

My grandfather passed away on Monday after a short battle with liver cancer. He is the first person I have ever been around that didn't die in the hospital. He stopped eating about a week before he passed away and that was it.  We went to visit him once we found out how serious it was and he got up for a little while, went outside, talked to us and then went back to bed. Then he just fell asleep and slept for a week straight and then didn't really ever wake up again. It has been a really hard week and a half just not knowing what to expect. We would get a call that he was breathing six breaths a minute and would rush up to be with him and then an hour later he would be breathing normal. I don't really know what to say other than it has been a hard week. I am sad that he is gone, sad that I didn't spend more time with him while he was alive, sad that he never really got to know Anton (he did meet him but only once and he was already super sick), just sad. Death is never easy and the only hope in death is found through Jesus Christ. If you have never repented of your sins and put your full trust in Jesus Christ alone for your salvation please read THIS and make sure you are right with God. My Grandfather was older and knew his time was coming to an end but we don't all have that chance.

I guess that is it, super exciting things have happened in the past week and super sad ones. 

So teach us to number our days that we may get a heart of wisdom. Psalm 90:12 

Yo Gabba Gabba was AWESOME!!!!

Hello everyone,
 We had a blast at Yo Gabba Gabba Live and I can't wait to post a ton of pictures. Kenya, Judah and Anton had a blast and danced more than I have ever seen them dance. I will post a more detailed post soon but I just wanted to share this picture with you guys for now!

I have a lot to do tonight to get ready for Anton's "Happy One Year Home Party" that we totally planned last minute but are so excited about. Can you believe Anton will be home for a year tomorrow?!?! This past year has FLOWN by.

EXCITING NEWS!!!!

CrAzY exciting news alert!!!!!! 

Some very special friends of Anton's worked for several weeks maybe even months to get him the hook up and we are sooooooo excited about it. 

Our whole family will be going to see Yo Gabba Gabba Live TODAY and will be attending the VIP after party with the characters!!!! The Get The Sillies Out Party will feature music, dancing and healthy snacks... EEEEEEk. How fun is that?!?!?

We are counting down the days and they kids are beyond excited!

Thank you so much to our special friends, our family is so excited and none of this would have been possible without y'all. We can't wait to post pictures for you guys!

We also want to say thank you to CID ENTERTAINMENT and Nickelodeon for providing the tickets to the show and the after party for us!

I don't think there are sufficient words to describe how excited our family is!!!

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!