Good Times Delgado Style

4/25/13

2013-04-25T00:25:00.002-05:00

Hello everyone!

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

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

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

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

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

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

That is all I can think of for tonight.

4/5/2013

2013-04-05T10:27:00.001-05:00

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

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

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

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

I hope y'all have a great weekend!

4/3/13

2013-04-03T09:12:00.003-05:00

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

2013-03-30T00:30:00.000-05:00

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

2013-03-27T23:44:00.002-05:00

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!!!!

2013-03-16T21:35:00.000-05:00

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!!!!

2013-03-15T11:39:00.005-05:00

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!

2013-02-28T19:52:00.000-06:00

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

2013-02-19T23:10:00.002-06:00

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

2013-02-15T01:57:00.000-06:00

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

2013-02-11T21:54:00.001-06:00

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

2013-01-16T11:27:00.001-06:00

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.

2012-12-28T12:53:00.001-06:00

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!

2012-12-24T23:12:00.004-06:00

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

2012-11-30T16:04:00.001-06:00

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...

2012-11-28T01:26:00.000-06:00

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

2012-11-25T08:10:00.001-06:00

...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

four years...

2012-11-11T19:54:00.000-06:00

I can't believe it has been four years since I held my daughters...

Melody and Madison, I love you sweet girls and I miss you more than words could ever express.

this blog...

2012-11-10T13:31:00.000-06:00

I have opened blogger hundreds of times only to close it because I didn't really have anything to say. I have tons of pictures to share but when I think about writing a blog my words fail me. Jason suggested just posting pictures he said I didn't have to write a ton. I thought I would give it a shot and who knows my writers block may leave me. Here goes...

But see now I thought of stuff to say, ha. I think I am going to do an update on Anton because I haven't done one in a while then I will try and just post pictures.

Anton has been battling infections since July, in fact he was readmitted to the hospital for a week in October because his infection was back and he wasn't feeling well at all. Thankfully we didn't have to stay long and we got to go home the day before Kenya's 6th birthday.

While we were in the hospital Judah, Jason and Kenya visited a lot.

Kenya put on a puppet show for her brother.

Even with his medical diagnosis Anton is the happiest most content child EVER!

This was our room! It was HUGE and had a really neat view of the hospital.

This is Kenya and I on her last day of being 5.

A few days after we got home his skin started looking bad again and his fever came back. I was freaking out because I didn't want to have to go back to the hospital. In the hospital his cultures came back showing he had Pseudomonas so I was giving Anton vinegar baths everyday to kill his infection. It was working great and most of his wounds were scabbing over. Then I noticed a few wounds were draining more and getting worse so I was pretty sure those had MRSA. I took Anton to the doctor and they cultured his remaining wounds and they were MRSA. They put him on antibiotics for 10 days and also put him on bactroban cream. He also had his first ear infection since he has been home. It went away on it's own though and it wasn't too bad. After the 10 days his infection was still there so we started doing bleach baths (it kills MRSA) and are continuing the bactroban and his skin looks AMAZING. He only has a few wounds and they are very small. His right leg is also getting a lot better. We took him to a new derm and she put him on KeragelT because that leg hasn't healed since we brought him home. It is still missing a lot of skin but it looks a TON better.

I talked to another EB Mom and she told me their routine to clean out the bed and bathroom so I have started doing that and it has made a world of difference. I think the way I clean now has a lot to do with the reason his infection is almost cleared up. I have added a few steps to what she told me but here is what I do... Once he wakes up in the morning I change out his pillow cases and sheet, I use cavi wipes and wipe down his crib, mattress and pillow cases. Then I bleach out the tub before I bathe him, then after the bath I bleach out the tub then rinse that out, then I scrub it with comet and rinse that out, then I fill up the tub with water and poor vinegar in it and let that sit for 15 minutes and then rinse that out, after that I cavi wipe the inside and outside of the tub, the light switches, the door knobs, sink and soap dispenser. I think that's it...

Anton had also been throwing up a lot. Every time he cried he would throw up. He would throw up 6 or 7 times and then he would eventually throw up blood. If he cried at night I had to FLY out of bed and run to his room in hopes to calm him down before he puked. It was a hard few months. He had done this for several months so his GI decided to change out his G-Tube for a GJ-Tube. This would make his food go right to his intestines because we didn't think his stomach could tolerate the food. We slowed down his feeds until he could get scheduled to change out his tube and wouldn't you know it he stopped throwing up!!! He is also sleeping through the night again! Life around here is getting easier! He has only spit up once since we slowed down his feeds, other than that he has done amazing! We still have the G-Tube which I like because I can change it if it comes out. He is doing great and is feeling a TON better.

Anton is doing great in physical therapy. This week he learned how to stand up by himself when he starts by sitting on a stool and he learned to lay down.

Anton standing up watching cartoons.

He also started to crawl!!! He doesn't do it a lot but the first time he did it I was sitting on one end of the couch and he was on the other side then the next thing I know he was crawling over a pillow to get to me. It was so cute and I was so excited!

We have had a great few weeks and I am so glad Anton is feeling better! Well there you have it, all I have to say is "I'm not going to write anymore" then it starts flowing.

I hope y'all have a great weekend!

Amelia and Allison/ UPDATE

2012-11-07T10:02:00.002-06:00

UPDATE: I am crying my eyes out as I type this, God is so faithful and so good. They were able to successfully separate Amelia and Allison. She hasn't update their website yet but keep checking it if you want to hear more updates!

---------------------------------------------------------------------------
Hey guys I just wanted to stop by and ask for prayer for Amelia and Allison Tucker. They are in surgery right now to be separated. I can't imagine the emotions their family is experiencing but I know that God is so faithful.

Here is their website if you want to check for updates. Their Mom Shellie said she wont post update until after the surgery is over and they get to see the girls.

Thank you all for praying for these sweet babies!

Presidential Election Reflections: (God's Sovereignty over the Presidential Election) [2008 repost]

2012-11-07T06:25:00.001-06:00

Here is something I, Jason D., posted in 2008, but I still think it relevant today (Listen to readout of article):
_________________________________________

I have read some good prayers today from Al Mohler and from The Blazing Center blog.

I posted this on election day, but thought it still had relevance with Obama's inauguration going on today. I think it is a good reminder for us all,... so here it is again:

_________________________________________

Post-Election 11/05 Update: If you don't want to read my long post below, I think Justin Taylor summed up what I was getting at very good and pithy:

"No matter who you voted for--or whether you voted at all--it's important to remember that, as President, Barack Obama will have God-given authority to govern us, and that we should view him as a servant of God (Rom. 13:1, 4) to whom we should be subject (Rom. 13:1, 5; 1 Pet. 2:13-14).

We are to pray for Barack Obama (1 Tim. 2:1-2).
We are to thank God for Barack Obama (1 Tim. 2:1-2).
We are to respect Barack Obama (Rom. 13:7).
We are to honor Barack Obama (Rom. 13:7; 1 Pet. 2:17)."

_________________________________________

My original Pre-Election 11/04 post:

I pray that you would rest in God,...
Specifically in His ownership and rule of the earth:

For God is the King of all the earth;
sing praises with a psalm!
God reigns over the nations;
God sits on his holy throne.
- Psalm 47:7-8

...the world and its fullness are mine.
- Psalm 50:12

For the Lord, the Most High, is to be feared,
a great king over all the earth.
- Psalm 47:2

He is in charge of the rulers of the world and governments and presidents:

...Blessed be the name of God forever and ever,
to whom belong wisdom and might.
He changes times and seasons;
he removes kings and sets up kings...
- Daniel 2:20-21

...the Most High rules the kingdom of men and gives it to whom he will
- Daniel 4:17

Let every person be subject to the governing authorities. For there is no authority except from God, and those that exist have been instituted by God. Therefore whoever resists the authorities resists what God has appointed, and those who resist will incur judgment.
- Romans 13:1-2

The king's heart is a stream of water in the hand of the Lord;
he turns it wherever he will.
- Proverbs 21:1

No matter who is elected His plans and sovereign rule will NOT be frustrated:

Why should the nations say,
“Where is their God?”
Our God is in the heavens;
he does all that he pleases.
- Psalm 112:2-3

For I know that the Lord is great,
and that our Lord is above all gods.
Whatever the Lord pleases, he does,
in heaven and on earth,
in the seas and all deeps.
- Psalm 135:5-6

The Lord of hosts has sworn:
“As I have planned,
so shall it be,
and as I have purposed,
so shall it stand,
- Isaiah 14:24

The Lord brings the counsel of the nations to nothing;
he frustrates the plans of the peoples.
The counsel of the Lord stands forever,
the plans of his heart to all generations.
- Psalm 33:10-11

...he does according to his will among the host of heaven
and among the inhabitants of the earth;
and none can stay his hand
or say to him, “What have you done?”
- Daniel 4:25

...I am God, and there is no other;
I am God, and there is none like me,
declaring the end from the beginning
and from ancient times things not yet done,
saying, ‘My counsel shall stand,
and I will accomplish all my purpose,’
- Isaiah 46:9-10

Many are the plans in the mind of a man,
but it is the purpose of the Lord that will stand.
- Proverbs 19:21

The heart of man plans his way,
but the Lord establishes his steps.
- Proverbs 16:9

The lot is cast into the lap,
but its every decision is from the Lord.
- Proverbs 16:33

What should a non-Christian's response be to God's sovereign rule? I think Paul says it best:

The God who made the world and everything in it, being Lord of heaven and earth, does not live in temples made by man, nor is he served by human hands, as though he needed anything, since he himself gives to all mankind life and breath and everything. And he made from one man every nation of mankind to live on all the face of the earth, having determined allotted periods and the boundaries of their dwelling place, that they should seek God, in the hope that they might feel their way toward him and find him. Yet he is actually not far from each one of us, for

“‘In him we live and move and have our being’;

as even some of your own poets have said,

“‘For we are indeed his offspring.’

Being then God's offspring, we ought not to think that the divine being is like gold or silver or stone, an image formed by the art and imagination of man. The times of ignorance God overlooked, but now he commands all people everywhere to repent, because he has fixed a day on which he will judge the world in righteousness by a man whom he has appointed; and of this he has given assurance to all by raising him from the dead.”
- Acts 17:24-31

and a Christian's response:

The king is not saved by his great army;
a warrior is not delivered by his great strength.
The war horse is a false hope for salvation,
and by its great might it cannot rescue.

Behold, the eye of the Lord is on those who fear him,
on those who hope in his steadfast love,
that he may deliver their soul from death
and keep them alive in famine.
- Psalm 33:16-19

First of all, then, I urge that supplications, prayers, intercessions, and thanksgivings be made for all people, for kings and all who are in high positions, that we may lead a peaceful and quiet life, godly and dignified in every way.
This is good, and it is pleasing in the sight of God our Savior,...
- 1 Timothy 2:1-3

If by providence our new president or any earthly ruler is reading this, here is something extra for you:

Why do the nations rage
and the peoples plot in vain?
The kings of the earth set themselves,
and the rulers take counsel together,
against the Lord and against his Anointed, saying,
“Let us burst their bonds apart
and cast away their cords from us.”

He who sits in the heavens laughs;
the Lord holds them in derision.
Then he will speak to them in his wrath,
and terrify them in his fury, saying,
“As for me, I have set my King
on Zion, my holy hill.”

I will tell of the decree:
The Lord said to me, “You are my Son;
today I have begotten you.
Ask of me, and I will make the nations your heritage,
and the ends of the earth your possession.
You shall break them with a rod of iron
and dash them in pieces like a potter's vessel.”

Now therefore, O kings, be wise;
be warned, O rulers of the earth.
Serve the Lord with fear,
and rejoice with trembling.
Kiss the Son,
lest he be angry, and you perish in the way,
for his wrath is quickly kindled.
Blessed are all who take refuge in him.
- Psalm 2
"We don't have to despair or be driven into fearmongering or slander. No matter who wins, let's avoid despair. Let's avoid letting this consume us. Let's not sink to bitterness or slander.

Our citizenship is in Heaven. Our hope is not in one who will promise change (in whatever party/ideology), but in the One who never changes. The King of Kings and Lord of Lords is still in control! Our salvation does not lie in human governments. Our hope is not in a candidate. True change does not come with a new administration. Let us hope in Christ!"

- last quote from http://makinghome.blogspot.com/2008/11/freedom-in-gods-sovereignty.html

Feel free to leave your election advice in the comments.

Soli Deo Gloria,

jason d.

p.s. to end with some truth and humor, always remember we will never find a Savior on Capitol Hill:

Happy Reformation Day! (Reformation & Solas History)

2012-10-31T15:03:00.001-05:00

I plan on re-posting this every year on October 31st. My husband did a great job writing this post and it is such a blessing knowing how the Reformation changed our lives.
------------------

Yes, yes, I know you may have been expecting a Happy Halloween, but I wanted to talk about a different holiday that happens today that not many that I have talked to this past month are aware of,...Reformation Day!

If you are in a church where:

The Bible is read (in a language you understand)
The Bible is preached (in a language you understand)
You sing songs based off Biblical truths (in a language you understand)
Pray prayers (in a language you understand) and are Biblical in content
You are taught that you are justified by grace alone through faith alone by Christ alone

Then you are in debt to these men involved in the Reformation. All those things listed above, before the Reformation, were neither being practiced or taught.

Even more than that, on a non-religious level, we probably wouldn’t have the form of Republican government that we have today. A Democracy, capitalism, the sciences (as we have them today), educational system, and family life as we do today.

Sociologist Peter Burger said the reformation is the most amazing organizational achievement in the history of man, based on the network of friendships, and these men pressing forward toward the same goal to change churches and nations.

Martin Luther, who sparked the start of the Reformation, is said to be amongst the top 3 most influential men of last millennium.

Even if you just have the Bible in your own language, then you can thank God for the Reformers.

So what is the Reformation?

Since many don't know what this holiday is let me give this brief overview:

On October 31, 1517 a obscure German monk by the name of Martin Luther nailed a list of 95 theses to the door of the church in Wittenberg. He was protesting the abuse of indulgences in the church. In particular he was offended by Johann Tetzel, one of the Monks who had been sent out by the Pope to raise money for the building of St. Peter’s basilica in Rome.

In Roman Catholicism indulgences were a remission of a certain amount of time in Purgatory granted to the repentant sinner for a number of different reasons. One way to gain an indulgence was to go on a pilgrimage to a distant land. Today an
opportunity to go to the Holy Land would be considered a special privilege. But travel in medieval Europe was a major hardship, filled with many dangers - and a trip to Israel would only be undertaken because of the granting of an indulgence. To be fair we need to say that Roman Catholic theology required that the penitent sinner have a godly sorrow for his sins for the indulgence to be of any value. Tetzel, though, was going around selling indulgences as a “get out of jail free card.” He had a little slogan he used to promote his activities that went “As soon as a coin in the coffer rings, a soul from purgatory springs.”

Luther’s initial protest was not against the granting of indulgences but against abuses of granting indulgences practiced by Tetzel (and against the Pope's authority). It needs to be remembered that what Luther did in nailing his theses to the church door was not an act of rebellion. This was the normal method used by scholars to call for debate on an issue. Support for this statement lies with the fact that the theses were written Latin (the scholarly language) and not in German (the common language).

However, some enterprising students copied the theses, published them - and within a few weeks they were all over Germany. This was the precipitating event of the
Reformation of the church. The flame of reformation was soon kindled across
Europe. Ulrich Zwingli in Switzerland, Thomas Cramer and Hugh Latimer in
England and John Knox in Scotland were just a few of the reformers that God used
to awaken His church.

The changes that God brought about through the Reformation were not merely
cosmetic. Though there were massive changes in the liturgy, the fundamental change was the recovery of the Biblical Gospel as seen in the slogan of the reformers -
“After darkness light!”

Another change that came about was a radical departure from the medieval way of interpreting Scripture. The church had gotten off track very early through the influence of Origen who promoted allegorical interpretation. Today we use the literary historical method which examines the text according to the literary form (such as historical narrative, didactic or teaching texts, poetry, etc.) and asks the question, “What did the author mean in this text? (This question requires us to consider the historical setting.) This change in our understanding of how to interpret Scripture was not just a reformation, but a revolution!

Often the Reformation is understood in light of the five “solas,” (sola being the Latin word for alone.)

Sola Scriptura - Scripture alone
Sola Gratia - Grace alone
Sola Fide - Faith alone
Sola Christus - Christ alone
Soli Deo Gloria - All to the glory of God alone

The scriptures were seen as the formal cause of the Reformation. It was the issue of
authority - the Bible or the church - that was behind the other issues in question. Was the Bible the only authority for all faith and practice or was it the church, as Rome said. The principle of Sola Scriptura did not mean that there was no teaching office in the church. It meant that the church must interpret the text according to what it actually teaches and not according to the traditions of the church.

The absolute necessity for and the sufficiency of the Grace of God in the salvation of
every individual was seen by the reformers as a critical issue. This truth did not come first from the pen of John Calvin. Martin Luther was proclaiming Sola Gratia years before John Calvin was even a Christian. Luther’s book, The Bondage of the Will, was written as a response to The Freedom of the Will written by the Roman Catholic humanist scholar, Desiderius Erasmus. Erasmus’ position (on this subject) was essentially the same as the Arminian position that is so prevalent in the church today.

Sola Fide was called the material cause of the Reformation. The material cause was the doctrine over which the battle raged. It was in the foreground while Sola Scriptura was in the background. The reformers said that faith alone was the means of our justification. It must be remembered that the Roman Catholic Church did not deny the necessity of faith. What Rome opposed was “faith alone.” The reformers acknowledged that true faith would produce good works, but said that those works
followed faith and did not contribute to our acceptance by God. We are saved, they
said, by faith alone, but not by a faith that is alone.

Sola Christus says that Christ alone is the meritorious cause of our salvation. Roman Catholicism said that while our works were not as meritorious as those of Christ, they did have sufficient merit that it was fitting to reward them. It has been well said that Jesus Christ supplemented is Jesus Christ supplanted. That is, if you add anything to the requirement of Christ alone for salvation, then you have replaced him.

Soli Deo Gloria taught that since the other solas were true, all honor and glory
belonged to God for our salvation. While no one would be so bold as to say that the
glory for our salvation should be shared and deny that all glory belonged to God, that was the net affect of the teaching of the Roman Catholic Church. What the
reformer’s clearly saw was that the Bible taught that our justification was by Grace
Alone through Faith Alone in Christ Alone - all to the Glory of God Alone.

There was also an essential difference in the understanding of the doctrine of
justification between Protestants and Roman Catholics. Luther and the other
reformers said that justification was the legal decree of God that we were righteous
based on the imputation of Christ’s righteousness to our account. (Abraham believed God and He reckoned it to him as righteousness). This righteousness, they said, was an alien righteousness, one that came from outside of ourselves. Our righteousness
was as “filthy rags.”

In contrast, the Roman Church said that in order for God to declare us righteous we must actually be righteous. This is sometimes called analytical righteousness - that is God analyzes us, and when He see’s that we are righteous, He declares us to be righteous. It was this teaching that so vexed Martin Luther. He used to spend hours in the confessional meticulously reciting his sins of the previous day but without finding peace.

Most of us have defense mechanisms that allow us to continue to function despite our sins. Luther saw more clearly than anyone else of his day that his efforts to placate a Holy God were useless. But, God broke through his despair and awakened in Luther the truth of the Scripture - “The just shall live by Faith” Romans 1:17.

In Luther's own words:

For further knowledge on the Reformation I suggest watching the following two videos that will give you a little more in depth overview: The Protestant Reformation 1 of 2 (9:29) & The Protestant Reformation 2 of 2 (10:43)

In conclusion I thank God for these men, for they revived the true saving gospel. A gospel that relies on God for our salvation not any works of man:

yet we know that a person is not justified by works of the law but through faith in Jesus Christ, so we also have believed in Christ Jesus, in order to be justified by faith in Christ and not by works of the law, because by works of the law no one will be justified.
- Galatians 2:16

Now it is evident that no one is justified before God by the law, for "The righteous shall live by faith."
- Galatians 3:11

You are severed from Christ, you who would be justified by the law; you have fallen away from grace.
- Galatians 5:4

Oh sinner, let me plead with you, trust Christ, there is NO hope in the flesh, no hope in your good works, no hope in keeping the law. There is only hope in believe what Christ says to do, to repent, and to trust alone in Him for your salvation.

Christian, let us not go back to any system that teaches a false gospel:

I am astonished that you are so quickly deserting him who called you in the grace of Christ and are turning to a different gospel
-- not that there is another one, but there are some who trouble you and want to distort the gospel of Christ.
But even if we or an angel from heaven should preach to you a gospel contrary to the one we preached to you, let him be accursed.
As we have said before, so now I say again: If anyone is preaching to you a gospel contrary to the one you received, let him be accursed.
For am I now seeking the approval of man, or of God? Or am I trying to please man?
If I were still trying to please man, I would not be a servant of Christ.
For I would have you know, brothers, that the gospel that was preached by me is not man's gospel.
For I did not receive it from any man, nor was I taught it,
but I received it through a revelation of Jesus Christ.
- Galatians 1:6-12

Jesus Christ is the Way, the Truth, and the Life, noone get's to the Father except through Him! (John 14:6)

Soli Deo Gloria!

jason d.

Kenya is SIX!!!!

2012-10-16T01:22:00.003-05:00

This little baby

is now SIX!!!

Happy Birthday Kenya Grace we love you to the moon and back!

We are home!

2012-09-28T13:06:00.001-05:00

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!

2012-09-20T09:42:00.001-05:00

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!