Anton and Judah

Anton and Judah are so sweet together and they are the best of friends. Judah is always checking on Anton  (or E-ton as he calls him.) I rearranged their room a few days ago and Judah wanted his bed right by Anton's so they could hold hands and talk while they were falling asleep.

Tonight Anton was tired before Judah so I put him to bed first. A few minutes after I put him to bed Judah said "I'm going to go check on E-ton"  he went in there and Anton said "Judah can you lay down with me while I go to sleep?" Judah said "sure, let me ask Mama"  of course I said yes. He crawled in Anton's bed and they just talked and talked. Judah stayed very still so he didn't hurt his brother and I helped him get up once they were done hanging out.

I love watching Anton and Judah together. They have a bond like I have never seen before and it brings me such joy to watch them interact together.

How is it possible it has been 5 years?!?!

Melody and Madison were born exactly 5 years and 30 minutes ago.

It was at this point 5 years ago we were in the O. R. and our daughters were still alive.

It was at this point I held my daughters in my arms, listened to them breathe and watched their heart beating.

It was at this point I watched a nurse lovingly place our daughters in my husbands arms, as he looked at them with tears streaming down his face I knew our lives would never be the same.

It was at this point they were placed in my arms and Destinee helped me hold my sweet babies.

It was at this point I knew they wouldn't be with us much longer.

It was at this point I prayed that God would take our sweet babies so they didn't have to struggle to breathe anymore.

It was at this point my babies went from my arms to the arms of Jesus.

It was at this point my life changed forever.

Mama Olga this one is for you :)

Sorry I haven't updated the blog in awhile but here are some super cute pictures from the past few weeks.

We went to Ms. Hanna's 3rd birthday party this past weekend (Hanna is on the far left) and a very special guest showed up.

Anton wasn't impressed :) 

Anton is working hard in physical therapy.

Sweet smile! 

Anton and Judah are the very best of friends!

Kenya is playing soccer and LOVING it (Judah is too but I don't have any of his pictures for some reason).

Anton is proud to be a Texan!

We miss you so much Mama Olga and love getting your emails. Love you!

July 25, 2013

Things have been a little crazy since we got home from the hospital. Judah got sick the day after we got home with a virus and an ear infection, once he got better Kenya got a high fever for 2 days then Anton got a fever for 3 days. We were worried about him having an infection in his blood since he has a PICC line but thankfully the blood culture came back normal! Anton will get a blood transfusion tomorrow because his iron is low and then they will take his PICC line out.

Totally short update but that's how we roll sometimes :)

God is so good! 

We are home!

I totally thought I posted that we were home but I guess not... We got to come home on the 17th and have LOVED being home. Anton still has his picc line and I give him iv antibiotics through it twice a day, he is also getting an antibiotic through his g-tube 3 times a day.

Today for the first time in over a month Anton put his left leg down flat on the bed. For the past month if we laid him on his back he jerks up his left leg because it hurt to straighten it so I was shocked when he laid it flat! I am so glad he is making progress even if it is slow.

The day after we got home from the hospital Judah got sick with a virus and an ear infection, he seems to be on the mend though so that is good. Today Kenya spiked a fever of 103 degrees F. She was miserable but once her fever came down she was back to her happy little self. Then Anton got a fever of 101.4 degrees F. I called his doctor and they had is go to the hospital for blood work. They want to make sure he doesn't have an infection in his blood which he is at higher risk for with the picc line. we are home now just waiting for the results. I am hoping he just has whatever Kenya and Judah have and that it isn't in infection. I will let y'all know once we get the results.

Thanks!

July 15, 2013

Things have been going great at the hospital. Anton's leg is not hurting him anymore which is great but he still isn't moving it normally. his PICC line is working great which is amazing news. we will change the PICC line dressing on the 17th and as long as it still working we will get to go home and finish out another week of IV antibiotics at home. Kenya spent the night at the hospital on Saturday night we had a super fun sleepover with her. Judah might get to come tonight and stay we shall see. So hopefully we will be going home in the next few days. I will keep you all updated. thanks for praying for our boy.

Hey 

July 12, 2013

The only thing they found on the mri was Anton's lymph nodes right around his hip are very swollen. They are hoping with a round of antibiotics the swelling will go down and his leg will stop hurting. His leg was hurting him a lot today so they changed some of his pain meds hoping it would help. 

Anton's iron was low so he got a blood transfusion yesterday. About an hour into it he spiked a high fever and they weren't sure if it was from the transfusion or infection. They gave him ibuprofen and his temperature came down pretty quickly. They finished the transfusion and he did great.  They wanted the iron in his blood to be at a 12 and it was 7 when they started today it was at 11 so that is great. They will recent his levels on Monday to make sure they stayed up over the weekend so hopefully he will just need one transfusion.

Despite being in the hospital and despite Anton being in pain his joyful attitude continues to amaze me. I sure do love this son of mine!

Anton is in the hospital and an update...

UPDATE 

We just back to our room and everything went great. He does not have an infection in his hip which is awesome but now we are at square one on trying to figure out where his pain is coming from. 

______________________

It is a crazy long story but I will give you the short version for now.

  Anton's left leg had been hurting him for a few weeks but I just thought it was related to his EB and didn't think much of it. Well I took him for his final follow up appointment for his thumb and I told his doctor what was going on.  She checked him out andandand was very concerned. He wasn't moving his leg like he normally does and he was in a lot of pain. She was worried about him having an infection in his hip joint and admitted him to the hospital a few minutes later.  All of that happened yesterday.

The only way to know for sure what is going on is to do an mri under anesthesia because his xray looked fine. He is having the mri done right and we are hoping to have some answers soon.

I will keep y'all updated as I hear more.

Swallow Study Update

Anton had a repeat swallow study done today and it went great. He can now have ANYTHING he wants by mouth as long as it is thicker than honey. We are so excited and so thankful for how far Anton has come.

Kenya and Judah are both playing indoor soccer and Papa T is their coach. They both had their first games last Saturday and we had so much fun watching them!

Anton had 2 corneal abrasions in June and it was AWFUL. We took him to the eye doctor for the first time ever which went pretty good. Anton wouldn't open his eyes but the doctor was super nice and treats several EB kids in the area. We have a good plan in place so hopefully he wont get anymore corneal abrasions.

Happy Monday Y'all! :)

Better late than never...

Hello everyone!

I am still in my blogging funk and I may never get out :/

We are doing good.

Kenya graduated from Kindergarten and can't wait to start 1st grade! I am hoping to post a much longer blog about this soon because I am so excited for her and because I have a ton of pictures to share.

Kenya LOVES making art and she spends several hours a day coloring and creating art projects. We have a local art studio that she is enrolled in and will be in art classes once a week for the next 11 weeks. She is so excited about it!

 Kenya is also finishing up her first semester of ballet. She has done really well and her first recital is this weekend!

 

After that she will take the summer off to play indoor soccer. Papa T is her coach which makes it even more fun.

Judah is such a fun kid to be around (most of the time, I am telling you, him being 3 is much harder than him being 2). He is a Mama's boy which I LOVE! He will be playing soccer this summer and Papa T is also his coach, we can't wait to see him play.

Here is Judah, messing with his sister.

Anton is getting longer, he is a little over 35 inches and weighs 22 pounds. I can't wait till he is back up to 25 pounds but I know that will just take time and his dietitian is happy with his progress so far. We got his iron checked today and it was 8.5 which is a pretty big drop from February when it was 11.2. If we happen to be at the hospital with an iv his doctor will do a blood transfusion but if not we will just see how it is in a few months, if it drops to 6 we will do a blood transfusion at that time but if not we will just wait. His hematologist isn't too concerned and at this point and I trust his judgement. He is one of my very favorite doctors and really spent a lot of time with us today. I asked him lots of questions and got his opinion on a few things I was concerned with. I am so thankful for our team of doctors!

As Anton gets older dressing changes are getting harder. He HATES his baths and cries at random times through out the day because he doesn't want to do dressing change anymore. It is so hard for me to listen to him scream during his baths and it has brought me to tears more than once lately. He is on Morphine and Ativan for dressing change now and it isn't really helping. We have a meeting with pain management soon so hopefully they can figure out something that will help make it easier.

Jason and a few of our friends started a blog and podcast for Reformed Baptists and we are really excited about it. They post news, headlines & podcast from Reformed Baptists, exciting stuff if you ask me. This week my husband interviewed the author of the book 66 Books One Story. It is a great book showing kids the salvation thread throughout the Bible and tying all 66 books of the Bible together! We are using it for Kenya's Bible curriculum this year but it would be great to use in family devotions as well. They are giving away 2 of these books so check it out by clicking HERE. 

Just for fun here is Jason and Anton doing their guitar faces :)

I am doing good as well. I am about to turn 29 and I have been telling random people lately that I am almost 30. I enjoy this because I still look 16 so their reaction when I tell them is always fun.

Here I am looking 16 at almost 30.. cause you know almost being 29 makes you almost 30 :) 

I am looking forward to starting Kenya's 1st grade year soon and I am going to be teaching Judah and Anton preschool as well. I have some really fun things planned with lots of crafts and science experiments so it should be lots of fun. 

It is easy to paint this beautiful picture on a blog of how you want people to think you are but lets be real for a minute. I tend to be a pretty grumpy person and don't always say the nicest things so my goal for tomorrow is to be nice all day and to try to complain WAY less. We shall see how it goes... 

And there is a quick update for you all! 

4/25/13

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

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

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.