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!