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. 

3/27/2013

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yo Gabba Gabba was AWESOME!!!!

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

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

EXCITING NEWS!!!!

CrAzY exciting news alert!!!!!! 

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

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

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

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

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

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

We are home and other exciting news!

I am so sorry I am a few days late posting this but I wanted to let everyone know WE ARE HOME!! Anton is doing much better and is back to his happy little self.

He is not up to his total volume on his feeds yet but we are slowing bumping up his rate until he is getting a full days feeds without throwing up. He hasn't thrown up in several days so we want to make sure it stays that way. Anton has lost around 4 pounds (we weighed 25 pounds and now weighs 21 pounds) in the last few months so our goal right now is to get him back up to the total volume he needs a day and once we get him there he will be getting around 1700 calories a day. Hopefully this with jump start him to gaining weight again.

Other than that he is doing amazing and we have never seen his skin look as good as it does right now.

We have some pretty exciting news too. We have been working for several months to get Anton on Medically Dependent Child Program, it is a medicaid program that based off of Anton's income not ours, and is for children that are medically fragile. Our insurance is billed first then medicaid and medicaid covers anything out insurance doesn't. It has already been a HUGE blessing! Anton also qualified for 50 hours of nursing a week through the program and 15 hours of respite care a week. We hired our nurse yesterday and she starts on Monday! The respite care means we can hire family or friends to come help with Anton or his things around the house to lighten our load a little so we can rest. It was hard for me to want to have help but I know this will be a blessing and will free us up to do.... well I have no idea what we will do :)

We were in the process of enrolling Anton in preschool at our local public school and were almost done with the process for him to start but we decided not to enroll him at this time. I was very excited about it but we just don't think this is the right time to do it.

Other than that not much is going on with us.

Hope you are all doing well.

Anton is in the hospital

I'm pretty tired so I am just gong to re-post my status' from Anton's FB page:

February 17th:

Today has been a long, crazy, scary day. I took Anton to the hospital to get an x-ray of his thumb because he wont move it and I'm pretty sure it's dislocated well by the time we got here Anton was having trouble breathing and his lips were blue. He wasn't doing well at all and was getting worse and worse by the second. His O2 stats were in the 70s so they did a breathing treatment which helped and put him on oxygen. As long as he has oxygen blowing in his face he is fine but if the oxygen moves from his face his oxygen levels start drooping. They x-rayed his thumb but said it's not broken and they couldn't really tell if it was dislocated (I'm pretty sure it is, so at some point we will take him to an Eb hand doc to look at it). The doctor was getting really worried about him and really thought he was septic (infection in blood) or would be soon. He was having a hard time breathing, talking and moving. I was getting crazy worried about him. I was so thankful once they got his blood work back and the infection was not in his blood! He does have pneumonia though so that's why he is having such a hard time breathing. He is doing breathing treatments every 4 hours, is on antibiotics and steroids. The are also giving him iv antibiotics for his infected wounds. Can you believe that?!?! God is so good that we were coming in to get. Anton's thumb x-rayed but really we got here at the perfect time cause he was in distress and I didn't even realize it. I will keep y'all updated if there are any changes.

February 18th:

We had an awful night last night and didn't hardly sleep at all. Every time Anton moved the oxygen moved away from his mouth and his stats would drop. He has had a really bad morning too and has a very painful cough. But as of a few minutes ago he is talking and acting a little more like his normal self. He still has a long way to go but I was so happy to hear him talk. The hospital gave him a prayer bear and Anton said "ohhhh I like a bear" then he hugged it and said " look I hug a bear". So cute!!!

February 18th (sometime in the afternoon): 

Jason came to the hospital for a few hours today so I could go home to pack a bag and rest. I had an awful headache by the time I got home but after some meds and a few.hours sleep I felt great. Anton is still in a lot of pain even though he is one some crazy strong pain meds. The plan is to give him enough pain mess to get him comfortable for the next few days to give his body a chance to focus on recovering from the pneumonia. His doctors think it will take awhile because he was so sick when we got here. He is already breathing a little better though and the oxygen doesn't have to be right in his face anymore. He still needs it but not as much. We saw the hand surgeon and she said they can't do anything for his thumb right now since he is having a hard time breathing but once he is recovered from pneumonia and gets a little stronger they will have to do surgery to get his thumb back in place. :( makes me so sad but also so.thankful it was dislocated otherwise we might not have even come to the hospital. Our friend Jen came to visit and had Anton talking, singing, smiling and laughing. It was so great to see him happy!

February 19th (in the morning): 

Anton and I slept great last night! He has been off of oxygen for the last few hours and is breathing great on his own. He has been more alert today but still not back to his happy little self. He is getting better day by day and hopefully he will be fully recovered soon!

February 19th (in the evening):

I don't know if I already posted this or not so sorry if I already did. Sunday through Friday of last week Anton would start coughing after he had been asleep for a few hours then he would throw up a few times and I would then stop his night feeds. I took him to the doctor on Friday because I was worried that he was aspirating on his throw up and also wanted to have a few of his wounds cultured. His doctor said Anton's lungs sounded great so he wasn't worried about pneumonia. I was still concerned but was glad his lings sounded clear. Well fast forward to Sunday and my fears were confirmed he did have pneumonia (I think it just took a few days to start sounding bad). Anton has had a full days feed in a few days and he also hasn't thrown up in a few days, well wouldn't you know it, he got almost a full days feeds today and started throwing up. He threw up several times while I held him bent over so he wouldn't swallow his vomit then he started throwing up a little blood ( totally normal for Anton to throw up blood if he vomits a lot because it tears up the lining of his throat ). So sweet boy for whatever reason can't handle his full days feeds. We stopped his food for the night and will be talking to his dietitian tomorrow to see how we can fix this problem.

Information I haven't put on FB:

Anton's breathing is getting a lot better and he doesn't have to have oxygen blowing in his face anymore. I think they were thinking about sending us home in the next few days but I asked if we could stay to get iv antibiotics for his infected wounds. Even though his infections are under control at this time I didn't want to get home them have to come right back if for some reason his infections got worse. So the doctor agreed and we will be here until he finishes his IV antibiotics. 

My sweet Mother in Law, Rose, brought me a ton of food to the hospital today so I have plenty to eat and I wont have to leave Anton to go downstairs to get food. Anton doesn't want anyone else but me or Jason so trying to go get food has been hard. I am very thankful to have plenty now :) My MIL and FIL are also watching Kenya and Judah while Jason is a work. All of that has been a HUGE help! Thank you guys so much, we love y'all are so so blessed by all of the help! 

I will try to update as much as I can but I only have the kindle at the hospital so it makes it hard for me to write a good post using that instead of a computer. My sweet friend Shannon brought me some egg rolls from Jack in the Box (my favorite) and brought me her computer so I could update you all. Thanks Shannon, I love your face :) 

Okay that is all I can think of for tonight. 

Anton when we first got to the hospital, the thing in his face is blowing oxygen on him. 

 Sweet boy not feeling well.

The sign on the door and in two other places.

 Jen entertaining Anton : )

Anton getting a breathing treatment.  His super sweet RT in that picture got him that Brobee balloon!!!!

This is Anton tonight after his rough time of throwing up, he finally settled down and went to sleep.

 I was trying to get a picture of how red my cheeks were after the throwing up episode but the redness didn't show up. Imagine super red, hot cheeks after worrying about my boy.