Sunday, December 26, 2010

The day after

We had a great Christmas. The boys got just about everything they wanted, and Arina got to experience Christmas for the first time.
Santa brought Arina a jumper, to practice her standing skills. She loves it!


She loved ripping wrapping paper off presents!



Tanner got his drums he wanted. Yes, the autistic child got the noisiest gift!

But it wasn't his favorite. Out of everything, the Big Time Rush CD made him totally freak out. He told me he wants to go to Hollywood. He thinks if he goes there, he'll just see them on the street. Because mom, that's where they live!


Arina was again the hit of the day. She was passed around to all her cousins.


The cutest was she had a little playmate. A cousins little girl, she is 10 months old. They were enthralled with each other.

And Italie helped Arina practice her standing skills!


Now to the bummer part of Christmas. I hate it when there's a bummer part.
On Christmas eve, at my moms house, I noticed that Jax was acting strange. Every time I would touch his right leg, he would jump and wince. When we left, he freaked when I put him in his car seat, and screamed the whole way home. I decided to take him to the ER. I took Mondo with me to help, and daddy stayed home to get the little ones to bed. We were there until 3:00 in the morning! They were soo slow. I figured it was his hip. I have been told Jax is especially prone because he bears no weight on his legs. They x-rayed his whole leg and pelvis. Then we waited some more. He came in and told me he had a buckle fracture in his femur!
Seriously!
I freaked out. How does a child that can't even sit up, fracture his femur? The doc told me his bone density is not like a normal person, and he could have done it rolling around, or getting him out of his car seat. They splinted his leg, and I have to take him in to the ortho on Wednesday. I read his x-ray report when I got home, because I can look at all of Jax medical records online. It said under the diagnosis, "severe osteoporosis", and "buckle fracture of distal femur". How the hell does a five year old have severe osteoporosis? This really upsets me. It makes me want to grab God by the shoulders and shake him, look him in the eyes and ask... how is this fair? How is it fair to give one child EVERYTHING? I don't want to hear that everyone has a plan. Just don't want to hear it anymore. Sorry, this really gets a person worn down after 5 years. Why does this child have to spend his life in pain?
You can say what you want, if your comment is nasty, I'll just click the delete button. Walk a mile in my shoes first. Walk a mile in Jax shoes, before you judge.
I called the ER yesterday, because even with the splint, he is in obvious pain. He just doesn't understand. So every time he moves, he winces. They wrote for something stronger than tylenol, and my baby spent his Christmas in pain.


He slept late, because we didn't even get him in bed until around 3:30. I don't want to move him around much, but we did open a few presents.


Changing his diaper, and getting him dressed, is no fun at all. He hates his car seat, it causes pain, so he screams the whole time. Its utter hell.
Sorry for the bummer Christmas post, welcome to Jax life!

44 comments:

nicole said...

Lacey ~ I think your feelings of frustration sound perfectly normal! They stem from your great love for Jax and who doesn't want their child to have a wonderful Christmas with no pain. I'm glad Arina was able to enjoy her first Christmas in a loving home. God bless you for all you do for God's little ones.

Rochelle said...

Bless poor Jax. Praying the pain meds ease his pain and it heals quickly.

ParkerMama said...

Judge you? HELL NO! I'd like to know how Jax developed this osteoporosis as well.....and why.

Just knowing you guy is in pain hurts my heart. Tomorrow can't come fast enough.

Do you think it could have been a side effect of the special diet he was on for seizures? Has that ever been known as a side effect? And if so, why the hell didn't they make mention of that?

We need to get you going on a blenderized diet. Seriously.

When you feel you have the time, give me a call and I'll help you get set up with this. It's been one of the best decisions we've ever made for Parker.

I feel your sadness, your anger, your depression, and your fear. And, oh how I wish I could take it all away for you.

Much love,

Tammy and Parker

Shelly Turpin said...

Sweet Jax - I am so sorry. Poor guy. I so hope the pain meds work.

Holly W said...

Oh Lacey...why would anyone judge you for being so frustrated and upset? With everything you go through I admire the way you persevere and keep on going! Poor Jax, I can't believe this little boy now has to deal with osteoporosis on top of everything else. Does this mean you have to be super careful with him? Are more of his bones going to be prone to fracture?
It still looks as though you were able to have a good Christmas...Arina looks prescious!

Shari said...

Lacey, I am crying as I read this. I can't even imagine what it's like to have a child that can't tell you what's wrong. He is such a precious baby and he deserves a break. I hope those pain meds are working! And who in their right mind would judge you?

Lori said...

Oh, sweet Jax -- I pray his little leg heals quickly. I am so sorry that his Christmas was such a bummer.

But, I cannot help but smile and Praise God for the look of joy on Arina's face as she got to experience her first Christmas! Such a doll!

Tam said...

I am glad that Mondo, Carter, Tanner and Arina all had a wonderful Christmas but I am so sorry that darling Jax was in so much pain. As for the trite answers of "there is a plan" etc, I can totally understand that they hold no water for you. No loving Mama could stand by and watch her babe go through all Jax does and not feel frustration, anger and resentment. No child should have to suffer and no baby should be in pain at Christmas. You handle things amazingly, and you cope with more issues every day than most people face in a life time. You have every right to get down sometimes. You are a wonderful mama and a wonderful lady. I admire your strength and resilience and your courage to face the unknown challenges.

Mel said...

Aww Lacey, I'm so sorry that Jax is in pain. I'm with the others, your feelings are completely justified! I wish there was an easy answer. :( Praying for some comfort for you and little Jax!

Kim said...

I've not been around in a long while~Congrats to your new addition! What a wonderful gift you have given Arina! Your are an amazing woman! Praying for Jax~

Jessica mommy to Alex/ RTS said...

Thinking of you. Dont ever apologize your feeling away:)

Michelle and Sean said...

That is a bummer!! Poor guy! I agree, sometimes I just get tired of hearing that there is a plan. These poor kids shouldn't have to suffer so much. We have a post similar as well. Maggie woke up on Christmas morning with a fever of 101.7. She is still sick and miserable.

How do you look up all of his records online? I always just go up to the records place and have them print them for us. It would be so much easier to get them online.

Merry Christmas! Love all the pics and sorry poor Jax in pain again! It totally isn't fair.

Alison said...

Oh poor Jaxson - that is awful. I hope he is feeling better soon :(

Lauraa said...

I'm but that's just plain unfair. The poor, poor little guy. I always thought femurs were ridiculously hard to break and there he is, on Christmas Eve, in pain.
Life can be so shockingly torturous sometimes.
I hope it heals as fast as possible.
I'm so sorry :(

Scrappy quilter said...

All I can say is hugs. Praying for your little man.

Allison said...

So sorry to hear of Jax's broken leg. I work in a NICU and we see lots of osteopenia in children with chronic lung disease. Even though we(and you to Jax!) provide wonderful nutrition, they don't lay down those calcium stores as they should. So sorry for your little guy's pain. On a lighter note, adorable pics of him and Arina!!

ANewKindOfPerfect said...

Emily has osteopenia, they told me that when we did a bone age scan a few years ago. I always get worried when she acts weird, thinking she could have broken something, but (KNOCK ON WOOD) so far so good. I am SO sorry that Jax is hurt. I pray that the pain meds make him comfortable.

As for the rest of the photos, I love them! Look at Arina STANDING!! Oh my gosh, that's awesome. She is going to blow all expectations out of the water. :)

Oh, and anyone who has the nerve to criticize you or anyone else parenting a special needs kid, can go to hell!

Michelle and Sean said...

We have Aetna insurance. I don't know if that is different or how that works. It covers only IHC hosptials. Do you think that we would be able to do it with that? I totally want to look her stuff up.

Junior said...

Merry Christmas, such wonderful pictures of your beautiful family. So sorry to hear about Jax being in pain, keeping him in our prayers.

suelmayer said...

Lacey, no one can say anything until they walk in your shoes. Like you, I've often been told "there is a plan" or "God doesn't give you more than you can handle"...and I want to scream. We hurt for our children and there is very little anyone can say to make that hurt go away. I have often told people sometimes I pray to God, sometimes we have a nice conversation and sometimes I'm yelling at him at the top of my lungs. I continue to keep Jax and you in our prayers. One day at a time! Hang in there Lacey!

Anonymous said...

Huge hugs to you and your sweet little guy. Praying that the pain meds help. So happy to think of all the love Arina has now especially at Christmas thanks to your loving family. As always praying for Jaxson. - Maureen C

Sweet Pea's Mommy said...

I'm so sorry to hear about Jax! Poor guy!

I LOVE your photos of Christmas and Alina's joy! She is just precious and I'm so glad that you guys are able to spoil her and love her like you do!

LibsMommy said...

Libs spine surgery was utter you know what.... seeing her cry in pain 20 hrs a day for days, and pain meds not helping her, it broke me down ten times worse than any heart surgery she had. I cried every day. Seeing your child in such pain is by far one of the worse things a parent could go through. It's ok to be frustrated. I'm thinking of you guys. Praying Jax gets relief.

Jamie said...

Praying for everything you asked for in this post and peace for Jax. God bless and keep you

Colleen said...

Oh goodness, I'm so sorry to hear about Jax. It's heartbreaking when our kids have more that they have to endure. It's so unfair. Arina looks adorable in her new jumper!

Anonymous said...

sweet little boy...you are right! It is not fair.. I add my prayers to countless others that Jax will heal quickly. You are one special lady that fights for her kids! God bless you all.

Susie

G-Zell said...

Poor Jax. How horrible. I don't judge you at all. I would feel the same way.

Tina said...

I'm so sorry to read this terrible news about Jax. How can anyone judge you, I mean considering everything you have been through and continue to go through with Jax, and just thinking of what poor dear little Jax has to endure, this is really NOT fair and certainly doesn't belong to any higher plan, how can it. I just hope the pain subsides, this is so unfair, Jax doesn't understand what is happening and why he is in pain but he knows he is in pain. I think you are so justified in being angry and frustrated.
I will be praying for his speedy healing, he has enough to deal with already.
Arina looks gorgeous, and I love how she is standing. I am so happy she enjoyed her 1st Christmas and got to be home with her family.

Denise said...

Oh my poor, poor Jax. He definitely deserves a break from all the crap he has been dealt. I have no answers for you, I am sorry. Abbey is sitting with me right now and feels so badly for him too. On the flip side, I really do think that Arina is getting cuter by the minute. The smile is getting bigger and she simply looks beautiful!! Ella has the same Christmas sleeper too :)

Anonymous said...

I've just added your sweet little Jax to my prayer list. I am so sorry to hear bout his leg.

You have the most beautiful family!

stephanie said...

Judge you!!!! I dare anyone to!

it totally sucks that Jax gets the short stick every stinkin time.

How are his bones as far as the healing process? Will they mend properly?

sending some prayers to Utah!

The VW's said...

Such cute pics of your adorable kiddos! I love Arina's Christmas outfit!

Sorry you had to watch Jax being in pain on Christmas! I think it's only human and natural to question God's plan.....especially when you have seen your sweet boy have to go through SO MUCH in his short life! It doesn't make sense why one small boy has to suffer so much! And, as a Momma we can actually feel the pain of our children, I think...so you aren't alone in your feelings and questioning of God's reasoning.

I do know that God's plan is always better than our own though! We may not agree with it and we may not like it, but His plan always has a purpose and good will come from it! I hope He shows you His reasoning soon and I hope he gives you and Jax strength and peace while you go another trial. You are in my thoughts and prayers! Love and Big Hugs!!!

Michelle and Sean said...

That would be great if you could find out how I can sign up for that! Thank you Lacey!

Anonymous said...

Oh I am so sorry. I cried when I read about Jaxon. I hope he is ok, you are right it just doesn't seem fair :( !

It is hard not knowing the how's and why's in this life, hopefully someday....Just remember that you are amazing, and I dont even know you what a blessing you obviously are to those who do know you.

I hope your baby heals quickly!!

Kristin said...

Oh man - I ended up in the ER on Christmas morning with the flu. I thought about you guys and fortunate you were to have everyone home and healthy on Christmas this year. Guess I was wrong. Hope Jax heals fast.

Loren Stow said...

Oh Lacy! Poor Jax, I can't believe he has to endure this kind of pain - especially because you can't explain it to him! I can completely understand your frustration! I hope he gets better soon! How long will he have to have the splint for?

Jeana said...

I'm so sorry about Jaxon's leg. You have a right to be upset, I would be saying the same things. Praying that his leg heals quickly and that he won't be in pain. That is a really hard way to spend Christmas, poor little guy. How special it is for that little girl that have a wonderful Christmas in a home with a family that loves her so much.

teacher said...

Poor Jaxon and poor you! What a rough way to have to spend Christmas!
Love the big smiles Arina has with her new toy! :)

Hope said...

The pictures a great!! I am so sorry for Jax. I can't blame you for feeling the way I do. I've been feeling that way since I found out Ava has Mitochondrial disease. ((Hugs))

These kids are little warriors.

Amy said...

Oh Lacey. I am so sorry Jax and you are in pain. I have had those moments of why my Lord?. Again?. When is he going to catch a break?. I know you need to vent and let it out.Your feelings are real and they are human. As I read your blog I see simalarties( and differences) in our boys and us. I too vented on my blog one time an I too got slamned. Its still on my blog- Pity Party and Pity Party reply. Know that there are people who care and do understand. You Rock!

LisaL said...

So sorry to hear about Jax's leg. Really hope that the new pain med is helping and he is able to rest. Loved the Christmas pictures! Arina looks so happy!!

mandd3 said...

Lacey - how are Jax's calcium levels? We just started dealing with low calcium and osteoporisis is a consequence. I'm so sorry, I hope he can heal well and you get some answers soon.

Tia said...

Oh I'm so sorry - poor boy, so utterly unfair for him. And you're right; he really doesn't need anything else going on with him right now.

I really ohpe the stronger pain meds help - with the car seat, perhaps propping his leg with extra cushions - or propping the rest of him a bit with extra cushions - might help? Hard to describe, sorry. Just thinking about when my girls have had hip surgery; we've had to sort of pack them into seats and use extra support to accomodate whatever position was least uncomfortable. Rolled blankets can help too.

Poor little man - hope it is a quite recovery.
Tia

Michelle said...

oh no! I can't believe Jax has a fracture in his femur and severe osteoporosis! That is so unfair that he has to endure even more pain from something else on top of everything that he's been dealing with. So sorry and many prayers for answers and a speedy recovery!