Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, February 04, 2011

We were just ruling it out

Back in January Axel had a routine screening for AAI. I posted all the details about it here. We've been waiting for yesterday when Axel was scheduled to have an MRI done to determine if he *really* had it, and if so how bad is it?

Based on all the reading I've done we would eventually find out that Axel would be under life-long restrictions to keep his neck safe. Really, we were just ruling this out so that Axel could get his much needed dental work done.


This afternoon our pediatrician called. Two things to cover. You know, break the ice and catch up very quick on Angela's little episode earlier this week and make sure she's now fine. (she is.)

And now for Axel. The radiologist had just read Axel's MRI from yesterday and called her. Axel's spinal cord is seriously compromised. Not only does he ALREADY have damage done to his spinal cord, but he has active compression. Meaning just standing here doing nothing his spinal cord is being pinched. This means he is at significant risk of major spinal cord injury.

Let me put it to you straight. Spinal cord injury at this level means death.

I am not exaggerating or trying to make this into more drama than it deserves.

Axel needs to have cervical spinal fusion surgery done. He will be in a halo for several months afterward. 

A halo. 

On my child.

MY child.

There was a flurry of phone calls as I tried really hard not to freak out (ok, really I didn't do a very good job of that) and called all the necessary people to include them in the prayer chain. And of course there were the calls to the doctor, etc.

One of the calls was from the specialist at Shriner's Hospital in Philadelphia. (We're in Minnesota, by the way) He is the one who will be doing the surgery on Axel. He told me that Axel's case was "urgent" and that they will be calling me first thing Monday morning to arrange for us to get there as soon as possible.

And, Axel needs to be in a cervical collar NOW.

So now I'm sitting here waiting for an orthopedic medical supply specialist to arrive at the house to fit Axel for a cervical collar. A hard one. It will be worn during every waking moment.

Dear Axel.....

We just wanted to give you a really good life. Really, we didn't bring you hear to torture you. I swear that was not our intent. You are the most beautiful child with a spirit that radiates nothing but love and trust. You TRUST us. You have trusted me to keep you safe from harm, to get your mouth feeling better, to give you nutritious food....and to love you. Will you still trust me 4 hours from now when you've been wearing this new device and you want to be done with it, and Mama says no? Will you still trust me a few weeks from now when you wake up from surgery with your head and shoulders trapped in a device straight out of the movie Frankenstein?

I think back to just a few weeks ago. You had just come home and we brought you sliding on a giant hill at Grandma and Grandpa Lundgren's house. We, and you, laughed when you went flying into a snowbank face first. Twice. It was wonderful fun!

And we could have killed you.

I have an image of a dozen angels hovering around you as we loaded you up on the sled each time. I'm sure they were shaking their heads, asking God, "Lord in Heaven! Please make them stop this nonsense! We can only fly so fast!" And those angels flew down the hill with you, and wrapped feathers from their angel wings around your neck to protect it as you flew into the snowbank. Praise God for those angels.

Oh how we love you Axel. I pray that as we go through these next few months together, you will still understand that we love you, and it's BECAUSE of this love that we have to put you through this discomfort.


Angie said...


Prayers are being said here for you, Axel, and your family.

Our God is a Great Big God! HE will carry you through this.
Thank the Lord that Axel is with you, and he can receive all the help he needs.

Julia said...

Praying. So sorry. Let me know when your appointment will be!

Kim said...

Praying! Lord, Axel, your boy, has the sweetest spirit. Your hand is over him as he becomes a part of his new family. Thank you for watching over him, protecting him, giving him every grace as he bonds to his new mommy and daddy. Please be with him as his life takes a major change to protect his spine. Give Leah and Dean and Angela the strength to be there for Axel, and help him to feel safe and loved through every appointment and surgery and therapy needed to protect his life and health. And I pray the the collar might actually feel relieving and good to wear, and that Axel would not only tolerate it, but simply know deep down it is what is good for him. In Jesus name (who loves Axel and Leah dearly), Amen

marlene said...

Amen and amen to Kim's prayer!
Oh my word, how scary to look back! I can only imagine how your heart stopped as the memories played through your mind!

We usually see Renee and Kennedy when they are in Philly. I hope, if the schedule works out, that we could meet up with you guys. That would be great! Prayers for all of you.

jjpsmommy07 said...

sending prayers and will continue to pray for your family until Axel is well again. ((HUGS))

Kim said...

Your entire family is in our thoughts and prayers. I'm so sorry that this has been added to your "list," but we know that with God, all things are possible.

Becca said...

Oh, this is awful news. I'm so sorry. Hoping for a smooth transition to the collar and a swift and smooth recovery from surgery. ((hugs))

Devon said...

I am so sorry Leah. How unbelievably scary and hard this must be. I will keep you all in my prayers.

Christine said...

Oh my Leah. I am sorry to read this abot Axel. Thank goodness he is home with you guys now. Big hugs to all your family.

Jackie said...

Okay, I just caught up after not being online for a couple days. I had a lot to catch up on! Oh Leah, this is just another hurdle I know you can jump over. Praying for all good things.

Annie @ The House That Jade Built said...

My prayers are with your family! God works in miraculous ways doesn't he! I saw you had an appointment lined up which is great news - I'll keep praying!!