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Feb 10, 2010

ER, MRI and a Birthday Wish

I am sorry it has been so long since I have updated you. I wanted to post something fun, with lots of cute pictures. Unfortunately, it has been a rough week. Abby's head is hurting her again and she is having a lot of leg pain.

One side effect of chemo can be bone death. The chemo can cut off the blood supply to your bones and the area of bone basically dies (avascular necrosis). It is not good. Obviously. Because of Abby's pattern of leg pain, her doctors have ordered an MRI. So tomorrow Abby will be go under general anesthetic for an MRI.

The other possible cause of the leg pain is is nerve damage from the Vincristine. That is harder to diagnose but preferred to avascular necrosis........... I guess.

From Abby's point of view, hugs hurt again and "kids playing like kids" causes her a lot of pain. Because of her age, she doesn't understand that normal jostling that occurs when kids play doesn't hurt other kids, so she gets her feelings hurt when she thinks other kids are being mean to her.

Abby's doctor wants to try to get her off continuous morphine and only use it for breakthrough pain. It would be wonderful if we can do this but inconsistent use of narcotics maybe causing rebound headaches.

So is her intracranial pressure up??? I don't have a clue. I don't have a clue. Her headaches could be from her pressure going up again or rebound headaches from the narcotics or it could be a normal migraine. She has had a headache for 6 days straight. She is tired of hurting and I am tired of watching my baby hurt.

For now her doctors are asking us to give her her pain medicine as much as she needs it. Praise God!

A few nights ago Abby's doctor instructed us to go to ER. Between headaches and dehydration she needed to be seen by a physician. It took forever. We were there from 5 pm to 3 AM. They gave her a bag of IV fluids, which she needed but the rest was a complete waste of time. I have many friends who have lost their children. By remembering them I was able to "suck it up" and enjoy some one on one time with Abby. It is getting tougher to have a good attitude as we sit and wait and wait and wait. The sad truth of the matter is Abby handled the day much better than I did. Sad huh?

Two huge praises are that Abby is beginning to adjust to the medications for her pressure and her breathing is much better. Abby's energy level is beginning to improve. We have hope that she will learn to tolerate them much better. After 3 months of struggling, Abby's breathing is finally better. No snoring. No labored breathing.Now both of us are getting some much needed rest. Praise God.

So there are about a million things I could ask you to pray for but the main thing on my heart is a birthday party for Abby. Abby wants to have a birthday party with some of her friends. I would love to do that for her but I want her to be able to enjoy it. WIth Abby tired and hurting, it wouldn't be a bit of fun. I am praying for a window of pain free time, where we can do something special for her AND for a few flexible friends who could join us at a moments notice. Would you pray too?

We'll try to get some fun stuff and photos up in the coming days.

20 comments:

purejoy said...

awwww. praying for abby, but also praying for you. dealing with all you've been dealing with must be exhausting!

thinking of you often…

Nancye said...

I am praying right now........
Davis Family

Anonymous said...

Michelle- I hope you know Maggie would love to help celebrate Abby's birthday!!! We are praying for no pain and rest for everyone. Love ya- Stacey

Are These Kids All Yours? said...

You guys are always on my heart & mind. I can't imagine the waiting, the pain, the seeing her in pain, the waiting, medications, just wanting to be back to any kind of normal.....I do know that I can pray & do! I know that God is your strength & I know that you are prayed for and over constantly by so many. Know that we all love you! Praying for a FUN Pain Free Birthday Party!!!!

Kelli said...

As always, I'm so sorry to hear about her pain. I can understand how frustrating it is to wait and wait and wait only to have very little to show for it. Don't forget that you're allowed to have good days and bad days, too...

Hugs and prayers to you all.

Kelli B

Kathy said...

I'm so glad that you posted about Abby. I've been praying, and wondering...I got Abby's sweet thank you card this week, I will treasue it always.

I will be praying for a breakthrough so she can have an enjoyable birthday party soon. I'd gladly take on her pain for a day myself, if it was possible...Blessings to all of you, Kathy

Kat said...

We pray for Abby constantly and would love to share in the prayer for a pain free birthday. Our heart aches as she hurts...what a amazing little girl she is! Praying, praying, and more praying...

Debbie said...

so sorry that it's been such a rough week. I completely understand why it would be so hard to see your child in pain while sitting around waiting for hours in an ER. Must just be so frustrating. Praying that the MRI doesn't show anything serious, that she starts to enjoy many pain free days and of course that she gets to have a happy and fun birthday. She (and her family) so deserve that.

Ann Brown said...

Ugh. I so hate to hear that Abby is in pain yet again. Yet I do want you to tell us, so we can know how best to pray for her. I will be praying for a clear MRI, with no AVN (and yes, our dr told us that the neuropathic pain is preferable to AVN, and has suggested that Elke's AVN may be permanent. What a crazy world where we hope to choose the most preferable type of pain for our little ones!).

SO glad the breathing has improved. Keep an eye on it next time she gets vcr, and don't be surprised if she regresses briefly afterwards.

As always, you are all in my prayers. And mostly, praying for a FUN birthday party for dear little Abby!!!

Ann (and Elke)

Mom Of Many said...

I will gladly pray that for your sweet baby girl....she has endured waaaaay too much in her little short life....and a birthday party free from pain seems like a simple task for Almighty God.

Praying in Colorado!xo

Bobbie B said...

Oh sweet Abby. I'm sure she would love to have a few friends over to her house for a little birthday party! Will definitely pray the Lord will help feel much better so she can have her birthday party. She so deserves it.

Praying about helpful and good results for the MRI along with all of her prayer needs. And, praying for a miracle!

You are all amazingly strong!

Bobbie B.

whenpigsfly said...

We continue to pray with you for Abby every single day Michelle. Thanks for this update even though part of it is now what you were hoping to share. When she is feeling up to a hug, please give hera godo one from all of us??
Love
Linda
who'd love to bring some little girls to a party when you have one!!!

Bob West said...

God has greatly gifted you
I enjoyed visiting your blog
God Bless; http://westbob.blogspot.com/2010/02/encourager-part-1.html

Laurel said...

So sorry you've had a hard week.

Love you guys!

Laurel & the gang :)

Kim M said...

Michelle, thank you for the update and honesty. We who are praying don't expect your posts to be all rosy and fun, we need to know how to pray specifically for your amazing daughter. When we pray specifically, we get to see God at work in very specific ways. I feel it a privilege to pray for a pain free window to celebrate Abby's birthday. Will also be praying for the medical community concerning the MRI, etc.

Courtney Kay said...

Please Tell Abby she is so brave and loved!

Shannon said...

I am praying!!!!!! You can bet that I will pray for every little apsect of what is going on and for a BIG giangantic window with TONS of room to celebrate her birthday in style!!!!!! Thanks for the honor of letting me pray!
Shannon (mama to an adopted child with a heart condition)

Chere said...

I have an idea for Abby's birthday party that won't "hurt" her--my daughter had a "craft party" for my granddaughter (a year younger than Abby). She bought pony beads, ribbon, plastic string, etc., and the girls made necklaces, bracelets, and other fun jewelry. Moms and Dads were present to help with the crafts, and everyone had a great time and took something home with them. I will keep praying for Abby and hope she can enjoy her birthday!

laurie @ bargain hunting said...

What a precious little girl. I am adding Abby and your family to my prayer list. laurie

julio milian said...

abby te amamos tu familia de guatemala ruben.lorena.julio y reyna milian