| Author | |
4 lads mom
Forum All-Star
Joined: Sept 26 2006
Online Status: Offline
Posts: 1944
|
| Posted: June 05 2010 at 8:45am | IP Logged
|
 |
|
I am sorry to hog up air time here.....but I am pretty desperate. Lily is in so much pain with this final phase of bone distraction.....it is unreal. She is on oxycodone, and it barely touches it. She spends her day on the couch, not playing, and moaning, crying....it is pure torture when we turn the pins attached to her jaw to lengthen it......this is one of the hardest things I have ever been through with my kids.  This active part of the distraction should only last, at the very latest, until this Thursday. Lily started out so great after surgery, but once we started expanding that bone and tissue, it has truly been torture. I can hardly bare it. She starts crying half the time I walk up to her, signing, “Later”, thinking I am going to do something that hurts. I held her most of the day yesterday, praying that her suffering, the intense suffering of an innocent child, would somehow save babies from abortion....
On a good note.....Gabe has done beautifully this week. I am so, so thankful for that. He is pretty much back to normal, a little sore still around the actual surgery sites, but not bad at all. Deo Gratias!
Thanks, Friends.....I appreciate the prayers.
UPDATE 6/7 AM: We go later this afternoon to see our plastic surgeon about stopping the active distraction of Lily’s jaw.....I don’t think we can take one more day. Please pray for wisdom for the doctor to make sound decisions, and for Lily’s quick rebound once we stop active distraction.
UPDATE 6/7 PM: We saw our plastic surgeon, and we all agreed that we will turn just one of Lily’s pins, the side that is way out of alignment, for a few more days. This is just one pin out of the four....and hopefully this will start to partially alleviate her pain. She did have a brief respite at the hospital! After we were done, she saw a tiny playhouse outside in the hospital’s garden and we took her out. She played for over an hour, kept sitting in the little house, so, so cute!! She also got to feed a squirrel, one of her favorite animals!! Lily had an uncomfortable ride home, after that.....was in a lot of pain....but I am glad she got to play for a little bit. While we were there, we met a very nice family, their sweet little 13month old, Jason, will have open heart surgery tomorrow....he as Down’s Syndrome....it was an intense hour or more that I visited with Jason’s mom....we cried as we shared our stories....it was comforting....we exchanged emails and will be praying for each other.....God is good, even in the midst of such trials for us both, He brought us together....although very different journeys, we have much in common as special needs mamas.....
We’re in the home stretch....
6/12--Praise God!!!!! Lily hasn’t had any pain meds for almost 10 hours!!! She has played outside, she has a brand new swing that she has completely delighted in for a LONG time  She went on errands with us, and did fine......oh....I am getting my baby girl back!!!!! I know that she might regress a bit tomorrow, after such a big, busy day, but Lily is definitely on the upswing now. She didn’t sleep well last night, but I bet she is exhausted tonight and sleeps for a while!
Thank you so much, Ladies.....many  to you for being so kind and praying for my little Lily. I had to share our good day with you! Now....we just need to hang tight until mid-late August, and then her distractors can come out. THEN......we can start talking about that trach coming out. For now, I am so, so happy and thankful for today.
__________________
Mom of four brave lads and one sweet lassie
Scenes From This and That
|
| Back to Top |
|
| |
LisaD
Forum All-Star
Joined: Dec 27 2005
Location: California
Online Status: Offline
Posts: 526
|
| Posted: June 05 2010 at 8:51am | IP Logged
|
|
|
I am praying for Lily this morning, that her pain be eased.
I can't imagine how awful it is for her (and you).
__________________
~Lisa
Mama to dd(99), ds(01), ds(03) and ds(06)
|
| Back to Top |
|
| |
guitarnan
Forum Moderator
Joined: Feb 07 2005
Location: Maryland
Online Status: Offline
Posts: 10883
|
| Posted: June 05 2010 at 9:54am | IP Logged
|
|
|
Oh, you poor dears. I will pray!
__________________
Nancy in MD. Mom of ds (24) & dd (18); 31-year Navy wife, move coordinator and keeper of home fires. Writer and dance mom.
|
| Back to Top |
|
| |
Carole N.
Forum All-Star
Joined: Oct 28 2006
Location: Wales
Online Status: Offline
Posts: 4484
|
| Posted: June 05 2010 at 10:42am | IP Logged
|
|
|
Praying for Lily and also for you!
__________________
 Carole ... in Wales
|
| Back to Top |
|
| |
Willa
Forum All-Star
Joined: Jan 28 2005
Location: California
Online Status: Offline
Posts: 3881
|
| Posted: June 05 2010 at 11:57am | IP Logged
|
|
|
I'm so sorry -- I remember praying the same thing when Aidan went through so much pain before and after his transplant.
I prayed often that Mother Mary would bring comfort and rest to his little soul even if his body was in pain, and I pray the same thing for little Lily.
__________________
AMDG
Willa
hsing boys ages 11, 14, almost 18 (+ 4 homeschool grads ages 20 to 27)
Take Up and Read
|
| Back to Top |
|
| |
ladycarobe
Forum Pro
Joined: Dec 31 2007
Online Status: Offline
Posts: 276
|
| Posted: June 05 2010 at 12:03pm | IP Logged
|
|
|
I'm praying for Lily and for you!
__________________
best wishes,
Ladycarobe.
mom to dd6  , dd4  and dd2 and pregnant.
|
| Back to Top |
|
| |
JennGM
Forum Moderator
Joined: Feb 07 2005
Location: Virginia
Online Status: Offline
Posts: 17702
|
| Posted: June 05 2010 at 12:09pm | IP Logged
|
|
|
I'm praying!
__________________
Jennifer G. Miller
Wife to  & ds1  '03 & ds2  '07
Family in Feast and Feria
|
| Back to Top |
|
| |
ALmom
Forum All-Star
Joined: May 18 2005
Online Status: Offline
Posts: 3299
|
| Posted: June 05 2010 at 12:19pm | IP Logged
|
|
|
Oh, I have been anxious to hear an update. Glad that Gabe is doing better. Our prayers continue for Lily - and you, her mama. We are so sorry for the intensity of the pain you both are experiencing (physical and emotional).
Janet
|
| Back to Top |
|
| |
wifemommy
Forum All-Star
Joined: July 10 2006
Online Status: Offline
Posts: 732
|
| Posted: June 05 2010 at 1:58pm | IP Logged
|
|
|
Praying. Is there a pain management team you can call from the hospital? She may need different meds, combos or timing can make a difference. Annie
|
| Back to Top |
|
| |
SeaStar
Forum Moderator
Joined: Sept 16 2006
Online Status: Offline
Posts: 9068
|
| Posted: June 05 2010 at 2:21pm | IP Logged
|
|
|
Tell Lily she is so brave! Not everyone could do what she is doing. God has given her this special job.
I am praying fervently that her pain will be eased. I can't imagine how horrible this must be for all of you.
__________________
Melinda, mom to ds ('02) and dd ('04)
SQUILT Music Appreciation
|
| Back to Top |
|
| |
Bridget
Forum All-Star
Joined: Feb 07 2005
Location: Michigan
Online Status: Offline
Posts: 2198
|
| Posted: June 05 2010 at 3:00pm | IP Logged
|
|
|
It's heartbreaking to think of all her suffering. We'll up the prayers. (It most certainly is NOT hogging air time to ask.)
__________________
God Bless,
Bridget, happily married to Kevin, mom to 8 on earth and a small army in heaven
Our Magnum Opus
|
| Back to Top |
|
| |
Paula in MN
Forum All-Star
Joined: Nov 25 2006
Location: Minnesota
Online Status: Offline
Posts: 4064
|
| Posted: June 05 2010 at 5:43pm | IP Logged
|
|
|
Continuing to pray for Lily and all of you.
__________________
Paula
A Catholic Harvest
|
| Back to Top |
|
| |
guitarnan
Forum Moderator
Joined: Feb 07 2005
Location: Maryland
Online Status: Offline
Posts: 10883
|
| Posted: June 05 2010 at 5:44pm | IP Logged
|
|
|
I offered up Mass this evening for Lily.
__________________
Nancy in MD. Mom of ds (24) & dd (18); 31-year Navy wife, move coordinator and keeper of home fires. Writer and dance mom.
|
| Back to Top |
|
| |
JaysFamily
Forum Pro
Joined: March 30 2010
Location: Alabama
Online Status: Offline
Posts: 241
|
| Posted: June 05 2010 at 6:01pm | IP Logged
|
|
|
God bless her heart! We'll be praying for Lily and you this week.
__________________
In Christ,
Jaysfamily
wife to Jay
mother to DS(5)
|
| Back to Top |
|
| |
Kathryn
Forum All-Star
Joined: April 24 2009
Location: N/A
Online Status: Offline
Posts: 1520
|
| Posted: June 07 2010 at 9:02am | IP Logged
|
|
|
Just saw your update. I was coming here to check just on her. I was so hoping her pain had eased some. I will continue to pray all throughout the day for her strength and courage and some resolution and remedy for her pain.
__________________
Kathryn in TX
(dd 16, ds 15, dd 8, dd 5)
|
| Back to Top |
|
| |
DominaCaeli
Forum All-Star
Joined: April 24 2007
Online Status: Offline
Posts: 3711
|
| Posted: June 07 2010 at 9:37am | IP Logged
|
|
|
Absolutely holding Lily in prayer here. Poor thing.
__________________
Blessings,
Celeste
Joyous Lessons
Mommy to six: three boys (8, 4, newborn) and four girls (7, 5, 2, and 1)
|
| Back to Top |
|
| |
hylabrook1
Forum Moderator
Joined: July 09 2006
Online Status: Offline
Posts: 5980
|
| Posted: June 07 2010 at 9:54am | IP Logged
|
|
|
Praying for relief for your dear little girl, and for you all - it is so painful to watch her suffering, I"m sure. Praying also that the plastic surgeon is able to help with whatever needs to be done.
Peace,
Nancy
|
| Back to Top |
|
| |
aussieannie
Forum All-Star
Joined: May 21 2006
Location: Australia
Online Status: Offline
Posts: 7251
|
| Posted: June 07 2010 at 4:20pm | IP Logged
|
|
|
Oh, what a brave girl AND mamma....praying for pain relief for dear little Lily!
__________________
Under Her Starry Mantle
Spiritual Motherhood for Priests
Blessed with 3 boys & 3 girls!
|
| Back to Top |
|
| |
MarilynW
Forum All-Star
Joined: June 28 2006
Location: N/A
Online Status: Offline
Posts: 4275
|
| Posted: June 07 2010 at 7:51pm | IP Logged
|
|
|
My friend - you know we are storming heaven. Just looking to August when her trach will be out and she will be running around and eating and talking.
Hugs
__________________
Marilyn
Blessed with 6 gifts from God
|
| Back to Top |
|
| |
Mackfam
Board Moderator
Non Nobis
Joined: April 24 2006
Location: Alabama
Online Status: Offline
Posts: 14656
|
| Posted: June 11 2010 at 3:33pm | IP Logged
|
|
|
I've been thinking of you and Lily! I'm happy to hear there is some direction and a hope of a break and possibly/hopefully/prayerfully...a lessening of pain for dear Lily.
She's in our prayers!
Most Sacred Heart of Jesus, have mercy!
__________________
Jen Mackintosh
Wife to Rob, mom to dd 19, ds 16, ds 11, dd 8, and dd 3
Wildflowers and Marbles
|
| Back to Top |
|
| |
4Real Forums : We Pray to the Lord
Topic: Prayers to Ease Pain-Praise Report 6/12
