Day 1 for real...

Tuesday, March 13, 2007

Day 1 for real...

Well, today was a long hard day again. Ivee went into surgery at 8:30 am. We got to go back to the recovery room to see her about 11:20 am. She was not happy to be in there. I picked her up and held her, and she calmed down and went to sleep. I just felt like we were starting all over again. She has come so far, and then here we are again...intibating her, causeing conjestion, IV holes, knew stiches and proding...I just didn't want to start it all over again. She has had a long day. She's on Chemo now and it will go for 6 hours, which is til 12:30 pm. She wants to be held, but there are too many tubes hooked to her right now, so it is really hard. I have to go now. She is crying. Pray.

3 comments:

Anonymous said...: Hope- at ladies bible study today we had a lady come and talk who just really believed in healing and ALL God's word has for us as believers. I had her pray for me at the end - I stood in for Ivee. I thanked God that her healing is done in His name. She had a lot to say but she said there will be moments when you won't believe that she is healed but keep proclaiming God's word over her and speak life into that little girl. When i got back to work i looked at your blog again and i was looking at the picture of ivee drinking tea and grabbing hold of the bars of the bed. Those are miracles steps and just because she has a setback down don't get discouraged. I know that is easier said from this side of the computer but you have the faith - you know God. The enemy comes in and wants to rob you of what YOU know of God and what he can and has done. Don't let him. I don't understand why this is happening but I know God knew this day would come even before Ivee's birth and everything you and her have need of today is already ready for your taking. Just know that when you can't hold her God IS. Acts 3:25-26 ...I forsaw the Lord always before my face, for He IS AT MY RIGHT HAND that I MAY NOT be shaken. Therefore my heart rejoiced, and my tongue was glad; moreover my flesh will REST IN HOPE." Don't feel like she is starting all over. She is going to recover must faster this time. I proclaim it and believe God for it. "But, O my soul, don't be discouraged. Don't be upset. EXPECT God to act!! For I know I shall again have plenty of reason to praise him for all that he will do. He is my help! He is my God!" Psalm 42:11
"Lord, when doubts fill my mind, when my heart is in turmoil, quiet me and give me renewed hope and cheer." Psalm 94:19 Sometimes are answer to pray seems like it takes forever but when the answer comes it will be as though it has been no time. When she is running around the house getting into everything she can touch it will be as though it were that way always. I have come to love Ivee as my own child and I hurt with you - i was supposed to bring you only corny jokes but i don't think they are appropriate tonight - maybe tommorrow! Please Heavenly Father give my friend and her precious little one sweet rest tonight. Your mercies are new every morning and we thank you in advance for a fresh new day tommorrow. Many blessings, Paula Casallo; Tuesday, March 13, 2007 11:08:00 PM
Anonymous said...: I love to read Paula's comments. She cares for you so much. I care for you, too, of course, but Paula's so much better about writing stuff! ;-) There's nothing really that I can offer that will help, but if you ever think of anything that you do need, I'll get it to you. Until then, you have my love and my prayers. Love Ivee and each other, and don't let this take you down. You're strong, your faith is strong. You're amazing, and one day this will be something that is behind you, that you don't have to think about anymore. Our love to you ~; Wednesday, March 14, 2007 9:23:00 AM
Anonymous said...: My heart breaks to read about how you want to hold her and her needing you to hold her, but you can't. I could just sit & sob, but then I think about all the things I know are true, and I KNOW that our Heavenly Father is right there with Ivee. He's closer to her and in more ways than you or anyone could ever be. You are all in our prayers daily. I have another friend from Atmore with a baby in the NICU born at 26 weeks that I'm hopefully coming to visit soon, so if I get to come, I'll be sure and see them and Ivee. We hold tight to the TRUTH and we know that God's ways are greater than ours.
In Him, Daisy; Wednesday, March 14, 2007 3:37:00 PM

Ivee's story in SHORT...As if....

Ivee is a tough little girl. And with our help and by the grace of God, all will go well. We pray for a complete healing, and we know that our God is big enough...He is the Great Physician.

Story: On a routine Monday, December 18, 2006. I was missing work and taking my oldest daughter to the doctor cause of a stomach virus. Stopping at a grocery store on the way, I left the oldest in the car for a moment and ran inside with Ivee. I put her car seat on top of the grocery cart as so many of us mom's do. Leaving the store, I turned for a brief moment to throw something away. I turned around just in time to see the entire car seat fall face down on the concrete. I flipped, as any mom with a 7 month old falling face first would do. I arrived at the ER in record time. She already had a huge knot rising on her forehead. As they (eventually) started a CT scan, I felt God speaking to my heart. In all but audible words he told me she would be fine, but that we would find something else, that this was why she had fallen, so He could reveal it to us. So, as I watched from the tech room, I saw something that even to me, a non-trained observer, knew was not suppose to be there. A friend of mine was the radiologist there, and he confirmed, also by doing an MRI, what I suspected. I was at peace in spirit cause my heart had been prepared...but not okay. My husband was working out in Texas and would have to drive more than 7 hours to come home, not knowing what was happening, but just that she fell. Ivee was transferred to a local children's hospital in Mobile. That night, Dr. Martino consulted, and would run an MRI the next day of his own, and perform surgery on that Wednesday. On December 20, after 5 hours of surgery, all was successful, and Dr. Martino removed 98% of what he knew was an egg sized malignant tumor, later diagnosed as Stage 3 Anaplastic Ependymoma. The remaining 2 cm was on her artery next to the spinal chord.

Deficits from initial resection/treatment: Ivee had many deficits due to the tumors removal, even though he was able to leave her nerves in tack. Her right eye was severely crossed. Her vocal chords were paralyzed (left has regained use). Her hearing was affected (loss at 2000 hz and high frequency sounds). Hearing aids received June 6, 2012 at age 6. Have already hear improvement in F, S and ending sounds in 2 days time! Her balance was never truly restored, and she has left side body weakness. After 30 days (including Christmas) we were allowed to take Ivee home. She had 6 months of chemo and then 33 treatments of radiation at St. Jude.

Procedures/surgeries:

1.) Tumor Resection (12/06) – Anaplastic Ependymoma

2.) Gbutton placed for eating. (01/07)

3.) Nissen fundiplication pyloroplasty done (wrapping of throat & stomach) (01/07)

4.) Chemotherapy Begins (01/07)

5.) 5 central lines placed (many fell out on their own) (01/07 – 05/07)

6.) Port placed at St. Jude (06/07)

7.) Chemotherapy ends (06/07)

8.) Radiation (06/07-08/07)

9.) Rare scar tissue formation in the brain removed (09/08)

10.) Shunt Placement (10/08)

11.) Shunt revision/replacement (02/10)

12.) Hip Displaysia surgery – Dega Osteotomy {Not tumor related} (10/10)

13.) Reoccurance - GTR {Gross Total Resection} (02/11)

We were shocked (as was the doctor) when her Jan. 2011 scan showed a reoccurance. It was on the same artery where the orginal tumor was left behind. GTR was done on February 18^th with much success. 2^nd dosing of radiation began March 28 and ended May 6, 30 doses.

14. Begin 2nd dose radiation on March 28 (30 doses) Ended on May 6, 2011.

Improvements:

1.) Right eye is still weak, doesn't require glasses yet. Patching the good eye to strengthen the right one.

2.) Right vocal chord is still partial paralyzed. In Fall of 2008 , to the doctor's dismay, discovered she has received movement again in right chord (update: Since resection in 2/11, Right vocal chord is completely paralyzed, no movement now)

3.) Still G Button feed. Cannot eat much by mouth. She doesn’t have the drive to try to eat, but we are treating her with an appetite enhancer. She has been approved through Modified Barium Swallow Test.

4.) Balance is still and issue. Has improved over the years. Uses a walker and wheelchair.

5.) Has learned to stand (assisted) for a few moments by herself and take some steps/usually across a room (May 2012). Uses a walker VERY WELL!!

6.) Currently watching a paraesophageal hernia of the fundoplication. No surgery required at this time.

7.) Non-cancer related surgery due to hip dysplasia in Fall of 2010. Has improved her balance and slipping out of socket.

Currently:

She is doing very well! She attended K5 full-time with a personal aid (might repeat K5). She is very smart and attentative. She used her walker often throughout the day and is learning to take independent steps. She takes a little bit of something to eat everyday now instead of once a week! She has learned to drink larger portions at a time. Enjoys Hippotherapy (horse therapy). Is extremely observant, caring and just down right funny!

The Foley Family - Trusting in God at ALL Times!!!

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Tuesday, March 13, 2007

Day 1 for real...

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