The Foley Family - Trusting in God at ALL Times!!!: October 2009

Wednesday, October 28, 2009

Update

Sorry I'm late getting this up. We got home from Memphis and our modem had crashed. Once again, I have internet back.
Ivee did well at her check up. She used her walker for the therapist, which is a big thing. We are "uping" her feeds, her weight has been down. She came out of the MRI fine, and within 20 minutes was her grouchy self. She is always like this. The neurosurgeon said that everything he sees is still stable. Her brain stem is still in the same position with the same pressure on it, but as long as she is moving forward (no matter how slow that may be) then she is okay. We just need to watch for any regression, that would be a sign of an issue with the brain stem.
Ivee has a speech therapy this Thursday. Praying that they will be able to help her and give us some more insight. Hopefully she will eat for them. She loves to walk, but with someones hand most of the time...not with her walker.
Her comprehension and vocabulary is still expanding. She loves school. She has discovered that playdough is an okay thing, so she wants to play with it all the time. She is always wanting to color. She reminds us to pray at every meal, and she leads the pray at meal time and bed time. Not sure what she is saying, but she just wants to talk to Jesus.
Remember to pray for Johnny Sileno and his family (he is in our links column). They found a cloudy place on his last MRI. He will be returning to St. Jude in a few weeks for another scan.

Monday, October 12, 2009

The Feeding and the eyes

So, feeding clinic was a bust. She didn't cooperate at all. Surprise, surprise, surprise!!! They did give me some helpful advice, just to keep my sanity, and they are going to assist in getting us more help.
The eye doctor saw her today. She didn't do so well at that visit. SO, we are going to continue to patch her left eye, and I will work with her here on a site chart to see what she is up to...for the next 4 weeks.
We leave for Memphis on the 20th for her next check up. Taking everyday....one day at a time.
Thanks for checking in, and I'll give more detail and updated pictures soon.

Tuesday, October 06, 2009

Prayer for Thursday

Ivee has feeding clinic this Thursday in Mobile. They are suppose to access her and she what I can do to help her eat by mouth. The only problem....you can't make her eat!!! How do you convience a 3 year old that food is good. That having a g button is not normal. She even tries to put her own tube in sometimes. I try to be patient, but she doesn't cooperate in the least. She will love something for three days, and then after that won't even try it again. I try not to get frustrated, but I don't know if I should force her (like we sometimes have to do, with all our children) or if we should just continue to just support her. I guess there is no right or wrong way to do this. I love that fact that she is strong, cause that is what got her through all this in the first place, but that stubborn will of hers will often get in her way to progress.
Continue to pray for the walking and eating. God bless.

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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!