About Me

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Born in Atmore, United States
Wife & Mommy. I have a wonderful husband who loves me deeply and three great kids. I believe in my Creator who guides me everyday. My favorite interest are stage/theatre, music/singing, antiques and art.

Tuesday, June 28, 2011

Much to say about Disney and MRI's

Yes, So I am permanently back at home, at least for a few weeks (I pray). Since I have been gone and done quite a bit in the last 3 weeks, this post will be a bit lengthy.
I'll begin with our trip to Disney/Orlando. I wish I could say it was AWESOME, but that doesn't quite describe it. It wasn't horrible, by any means, but in hind sight, I would have delayed the trip for a few more months. It would have probably been best to go in the Fall. Ivee wasn't much for leaving home after only having been home for 7 weeks. Now, it wasn't a bust, by any means. I just believe her lack of enthusiasm was a mixture of being homesick, being a bit tired of going and going, and the fluid build up in her head (which I will discuss later on in this post). The facilities used for Make-a-wish kids was also full, so we had to be put up in a Disney Hotel, The Grand Floridian. Not complaining, cause it is quite a nice place, but Give Kids the World had so much more available for her. We would have preferred being there, but I told the kids to eat up the Disney Resort, cause they would never be staying in one again (well, not that one)...not unless the family strikes oil somewhere!
Well, let me get off of the negative and try to get on with the positive....
We were able to use the GKTW facilities even though we had no room/house there. The pool was nice, the food was decent, and the FREE ice cream anytime during the day became a family favorite! Ivee always ordered the chocolate, white and pink/or orange, depending on her mood. She always at least at a couple of bites. Ethan always order cookies and cream with wiped cream and cherries. Em, Britt and I ordered shakes. We always seemed to get 2 shakes each and Ethan had a mound of ice cream. They didn't play around. They meant it when they said we want you to eat all the ice cream you can! On Thursday night, It is Christmas there. We didn't get to stay for the parade, everyone was just too tired from the day, but Santa did get to hear from Ivee and gave all 3 kids a present. Ivee was not too hip to the fact of seeing him...in fact, she cried the whole time we were outside waiting. BUT the moment she saw him, she was as happy as can be! This became the norm for our entire trip. Ivee cried about everything we wanted her to do or see, but the moment we did it or saw it, she was fine. I believe there is a reason for this, but I'll get to that later down in our medical update paragraph.
The parks....well...let's just say...Universal Studios has the star treatment down to a T!!!! When a character (ie. Scooby and Shaggy, Marilyn Monroe, Simpsons) saw Ivee, they would blow off other kids to just get all over her, loving on her, taking pictures. I couldn't believe the attention they would pour out on my kid! If you were going to go on a ride, you just showed your pass, and you didn't just get in the fast lane. They called for an escort and took you to the very front...no waiting. And they have a cool (literally) child swap area so no one has to wait out in the heat to switch out on rides Ivee can't ride. Unfortunately, Universal parks aren't really for the little one, so we visited there the 1st two days. Ivee was quite moody for all of it, but her reaction to Barney was the best. She must have cried for 10 minutes waiting with us to go in. Just wasn't feeling it. Then as the lights went out (cause Barney pops out of the stage) she became frightened. The lights and music come on and she had that look of fear that turned into a look of pure admiration. It was priceless, and I only caught the end of the look on film. It was like a 12 year old being 5 feet away from Justin Beiber at a concert. PRICELESS! She did ride the carousel and 1 fish 2 fish ride at Dr. Seuss land, but we had to force her onto ET.
So, Friday, we decided to do a "no park" day. We just woke up late, went to GKTW and swam for over an hour. She loves to swim!!! (If you all didn't already know that!) Then we went back to the room, relaxed for a few hours, and went to Medieval Times that night, a dinner theatre. She wasn't too keen on being there at first. The lobby was very loud, but she did really get into the show! Em, the older kids, and I loved it. It was fun, different, and entertaining. The men in that show are very talented, hardworking, and skilled at what they do! Very impressive.
Saturday was our first day at the Disney parks, Magic Kingdom. Ivee was able to skip the lines for character meetings there. She enjoyed the castle show, riding the carousel, and she surprised us completely by wanting to ride the tea cups. I took it easy and didn't spin us. That evening she had an appointment at the Bibbity Bobbity Boutique where she received an authentic Cinderella dress (she chose Rapunzel, but they were out), shoes, crown, wand, and had her hair, face, and nails princessified! After that we meet Mickey, Minnie, Aurora, and Cinderella herself!
We ended out the trip at Hollywood and Epcot, just taking it easy. It was quite hot there in Orlando, but not any different from being at home. Except at home we just stay inside if possible.
We were home for one day to pack and leave for St. Jude for her follow up MRI. She was NOT happy about leaving home. Home is the only place she wants to be right now. I can't blame her. We have been away from home this year for more than 80 days! She had pretty bad anxiety on Friday. Getting her port accessed is always traumatic for her now, and then we had difficulty getting blood return. She cried on the way into the doctors office as well, which is highly unusual, but child life helped out by letting her dance on the Wii. That girl loves to dance. The MRI revealed no sign of tumor, Thank you Jesus, but the fluid on the back of her head, that I've been very concerned about, showed an increase and it showed signs of compression on her brain stem. This is the reason I don't think she's been in best spirits and not quite herself. She just isn't feeling all that well. Dr. Merchant is going to discuss with Dr. Boop what they should do about the fluid. They believe it is a leak in the head, possibly an opening of the surgery caused by the radiation. As I've stated before. They are not suppose to radiate more than one time. 2nd dose radiation can have devastating effects on the tissue of the body and vessels. So, this is a concern for us right now. HOWEVER, she is doing amazing! For the effects that radiation could've had on her, this is something that seems small. However, could lead to another surgery. We just don't know right now. Also, I will be taking Ivee back up to Memphis to see an endocrinologist and GI doc (since I don't like ours here) to get this hernia of her belly taken care of and to find out why she is heaving everyday.
Well, I could talk more, but I feel I have already made this post way too long. Thanks for the prayers and continue taking Ivee to our Savior in Prayer! We are never over the mountain so much that we don't need prayer! I will be posting video and pictures later on. I have to go grocery shopping now!!! Thanks and Love!!!

Thursday, June 09, 2011

A trip to see the Neurosurgeon

The neurosurgeon agreed that the swelling is just probably at reaction to the radiation, but it made us feel better for them to take a look at her before we take her on vacation in Orlando. It's something that we already had heard over the phone and from the pediatrician, but it is comforting to hear it from an actual neuro doctor! So, we are preparing for our trip down to FL with only 5 days to go! Ivee is super excited and keeps telling everybody she sees, mainly doctors, about how she is going to Disney to swim!! Today will be the last day she has a doc or nurse touch her for a while. It is Port Flushing Day! Boo :( She hates having her port accessed, but at least she didn't cry and kick or try to hide when I put the numbing creme on this morning. I won't have much time to post once we are back from Disney. I'll be home one day and then I have to drive up to Memphis for Ivee's check-up and MRI. So, if you're not already, go ahead and be sending up NERD (No evidence of Recurrent disease) prayers for her MRI.

Monday, June 06, 2011

The latest on Ivee

Ivee is doing well. We are still concerned about gagging/heaving and swelling in the back of her head. This morning, her little eyes are bloodshot from it! Her daddy wants me to get her in with the neurosurgeon here in Mobile (I don't really want to drive to Memphis, but will if I have too). The swelling seemed to have gone down, but is worse again this weekend. Since our Make a wish trip is next week, I would hate for anything to go wrong while we are in Florida. (We are all sooooo looking forward to going. It is a much needed break from reality and work.) She is suffering from sinus issues as well, which is what we are hoping is the cause of the gagging/heaving. She is on an antibiotic to help get rid of any possible sinusitis, but so far she is still having issues. She has also complained of back pain on and off, nothing consistent, but as a momma of a kid of brain cancer (that can also go to the spine) I am concerned and aware of every complaint. We are in the process of trying to potty train, but this is very difficult for Ivee. She has very little to no warning that she has to go tee-tee, so this will be a going potty based on habit more than based on sensation. 
So, please lift up a prayer that Ivee's head swelling is still just trauma from another dosing of radiation, that the back pain is nothing and that this antibiotic takes care of what is causing her heaving. If the heaving has anything to do with her paraesophageal hernia that means another set of test and visits to the gastro doc, whom I don't really care for! 
"Heal me, O Lord, and I will be healed. Save me, and I will be saved, for you are the one I praise!!!"