Prayer request...

when you think of it, say a prayer today for Noah and Lyssie. They are desperately fighting for their lives. Also, say a prayer for Aubrey and her mother, Monica. Aubrey will be undergoing facial re-constructive surgery to help restore her face after cancer's devastating effects on her right-side of her face. So many request, but these are the urgent ones. God bless you all.

A long Monday to begin week 3

It's late and I'm tired, but I decided to write a small note. We had a LONG day of appointments beginning with ALL 3 therapies!?!?! I'm beginning to question the sanity of the scheduler in RO clinic!!! As of Friday when I got our Monday schedule, I had a 45 minute break between to therapies, so my plan was to get breakfast then. As we checked in this morning, I saw that all three therapies had been scheduled, followed by Triage (where they access the port, take weight, height, temp, Blood pressure..blah, blah), then the clinic visit to see the doctor, then radiation. All to be done before 1:00 p.m. So, luckily, our OT, Ashley, let me sneak out for a bite. Then Ivee did very well cooperating for all three therapist, thank the Lord. All ran quickly until we hit radiation. They were 1.25 hours delayed getting her to sleep. I was starving, by then, Ivee, who has no appetite, is getting hungry. Once under, I ran to renew my meal card and grab a quick bite. Once Ivee woke up, it took an hour to calm her down. She just sat and cried for home, and daddy. Even calling him on the phone didn't make her happy. It wasn't a fit throwing cry, but my heart is aching and I am home sick cry.
Finally, she is asleep and all was well later. I haven't been sleeping well. Last night I had night sweats all night and dreams that don't seem to end. My family is missing me, especially my husband who had a rough, tough weekend emotionally. He's been doing well, but he really misses being able to have me around for sporadic talks. I miss him as well. Hopefully the kids will be good for him the rest of the week, and hopefully Ivee will wake up better after sedation in the next few days until Papaw and brother and sister come for a visit.
Okay, that was my quick note. Have a blessed night everyone, and read ya later.
Hope

Week two is almost at a close....

Almost to the end of week 2 of RT. Just 4 more weeks to go after this one is over. We have made many friends here at the RMH. Even have our own supper club...where we banish all forms of hot dog!! Many of you have sent Ivee mail, and that just makes her day!!! She loves going to see if we have a letter or package in the mail. She spends her nights at dinner entertaining our new friends with her mad dance skills. She was really on it last night, and she had her friend Brandon laughing his booty off!!! It was great to see Brandon so happy. He ask to see his silly little friend, he was asking for her this morning. The sample T-shirt that was on back order has finally come in, so hopefully I can give my full approval for them to print the t shirts SOON!!! So, go ahead and get those orders in if you haven't yet.
On a serious note, she is handling treatment really well. We are still worried about what it is doing to her, but most days she is her cheerful Ivee self. The only hard, hard times is the 30 minutes after she wakes up from sedation. I feel like some days I am way too use to this life. I guess after living in it for over 4 years, it just is what it is!! This is what life has been since Ivee came into this world, fighting for life from the beginning. I guess it's like someone who's child has a disability from the day they were born. You know you have to learn to live with it so...it becomes normal. So, I sometimes ask myself....."Why in the world should a life with a child battling cancer for her life feel normal?!?!?!" I see the new frazzled parents just starting this journey, and those days of feeling like that seem like ages ago. Shouldn't I still feel frazzled? Now scatter brained....yeah, that is there. I guess I'm just not going through the motions right now. Maybe I'm just focused or maybe even comfortable in this role. I know that is wrong...but it's just so true.
Okay, I guess I'll quite with that weird stuff and just say.....we miss home, but things here are so familiar that it just seems like home #2. We are in Memphis so often during the year that someone was telling me where the closest post office was by street names, and I knew where she was talking about. I have developed a love for this city and for the people I know here. But, don't worry my Alabamians...we'll be home before you know it. 
Much Love and keep on praying for Ivee....the blessed. 

Begin Week two of treatment....

Daddy and the kiddos left yesterday, and there was crying all the way back to the house (I think for Ivee and daddy). He's ready to leave the other two with me. I think there is a greater appreciation for momma now :) Ivee is looking forward to them coming back in a few weeks. Papaw will be bringing the kids up for spring break and their daddy will come up Easter weekend to get them.
Today was a crazy day around here. It seemed like all the kids waiting for treatment were on edge, kind of like a dog who is scared of storms. And it did storm here today...badly. They had to postpone treatments due to power surges, and this made all the treatments behind. Luckily, Ivee got hers before the surges, but these other poor babies were really delayed. The ones that have to be sedated are NPO (Nothing by mouth) 8 hours before treatment. Many are on steroids and they are STARVING when they wake up. So they are tortured to wait until treatment is over. The delay made it worse.
Ivee is cooping very well to our daily life. It's not an easy thing, doing all this, but we always seem to make the most of it. We have an amazing new bunch of "family" members here. We even have a "supper club" going on. It is nice to be able to reach out to these families and feel connected. It is so different then just the 4 to 6 month visits because when you live under the same roof together, you build a more closely knit relationship. I will follow these kids and their parents journeys forever, come what may.
So, when you say a prayer for Ivee, add Brandon, Levi, Emily 1 & 2, Lucy, Hutch, Chasity, Justin, Haley and Allison to your list. I'm sure there will be more along that way. God bless.

Into weekend #2...

So, week 1 dose #5 is complete. I'm not sure I should call it #5 or should I call it dose #38. When this is all over, Ivee would have received 63 doses of radiation to her little body. I have met one other family here at the RMH who is dealing with a reoccurance of Medullablostoma. Even though it's not Ependymoma, we are all in the same boat. Unfortunately, she is having full radiation to the entire brain and her hair is falling out. Ivee's radiation is just focalized on the one spot where the reoccurance was. So, her mommy is going to have to buzz her hair off tonight. Another little girl's hair was buzzed at the beginning of the week, and she has been sporting some pretty awesome wigs today!!!


Ivee's been counting down the days til daddy arrives. She didn't mention anything today, but Emmett planned getting here today before she was to awake from treatment. So, as Ivee awoke from sedation I walked in. They say that the moment she awakens from sedation, is immediately ask for me. She saw me and said, "hey", then daddy popped out from behind me. Her eyes, as drugged as they were, popped open big and she declared, in her soft hourse little voice, "Daddy, you're back!!!" It was priceless. She was telling the nurse that her daddy was back! Then she ask to "Hold mommy." It is so sweet. When she wants us to hold her, she'll say "I want to hold momma" or "I want to hold daddy." 
She has been looking forward to getting her "Buddy" out today. A "buddy" is the needle infusion line they put in her port. It stays in the whole week, Monday to Friday. I told her it was coming out today, and she is quite happy that is gone. 
So, daddy, Brittney and Ethan are here for the weekend. Ethan is already bored. Brittney is already talking about nothing, and Emmett is touching and annoying me. Ahhhh...home sweet home came to me!!!!  

Let's Order some T-Shirts.......

Team Ivee Shirts
I know this is a lot of info, but I want to make this easy on everyone, including us. Thanks for your patience in reading how to order. 

Here are sizes available and prices

Child Sizing: $11.00 Each

2-4 small

6-8 medium

10-12 large

14-16 extra large

Adult Sizing: $12.00 each

Generic sizing t-Shirts: small, medium, large, extra large

Adult Plus sizes: $13.00 each 
2X, 3X, 4X

How to receive your shirt: 
There are a few ways to get your shirt. Choose the best way, and then follow how to inform us in the "How to pay for your shirt".

1. If you live in the Mobile/Baldwin County area, You can pick your shirt up from me in Bay Minette, or I can mail it to you. (see below) 
2. If you live in the Pensacola area, my sister, Sonia, would gladly let you pick your shirts up from her. Just make sure to follow information instructions in ordering. 
3. If you live in the Memphis area, I'm sure you can catch up with me at St. Jude or i can mail it. Just email me or follow the instructions in ordering. 
4. If you live anywhere else, we will mail it to you for the price of a flat rate box. I have listed the prices below (in the "How to pay for your shirt" section). It is based on how many shirts you need mailed to you. Read carefully to choose. . 

How to pay for your shirt

We have found the easiest way to receive payment for the t-shirts is through paypal, an online financial payment/buying site. (Instructions are below) It is also the fastest way to place your order. I know some are not very technologically savvy, but the site is pretty easy. (If some still have problems using it, contact me via email and you can mail your order and a check or money order to my home)

When paying, don't forget to total you shirt quantity and prices. If we are mailing your shirt, you will need to include the price for shipping to you total. (example below in blue) The flat rate prices are listed below.

Flat Rate Box quantity and price: 

1. 1 t-shirt: Small flat rate box - Price $6.00
2. 2 to 6 T-Shirts: Medium flat rate box - Price $11.00
3. 7 to 12 T-shirts: Large flat rate box - Price $15.00

If you need an example on how to order: 

So, for example if you order were:

2 Children's Shirts:  2 x $11 = $22.00

2 Adult Shirts:        2 x $12 = $24.00

1 Adult plus size:    1 x $13 = $13.00

Shipping:               5 shirts = $11.00

The Total would be             = $70.00

So your total would be $70.00. This is the amount you would send via paypal. 

(Then you would leave the details in the message box)

Instructions for Payment with Pay Pal

To Purchase your t-shirt through PayPal in 4 steps:

1.  Click the link (Pay Now) below (or go to www.paypal.com) 

2.  Go to Send Money

3.  Choose Buying Something and then follow the instructions, entering the email address

hopealations@hotmail.com as the recepient address.
4. Paypal will have you create an account, if you don't have one. Don't worry, this is a very secure site. I have used it a long time. 

5.  VERY IMPORTANT........Once you get to the check out screen, there will be a place for you to leave a message. You must give the following information: 

1. Name
2. Your shirt size(s) and quantity
3. Email address
4. Phone number
5. List how you will receive your shirt: Mail or pick up
6. If mailing your shirts, you must include your mailing address.

After making your payment, please print out your receipt for safe keeping. If you are picking up your shirt, we will email you once your shirt has arrived. If it is being mailed, we will send an email to let you know it has been mailed.   

T Shirt Cost

Okay...so T Shirts are going to be the following. Sizes: children's and Adult's----Sizes: S, M, L, & XL = $12.00 -------Adult Plus sizes 2x, 3x, 4x = $13.00. I'm going to set up for the pay pal account for people to use some day soon. Checking shipping options.

T Shirt Orders in the near future

We are almost ready to begin ordering T Shirts and I am so excited. They are finishing up the artwork to make the silk screens. The verdict is still out on the shirt color I am picking until I see the samples next weekend when Emmett comes up. I believe we have the prices, but they are not final. Em and I have talked about the cost, and we will be rounding the cost up a little, but I don't want to break anyone's wallet!!! The little extra made will go to help with the traveling expense for Em and the kids to come up to see us, and for the lack of having a kitchen here to cook in and having to eat out. (:
I can tell you that we will have children's size down to 2 T and Plus sizes up to 4x. I believe that I will be taking payments through PayPal, as this is the easiest way to do it, especially for those who live out of our area of the Eastern Shore. I also will be able to mail the t shirts to you by flat rate service from the USPS for just the cost of the flat box rate for those who can't pick them up from us. (So those needing it mailed will need to also include the shipping cost. I will let you know what the cost is based on how many you purchase and the box it will have to be mailed it.) I am not living at home right now though, so mailing will have to happen when Emmett or another volunteer can get to it.
So, stayed tuned. Ordering might begin this week....

After another crummy night in Memphis....

She had another horrible night of sleep. She would wake up often screaming and talking jiberish, kicking and pulling the covers on and off. I've never seen her act like this in her sleep, outside the hospital the time she had the reaction to the vancomycin. The only thing that was different about what I've been doing for her is a cough syrup they perscribed. SO, she will not be getting that before bed tonight!!! And hopefully that will solve that issue, I pray. 


Ivee's chest xray was compared to the last one they took (in 2008 mind you). She's always had some thickening of the lungs, but there is still a little room for concern, so we are starting her on an antibiotic today as well as some allergy medicine. With all the "new blooms" here and back home, even a typical healthy person could be dealing with all the allergy/pollen JUNK in the air. She has been sounding so awful. I've never heard her with a cough like this. Her lungs are crackly and she has a bit of a weez with the coughing. 

Tomorrow they will do Ivee's film. It is like a dry run for radiation treatments, doing all that they would do for it, but without the radiation beam. It will make things more comfortable and ready to begin radiation on Monday. 

We are trying to get her better quickly so that she will be ready to start the treatments and we won't have to be concerned about her lungs/breathing during sedation.  

I had a pleasant surprise visit with a former student and son of some old friends. My former Pastor and co-worker, Phil Wilson's oldest son, Isaac, dropped in on us yesterday. It was great to visit with him and see what he is doing and pursuing here in Memphis while he is in college. He has an exciting future ahead, and I am looking forward to seeing what it holds for him. He also caught me up on what the rest of the family was up too. Looking forward to a visit from Phil when he comes to Memphis sometime. And even though I had seen Isaac since he was 13/14, it was nice to talk to someone that I had known and had some things in common with. We shared many a dinner theatre experience those many years in Spanish Fort. 


On another note, it is kinda lonely here in Memphis right now. I haven't really had anytime to meet the families here, doesn't help that Ivee isn't feeling well. The last thing the chemo kids here need around them is a sick person. It is difficult to get around with Ivee, especially in the cafeteria, since she can't walk. She isn't back up to speed with using her walker and she doesn't feel well anyway. I have only been out of the room for hospital visits and for dinner at night. Plus, I find it difficult to strike up conversations with people, especially when you don't know where they are in their fight. Some families here want to be left alone, and some are struggling just to keep it together. So, I find that I don't want to "intrude" on others. I, as usual, will just wait until the time feels right or God prompts me to speak to someone. Plus, I don't have it in me to just strike up a conversation with anyone, I'm not good with small talk unless it's with a small person...kids that is. They will talk to you about anything if you are willing to listen to them. 


Okay, so that's enough whining from me. I'm going to go attend the 4 year old. 

Not all is well from the Land of the glass pyramid....

Ivee has been struggling with some congestion last week. Yesterday, she had some moments when waking up, but last night before bed, she just had a huge coughing fit. Then at 3 a.m. this morning, she just couldn't get any relief and she had a fever. I have salined, neubulizered, and cough syruped her. Today, we will get a chest xray, and continue to try to help her. She just sounds awful. She has never had trouble like this before. She wants to actually leave the room today, and this is the day she needs to stay in.
Praying we can get her relief before Friday when she needs to be sedated for a scan.

Normally I wouldn't just post our address for mailing, but I know many of you would like to send cards, letters, or stickers to Ivee while we are in Memphis. So, here is our snail-mail address....

Ronald McDonald House
Hope or Ivee Foley
Room #33
535 Alabama avenue
Memphis, TN 38105

Home Sweet Home in Memphis

Made it to the RMH in Memphis about 5:45 p.m. Ivee is fast asleep in her big girl full size bed. She wanted the "other" bed, but mommy put her in the bed I want her in after she feel asleep. (It can be pushed against the wall!) I have unpacked and put everything away. Now, to just begin our normalcy here. Oh, and the RMH has repainted since I was here 4 years ago. My room is Bright Lime Green (if anyone saw Britt's orig. room, you know what I mean) Boy, I'm going to be nauseated every morning :) For my friends and family, I have a phone number and snail-mail address. Message me if you want them. Also, I have video call on Skype, so if you want a video call sometime, friend me.

T Shirt designs...

Well, we are working on the design still, cause Em and I can't agree on the front. We have the back done...we think. What are your thoughts on it?

 As for the Front, we are at odds. Soooo for those interested in purchasing one, let me know your thoughts on which of the following you would like for the front. Take a vote and let me know. Whatever is chosen will go on the left side pocket area.

Concept A: Above picture

Concept B: Picture to the left

Concept C: Picture to the right

Radiation Postponed

I recieved an email from our RO nurse yesterday. She informed me that Ivee's radiation plan will need some more work, so she will not begin radiation on Monday. I have decided, however, to go ahead and move up on Sunday anyhow. Hopefully, once her plan is in place, we will be able to begin asap if we are already there. 
I am in the process of trying to get life here at home taken care of. There is still so much to do on my "to do" list, and I don't even have packing for being gone almost 2 months on there. 
I hope to complete the shirt design for our "Team Ivee" shirts sometime this week before I leave so that I can get together with the silk screen/t shirt company. I hope everyone likes what we come up with. For me, I like to be creative, and I want the shirt to have some Ivee flare, but I am trying to make it gender friendly. (This does make me kinda sad, cause my baby is so girly. She would love a "pretty" shirt!!!) 
Continue to lift us and others up in prayer. Sooooo many kids out there still fighting the fight. And many don't ask for it, but continue to pray for the neurosurgeons, hemo oncologist, and radiation oncologist that treat these babies. They are the ones whom God uses to continue the fight and give hope to many. These people chose to go to school, to use their skills to help others fight for their lives! They are still trying to make improvements, not only in defeating cancer, but in tying to help these deveolping children sustain a better quality of life! 
God bless!
Love Hope
Mother of Ivee the Blessed
Jeremish 17:14
"Heal me, O Lord, and I will be Healed
Save me and I will be saved
For you are the one I praise"  

Update on....Life

Sorry I haven't posted, but it's for different reasons. 1. My phone is not the easiest thing to update on. 2. Didn't have my PC with me. 3. I haven't felt like it and unfortunately, I don't feel like it right now. I'm already pretty tired and we still have to set the clocks forward tonight...grrrhhh!!
We made it home Friday after being back in Memphis since Tuesday. Thanks to Ninfa Moore for going with me and to Tony Moore for letting her go! Ivee was not happy about being back on the road again. We had to stop often on our trip up. She finally gave it up for a nap about an hour away from St. Jude.
Her first appointment on Wednesday was labs, and we couldn't get her port to work. So, we had to fill it with TPA to break up the clot in it, you have to wait an hour for it to work. We were finally able to get it to flush and pull her lab work out. We meet with Dr. Merchant. He once again went over the short term and long term side effects of radiation. Then the dangers of radiation, especially the complete dangers of 2nd time radiation. He stated that so far they have been "lucky" in this, as they have never really seen the severe side effects of 2nd time radiation, but it will one day be inevitable. (I personally don't believe in Luck. I believe in the protective power of my Creator, Healer and Provider. And don't think for one minute that I don't think God uses that man or his abilities and the abilities of others to help our children). I remember Ivee's side effects from the 1st time radiation. She was so tired, her poops were awful and smelt sooo bad. She has scarring from it, and it will probably scar again. There can be effects on growth (which Ivee has to see an endocrinologist when this is done) and there can be balance and developmental delays...among other things.
When it came time for her CT Radiation Simulation, they were 2 hours behind. Luckily, once we got back there they knocked her out quickly. That is great because she was highly upset to go back under. I promised her she wouldn't wake up with another cut or tube down her throat. I can honestly say....I NEVER lie to her. I always tell her what is going to happen. I will never let her say you lied to me or I don't trust you. I started that when Brittney was little and had to go to the dentist. They, the dentist, didn't like the fact that I told "MY" child she would have to have a few little shots in her mouth. We'll...too bad for them...they are my kids and I will tell them what I want, when I want, and I don't sugar coat stuff. NOW, I also don't make it all drama either. (Okay, I'll back off the subject....sorry for the rant)
Thursday was MRI day. She was better for this, but that is because Dr. B (anesthesiologist) is so awesome with those kids!!!
That after noon, Dr. Boop (n-surgeon) told us the MRI looked good. Looks like there is no damage or injury from the surgery. Just some pooling of brain fluid on the top part of the brain. No concern, though, should be absorbed. The infection on her neck is superficial and hopefully should be good to go within a week. Can't really radiate that area if it's still, well, puss filled. Sorry for those with weak constitutions!
Did see Dr. Merchant before we left the hospital that night. (He was working late, and actually had his phone out dialing my number as I walked around the corner of the cafeteria.) He confirmed the MRI results and said that they would call me this week. He just had to finish his part that night for her to start radiation on the 21st.
Sooooo......Em, Ivee and I will drive up on the 20th and get settled in for the 6 week stretch. Em will drive home the next day (renting a car).
Continue to pray for us. Just so much going on in my mind right now. Trying to focus. Alot to get prepped this week for my term of leave from home and family.  Take care and thanks for being such a great support group for us!!!!

T Shirts

I need to know who might be interested in purchasing a Team Ivee: Fighting Cancer shirt? I wouldn't be selling for profit. It there were any proceeds they would go to Children's Cancer research. Let me know on here or FB. I need to get an idea before I talk to the company that would make them.

Really....Do I need to drive again...

Yeah...so as you can see from my "heading" I'm not too thrilled to be taking another long drive up to Memphis this soon, but so is the life of a St. Jude Cancer patient's mom. You know, I was so excited when last year we hit the only going every 6 months marker for check ups. It doesn't feel like you just got home to have to turn around and drive right back up. But driving up 4 times in less than two months...now that is al ot of driving. Makes those every 12 weeks visits not so bad. They will fly you up there, which is faster, but with all of Ivee's medical equipment and her constant head congestion, we just aren't ready to try flying yet. I wouldn't fly right now anyhow, not so soon after resection and the infection on the lower half of her suture. Which, by the way, it is looking better...finally.
I believe we are all coming to grips with mom and Ivee leaving soon. I keep running through my head what all I need to show and tell Emmett. He doesn't know much of our daily routine, so it will be interesting and probably a little trying for him and the kids to adapt to one another. They will be fine, though. Things just won't be where I normally put them, and I will be searching for stuff when I move back home.
Ivee will miss them all. She already ask everyday weekday where they all are. She knows they are at work and school, but she enjoys when they come home. She is missing going to school as well. Hopefully we can make some of the last weeks of school in May.
I've been trying to decide what all I need to take with me when we move up this time. From previous experience, I recall coming home with a lot more than we took with us. We were lucky that all of our stuff fit in the van that time. I packed it just so that I could get the 3 kids in the car. It was interesting. The weather in Memphis should be much more pleasant to live in than last time. We are looking at Spring weather instead of July/August weather, which was in a word...miserably-hot!!! I thought LA was hot, but at least we have a breeze here. It was a beat-down-on-you-no-relief-in-the-shade heat that summer of '07.
We do leave this Tuesday for Radiation Mapping and MRI scans. Hopefully will be home Thursday. We'll then have another week home before going up for the radiation dosing. Ivee should be well enough to go to church and other places by this next weekend. We are going to have to find some time to make it to the movies before I go. So many films were released since our hospital stay, and we wanted to see too many of them. It never seems to fail. You don't see anything good at the movies for months, then all of a sudden everything that comes out looks so good!!! We did get to see one movie yesterday. Ivee was feeling great, and our oldest, Brittney who is the best big sister and babysitter in the world, said she was comfortable watching her for a few hours. She is wonderful with Ivee, Ivee adores her, and the medical stuff doesn't scare her in the least. I showed her how to use the feeding pump one time and she has it down! The kids are wanting to see a new movie that came out as well, but Ivee won't be up for watching it. Guess we'll have to find another babysitter for a night so we can take the oldest two out.
Well, I suppose that is all the news for now. Pray for safe travels, and easy procedures this week. God bless!!!!

Today I am feeling the weight of what is to come. Ivee is a fighter, but putting her body through another round of radiation seems just so unfair. She did amazingly well during the treatments (especially in comparison to chemotherapy), but radiation is just like poisoning the body as well. You just don't poison the entire body. Her little head is already so full of scar tissue thanks to multiple surgeries and 1st time radiation. Here we are, once again, having to damage her brain, tissue, veins, brain stem, all because of this disease of cancer. She already has so much she has overcome, but still has so much to still overcome. God I am asking that your protect my babies head, brain, veins, tissue and brain stem from the devastating effects of this treatment. That you restore her body to health, and that you rid her once and for all of this disease! I Jesus Name!! 
....Jesus told them. "I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, 'Move from here to there,' and it would move. Nothing would be impossible." (Matthew 17:20

News about the News in 5

1. Ivee is doing well. She has crawled today, played with my friend Cathy while I went to the grocery store, has begun to talk a little louder and a whole lot more, and she used her walker tonight. She just came walking down the hallway to the kitchen, surprising and scaring her mother all at the same time. 

2. Her neck "wound" (which I will not share the gross details of) is beginning to look better. Still redish in the skin around the suture and "other stuff" but it is not getting worse. We will continue to clean it as we have been and let it air dry. 

3. I heard from Make-A-Wish today. We have only been trying to get together on this interview since the end of December, and YES it is March. We were all finally able to meet next Thursday, March 10th...UNTIL....

4. Christy, Dr. Merchant's nurse from St. Jude called. Dr. M wants us back up there next week. Sooo....once again, I can't meet with Make-a-wish which means I can never make this kids wish happen!!!! (Done Venting)

5. This means that next Tuesday I will once again leave for Memphis. We will do her radiation mapping/planing scan on Wednesday and her MRI on Thursday, then come home. He will give us a week at home, and then Ivee and I will be moving up the weekend of the 20th, I assume (date wise). This means that she and I will be in Memphis during the kids Spring Break and Easter. Guess their coming to see momma and Ivee for that week. This would have Ivee and I moving home the first part of May. 

WHERE HAVE THE FIRST 2 MONTHS OF 2011 GONE??!!?!?!?! Seriously, It's March? I guess time flies when your world goes into a "loopty-loo" again! Now, if only the time in Memphis will go that fast. At least I know what to expect this time, and I am looking forward to being able to minister to families who may be going through this for the first time. I'm actually a PRO at this now....how sad : (  

So, as you continue to pray, and thank you for your continued prayers and just your thoughts of us throughout the day....Pray that we can finally meet with Make-a-wish and get that rolling for Ivee. Pray for our trips to Memphis and our time apart from family. Pray for us financially. BUT our BIGGEST prayer....PRAY FOR NO SIDE EFFECTS FROM A SECOND DOSE OF RADIATION!!!! This is a huge consequence of 2nd time dosing. 

God bless you all and thanks for putting up with me. 

First day home...

Ivee has had a pretty good day here at home. She is still pretty congested, but her cough continues to get a little stronger day by day. She has tried to talk more today, but her voice is still very weak. She has played Candy Land with momma and brother, Ethan. She has watched TV and she slept in until 9:00 a.m. this morning. Emmett said she didn't move all night. She was still in the same position she went to sleep in last night. I have worked with her on doing some crawling, standing and push-ups today. Home health brought her feeding pump and suction machine. The suction machine doesn't "suck" very well though. I might have to call them about that. It worked well while the guy was here but the moment he left I couldn't get the machine to give me much power.
Now we wait at home, healing and getting stronger, and await a phone call from St. Jude. Not sure when they will want us to move up. Ethan didn't realized Ivee and I would be moving. I think that perhaps we had forgotten to mention it to him. Just so much going on. He wants to go with us. When I asked why he said, "I won't have to deal with the kids on the bus and I can make sure Ivee stays safe." I think it is more the getting out of school part than the keeping Ivee safe part. That, and I do believe he will miss us. He already wants to know when they will come visit. This will just be another one of those times in our lives where we will all just have to try hard, learn to live without each other, and remember why family is so important. It's hard on everyone when life is not the same as when momma's home, laundry's done, dishes are cleaned, mom reminds you to feed the animals, mom takes care of the doctor's appointments, homework and all that stuff. Now daddy will have to be there at night to make sure everyone's fed, does schoolwork, and goes to buy groceries. BUT we will all make it. Just another bump in the very bumpy road we've been on...or maybe it's just a pot hole!!!
I'll keep everyone informed when I know more about Memphis, and I'll update on Ivee's progress.

From Home...

Can't say much, baby's waiting on me to play with her. Home, healing and still struggling with coughing, talking and breathing. Keep praying. 

Day 10 at Le Bonheur

Yesterday, Ivee finally got out of her room. This lifted her spirits SOOOO much! She finally began to communicate with us again, and there was exchanging of hugs and sugar!!! We went to the cafeteria and gift shop, where she got a black doggie and a "Melissa and Doug" dress-up-doll set. (Melissa and Doug is a great company that makes wonderful toys. They are the best PT and OT toys you can find!)
So, she and mommy played dolls while daddy went to minister to a family that's 4 year old baby girl was in surgery for multiple tumors to be removed from her brain and spine. (She, the little girl, is doing tremendously well, and only a day after resection is getting out of ICU, talking and moving. What a blessing) We know what it is like to be flung into this new world of tumors and cancer. We have meet a few families here dealing with tumors and seizures, and between us and our friends situations, I hope we've given some hope and encouragement to these families just walking into this "new" life of theirs.
Ivee has been blowing bubbles to strengthen her lungs (which she loves) as well as getting albuterol and Chest PT treatments. She looks better, but she has very thick secretions. They are very difficult for her to cough up. Her vocal chord is still very tired. She still can't talk above a very, very soft whisper. We, Em and I, are trying to do all we can to get them out. We are using saline up the nose, and suctioning the mouth. We let respiratory use a deep suction up the nose and down the throat today just to get some out. You can here the rattle in her throat everytime she breaths. We've been able to take her off the oxygen for a few hours here and there, and if she had less secretions and a strong vocal chord and cough, we wouldn't even be here!!!
As for post-op side effects. Em and I have noticed some right face/eye drooping, but anyone else who didn't know her wouldn't notice. Dr. Boop has assured us that the nerve is working, it just may take a while for it to fully heal. She has a quivering in her lower lip/chin. It looks like nerve bruising, and hopefully this will heal as well. She drools constantly, and I'm not sure she can feel it or she would wipe it away herself.
She is amazing me with the way she is doing, though. She got out with her walker yesterday for PT and walked about 20 to 25 feet down the hallway. She moves her head without any hesitation. She wants to help do things. They come in to take her blood pressure and temp and she tells them where to put it and lifts her arm for them immediately. We are praying that the depression is over, and we think that it possibly is. The leaving the room and getting around has just made this more bearable...for all of us.
I believe they will release her on Monday and that we will possibly go home with Oxygen, a feeding pump, and possibly a suction machine. Nothing new for us, it's just been 4 years since we had to suction at home and use a feeding pump.
On a last note, she had seeping on the bottom of her suture, they keep it clean and put her on a small antibiotic for it. No concern that it will cause infection to the brain and interfere with the shunt.
So, if you are still praying, and I know many of you are...to be specific:
#1. Pray that the congestion GOES AWAY!!!! Then we can go off the oxygen and not have to take it home.
#2. Pray for the ticks and drooping to heal (nerves)
#3. Pray that perhaps we can go home tomorrow, and that our car ride home with be uneventful.

Well, we had lowered her oxygen a good bit, but then we just thought she was getting tired because her stats began to drop again. So, we had to up the oxygen again. We didn't have to go all the way back up, but we did have to go up more than we would have liked too. We are now doing albuterol treatments, and continuing with chest PT. We put a pressurized mask on her and make her work to breathe out. This helps to "inflate" her right lung. She does really well with the treatment, but it is really hard work. 

She is now IV free, which is good, but she is in such a slump it wasn't that big a deal to her. When the nose vent comes off, and she can get out in a wagon, stroller, or anything, she will be in a better place... we hope. I believe we will be going home with a feeding pump, and if it comes down to it, we may be going home on oxygen. Just don't know at this point what it may come down to. 

We have tried all we can in the room to raise her spirits, but there just doesn't seem to be anything. I did manage last night and this morning to get her to "dance" a little in her bed. It consisted of moving her arms and head. Maybe I can try again and see what happens. She is moving her neck really well and very nicely. 

Someone from Habitat for Hope is bringing us a meal tonight. He said he knows a good country cooking place, so I pray it is GOOD stuff!!! 

She is snuggly next to daddy right now watching TV. Praying she gets a good nights rest and that the breathing treatments continue to move us forward...quickly!

Some pics from the last few days

Here she is the day after surgery

This is the white board in her ICU room. Momma and Brittney decorated Ivee style. 

Today she got a bath and dressed like the Princess that she is. 

We just took her hair down for bedtime. It was very Tim Burton!!!

A Slightly Better Outlook

Well, she is talking to us this morning. Last night she wouldn't look at us, talk to us, answer our questions or even let us touch her. She would just lay there staring into space. Had us worried for so many reasons. This morning she let me lay with her and put her feet on me. (She loves to put her feet on her me and her sister) She still isn't herself, but she is at least responsive. I brought her Cinderella dress, so I told her after a bath, mommy will dress her up like the princess that she is!

They did a chest x ray last night. No fluid, but the right lung is showing hazziness, which means that it is a little collapsed in the lower part. We are doing a pressure treatment that inflates the lung and makes it work harder. Her stats (O2) were good last night. They never got below 92. So the treatment from last night helped. She has a strong cough today, but she is still very junky. We will begin the lower the pressure on the O2 again today. She hasn't had a bowel movement since last Thursday, so I have asked for a softener for two days. Actually going to get it today (even if I have to go find it) and help her out with the constipation, which is quite common for Ivee after sedation. It is very difficult for her to get going again. She is still on a steroid for inflammation at this time and zantac to counter act the side effects of the steroid. She is only puffy/swollen in her face. But for those who know her, you know she has fat cheeks anyway.

I'll keep you updated as the day progresses.

In a room...but not all is well...

Yeah...so we're in a room and we're pretty sure this kid is pissed off at us. There are no nice words for it. She just get's in a hospital funk, and you can't do much to get her out of it. About an hour ago, while my back was turned for a moment, she grabbed all the chords and just started pulling them. I turned around and they were all on her, and she had pulled the oxygen from her nose, taking the chords in her hands and flinging them about. Just going crazy. I can't blame her. It was her way of just releasing some tension!! We still can't lower her oxygen right now. Her right lung is not working at full capacity. We will have to do Chest PT tonight. That is where they beat on her chest or back to help the lung to work, and it helps to loosen secretions. They won't do this at night, but 3 times a day. Her voice is still not truly back. She is coughing a little stronger. I don't think we will be going home anytime soon. Em will be staying with us instead of going back to work. We are both concerned for her mental and phsical well being. She doesn't quite say or do the things she did before, so we are hoping that it is just the swelling on her brain and the fact that she is just so tired. 

They will probably take a chest xray tonight to confirm her lung status. She tested negative for flu and rsv. 

On another note all together. Some family and friends came by today. My Uncle Paul and Aunt Cindy surprised us with a drive thru visit. Our friend, Mike Burger, was in town for business and treated us to dinner. A new Memphis Friend, Mark Horrocks, brought us CORKYS!!!! for lunch. He has a non-profit housing and charity here to help families just like ours during this time of need. He gave us some ideas for ministry to take home. Em and I have some ideas to think over, and some things that others can assist with. 

So, we are tired, she wants to come home, but she has to get better. Please pray that we can get her lungs working. We don't want to go back to ICU. Pray that she finds her happy place and that she will realize that her mommy and daddy do love her. We appreciate you guys lifting us up in prayer. 

Morning 5 at Le Bonheur and all is going better...

Will still be in ICU for the day (at least) O2 is getting better but still far off from being allowed to go to the floor. We have begun to wean her from the oxygen feed. Is was at 60% and now she's on 40%. Soon we'll begin to lower the flow (pressure) into her nose. We began to slowly feed her yesterday a few mls an hour. She is up to almost 2 ounces an hour on the pediasure, so her strength should continue to increase.

She is beginning to speak just slightly, not quite a wisper. She's keeps saying, I want to go! Don't we all. Em and I both held her for a long time yesterday. She has been sleeping really well. Doesn't need as much suctioning as before. She is trying to sit up in bed on her own, but too weak. She is moving her head really well!

On the "IVee" side of things... She fake yawned with her hand last night to say she's tired, and this morning she told me to get out of her way cause I was blocking the tv. The night nurse said she kept blowing her kisses out the window last night. She told me to lay down in the crib with her this morning (thank goodness I can fit in there with her and that she didn't ask daddy). She wants to draw, but can't hold the pen well. She is becoming the independent Ivee we all know and love, and neurologically she is doing great!!!!

Thank you to all of our friends for your continued support. We love you guys and love hearing from you!!

*Many have asked to be tagged in a note to make sure other friends that aren't my friends see it, and then others of you just wanted to be updated. If I remember I will continue to tag you! ;)

After surgery, looking bright...

Around 10 last night, they extibated her. She is doing well, but is struggling to breathe due to the very thick secretions. She is on a pressurized oxygen tube, and 60% oxygen. We have to suction her ever so often. She can't speak, yet, can hear her make some sounds, but mainly when crying. I have learned to read her lips to try to understand what she wants. She asked for Brittney, big sister, often last night and this morning. So, she was very pleased when she came in this morning. She's asked to draw, but can't hold the pen. She just puts it i her hand and goes to sleep. She tries to sit up on her own. She just told us a moment ago she wants to go swimming. She mouthed it, but made the arm motions like she was doing a stroke in the water. 
Dr. Boop wants to keep her over night again in the ICU. This, 48 hours, is the time when the swelling of the brain is at it worst. She needs to be more stable in breathing, so in the ICU we will stay another night. We will see how it goes. MRI after-scan was clear with no signs of tumor left behind. He was concerned that her vision, right side of face, and hearing may be affected, but there have been no visible signs of deficit. Her eyes are straight and her face seems proportional.  
I don't believe we'll be going home when the nurse orginally anticipated (perhaps she didn't know the extent of the procedure.) Hopefully we'll  go home by Wednesday, cause dad has to go to work at the end of the week. 
Continue prayers, and thank you for all of your words of encouragement and support. 
love,
The Foley's 

Surgery is over and she is doing well.

She is finally rested, and sleeping in ICU. Dr. Boop believes he got it all. He said it was on the nerve that controls the right eye, and underneath the nerves that control right side facial movement and hearing. So these things might be affected. She was suppose to stay sedated, but then Tracy, the NP, came by the room and said that  Dr. Boop called from the ICU saying, "He just called me, and is very pleased. She is in the bed wide awake looking around." We thought she was suppose to be sedated. Well, she was. They couldn't get the dose to knock her back out. You could tell she was ANGRY! Wanted mommy and daddy to take her out of this joint!!! The good news, her right eye was straight and NOT turned in!!!! They have had a hard time keeping her sedated. They had a horrible time the last hour keeping her sedated. I stayed back there trying to calm her down. She has a huge tolerance for these meds. Finally had to give her a dose that would've knocked momma out for 3 days. The MRI is scheduled for 7:30 a.m. in the morning and if all is well (no signs of tumor left behind) they will take out the breathing tube and start getting her aware and hopefully pain free. And hopefully, she will go back the floor. Daddy is going to stay with her tonight in the ICU. He doesn't want to leave her alone. I am going to go with my dad and Brittney to get something that is not hospital food soon. I'm going to sleep at the Grizzly house tonight to actually get some rest. I'll be in the room tomorrow night. 

We should know by tomorrow night if we are looking at any real complications, but so far the fighting and eye are a Great sign!!!!

In the hospital...

We are settling in here on the 7th floor of Le Bonheur Hospital. The MRI didn't happen today. They are going to do it in the morning right before the surgery. Dr. Boop, Surgeon, just came in. We had a good talk. He said he is really going to take his time tomorrow, and that he wants to get ALL of it. The plan is to keep her sedated and intubated afterwards for a little while in ICU.After that, we'll wake her up and see if we are dealing with any side effects from the surgery. (ie. stroke, paralisis, facial weakness and the like). Then on Saturday we'll have another MRI to make sure he got it all! If not, he would go back in, because with her cancer, you must get it all to get the best possible outcome. Keep on praying and thank you for being there for us!!!
 

On the road again...

I could definitely wait to get on the road again!!!
Praying for safe travels, good visits, great mapping scans, and then a problem free, get it all, tumor resection on Friday!!! My God is greater, my God is stronger, my God is higher than any other. My God is healer, awesome in power!!!

Ivee was "lapping" it up in the front of the camera

Click here for Ivee's News Story

Ivee ate up the camera and water last night at her swim at the local Wellness Center. Thanks Pat, JJ, Margo, and Romie for making this happen. It was a great night, and she had a WONDERFUL swim.
On a side note, mom has realized just how southern my accent has become!

Today's the Day...the Sun is shining...the pool is clean....

I finally get to keep my promise to Ivee and take her swimming tonight. I has turned into something bigger than I expected with reporters, a private time as a family, food and more. I just wanted to keep a promise to her, but the more you can spread the word about childhood cancer and the affect it has on these children's lives...the better!!!! More media means more donations for research, I pray!!!

Yesterday was a great day! My sister, Sonia, and brother-in-law,Chris, welcomed my nephew Nathan Tyler Baughman into this world. My sister is a champ! No drugs or epidural, and the little man was trying to come out head and arm together! She was awesome and Chris was a GREAT coach for her!! Nathan was 7 lbs 7 ounces and 20 inches long. You just forget how tiny these things are!!!! It was so nice to get our minds on this happy time and forget about Ivee's upcoming surgery for the day! Can't  wait to see him Sunday, bathed and clean!

Tall doctor with an accent said WHAT?

I am a little more than frustrated. Some doctors just grate on my nerves. Went to the GI doctor, after having talked to the surgeon about her stomach last week. He said he would Email the GI and they would come up with a plan to treat this medically. When the GI doctor came in, he had to read all over the notes trying to find out what was going on. I'm thinking to myself, "Shouldn't you have read over this before you came in the room?" Then as he begins to talk, I have to fill in the blanks with what the surgeon said. Then I have to "remind" him of what we discussed last visit. He then preceeds to draw diagrams of stuff, not really knowing how to explain it. I already knew what he was talking about, so we could've skipped this part. Then he tells me of a medicine we can try for her stomach, that is a antihistamine, but blocks the sensitivity of the fundus (a part of the stomach). Or maybe we could try giving her feeds at night, which is something he didn't want to do last time. (That is when I asked if it would be better for her). Sooo...now I get to decide what we should do. Really?!?!! Me? I have a medical degree now? Well, by now I probably could ace certain parts of their testing!!! So, I don't really know what to do. I'm going to think about it. Since brain surgery is coming in less than two weeks, I'm going to try to not fret about it. It can just be so frustrating. You like one doctor (surgeon) and then think that when you get in to the GI doctor something, some kind of game plan would be ready to go. I can't stand an "unprepared" doctor. Yeah, I know your busy, but the Contrast Dye was done more than 2 weeks ago. You can't take 5 minutes to read a report and make a decision the week before you see the patient. And his HANDWRITING!!!! I won't even go there. I know it may be rude, because he is writing notes for me to take home, but as he talks I take my own notes. I just can't read that chicken scratch.
That is it with the venting. I just feel the tension building in my neck. I've got enough anxiety right now, that this visit just didn't help. I am trying to not let to much of my stress out, but sometimes I think I can just imagine my head opening up and my brain screaming. I can feel it welling up behind my forehead.
Sorry...I'm done.
Keep praying and bless you all.
Hope m/o Ivee the blessed.  

Surgery details...

Surgery is scheduled for Friday, February 18th at Le Bonheur hospital in Memphis, under the skillful hands of Dr. Fredrick Boop. I have only heard good things about him, and he has performed many, many surgeries on many tumors, including Ivee's. He knows the importance of getting every bit of it out of her head.
I will be heading up early to get her preadmitted on Thursday so that they can make a 3D image of her head doing a stealth craniotomy. This is the best way for the doctor to decide the best course of action during the procedure.
We are asking for prayers for discernment, steady hands, a watchful eye, and fatigue for the medical team. We are already thanking God for a smaller mass to deal with this time, and praying for NO side effects from the procedure. The Great and Ultimate Physician can do all things.  

*On a side note, God has provided a pool for us to finally take Ivee swimming in. She only waited 3 months for her mom to get her act together. I don't feel so guilty now. Thank you Pat, JJ and those in Bay Minette and the wellness center that are making this happen.  

Hernia update

We meet the new Pediatric Surgeon for USA, Dr. Daniel Beals, and must say I liked him. He reviewed Ivee's scans from her contrast dye GI series. He has concluded that she doesn't have a typical hernia, but one where the top portion of the fundoplication has entered the chest cavity. So, in other words, we are not looking at anything threatening at this time. However, he did note that she is dealing with gastric dismotility/gastroparesis. This is where the stomach doesn't want to "move" it's contents. So we may be looking at 2 instances. 1. The heaving may be caused from the hernia. He wants to try approaching the problem medically at first, perhaps putting her on a medicine to promote movement in the stomach. OR 2. The hernia may have been caused by the heaving. Which could still be the gastroparesis, or we are looking at something neurological.
So, in less words...No hernia surgery for now, going to treat medically and just worry about the reoccurance and radiation for now. We will see the GI doctor on Tuesday, who should have talked to surgeon all about this by then.
Thanks for the prayers!!!

Separation and Anxiety

Yeah, so I have to admit. I have separation anxiety from her already. No, I'm not worried that something will happen to her. I'm not worried that she'll get sick or have headaches. I'm worried that I'll miss her doing something cute, funny and whitty, and that I didn't get it on film!
But, I'm going to suck it up and let her go to school tomorrow. She loves school and soon she will be missing too much of it.
Em and I are still learning to handle the news. I do okay most of the time, especially when I am with my friends and family. It's those "quiet" moments that my mind begins to get away from where it should be focused. Luckily, I have some of the best friends in the world. They give up their time to go to breakfast with me, go shoe shopping and sit in the car while Ivee watches an hours worth of the most annoying musical in the world playing in the back ground. Thanks Ange and Cathy for keeping me occupied today.
So, trying to get back to the norm around here. It isn't too hard to remember where you are when the 14 and 11 year old are still constantly bickering. Luckily, they DO go to school everyday.
Unluckily for me, laundry, though clean, is piled up on the couch, and suitcases still need to be emptied. So, that will be my morning tomorrow.
Tuesday, Ivee will be seeing her new pediatrician. This woman is going to "love" us when she's done with my Ivee life history lesson for her. If she never had a child with an extensive life history, she will now!!!
Wednesday we visit the general surgeon to discuss the hernia. In the words I use so often, when talking of doctors who we've never seen....He won't like me!!! Most doctors don't....and I'm okay with that. They just aren't used to a parent who understands their big words and probably could teach them a few new ones. (some of you know what I mean!)
So, that's my shout out for now. Keep praying!!!
Love, Hope m/o Ivee the blessed.

What is coming.....

I will try to make all these details short and to the point as to not bore you or keep you from more important things.
Ivee has a reoccurance in the same area as her primary tumor. Dr. Merchant was shocked to see it in these scans. It has only been 6 months since the last MRI, so we are not sure if this mass began growing right after the MRI or just recently. After reviewing most of our options, Em and I have come to the decision to go for total resection of the new growth followed by radiation. If a 100% total resection cannot be accomplished, we will discuss other options. There is a new study being "run" right now for trying a chemotherapy for 6 months on a reoccurance, but it is a small study, and Em and I don't want to poison Ivee's body without more evidence and results of side effects. Anyone who has ever had a child go through chemotherapy knows how difficult and horrible it is, and Ivee always seems to get the side effects of drugs.
The history of her cancer shows that a 2nd dose of radiation is the most effective to treat the tumor area.
Her Spine MRI came back clear with no signs of metastatic disease.
We will meet with the surgeon in Mobile on Wednesday to discuss the fundoplication hernia. Unless it is life threatening, we will postpone any surgery to fix that, and probably have it taken care of in Memphis.
Thursday I will discuss surgery dates with the nuerosurgeons assistant and set up the tumor removal date. It will probably be done 2 to 3 weeks from now in Memphis by Dr. Boop, who is way too familiar with this cancer. He says it will not be an easy surgery, but he believes he can get it all. If he does get all the tumor, we will return home for a few weeks of healing. After that time, Ivee and I will move to Memphis to begin radiation treatments.
This is like starting over, except this time is a bit easier. We've been here before, we've made it through this. We're dealing with a smaller tumor, and hopefully none of the side effects of the first.
So, besides the obvious ways to pray for us, pray for Ethan and Britt. That we can make the best decision concerning them, our home and schooling.
As I know more I will keep you updated.
Love, Prayers, and Thanks
Hope m/o Ivee the blessed.

ivees tumor has returned. we are staying for more test.

One small step for man....

Ivee took 3 very small steps by herself last night, and then 2 small steps at school this morning. Mommy and daddy are so excited. Her balance is getting better. Her muscle control and strength is improving. She is so hesitant, but at this rate, she might be able to do a little walking by her birthday?!?! Not going to say it and claim it, but it is looking promising. 

Contrast Dye study

Friday Ivee had a contrast dye GI series done through her g button. When the dye entered the stomach, within 5 seconds you could see it begin to enter the small intestine. In less than a minute, you could see a clear definition of the small intestine. So, in conclusion...she empties EXTREMELY fast. The feeds don't stay in her stomach. The good news is no reflux was visible. The bad news...I don't know. What does the emptying mean for her? I don't know either. This does explain the huge increase in heartrate with her feeds. We don't see the gastro doc again until Feb 8, so will continue doing what we are doing. I'm not sure he'll address this emptying. I am concerned for the future though. What if she does begin to eat by mouth? What does this emptying mean for solid foods that are suppose to be broken down in the stomach? We all know digestion begins in the mouth, but I am unsure of any answers and honestly don't know if the doctor will have any. I'm also a bit concerned that her body is not absorbing the correct amount of nutrition. Many explain her small stature to the chemo, radiation, etc. But it seems that it might be affected. 
Well, that is all I have right now on this subject. Less than a week until scan day! Keep praying. 

GI doctor update

Learned somethings from Ivee's gastroenterologist visit yesterday. Will begin to address her gagging and increased heart rate during feeding times by changing the way and how much we  feed her. Friday we will take her for a contrast dye study through her g button. We want to find out where the feeds go, as in reflux as well, and how quickly that her stomach empties. All issues are do to the nissen fundoplication pyloroplasty she had 4 years ago. For those unfamiliar with the procedures, a nissen fundoplication was done to help keep her from vomiting during chemo. Due to the paralysis of her vocal chord, they were very afraid of her aspirating. She also had reflux at the time, so they did the pyloroplasty to empty the contents of her stomach quicker. This is done by increasing the size of the opening to the small intestine. 
Emmett and I have read stories of people who had nausea problems after getting a fundoplication, so we are wondering if the "backing off" of the amount during feeds is going to assist in this gagging issue. And when I say gagging, it is not like the gagging we may all see in a child who doesn't like there food. It is violent, like a bad stomach virus heaving! 
Thanks for the prayers, and pray for a good and clear scan on Friday. 

Long time...no post

I know I haven't posted in a while. All is going well right here. Ivee sees the gastroenterologist next Tuesday. We'll be checking up on her nissen-funduplocation and her reflux. She should have been watched all these years, but no one sent us to or told us to see one. We have been seeing the ENT, and he was the one who finally asked us who we took her too. Praying that she is okay, and that we can figure out what is going on with the constant gagging.
We'll be going to Memphis for her MRI check up and to have her port removed (if all is well) the last full week of January. Praying that all is clear for the MRI and that surgery goes well.
Had a great Christmas. Will probably post pictures on here, and on Facebook.
Once again, thank you for your prayers and your continued loving on our family!!!!

All DONE!!!!!!!!!!

   Ivee is out of her cast, and a much happier but no less demanding little girl. I will upload some pictures and perhaps some video soon. She's been able to crawl a little bit, but she is weak and unstable. Mommy did a little PT with her this morning. I will get more aggressive with her as the days come.