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!!!