Just a note of thanks

I just wanted to give a note of thanks to everyone who has given us clothes. Ivee has a good lot now. So...thank you, thank you, thank you. The clothes have come from everywhere.

No News...

I still haven't heard from Dr. Merchant because he is trying to talk to Dr. Sanford (neurosurgeon). But, according to Christi, he doesn't think we need to come back so soon for a scan. Still don't know what all this means, and not worried about it.
Please, be in prayer for the Vang family. They were one of the first families we meet at St. Jude whose daughter, Kayla, was diagnosed and fighting the same cancer Ivee has. Kayla lost her fight with ependymoma (cancer) this past weekend. She was a ray of sunshine everytime you saw her. We were privelged to be a part of her birthday while living at the Ronald McDonald house in Memphis. If I recall, Kayla just turned 10 in July. She is just another reminder of what a blessing our children should be to us everyday of our lives. So, give your babies a hug today and tell them how much you love them.

The News from St. Jude

The MRI results came back stable and clear of tumor! Thank the Lord again!
Added to that though, according to Dr. Merchant's nurse...from the doctors words though, there is post-operative changes to the brain. She didn't say if any of these are of concern. She just told me that Dr. Merchant would take Ivee's MRI to the tumor board on Wednesday and have Dr. Sanford and the other neuro's take a look at it. Then the nurse, Christy, said she would call me back about the next check up. It sort of made me feel like we would be going back up sooner than later. I'm not concerned about this news...for now...cause I don't really know what any of this means, since of course I am not a brain specialist and I don't know exactly what Dr. Merchant meant by the term changes to the brain.
I CAN tell you that Ivee is talking like "crazy" now and she repeats all kinds of things. She is even talking in two or three word sentences. Her balance may not be 100%, but there has been some kinda change (in my eyes) for the better.

Update from Memphis

We are doing fine in Memphis. Allergies, or something, is affecting me and the s, but we are making through. Ivee just got out of her MRI about 30 minutes ago. Hopefully we'll know the prelimanary results this afternoon. We got to eat supper with our friends Zack and Randall who go to seminary here in Memphis. Today after our last appointment, I'm gonna take the s to the zoo. St. Jude kids plus 3 family members can get in for free if the child is wearing her/his hospital braclet. Ivee really enjoys the zoo, and it is nice outside today here. I'll keep everyone posted on what the results are.

Pics promised

This is Ivee post her September 11th brain surgery.

Here she is after the shunt was put in.

At the hospital with Ethan and Britt visiting.

Once we got home, she got busy feeding the baby doll Ms. Savage gave her. Then she made daddy feed the baby.

Busy on the phone.
!

Then....we made Britt put all the hair stuff in our hair.

Finally, we rode a horsy the other day.

So, we are doing fine and are back in school on Tuesdays and Thursdays. MRI day is next Tuesday and we are trusting in the Lord to give us good news again.

Thanks and so on...

Thanks to those who have responded about having clothes. This will help out more than you know.
Well, this will be the kids (and my) last normal week for a while...if you can call it that. We leave next Monday the 3rd for Memphis. Ivee has a scheduled MRI for Tuesday the 4th...election day. So, we are praying for a day of great news...oh, are we praying!!! I had to do an absentee ballot for the first time ever. Who can even understand all those amendments?!
The Christmas production at church is underway. I am in need of assistance in many areas (or should I say I have places where I need people to serve), but the Lord is bringing it all together. I am not stressed...........yet!
That is it from the Foley clan. Thanks for keeping in touch.

Just Putting This Out There

Let me say first, I am not looking for financial donations. Just putting it out there if you have any!
The kids, all three, and myself are going to have to go buy new clothes soon with the fall / winter weather coming. If you have any hand-me downs, we'll take them. I'll put our sizes and the kids ages on here (sometimes age makes a difference in what a child will and won't wear...pre-teen if you know what I mean!) Ivee is 2 years old and in 24 months - 2t. Brittney is 12 years old and a size 10/12 in s. Ethan is almost 9 years old and a size 10/12 in boys, and I am a true 8/10 (not on the small size). Also, if you have it, Emmett is a 36/30 in pants and a size m to large in shirts.
Like I said, I am not looking for financial contributions!!! I mean that. But, if your like me, you may have bags and bags of old clothes, and your trying to find someone who maybe could use them. (Luckily for me, my sister has two s slightly younger than my s, and my friend Vicki gets Ethan's old stuff).
Now I just have the task of see what we all really have and what is really needed.
If you do have some, just email me (or comment with your name and email address/phone...if I don't know how to get a hold of you).
Thanks for keeping in touch!

Marie-Therese Gown GIVEAWAY !!!!!!!

Tammy showed me this dress...it amazing!

Marie-Therese Gown GIVEAWAY !!!!!!!

Getting Better

Two nights ago, I put Ivee back in her own room. She has done well. You can still her making noises in the night, but I haven't really heard any screams. Hopefully the nightmares are subsiding. She returned to pre-school yesterday and did very well! She didn't cry going in, cause her class was in the "Imagination Theatre" room dancing to music. For those who know Ivee, you know she loves to move it to the music!!! So, she didn't cry...she wanted to be a part of the party!
Yesterday, I got Ivee's shoes on her and she kept them on all day until we got home. This is a very big ordeal! Last night I dreamed that she walked. I have yet to have this dream when Emmett and friends have. Maybe it will all come to fruition now!
My wireless internet is down, so I can't post the cute pics I have of her until that is resolved. Thanks for checking in and talk at ya soon!

Update on the Family

We are getting settled back in at home. Ivee still sleeps in our room. She has nightmares every night! We are not sure what we are going to do about her right now. She is extremely clingy, but that is understandable. We just don't know how to make her feel safe, besides praying for God to give the poor baby peace. She doesn't seem to have the nightmares when she sleeps in our bed, but then we get even less sleep. She is not a great bed companion.
I am currently in crunch mode for the Christmas production. The hospital stay has put me way behind! I have decided that many things I will just have to delegate to other people, but there is so much still left to do. Be in prayer for me and the worship team at my church as we prepare for that night. It is on Sunday night December 7th at 6:00 P.M. for those who don't come to our church but would like to come see it. The Lord laid the whole concept of the play in my heart back in the summer, and as I was writing it, it all came pretty easily. So, I know that this is not something that I was pushing myself to come up with, but not to say that it isn't still "pushing" me.
On another note, congrats to my friends Deb and Blayne who are expecting their 2nd baby. I am so excited for them! And to Christy and Brad Benton who are expecting their 3rd...maybe a this time?!
Schooling is going well, and the kids like the new curriculum better. So, that is a positive thing!
Thanks for the prayers, and I promise a better update later, maybe with pics.

Just a quick note

We did get to come home on Wednesday. I have just been too busy to blog...so sorry. Ivee finishes her IV meds tonight. I'll be having a little more time once that is over, but then I need to get back to work and teaching the kids. Life doesn't slow down...it just sometimes takes a detour! Thanks for your prayers, and I will see many of you tomorrow.

The day is coming to and end...

and once again...the location is...THE SAME!
They took samples again, and the med was still in her system. So, they are changing to an different and new antibiotic. That means staying here at least another 24 hours to see how she does on that med, and take more . She has to be on antibiotics until Sunday, marking 21 days. At this rate, I'll never have to take any meds home, cause we'll be here FOR-EV-ER~!
And the day started with me not being able to get any return on Ivee's line, so we had to change out her access line. And then they wanted her labs drawn from her by needle for an exact reading. Couldn't get a vein, so they just stuck her finger and squeezed it out.

On another note, I had all three kids in the room today. That was interesting. Especially when Ethan went into the bathroom to read something in his school work (cause it is quiet in there) and he dropped his mechanical pencil in the toilet, which or course he got out by hand. So dramatic Brittney starts over reacting, cause Ethan is touching stuff...all the while the nurse is trying to prep Ivee for a lab draw from the port line, so Ivee is screaming, and Brittney is still doing some ridiculous..."Ethan is disgusting" dance and song, which is extremely loud and over exaggerated. So, of course I had to scream at her to calm down, just as people are walking by the open door. Hope you enjoy my "run on" story.

So, that is the news from the newly named "Foley" wing of USA C&W. I hope lifetime maximum on insurance change soon, cause Ivee is approaching the million dollar max pretty quickly! We guess that if she continues down this path, by the time she's 5, she will reach it!

'Tis not the day...

why does it allude us?
Her levels for the antibiotic were still too high. The doctors just can't risk kidney/renal failure, and that is what can happen if the dose stays too high.
Ivee is in high spirits, even though they had to stick her this morning. They have removed her bandages, and now I know why her belly hurt so much. The 2 inch scar is in her lower abdomen and it is extremely bruised, so the poor baby was just hurting! She is a trooper though! One tough cookie!
We are stuck at USA, whats new, for at least 24 more hours. Thank God there is a window in the room, or the walls would be closing in.
My older kids are really missing their family, but my mom has taken on the responsibility of helping with them. They are trying to do school, but it is difficult when your teacher is in the hospital. They are holding their own, though. When I get home, I will concentrate my time and focus on them and their studies as much as I can.
In the words of my Natalie...so yeah. That's it.

Will it be tomorrow?

The doctors took Ivee's culture last night and said that her levels of vancomycin (antibiotics) were too high. So, they are adjusting her dosage and times of dosing, and are trying to get her on a 24 hour watch. If tonights labs are still not right, we try again for another 24 hour period. So, I am asking...once again...that you join us in prayer that her levels will be right tonight so we can go home tomorrow.

After Surgery...11?

Post Surgery...loving on dadda and loving being held!

I think it is 11...could be more. She came through fine. She hasn't been out of a bed in 10 days, so as soon as we walked in recovery, she wanted to be held. She wouldn't let us put her down for 4 hours. Finally, after everyone had left, and daddy had to go back to work...I had too. The bathroom was calling. After crying for about 5 minutes the pain meds kicked in. She relaxed and is now sleeping in her crib.
We hopefully will be going home Monday. The doctor of infectious disease here wants her on 21 days of antibiotics (we are on day 11), but he said that we continue/finish that at home. It will have to be done through her port, but I can handle that. One of the medicines, vancomycin, has to be monitored though. If not given in the correct volume and strength it has to issues. 1. If not enough, it won't make it to the brain to treat infection or 2. If too much, it can cause kidney damage. So, it is definitely a science.
She should have a pretty descent recovery, but her neck, head and abdomen are sore from fresh incisions. Em and I are trying to careful with her. At least our home is pretty clean, so that will not be a huge issue when we get there.
The poor baby is 50% bald again. I'm not sure what we are going to do, but I do know I am not making any final discussions on it soon.
A special thanks to the Faith Family Preschool (Bright Beginnings) for all the pictures, banners and food. Also, to all the kids in Extended care for making get well pictures of Ivee. To my brother Dave, Becky and Kids: thanks for the care package. That was one "HUGE" bag of dark M&M's. To the Hillard's and Back's: thanks for the candy and balloon. And thanks to all our family! You are always there for us.
My dad is leaving for Mexico tomorrow (he offered to stay home, but some people in Mexico are in need of homes), so pray for safe travels.
That is the news from USA C&W.

The News...

Dr. Martino has come by and has even consulted with Dr. Sanford. They both decided that a shunt will be needed. Ivee already suffered from hydrocephalus (the swelling of the ventricles) because of her tumor and first surgery. This is one of the reasons she always had the "cyst" (pocket of fluid) on the back of her head. Since she already had this problem, when her head was reopened the pressure decided to find a new way out to remove the fluid. She was doing well with the ventriculostomy, but when we raised the bag yesterday to see if she would absorb the fluid, it then began to leak from around the external catheter. So, her head is not absorbing the CSF. The surgery will be tomorrow morning at 7:30 a.m. It will talk about 1 1/2 hours. She should be able to go straight to the floor instead of ICU. Once she is off antibiotics (Sunday will be the 14 day), then we'll get to go home. We are looking at (probably) Monday or Tuesday. They will have to shave the other side of her head and make two incisions and then an incision near her collar bone. Then the will run the catheter across her stomach to the other side (cause of her g button and scar tissue from the fundiplication. There they will make a final incision.
We were really hoping and praying that she would not need one, but it is just not working out like last time. Could be because it is the 2nd surgery, or cause of the meningitis...just not sure and I guess it really doesn't matter. Please pray as we go through another surgery. Ivee is in a really good mood today, and Dr. Martino is very impressed at how well she has done with this. Em and I are unhappy that she has to undergo another surgery, but what can we do? Nothing. Just pray. Please, keep mommy and daddy in your prayers. Ivee does struggle with being here, but like any other young child, she just goes with the flow. We are the ones that under go the mental and emotional .

One Week down...

Who knows how much longer. Dr. Martino should be back tomorrow, and they will take another sample of her CSF. The fluid is looking more and more clear. Just a slight tinge of yellow now.
We have been able to take the "no-no's" off her arms so she can move them around now. She hasn't tried to pull on any of her tubes or lines. So, you can say she is being a good girl. She is definitely tired of being here and staying in the bed. The movies are getting old! She is getting more sleep now, but it is still very restless. The night nurses do all they can to leave her alone, but they still have to come in at strange hours to give her antibiotics.
Em and I take turns staying at night (and my dad graciously took one night so we could both go home with the kids). The chairs in the ICU are quite uncomfortable, and ours doesn't want to stay down in the recline position unless you push yourself way up on it. Sleep here is not restful for so many reasons.
I was watching a movie tonight in the room, and there was a scene in a church service. The preacher made reference to being in situations that make us weary. It is not a sin to be weary, but it is a sin to give up. Being in a hospital definitely makes you weary, and this morning I was particularly tired. As many know I am leading worship at our church for now. I was rehearsing with the choir and we left to go out to the auditorium. I stopped in my office for just a second to put something on my desk. I just stopped for a moment, I have to tell you ... I just felt completely weary. I just said a quick, "God give me strength, cause I am so tired and I just don't think I can do this." Then I walked out to the stage. When we started the first song, I must admit, I looked at Emily and said, "Okay, let's do this thing." Real spiritual...huh?!
But, as the Lord does so many times, we began to sing, and I could physically feel my spirit being renewed. With every song, he renewed my spirit and gave strength to my body. The Lord is so faithful. I sometimes wish that I could express to the people of our church what the Lord has taught me on this journey for the past 2 years. I could tell them time after time that the Lord was faithful to me. I could tell them how he heard my cries and comforted me when no one else could. I could tell them how when I was a low point he would send someone along or have one of you send me an encouraging comment and it would make all the difference that day.
ALL I can tell you is that my faith has fallen short MANY times! I have cried to him and yelled at him. I have questioned him and myself. There is a song that we have sang for years at church, and it is a beautiful song. But the first time we sang it (about a year after Ivee's brain surgery) the words became real in a way that they never could have before. The lines to the 2nd verse say it all. I'll put them in my words.
When my strength was all but gone and my heart had no song...then God was faithful to me. In all the times that my heart looked away and there were MANY MANY times that I just could not pray...even then God has always ALWAYS been faithful to me. I specifically remember a night in the hospital. I just looked up towards the ceiling and yelled, "God. I am so mad at you!" That may be a hard confession, but it was what was in my heart. And you know what...he was there to say, "Yes, but I still love you!" And after the first few months, I found it hard to pray any longer. I just didn't know what to pray any more, and I frankly was just trying to live and take care of my family. And you know what...God was still there saying, "I know, but I'll help take care of you." He is a FAITHFUL FAITHFUL GOD!
I am still far from what God would have me be, and I may not pray like I need too, or be in the Word like I should all the time...but I love and trust in Him! I believe!
I hope your hearts be encouraged like you have consistently encouraged me! You are such a blessing! God bless you all, and keep on praying!

One Down...

13 to go...


Today they extibated her, so the breathing tube is out. They keep commenting on how stubborn and strong she is. Well, they don't have to tell me, I live with it. But that is what gets her through. The Lord knew that Ivee would have to be a tough one! She has to be! She is currently resting, as I am showing you below. Once she wakes up, I am sure she will want to be held, but the ventriculoscopy has to stay at ear level, so we can't just pick her up and down as she pleases. That should be a fun battle.

If anything new arises, I will keep you informed. Thanks again for your prayers, love and support. If anyone wants to visit, we welcome you (as long as you are well). Em is working overtime alot this week, and I am usually in her room. We ARE in ICU, so only one person at a time can come in (if I am in the room/2 people in the room at a time is the limit for ICU). Em and I will be eating out this whole time, but we welcome homemade snacks...hint, hint...but South Beach Diet approved :)

Oh, and dark choclate M&M's are my favorite/weakness! :)

Hospitalization

Some are aware, but Ivee is in PICU at USA Children's and Women's hospital. She began leaking again, a steady stream, from the wound again yesterday. A low grade fever had set in Friday and was persistent even with Augmenton (antibiotic) and Tylenol. We returned to the ER Sunday around 2:00 p.m. The same doctor from Thursday was attending, so she was quite aware that this was a greater leak then before. Dr. Martino, Ivee's original neurosurgeon was contacted. He was concerned about infection and need for a shunt, so he ordered a CT scan. *On a funny note: The ER doctor knew of Ivee's anxiety from Thursday, so she ordered that she be given Adavant (an anti anxiety medicine). I was not here for the CT, but Em says they left her awake. This concerned him, but once they cocooned her onto the board, Em says she lay there fine. He began to sing to her, and as they were moving her into the scanner she said, "Whee." I don't know how good Adavant is, but hey...I think I could use some of that! That was just too funny. Sorry I missed it.
Anyway, Dr. Martino confirmed what he feared, it was meningitis. For those who don't know, in Ivee's case it is swelling and inflammation of the ventricles (ventricles are what carry and circulate brain fluid). (*Note: I am unofficially a medical advisor now for anyone who's child may have some sort of brain problem. The great thing is the doctors can use the big words and initials, and I actually know what they are talking about)
Dr. Martino advised us that she would need immediate attention with antibiotics to fight the infection, which we believe she contracted at surgery but the signs were not evident until leakage occurred do to pressure build up. He also told us that surgery would be necessary to resolve the pressure issue. With Ivee's 1st surgery, Dr. Martino did a ventriculoscopy which is putting a pressure release valve on top of her head....yes, they had to shave alot of hair off the top of her head. This would stop the headaches and the leaking out of the wound site allowing it to heal.
So, she has been lightly sedated since surgery last night and will probably remain that way until tomorrow. She has interacted with me wanting me to pick her up, which I can't, waving bye to people, and pointing at the door. She has also shimmy danced to music, so she is slightly aware, but sleeps most of the time.
She will remain in PICU for 10 to 14 days. During that time we will fight the infection with antibiotics. Then, if the suture site looks good, we will clamp the valve and see how the pressure in her head is. If it stays low, no shunt will be needed, but if it becomes greater and stays there, we will be looking at another surgery to put the shunt in. This stinks, because we tried so hard to keep her from having to have one with the 1st surgery.I hope all this makes sense. I welcome questions and comments.
Pray for rest for Ivee and us at the time. There really isn't a place to "sleep" in the ICU, but once she is "aware" we won't want to leave her alone and scared. (Good thing my dad is a chiropractor, so he can knock all the kinks out of my back!) Pray that Brittney and Ethan will be taken care of...not necessarily physically, but emotionally and to have some normalcy. It took a long time to feel normal again after that 1st year. Gratefully and hopefully it will only be a few weeks this time.
I'll keep updating as progress is made.

Leakage...

We were in the ER with Ivee last night. About lunch time, her head starting leaking CSF. This throws off the pressure in the head and can cause quite a headache. Every time she threw a temper tantrum she would leak more and more. We dermabond it (super glue) and covered it back up. Today she has been worse than yesterday, as far as attitude goes. She feels horrible. She has a slight fever, congestion and a green nose. Probably caught something from the ER yesterday! We just can seem to get ahead on this stuff. We didn't freak out about the leaking fluid cause this happened with her first surgery, but to have to take her to the ER to fix it and then catch a contagion from another kid just stinks!!!
Life just has sooo much going on, and I feel guilty for it all. You just can't be three places at once. A friend of our passed away Thursday, and her husband asked Em and I to sing. Looks like Em will have to do it without me, cause someones gotta take care of Ivee. My dad might be able too, but with the way she has acted the last 2 days, she probably will want nothing to do with him.
I'm just tired and running on and on. She isn't sleeping well. She has pretty much slept all day, but you have to hold her. Then she screams in the middle of being restless...and I mean screams...not crying! I hope I made sense, cause I'm not taking the time to proof read.
Well, just pray for us and mostly for her.