Updates

I have alot of pics to update of the summer, but here are a few from recently.

Here are Brittney and Ivee outside the Chili's Care Center at St. Jude. Chili's raised millions of dollars to build this center. It was a much needed facility. Radiation Oncology and all radiological areas (MRI, CT, Xray, Radiation therapies) used to work out of one small area. It was very hard to manuver around all the patients and parents (you felt like you were on top of one another) This building allowed for a roomier and more appropriate facility to take care of the children's needs.

Here are mommy and Ivee at our annual visit to see the polar bears at the zoo (where all St. Jude patients and 4 family members can get in for free).

Brittney celebrated her "13" birthday in Jax while visiting family. Her aunts took her to get the "works" on that weekend. Nails, face, and hair. She is growing up!

Emmett and I have been working on the backyard for sometime. Finally we have some results. Still not done, but my husband has done a great job (with the wives help). The turtles are quit happy to be out of an aquarium after about 8 + years. Hard to believe I could once hold them in the palm of my hand, and now their shell is almost 2x the size of my hand!

More pics to come (of Ivee's birthday too). Just not enough time to sit on the pc all day. I need to be getting lunch and doing housework now!

Ivee's scan was clear again. Praise Jesus. She does have left side weakness and we have fitted her for new braces for her feet. I am concerned that she isn't getting the therapy she really needs, so when I get home I am going to have to find a way to push the insurance company to get more visits for therapy. The neurologist here believes that she will eventually walk on her own, but it will just take time. The same with eating. Their was no one in the ENT clinic this week, so I will have to talk to Ivee's pediatrician when we get home to try to get her scoped to check the vocal chord. We are tired and ready to come home. Tomorrow is our final day, but we will spend the night in Meridian and head home Friday. Thanks for the prayers, and keep on.

Day one in Memphis is coming to a close. Ivee is doing well, but sedation always makes her cranky. Hopefully she will sleep well tonight. I don't know if mommy will be her bed partner tonight or not. I think it is time for Brittney to have a turn.
We won't know the MRI results until Wednesday when I meet with the RO. Her eye exam was good today. No problems and the doctor is pleased with how her eye has "fixed" itself after the surgery to remove the scar tissue. More test and appointments the next three days. I'll keep posting.

My work

Here are some of the pieces I have created. The videos on this sight I created as well (from and for personal reasons). I have also created picture movies for special occasions (weddings, funerals, parties). Just a sample of some pics.

Here is a logo I created for a school.

This was the front of a Christmas Program.

This was for an armed forces holiday.

This was for a sign on the church premises.


This was for a web topper.

This was for a singles ministry shirt and more.

An Update...Finally

We are headed to St. Jude this weekend. Ivee has appointments all next week, MRI on Monday. We are once again praying for a clear scan, on this her 2nd year checkup. This time is always a little nerve racking for me and Em. You just dread the results, not knowing. BUT, God is in control. He is always working out his plan. And even though we don't know or always comprehend it we know that He works good for those who love Him and are called according to his purpose.
I am now home with the kids. Budgeting without my income is "tight" but we are doing okay. I haven't cooked this much in...well, ever! I am looking for work to do from home though. I will be posting some of my "portfolio" to get out there on my other website (the one I truly neglected). So if you know of anyone or any company that needs a design made, a PowerPoint presentation designed, movie of pictures or video made for presents, picture fixed or more, let them know that I am cheap! It would just help to have the extra work. I have years of design experience from my previous job and really enjoy working on posters, pictures, and logos. So, they can contact me anytime. Just give them this web link, and once I get some portfolio pics up, they can see some of my past work. Thanks, and keep on praying! God bless.

Time is running out....

My last Sunday at Faith Family (my church) is this Sunday. I am sad but excited! God has something in store for us, and we are stepping out in faith to see what it is. Many have asked where we are going. The answer: DON'T KNOW!! When in the last year have we had a chance to go anywhere else to visit? I've been leading worship the whole time. Em and I have prayed for a long time and this has not been a hasty decision. Much prayer has gone into this. So, we can now step out on faith knowing that God has a plan. We are not sure if he will lead us to a place where my skills can be used. I do love leading worship, but I can worship from my home or car. I don't mind taking a sabbatical for a little while though. It's been a very busy time for us these past years, and a rest would be greatly appreciated. (Not that you can really rest at home cleaning with 3 kids!)
We return to St. Jude at the end of June/First of July. Ivee is doing well. She wants to walk (of course with assistance) all the time. She ask often, and she is quite addicted to "i-cream" as she so affectionately calls it. Brittney and Ethan are finishing up school this week. They are doing well. Britt will be 13 this year. I will be the mom of a teenager...ahhhhh!
In September, Em and I will take a much needed and anticipated vacation...cruising to Mexico. (Via no hurricanes) The hard part of this will be leaving Ivee for 5 days with the grandparents. (I think Mommy will handle it fine, I'm worried about the daddy!)
My friend Deborah had her baby...finally. Congrats to her and Blayne. He is beauiful, and hopefully this one will look a little like Deb....maybe?!!!
My friend Matt and my brother-in-law Chris are still on deployment so I continue to pray for them. Say a prayer for my sis Sonia and my friend Ange and all the kids during this time when the dads are away.
Sonia had a birthday on Tuesday...we are now a year apart in age!!! She is getting old....lol!
And finally, my neice Whitney is going to stay with us for at least 1/2 of the summer. Once you have 3 kids, one more isn't so bad...unless they are bad...and she is not that bad!
Continue to remember Ivee in your prayers as we venture into the 2 1/2 year mark of this journey. I promise...once I'm not working I will update more and with Pics of the birthday party. God Bless!!!

Ivee did it...maybe not on purpose...but she did it

After Ivee woke up from her nap today, her "breaf" stank!!! So I took her to our bathroom. I just sat her on the potty and daddy gave her a toothbrush. I walked off and came back a few minutes later, and then we "smelt" it! She went poopy and tee-tee in the potty. We praised her and showed Ethan and Britt...and believe it or not..>YES< they came and looked. We all praised her, so hopefully this will be the beginning of a potty filled future!

Yes, Don't Faint!!!

Yes, I am updating my blog. Don't faint or anything. Ivee's 3rd birthday was this past weekend and I will post pics and more about that when I am updating from home. At the moment I am in the office. I was listening to a pastor on TV this morning and was struck by something he said. He was speaking on our "motives" in our "desire and prayers." He brought up the story of Paul and Silas in jail (Acts chapter 16) and how they had been beaten severely for their beliefs and preaching (probably a few times over). We, having the story in front of us, already know how the story will end, but they didn't have the "manuscript" in front of them knowing that God would free them from their chains. In the midst of their circumstance, you didn't hear them whining about the bruises or cuts. Saying, "Why won't you deliver us Lord? Oh, I could use some ointment for this cut. Does it look as bad as it feels?" And the like! No!! In verse 25 of chapter 16, "But at midnight Paul and Silas were praying and singing hymns to God, and the prisoners were listening to them." We know that suddenly a moment later there was a great earthquake and they were freed and able to escape with their lives to preach again. NO...they did not know what was going to happen to them. For all they knew, and what we can assume, is that soon they might be meeting their Savior face to face. They counted it joy to face their trials and circumstance. They were singing and praising their God!!
So, what did this bring to my mind as I pondered it...glad you asked. With the election of a new president and the governmental decline we have seen...well all I hear is a bunch of whining! Yes, I know we are concerned, and frankly we should be. But, where is the praying for the leadership? Where is the praising God in the midst of circumstances? Who is listening to our lamenting? In the midst of our circumstances all I here is...I already pay taxes for this and that...Nobodies taking my guns and such...Who is this idiot in office now...What about this...What about that... Oh, God please deliver us...O, God this...and O, God that.
Now to the matter at hand. Why are you calling on the name of God? What is your hearts condition in your asking? Let's give example.
You want to be out of debt, so you pray, "Oh, God, help me to be debt free!" Let us look at the facts. How long did it take you to get into debt? A year? Two years? Ten years? But yet you want God to get you out of debt today! Not that he can't do it, but he knows the motives of our heart. You are the one who got yourself into debt, don't' you think that God will make you work to get out of it! Now God does love us and desires for us to be "debt" free, but if in that moment he delivered you, would you still return to him? It is a matter of the heart.
Paul and Silas were lifting praises to God at that moment because their hearts were focused on Kingdom things. And the PRISONERS around them heard. Who do you think was touched by this? What do you think ran through their minds? Why would the prison guard in verse 30 want to know how to be saved? What do those around us here? Do they hear us saying that I shall not fear, or do they hear us whining and lamenting..."Woahest Me!" I think that we forget, "If God be for us, who then can be against us?" (Romans 8:31)
So, I will seek the Lord in Spirit and in truth. I will watch my tongue, for from the mouth come the matters of the heart. And as I pray, I will praise the Lord and make my petitions known, but I will pray that the matters of my heart would line up with the purpose of his will.
I hope to post Ivee's pics soon, so the next blog will be more upbeat. Thanks for letting me share my heart with you. Have a blessed week, and may we seek the Lord with a glad heart!
P.S. Yes Emmett you can proof this and let me fix what I messed up cause I don't have time to proof it myself.

Ivee Takes Her First Steps

Yes, We are So EXCITED! Ivee did take her first steps this past Saturday. She is not going to be running any marathons yet, but what a start! I have posted the video to Youtube. Take a minute if you want to see it. Keep on praying!!!
Love Hope and Emmett
Link to Youtube Click Here

I have uploaded the new video I made to help get support for St. Jude. I wanted to share it with all of you. It is located to the right in my links column. Thank you for all the support you have given over these years.

Erin's HomeGoing

Erin, whom I have spoken of before (and who's link is to the right) had her homegoing on Saturday, March 28th. Erin was 4 years old and had her 5th occurrence of Ependymoma. The doctors did all they could do to help Erin survive this nasty disease, but in the end it won. She will be missed by all. Pray for her mom (michelle), dad (jim) and brother. What a precious life!!! What a beautiful girl!

The Foley's In March

About a month ago, we got to go down to Orange Beach and let the kids swim. Ivee can't get in the water without something to cover her mikey-button, so we are limited on how often we can let her get in the tub, which she loves to do. She DID NOT want to get in the pool at first. BUT, once she was in...she didn't want to get out!

Last week, it was so nice outside, that I took our munchkin outside to sit. She is just getting so big!

This past Saturday, I took the s with me to the "Saddle up for St. Jude" fundraiser in Robertsdale. Ivee couldn't get enough of the "bunnies" in the petting zoo area. She held every one at least three times. Then she would kiss on them. Thank goodness for allergy medicine!

Brittney got to drive a mule and then she took Ivee for a ride on it. It is a good thing we skipped the Hayride. Once they came back from the trail and started laying the hay around, her eyes began to swell and started running immediately! She still had fun though.

Lastly, we waited for the riders to come back from the trail. It is a site to see 400 horses coming over the hill. What a blessing to have so many people involved in raising funds for St. Jude.
This picture I took as soon as you could see the horses/riders coming over.

Here they are really starting to come in.

And finally, Saturday, Ivee waited til I wasn't watching. She saw me take my dark chocolate stash out a few days ago, and made a mental note I suppose. She snuck in and had to really work at it to reach, but managed to get to it. I only found her once I heard her ripping the paper. TOO LATE. I just let her finish her piece. She is such the chocolate lover!!! Vanilla pudding is a no-no. It must be chocolate!!!!

We have met with the school system, and are awaiting the options we have to put her in the 3 year old program to help with her therapies. Early Childhood Development only goes to 2 years of age and then the school system takes over. I don't know how I feel about putting my baby in school, but I want what is best for her development. I feel like she is SOOOO close to walking. I still have to explore the options for feeding though. They will not deal with this area.

So, all is well for now, and we won't return to Memphis until the end of June. I'll update when we do anything interesting. God bless, and keep praying!!!

So, what is Ivee doing........

Well, she takes stuff apart and decorates herself. She says, "It's pretty. It's pretty!"

She is starting to take some bites of food and drink from a straw. She is not in anyway near giving herself nutrition by mouth, but is beginning to really take interest.

She wants to sit at the table all the time and pretend to eat, or taste test, or sip from the cip cup. She is really beginning to be like a normal child. What is sad is that her being 'normal' is very weird for Emmett and I. We just don't know what to do with normalcy concerning her. I try to reflect on the other kids and what they were like at this age, and I have trouble remembering. It has just been so different.

This last pic is of Ivee's hat that she made (decorated) while being at St. Jude.

After all our meetings, let's just say that all is stable and we are just watching and are not "concerned". God is great and his name is greatly to be praised! He is Jehovah Rapha...her healer! Thank you for your prayers again and again.

Live from Memphis....

It's the gal who thinks her dad rocks!!!!

She was like a "crazy" woman yesterday. After sedation she was a mad, twisted drunk! But she did get over it. It was entertaining for a while, and then became a bit of a hassle, but she made it. We turned Barney on (but then she changed her mind) and she demanded we put Madagascar in. Then we were okay. Later last night, she was all over me. I think she was finally getting all my attention (no brother, sister, daddy or housework to interfere) and she was loving it! My abdomen is a little sore from the constant body slamming she gave me, but Cathy and I laughed at her silliness. Below is a picture to remind me of this time. Maybe it was the piggy tails!

Okay, to the reason we came to Memphis. Ivee is still cancer FREE!!! Yeah. Dr. Merchant does have a concern (this is concerning the concern that I had no info on back in December, but obviously wasn't a huge concern because we were not rushed back!) The concern is her brain stem. Dr. Sanford did show me in an MRI prior to her scar tissue removal that her brain stem was a bit thin do to pressure from scar tissue and the cyst that was on the back of her head. Dr. Merchant must have believed that the tissue removal would have fixed this. Well, it hasn't. It is still quite thin. What does this mean. Well, he doesn't know. Will it bother her? Don't know. Cause her pain? Don't know. Well, I am not concerned cause God has done so much through and for Ivee.

Dr. Merchant wants to talk to Dr. Sanford and I will meet with them tomorrow. I told him that she is doing fine, and that even though it is all a slow process, she is making progress and she is not moving backward. So, I am pleased with her, and he was pleased to see what she is doing with talking, moving and etc. He was also pleased that Ivee is going to preschool and having interaction with the kids her age. He agrees that is really good for her. So, that is it from Memphis where it is extremely windy and wet today. We have only 2 appointments today, so if the weather would so graciously permit, we will visit one of Ivee's favorite places...the zoo!

Thank you for continued support and prayers. Pray for us to safely return. Wednesdays weather will not be good, and that would have us traveling more at night, so we will probably return home on Thursday.

Sorry for the lull in updating...

I know I haven't updated in a while, but I have just been preoccupied with working and getting the kids back to school. I can catch you up though, not much is happening.

Ivee saw Dr. Martino (neurosurgeon) on Tuesday. She looks good and of course no leaking, so he just wants to get a CT scan as a reference point for her. This is so that if something happens in the future with the shunt and ventricles, we will have a scan to compare another scan too.

We go back to St. Jude on February 9th for her next MRI. We will speak with Dr. Merchant about whatever this "post Surgery" thingy was that he was concerned but not too concerned about.

On a "non medical note" Ivee is doing well. Still not eating by mouth, but is taste testing everything. She can take sips from a straw, but it is not a consistent thing. She can walk with assistance by one hand, but still can't stand on her own. She is just really scared.

Below are pics I took of her yesterday. She climbed up to the piano, opened a book I had and began to sing and play. She was so serious about about "knowing" what she was singing and playing. Guess she's been watching mommy at work. She began to sing one of her favorite songs over the last two months, "Sing Noel." She just played and sang. It was too cute.

Grandmother's Home Going

My last grandparent, Grandma Vernetta Matthews, had her homegoing this morning at 1:00 a.m. Grandma was the mom of four kids: Paul Matthews, Shirley Stevens and twins Nancy Long (my mom) and Hugh Matthews. Grandma left us at the age of 93. She will be missed, but she will live on in her children (4), grandchildren (10) and great grandchildren (15+).

Update and getting rid of some stuff.

Well, I missed blogging, but as many of you may know...December 18th/21st was the Foley Family G.I.F.T day. (God is faithful and true) We celebrated Ethan's birthday on this day, but we were reminded and celebrated the life of our children, and esp. Ivee. It has been 2 years since her "fall" from the grocery cart and diagnosis. Em and I fell very blessed to have our children, and we are overwhelmed by the memories of our journey over the past two years.
May we all remember that children are a gift from God, and may we teach them to walk in truth and in the light of Christ. May we not stray from our responsibility to them, and may we be reminded daily that we are not promised tomorrow. So, live each day to the fullest, and take advantage of every chance you have to hug someone and tell then you love them!

I've got some stuff on craigslist, but I thought I would put it on here in case one of you were looking for something or if you knew someone who was looking.
We are selling our couch and loveseat, just asking $350 for both. They are in good shape.


Also, still selling a changing table and crib. Asking $150 for both. I can work with anyone on the prices if I need to. Should have a yard sale within the next month to get some stuff out of the house, so if you are interested you may need to jump on it.
Thanks and take care. God bless you!

Just a note of Thanks

To the Rodericks, McLeods and Hildreths...thank you for the boxes of clothing. I was surprised to come home and find them on the porch. I feel like I am missing someone, but I'll have to go home and see. I seem to have only a few minutes at work to post, so I am trying to remember these names from breif glances.
The play was a success. I haven't done one by myself before, but the Lord provided needs and blessed everyone involved and in the congregation. I expected to come out seeing about 250 to 300 people, but there were (including the cast/choir/band, children and workers in the nursery) about 530 people. About 475 to 500 in the audience. We didn't count, so I don't know for sure. I didn't really get to see alot of people cause my back is to the people all the time. But I was told there were alot of people who use to come here, and people who may not have been to church in a long time, and then some people who's names are big in the community here. I was just shocked! That is all I can say. God is good and faithful, and remember "Jesus is the reason for the season...but so are you!"

The Reason

I want to invite all of you to our production at the church this weekend. I am posting the info below. Also, you can take a look at the poster and get more info from our church website. That address is www.faithfamilyonline.com. I would put it all on here, but my church PC will not allow me access to post any pics or anything. If I have never meet you and you decide to come, please see me afterwards so I can meet you and introduce you to Ivee. Thanks for always lifting us up in prayer. God bless.

Faith Family Fellowship Presents...
The Reason
Written and Directed by Hope Foley
This Sunday, December 7th
6:00 p.m.
Spanish Fort, AL

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.

Going Home

The doctors are okay with Ivee going home today. They are "impressed" with how well we deal with her and the situation. We are like..."This is nothing in comparison to her first surgery!" She is doing well too, so that makes it easier. I guess they are not use to dealing with parents who have to take care of a child the way we do. Ivee just requires alot of attention, and we want what is best for her. So (I suppose from watching us with her) they are comfortable with our taking her home. They are writing the discharge orders and we will leave sometime this morning. We will take our time coming home so that she is comfortable as can be on the way home. She, by the way, is more than ready to leave. Anytime they (nurse/doctor) walk into the room she will whine, and immediately wave at them and tell them bye. She points at the door and look at us like..."Get me out of here!" She also wanted to get on the floor last night. Of course, we didn't let her...it is a hospital floor. Le Bonheur (which I found means 'Happiness' in French) is a cleaner hospital then many we have been in, but still...not gonna let her on the floor with her hands always on it.
It is quite windy (with gust) here in Memphis, so we will have to be quite cautious on our way home. I suppose it is remnants of Ike.
That is all for now.

The Day After

Ivee came to the floor at 8:30 a.m. She is doing quite well. She isn't complaining about pain too much, but we also make sure she doesn't have much of a chance too. She is on morphine/benadryl for immediate relief when needed and Loretab for long term pain needs. I decided to post some pictures, some form post surgery, but some just cause they are so darn cute. Oh, and let me correct my middle of the night spelling. We are at LeBonheur Children's Hospital. (Not Leboner) It is french!
First pics, while I was outside one day at home, I turned around and Ivee was looking out at me like this. TOO Funny, I thought!

This is Ivee one Sunday morning getting ready for church.

Here are some pics from the zoo. In the first she is extremely excited about the polar bear swimming along the window of his exhibit. The next is with NEMO! And then Ivee and Mommy outside the lion's exhibit.

Here we are in the bathroom Wednesday night, hamming it up with out hair do!

Here is Ivee this morning post surgery. She is doing fine as you can see.

She is sleeping now. Thank you for your prayers again and again. I'll update as we know more things.

Surgery day

Ivee came through surgery fine today about noon. It took a little longer than we had expected. Dr. Sanford had to cut the entire length of the old scar, but she still has plenty of hair left! He said that there was quite a bit of scar tissue. He cut a large opening in it so that fluid would be able to run normally to the parts of her brain needing it, and to relieve pressure on that area of the brain. Also, (for those familiar with Ivee's hydrocephalus, or cyst on the back of her head from the previous surgery) he took as much of that membrane out as possible so that the pressure would also be gone. He then removed a bit of the apparent scar on the outside of her head. The outer scar became infected after her initial surgery and caused large potted scars in places. So, he cut some of that away to make a more pleasant scar for her. (This will help with her vanity as a teenager I suppose!?) He said that her recovery and pain will be lessened more than the initial surgery cause we are sewing scar tissue to scar tissue instead muscle to muscle. Makes sense I suppose.
Em and I walked into the ICU and were surprised to see Ivee sitting up in the nurses lap, holding her head up, and turning it. I knew it wouldn't be as bad as the last, but I wasn't expecting that. She saw us and reached for us immediately. She threw quite a few fits for about an hour. She wanted the IV and support off her hand. Later, we looked and her arm was twice it's normal size and blue. She had an occlusion in the line and it was causing severe pain. So we removed the IV from the hand (she still has one in her foot and her port for us to use). We had to cut her bracelet off cause it's was starting to cut into her arm. Once we did this, she calmed down a bit. So, it was pretty painful...obviously! She is on Loratab and Morphine/Bendryl. So, she isn't in alot of pain right now. Just sad :(
Hopefully we will be in our room tomorrow. And if all goes well, maybe we can head home Sunday. For those who would like to know, we are at LeBoner Children's Hospital here in Memphis.
Thank you, thank you, thank you for your prayers! May God bless you and I'll keep you informed as I can.

The Day Before

We are having a time here at St. Jude, good and bad. We accessed her port yesterday, which is always dramatic. And this morning we had to do a pre-op screening with labs. So, we were stuck again, cause you can't do a culture through a port (the heparin interfers with the results).
Dr. Sanford actually was at the hospital while we were there, so we saw him early and had the rest of the day to ourselves. As we were talking to him, I informed him (once again) that we had not seen the scans. So, we found a PC and took a look. He showed us the issues first seen in the MRI and then the contrast dye CT. You could plainly see what he was talking about if you are like us and have looked at many MRI scans. The area of the brain that does deal with balance does have visible pressure on it, as well as the area of the brain that controls swallowing is not receiving little (if any) CSF (fluid). I have come to the conclusion that because of this, Ivee is nauseated often with or without being feed. She never has the desire to eat cause of how it makes her feel...worse! So, this is also (once again, my conclusion) the reason why she won't try to eat by mouth, and why she had digressed in that area. The pressure and consistency of the scar tissue has caused this area to loose more and more communication with the other parts of the brain. SO, my conclusion is that not only will this surgery hopefully allow Ivee to stand and walk alone, but that it will cause her to no longer be naucious and give her a desire to eat. Dr. Sandford is not sure how extensive a surgery this will be until he gets in there. He said it could possible just be that he needs to slice open the scar tissue to allow it to drain, or it maybe more involved. It's just not something that you can tell from a scan! I hope that all made sense!
We will be at the hospital at 5:45 a.m. Surgery is at 8:00 a.m. I will update more later.
Also, we visited the zoo this afternoon. She screamed when we left. She didn't want to leave.

Surgery Push Back

Dr. Sanford's nurse called this afternoon. They have an emergency surgery that had to take precedence over Ivee's, so now we are scheduled for Thursday morning at 8:00 a.m. And all the preadmission stuff for Wednesday. My father, Ivee and I will be leaving Tuesday around noon and Em will drive up after work on Wednesday.
We will more than likely be discharged on Sunday or Monday (my assumption from what I was told). We will have to return to Memphis 2 weeks post surgery date for a check up and stitch removal. So, we will be traveling alot this month.
Of course, our regularly scheduled MRI will be the first week of November, election day to be exact, so I will have to do an absentee ballot. Could things get any more chaotic? Yes, but we pray against that.
Once again, this temporary putting off of Ivee's surgery is more than likely the workings of the Lord so that his perfect will be done. And though the reasons are not so very evident all the time, I put my trust in him.