Ivee is FOUR years old!!!!

Ivee celebrated her 4th birthday this past weekend. She loves many things, but decided on the Dora Theme (cause mommy could make a cake easily of that)!

Here is the cake mommy made her or Dora and her cousin Deigo on a purple Aztec themed cake.

Then she wanted to take some pics after big sister Brittney fixed her hair and makeup.

My Ivee is a girly-girl!!

Ivee with Grandma Long at the party...

Ivee and her daddy. She loves to rub on his head!!!

It was some hard work trying to blow out the candles!!!

Present time...she got Dora's Backpack and many pretty clothes!

She is a huge puzzle fanatic!!! So, a $5 puzzle is just her thing!!!

She informed her cousin Haley that this backpack was hers!!! (Haley had gotten one a few weeks before for her birthday!!! Ivee was the jealous one then!

And of course......she loves money!!!!

In the end, she ended up on the couch with the puzzle we got her!

Thanks to everyone that has wished our girl a very happy birthday! She is amazing!!

My little "model" back in March!

Walking ALL over Sam's a few weeks ago

The kiddos at the beach. Ivee's first time to play in the sand. She wasn't sure what to do with it at first, but she took to playing with it after a few minutes and loved it!

Beautiful Day

I believe today will be a beautiful day. Today I will see Ivee on the beach for the first time in the sun and playing with sand. Today I will see her touch the ocean with her feet. Today I will see her laugh as her brother and sister chase sea gulls. Today I will see more than one set of footprints in the sand, but I will reflect on the time when there was only one set. Those were the times when the Lord was carrying me. Today I celebrate his blessings and thank him for the gift of LIFE!

Taking a trip

Most of the Foley's are packing today for a week long stay in Meridian, MS. Going to help Tony and Melissa with their Easter production. I am excited to be used again!!! (Maybe that didn't sound right :)
Praying that our time their brings some fun times with family/friends. Em is driving up Saturday to spend sometime with them as well.
We have been visiting a new church start in Daphne, and have enjoyed the music and message. Looking forward to visiting there some more when we get back. BUT, definitely looking forward to worshiping with the Harman's this coming weekend.
God bless you all, and pray for us to have safe travels and no issues.

Johnny had his shunt replaced yesterday, and all seems to be going well. Pray for a quick recovery and no infection!!!!

Prayer

Johnny is still in the hospital. Hopefully they can replace his shunt this Wednesday so he can go home.
Pray for Brad and Christy Benton's family. One of Brad's brothers, Jacob, died in a car accident yesterday morning. He was only 18. Brad is the oldest of the 5 boys. Pray for Brad's parents, Roger and Jamie.

I don't remember so much going on when I was a child. Maybe because children are oblivious to their surroundings sometimes. Maybe it's cause I grew up in a small town and things just didn't happen as frequently. I know that as you get older, people will start passing away, and that tragedy will mean more to you, but it seems as though there is just so much around us! Natural disasters, cancer, surgeries, accidents, death...people just affected everywhere. I hang on to the hope that my Savior is coming for his children soon! That suffering will end and tears will be wiped away!

All is well....

Ivee's doctor appointments are pretty much over. Only 2 more weeks and we pass the 6 week watching period for infection. She is still making strides in speech and speed. Getting more and more close to her appropriate age everyday. And...she is so girly. Totally the opposite of my Britt!
I'm currently in the swing of learning 13 songs in 1 week. My friends, Tony and Mel, need my help with their churches Easter Production in two weeks. They will perform for 3 nights the last weekend in March, and I've got to crunch to learn the music so I can direct the band. Looking forward to it!!!! And glad to spend a week living with my friends! Pray for my mind to absorb it all, and for alot of people living under one roof for a week. I'll be happy doing music again. It's been 9 months, and this should help me get back into the swing of looking for a new position in the music field. I am looking forward to what God is going to do through this, and in my families future.

Life around these parts......

Ivee has been doing well, but unfortunately daddy brought home some sinus/respiratory thing! She caught it, so off to the pediatrician this afternoon. Just have to make sure she stays out of the clear on this shunt thing, so taking no chances. I think Em and I had it first, but it is more in my sinuses.
Em's grandmother had hip replacement on Friday. We haven't felt well, so we haven't chanced going to see her. Hopefully we can this week. 
One of my best friends from Mississippi, Melissa, called last night. Her brother in law,Brett, (husband's brother) was in a motorcycle accident. He had to be rushed to Jackson for emergency surgery to save his left leg. Mel said that a lady had seen the accident and stayed there praying with him. She said, "God has something big planned for his life, cause he shouldn't be here!" God always sends the right person along to encourage you. Em and I remembered a time after Ivee's accident (finding the mass in her head) that a lady-preacher came up to us and said that God told her to tell us that everything would be okay cause he is in control. She began quoting the names of songs from the play we had just been in at church. She said to "Hold on, Help was on the way" and that God knows that we "need a miracle." She didn't know us, that we had just portrayed the parents of a terminally ill child with cancer in a play just one week earlier, she didn't know the names of those songs, and she didn't know that the play had just come to life for us. That we now were really parents of a child about to walk the journey to battle a horrible cancer. God makes himself known in many ways! You just have to open your heart to hear him!!!!
So, please pray for Em's Grandma. Pray for the Harman's as Brett walks down the road to recovery after this accident. Pray for my friend Cris, as his mom is going through hospice after battling cancer for years. And continue to lift up the names of those little ones in my links column. Cancer is a nasty disease that is not a respecter of people. BUT, God is never surprised by what happens, and as we have learned, all things work for the good of those who love him (Romans 8). We are never alone!

The Foley's See Snow

Here are a few pictures of Ivee in the hospital. This is her taking a nap a few days after they externalized the shunt. You can see the tube on the right where the brain fluid leaked out. It is how we measure whether or not she needed a shunt.

Here is our princess after her shunt surgery. She always just sits right up and wants to watch tv and play. She is so tough!!

!

 

Then two days after we got out of the hospital, Atmore got alot of snow. So we drove up there. The kids had never seen snow before. Here they are rolling a snow man with their cousins, Whitney and Haley, and with grandpa.

 

Ivee and daddy out in the snow!

 

Ivee and Haley found their way to a bit warmer place!

 

Finally, they had enough and wanted to just watch from the window! 

 

Ethan and grandpa competed again the 'itney's in a snowman contest. 

 

Then finally there were snowball fights. Mom and Ethan both took one in the kisser thanks to big sister! We still owe her one!!!

The neighbor let us use her sled!

 

This is my dad's cameilla bush. Just beautiful

Home Sweet Home!!!

Yes, we...all 5 of us...slept under the same roof last night! Ivee was soooo happy to be home! She stayed up itching a little while last night, but her big sister slept next to her on the floor and scratched her hands and feet for her for about an hour. Thank you to my Brittney for letting mom and dad go to sleep and taking care of her!!! Her incisions look good so far, so hopefully all will stay well!

Today is the day....

Okay, so she had an allergic reaction AGAIN last night and the only med she had is the vancomycin. So...ding, ding, ding....it's the drug I thought she was allergic too. So, even though the itching returned, she is doing better this morning, and it looks much, much better. The doc said he would suspend the medicine due for the rest of this day and night and she can go home. Whoo-hoot-hoot!!!! She is so ready to go. The doctors keep asking her if she is ready to go home, and she just ignores them. She ignores everyone. I think she doesn't believe anyone, so when we are actually walking out the front door, I think she will realize we mean it! Ready to have the whole family at home under one roof....and daddy is ready to not be at home alone. I think he wants it more than she does, just for different reasons. : )
We'll go back to neurosurgery next Wednesday to get the stitches out of her head. The ones on the inside of her tummy will dissolve on their own. Her stomach is the only thing she complains about, but once she has motrin she is fine. She is my toughie!!!
Thanks for praying and I'll keep you updated.

Three days to go

She had a descent night of sleep. The itching lasted only about 1 1/2 hours in the middle of the night. Hopefully that will end altogether soon. Her surgery went well and she really isn't complaining of pain. She does just kinda lay there though, so I'm going to ask for Motrin just in case she has some discomfort. We'll be going to a regular room on the floor today. Dr. Astrada from Infectious Disease wants her on antibiotics for a couple more days, so if all goes well we'll go home Thursday. We'll have to pay close attention to her for the next month. That is the critical time where infection could happen in the new shunt.
Thanks for your prayers for our baby's health and for our family. I would like for you to ad our health finance situation to you list as well. There was a drastic change recently that we are going to have to try to fight/appeal. This will probably be a strenuous and long process as well.
If anyone knows of any foundations that help to provide or assist with therapy visits let me know. Thanks!!
We are loved,
Emmett, Hope, Ivee, Ethan and Brittney

Surgery Day

She came out of surgery fine, and we are back in PICU. I'll update more tomorrow. Tired and going to bed! Thanks for praying.

Surgery Day

Excuse the first part of this blog. It was from my Facebook rant yesterday! Didn't want my blog to feel left out! :)

Facebook: Wow! After saying it for about a week now, a doctor finally listened to me. I think I know my childs body, and I told them she was having an allergic reaction to the meds. They just wouldn't quite listen. First it was just eczema (which I believe is part of it), then it was the medicine for her eczema just isn't strong enough so lets try two other tubes of creme, then it was contact dermititus (on just her hands and feet? when the rest of her is touching the sheets as well and they aren't broke out????)! Then Finally yesterda, after 4 nights of no sleep from the itching, let's bring the Infectious Disease doctor back in. OH! What's that!?!?! He agrees with mom?! It looks like an allergic reaction to the meds! So let's get an even stronger creme, and put her on prednizone! Let me tell you, before Ivee I was the mom who took her kids to the doctor after they were sick for like 2 weeks. Never saw a doctor as a kids unless something was punctured and needed stiches in the ER! Even with Ivee I am not overly sensitive to medical stuff. I believe viruses come and go and a doctors visit isn't necessary for everything (not to offend anyone, that is just me, so please don't be offended!) BUT, if I call for a doctor to come into the room it is because something is WRONG! I'm not being paranoid or a hypracondriac. (Sorry if my spelling is notrocious. Don't feel like doing spell check on the PC) Okay....done venting!

We clamped off her ventriculostomy this morning at 8:00 a.m. Surgery will be around 11:30 a.m. Praying it is on time this time, since clamping her off gives her a horrible headache. Unfortunately, Ivee's ventricles are so small we have to make them swell to be able to perform the surgery! thanks for prayers

One Week left?

I believe we will only have one week left in the hospital if all goes smoothly. Ivee's new shunt surgery will be on Monday, the 8th. Not sure of the time yet. Dr. Martino informed me that 4 hours before surgery they need to clamp off her shunt to enlarge her ventricles so he can perform the surgery. That means 4 hours of a pretty bad headache just getting worse. Not sure she'll be able to have anything other than Motrin to help with that. If surgery goes well, then I assume we'll be on the floor for no more than 2 days and we can go home. Ivee is trying to find ways to entertain herself and others. She feels much better since she slept off the headache yesterday. It completely wiped her out! Her eczema is increasingly getting worse. The stress makes it flare up, and the moisture under her tape on her hands and feet. She was itching like crazy last night. Benadryl helped some. So, right now we just need to find ways to entertain each other! Good thing she isn't a child who runs and climbs everywhere! 

I don't even care what day it is

Ivee slept pretty well last night, just tossing and turning some. This morning at 7 we clamped of her ventriculostomy. She complained with a huge headache until 9:30 when Dr. Martino decided to CT scan her to see if her ventricles were enlarged. They were is the only thing I've heard so far, though I am sure he will come up and talk to me after his surgeries. We opened her venc back up, and the pressure is off, so she is resting now. It must have been a pretty painful headache for her, but now we know. She will need a shunt. This is going to always be the case. So, I am content to deal with this. Not sure when she will have surgery to have a new one placed...if I had to place a guess, we are probably stuck her until Monday :( . This time the surgery will be a bit more delicate. He will have to try to cross her new shunt line past her port in her upper right shoulder/chest area. So it wll probably be a bit more involved and require a few more incisions.


thank you for your prayers. Continue to lift her up until this is all over.

Hospital stay...Is it really February?

Yeah....so this mom is ready to go home! Counting up to day 13 in the hospital. Not sure by what day Dr. Martino will be sure of what he needs to do or not do. Britt texted last night after a break down, Ethan had a break down last week, and Ivee is" over" the hospital as well.


We have lifted the ventriculostomy tube up more today.Still continuing to test her ventricles. She seems to be absorbing some of the csf, but she is still pushing a good bit out. She had some trouble sleeping last night cause her mouth has ulcers and yeast. Had to give her a pain med swab, which hurt itself and made her mouth bleed. Her poor lips are crusty and cracked. Her eczema is flaring up as well. She is sometimes complaining of ear pain, this is a side effect of the testing. She could possibly develop headaches, nausea and hydrocephalis as well). You know, we did all this about 16 months ago with the meningitis. We were in the PICU for 2 weeks at that time ending with the shunt surgery. It isn't easier the older she gets, in fact, it is a bit harder. She understands so much more. She easily gets upset with mommy cause she lets people touch her. If they don't wear gloves she does a bit better. The last time we were in the hospital it was after the scar tissue removal in the brain (which lead to the meningitis). She didn't have much of a vocabulary before that surgery. So, in the PICU, just a week after the surgery, she learned to speak really well. She learned to say, "No" and "All done." Well, this stay she has learned "Stop it" and "No ouchies."

On a lighter note, she has performed her lipsyncing skills here. 1st for the Senior Bowl Football players that came to visit, and then for her nurse Kelli. She has also busted out her groove skills. She looks really good for a little girl that's been through so much. She is my little sunshine...most of the time!

Thanks for praying and we'll keep you informed.

Shunt testing day 1

Today we pulled her tube up to begin testing her ventricles. We need to pray for her ventricles to work and for healing from any of the side effects of the testing (ear aches, headaches, vomiting). Hopefully we'll know the answers to this after a few days.

Sunday Morning

Well, we had two restless nights of sleep in a row. She is getting accustomed to hospital life, but she also has major attitude at times. She has developed a rash on her hands and feet. Probably eczema. We'll just treat it, and try to get it under control. The itching has been driving her crazy at night. The diarhea is still happening and yeast thanks to the antibiotics. Trying to combat those with meds. So far, so good for the yeast. Luckily the diaper rash has stayed at bay!
Johnny Sileno is back in the hospital. It looks like his incision sight is infected. He'll be going back into the OR to get the whole incision done again. Praying the infection stays away from his shunt, or they will be looking at a whole new set of problems.

Friday Update

Em gave me a break last night. I got to go home and take a much needed shower, and then sleep in my own bed. Unfortunately I forget to turn his alarm clock off when I go home. Her heartrate started to fly up again this morning after I feed her and gave her bolis meds, and she was attached to her IV fluid meds. We quickly counter acted it with more fluids. We didn't let it get above 170 this time. Still uncertain as to why she is doing this in the mornings, and not in the evenings.


We have one of our favorite nurses today, Kelli. She was with us from the start of this whole thing over 3 years ago.She was the first to try to get Ivee to eat after her tumor resection. She and I relived the moment this morning. I told her, "I remember when you tried to feed her, you looked back and me and just shook your head." She said, "I know. I remember it. It just broke my heart that she was like that. And I hurt for you guys!" It is great to see so many familiar faces (nurses and doctors) who have come in to see her. They are just amazed by our tough little angel! They just can't believe it has been that long and that the baby they knew 3 years ago and had such a hard time is now almost 4 years old and doing so well. Em and I know why though. To God be the glory!

Post surgery update

Surgery went fine. She did very well. We were stuck in recovery waiting on a room in the PICU. Once they rolled "us" upstairs she wasn't happy to see where we were going. Guess she thought we were going home. So, last night we got settled into our room in the ICU.

Ivee had a really rough night. I had to sleep with her to calm her down. They had to put the oxygen on her, and she tried to pull it off all night. They finally took it off around 4 am and she slept a little better. This morning, they gave her one of her antibiotics, and her heartrate flew up and stayed in the 170/180's. She became clammy, kept holding her heart and wouldn't let me put her down. We stopped the med, and within an hour it lowered to the 150s. Now it is staying in the 140/130s. She probably developed a sensitivity to the medicine, so we are changing things up. We need to make sure that whatever caused the infection is out of her system. She is watching Dora in her bed and is doing better. Mom needs a nap, and so does she. Hopefully we'll get one soon.

Hospital Update Day 5

(She wanted all her lady bug barrets in her hair yesterday)

Ivee is scheduled right after Dr. Martino's 8 am in the morning. So, I think she'll be in surgery around 9am. He said it should only take about 30 minutes, but with anesthesia, I'm assuming she'll be back there around 1 to 1.5 hours.
Emmett is sick with the virus this morning. Praying he gets over it quickly and I don't get it. It has been a 24 hour bug, so hopefully he'll be fine in the morning. I have been around my girls when they had it, and I did fine. Hopefully my body was already immune. Thanks for the prayers. God has always had a reason for everything that has happened with our baby girl. We feel that no less this time. Our specific prayer is that He wants that shunt out and doesn't want another one in her! We pray her brain has healed and will do just fine absorbing the csf on it's own again.

Update from Hospital day 4

Okay. So the verdict is surgery! Dr. Martino is pretty 'full' tomorrow, so more than likely it will be Wednesday. Then we will be living in the PICU for at least 10 days. They will be externalizing the line to relieve any pressure on the brain. Watching to see if her brain/ventricles recoop and work on their own without putting in a new shunt. If so, we clamp it off for 48 hours, then remove it if all is well. If not, surgery again to put in another shunt on the opposite side of her body, trying to avoid the port on her right side. So, that is it. My sanity will be going in and out, back and forth, and up and down. On the bright side, Ivee adapts pretty well to hospital life. You just can't sleep in the ICU in the lay down chairs. I just need to get one that isn't broken.


Thanks for the prayers. I'll let you know when surgery will take place.

Sorry I forgot...

Okay, with all the hospital stuff I forgot to blog that Ivee's scan is still STABLE!!!! Thank the Lord.

Surgery Update

So far, the cultures aren't growing anything. This is good. That means that the infection is not in the brain/shunt. The CT scan came back clear of any cellutos cyst, which is also good. We will be waiting Dr. Martino's visit on Monday. He will be doing some research this weekend to see what he thinks would be best for Ivee, as he will also be consulting Dr. Mancou of infectious disease. I am assuming we have a 50/50 chance of surgery to remove the shunt. We will know more on Monday when he has checked the culture results and has finished his research. So once again, our daughter has something unusual and rare happening with her. Why would be expect anything else! Thanks for your prayers. We know who the ultimate healer is and has always been. Em and I are thankful for the last 3 years. God has graced our family with a new understanding of what is important in life, and with a new understanding of what our heavenly Father faced when His child was put through the fire!!!!!
Remember: That past is but a thought, and the future is yet to be seen, but today is a gift! That is why it is called the present!!!!

Ivee in the hospital

Now I am home and can update from my PC. Long story short! Ivee is in the hospital cause we notices continued redness and swelling along the shunt line in her neck and chest. They have drawn blood and csf cultures from her port and shunt. The fluid looked clear, and so far no signs of anything. If the cultures grow anything, then we are looking at a possible bacterial infection and surgery will have to be done to remove it. If nothing grows, it is probably viral. We will continue to treat her with antibiotics.
She had a stomach virus this weekend, and it is a possibility that it went up her line somehow on the outside. She can't throw up so diarreha were the symptoms. The fever was slight on Tuesday, but last night at home you could just feel her and know she was sick. Before I left her with Emmett tonight, she was already beginning to feel a bit better. Still redness and swelling, but it is going down gradually. I will post as I know more. Thanks for your prayers!!!

Memphis Bound

It is scan week! Pray for us as we travel once again. Ivee is on the "end" of some kinda of stomach upset. So, hopefully traveling tomorrow we won't have too stop too much.
Wednesday is scan day, so pray for a stable and clean one!

Something great to celebrate

Yesterday I got Ivee to take 8 bites of jello in one day! That was great for us, but then today at Speech she took 6 in one hour of therapy. She wasn't the most willing participant, but she is making progress. Many, many thanks to Lori, her therapist, for helping me find ways and activities to get her interested in eating!!!
On another therapy note...she is wanting to walk more, with her walker and with hand help. She goes from our coffee table/chest to daddy in his recliner. She has to get her 'footing' but then she can usually takes two steps before loosing her balance. Her core is still weak, but little by little she is getting stronger all the time! She will get her new cpo (leg braces) next week. They will help with the hyperextension of her knees. Thankfully she won't have to wear them all the time! The orthopedic is concerned about some sublixation of her hip socket. I showed her scans to her grandpa (the chiropractor), so we will be working on some plan to help her with that. Thankfully the doctor doesn't think surgery is necessary since she shows no sign of pain. He will xray again in 4 months to see what is happening there.
We leave for St. Jude on Tuesday the 19th. Her MRI will be on Wednesday. Pray, once again, for a clear/stable scan!
Haven't heard from Jennine about Johnny today, but I woke up with them on my mind first thing this morning. I am praying every hour for them as he goes into the OR today!!!!

About Johnny:  Post-op MRI shows a sliver of tumor left.  After consulting with doctors at St. Jude, the course of action suggested at this time is to go back to the OR tomorrow and try to remove it.  Dr. Boop feels it will be a quicker procedure, it is not in a dangerous area, just means opening up the sutchers and going in again.  He does not even think we will need to go to ICU.  He does not feel Johnny will lose any abilities that he has already maintained. First setback.  Let's pray none others appear.  I'll post tomorrow at surgery time to ask for another round of ardent prayers to guide those hands.

Please continue for this family.

Johnny's Recovery

Johnny came through surgery and is doing great. There is a "carpet" of cells still on the 4th ventricle. Chemo maybe the next step (since he can no longer receive radiation treatments). The doctor is pleased to see the tumor was not around the brain stem, and there seems to be no physical side effects after the removal... (paralysis, crossed eyes, etc). Praise God. Thank you for praying along side us for this family.

Pray for Johnny Sileno. He is in surgery right now!

Need Prayer

Please pray for the Sileno family. (They are in my links column below) Johnny will be undergoing another tumor resection surgery this Monday (the 4th). Pray for the surgeon, Dr. Boop, other doctors and nurses, for a total resection, pray for no side affects, and for quick healing. Pray for Dr. Merchant, Ivee and Johnny's Radiation Oncologist. Pray that he knows which course of action they will need to take to help Johnny the best way possible. Pray for Johnny's mom and dad, Jennine and John. This is a hard, scary, and stressful time. It is so hard when your baby has to go through this. Pray for God to work a Miracle in their lives!!!!!

"Look out for me oh muddy water"

 I felt like Huck and Jim fighting the mighty waters of the Mississippi. Last night I tried battling and dodging the flood waters of Atmore. After about 20 minutes of trying to find a way out of the town, I finally had to retreat back to my parents home. I had to concede the fight and spend the night! After a not so great night of sleep thanks to sleeping with my 3 year old, the chime clock going off every hour, and my niece waking me up ever so often, I just got up at 5 am and the kids and I headed home. Gratefully, we hit no other waters. The flood had receded well over night. Ethan made a comment last night, "Didn't God promise not to flood us again?" I reminded him that didn't mean that floods wouldn't happen, just that he would not destroy the entire earth by flood! Not sure if his 10 year old mind wrapped around that one! (By the way, the title of my blog is from one of my favorite musicals "Big River.")
All the kids are doing well. Ethan turns 10 this Thursday. Happy birthday to my baby boy! Friday is G.I.F.T day! The day we celebrate "God Is Faithful and True." The 3rd anniversary of the day Ivee fell, and God gave us a 2nd chance at life with her, and opened our eyes to a new understanding of who He is and a new appreciation of life with those we love. It is much easier to witness to His faithfulness when you have walked the road that others have traveled. The roads may be different, but you can look at someone and honestly say..."I've been there!"
The kids are looking forward to Christmas break. Ivee is still making small strides and still slowly moving forward!
May we all remember the reason for this time of year. God reached down to man through a tiny babe, and through Jesus Christ bridged the gap between light and darkness! I pray that others will be touched by the light this coming year. If you haven't already, think and pray about what you would do and give this year to reach the world with the Love of Christ! Let us live out the great commission this year!!!!

What's New?

Not much. Ivee is still making progress. She is going to speech therapy twice a week, but food is a touchy subject for her. It got where she was crying before we even got near the building....like miles before. She is just too smart. So, I am just trying the feeding from home with the supervision of the therapist. We just set goals and try to reach them. She is really wanting to get around the house by walking, whether by hand or walker. She isn't afraid of the walker any more, so that is pleasant...for my back!
Looking forward to a week with all my family. Haven't seen them all at once in a while. David and Becky haven't been down in years!
My sister, Sonia, and her family are moving back to the area. Chris, her husband, will be stationed in P'Cola for at least 3 years. This is just great for us all. I miss them all! The girls just keep growing and getting to big, like my kids! Britt is 13 now, and only 4 inches away from being as tall as Momma! Ethan and Ivee are still shooting up in height as well.
We go back to Memphis in January. Our friends, the Silenos, have had a string of better news lately. God has really been working in their lives. Johnny's "spot" hasn't grown any since the last scans. So, they are just on hold, waiting to see what happens. This has been great news! NO GROWTH!
Have a blessed day and a wonderful Thanksgiving. Let us remember what are grateful for! May the love and peace of Jesus Christ surrounded you this week and everyday!

Update

Sorry I'm late getting this up. We got home from Memphis and our modem had crashed. Once again, I have internet back.
Ivee did well at her check up. She used her walker for the therapist, which is a big thing. We are "uping" her feeds, her weight has been down. She came out of the MRI fine, and within 20 minutes was her grouchy self. She is always like this. The neurosurgeon said that everything he sees is still stable. Her brain stem is still in the same position with the same pressure on it, but as long as she is moving forward (no matter how slow that may be) then she is okay. We just need to watch for any regression, that would be a sign of an issue with the brain stem.
Ivee has a speech therapy this Thursday. Praying that they will be able to help her and give us some more insight. Hopefully she will eat for them. She loves to walk, but with someones hand most of the time...not with her walker.
Her comprehension and vocabulary is still expanding. She loves school. She has discovered that playdough is an okay thing, so she wants to play with it all the time. She is always wanting to color. She reminds us to pray at every meal, and she leads the pray at meal time and bed time. Not sure what she is saying, but she just wants to talk to Jesus.
Remember to pray for Johnny Sileno and his family (he is in our links column). They found a cloudy place on his last MRI. He will be returning to St. Jude in a few weeks for another scan.

The Feeding and the eyes

So, feeding clinic was a bust. She didn't cooperate at all. Surprise, surprise, surprise!!! They did give me some helpful advice, just to keep my sanity, and they are going to assist in getting us more help.
The eye doctor saw her today. She didn't do so well at that visit. SO, we are going to continue to patch her left eye, and I will work with her here on a site chart to see what she is up to...for the next 4 weeks.
We leave for Memphis on the 20th for her next check up. Taking everyday....one day at a time.
Thanks for checking in, and I'll give more detail and updated pictures soon.

Prayer for Thursday

Ivee has feeding clinic this Thursday in Mobile. They are suppose to access her and she what I can do to help her eat by mouth. The only problem....you can't make her eat!!! How do you convience a 3 year old that food is good. That having a g button is not normal. She even tries to put her own tube in sometimes. I try to be patient, but she doesn't cooperate in the least. She will love something for three days, and then after that won't even try it again. I try not to get frustrated, but I don't know if I should force her (like we sometimes have to do, with all our children) or if we should just continue to just support her. I guess there is no right or wrong way to do this. I love that fact that she is strong, cause that is what got her through all this in the first place, but that stubborn will of hers will often get in her way to progress.
Continue to pray for the walking and eating. God bless.

Quick Update

Ivee went to the eye doctor after a month of patching the left eye everyday. The sight in her right eye has improved tremendously! Her left eye is 20/20 and her right is about 20/50. This is great news. We will continue to patch and see how much better it will become! Thanks for the prayers.

Update on Ivee

She is doing really well with the eye patchings. She keeps it on about 2 hours a day. She didn't make it tonight, though. She fell asleep after 45 minutes. You can already tell that she is starting to have better control over it already. I'm praying that she gains really great control over it before we go back to the eye doctor in about 3 weeks.
Em and I are headed on a much needed vacation in 8 days. We haven't been alone anywhere without the kids in about 12 years. After this experience with Ivee, we really need to take this cruise. Now, needless to say, mom is a bit nervous about leaving Ivee behind. Not just that, but leaving on a boat where I really can't be contacted, well I guess in an emerency I could. But, perhaps it will be good for me. I know I'm not in control anyway (even though I tend to fight that), so I just have to let go. So, let's pray for health for us all, good weather, and for my niece who will be left with the kiddos. Oh, and that the kids get along!!!!

Ivee's Eyes

Em and I learned this Friday that Ivee's brain has "shut down" her right eye, so she technically can't see out of it. The doctor believes we might be able to bring it back if we patch the left one about 2 hours a day. She doesn't like it, but is being a trooper. You can tell she can't really see at all when she's patched. This really makes me sad, but hopefully God will heal as he already has in so many ways!!!

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.