History

Sunday, March 6, 2011 10:14 AM CST

Dear Isaiah,

Mommy really hates when days mark things and not moments. But today is so hard for me not to mark the last time a year ago I held your sweet body in my arms. Today was the day they told us it was a stroke that had covered half of your brain and taken the spunk from you. Those sweet brown eyes that opened to me that day were empty and had been for days. I could see deep down you were trying to get to me but it sent you in seizures that really should have sent you into cardiac arrest. As they became uncontrolable and your body continued to try to fight although it was not winning Dr. Patel said it was enough. You see my angel we always told the doctors we would do for you but never to you. When he came to me and said we were now doing two you I had to be unselfish. I wanted to keep you on that ventilator just to have you, just to hold you, just to see you and to feel your body on mine. Me and daddy didn't do that though....I couldnt have done that to you that would have been selfish of me. Caroline was the bravest person I knew that day as she had been your nurse for a very long time. All things are to hard to remember.... I am so thankful for that hospital and the family there. They loved you as you loved them. They were always so proud when you got in your walker and ran through the halls.

Now you run with no walker at all. That day was a "birth" day for you. I miss you beyond words. I ache and hurt for you but you don't for me. Never will a moment pass that I don't wish you were on my hip and we were getting into some kind of trouble, we were very good at that! We lived together and little one we lived in the biggest grandest way I could with you...i tried to do all that was possible for us. Today I don't wish to be back in that hospital for one moment watching you suffer please know that but my wish would be to have that sweet hand rub my face one more time and those sweet lips whisper momma as they kissed me. Those moments had my heart and you my angel will always have momma's heart.

I love you my sunshine........
Momma

Monday, February 14, 2011 10:05 PM CST

Happy Valentine's Day my angel!!!!!!

It was one year ago today that we went on our last date. We had fun at the rodeo......then we cuddled together that night!!!! You loved your balloon that we got you to have that morning. I got your brother one today after standing for 15 minutes in Kroger not knowing if i could walk it to the register.....there checking me out was a young man that was a brother to a boy mommy mentored when his daddy died. Your brother thought the pink heart shaped balloon was great!!!!! Guess what else tonight while him and I cuddled in bed he found your Curious George (the monkey mommy still cuddles every night) and he thought it was wonderful.......no i am not sharing George!!!!!!!

thank you for a wonderful Valentines last year my sunshine......

Love You,
Momma

Monday, January 10, 2011 10:18 PM CST

It has been awhile I know. To those who still check on us thank you and thank you for being patient with me.

In just a very few hours my sweet boy would be 6 years old. On January 11, 2005 and 7:08 am I gave birth to the most precious child. A child that I had no idea would teach me so very much. How could you not love such a tiny little person that calmed so quickly for the few minutes his mommy got to hold him. Isaiah there was an army waiting on you to be born but as far as I was concerned no one was in that room except me and you. I pushed and saw you and i feel even more in love.....I really didn't know I could love you even more but I did and every day I loved you more and more. My heart overflowed with love, pride, fear, and protectiveness for this child. He was what the rest of the world would view as "special" but to me he was my sunshine....... From that moment I knew deep in my heart that my time would be limited and I promised him to make the minutes count. I dedicated myself to him and making life count. What all could we do, what could we see, how could we worry people, and what fun could we have.

In 5 years my sweet sunshine did laugh, he learned, he loved and he had fun. I can't be fair to him if I dont also say he hurt......he endured much pain in his 5 years from surgeries infections and things I do not care to remember. I say this because remembering those things reminds me that now he never has to know those things I HATED for him. There is only so much a mommy can protect their babies from and I could not protect my sweet Isaiah from his anatomy. I could protect him from the world and I could teach him to love but pain was going to happen for this sweet child. Through the hospital stays he touched many lives. Parents that would leave the 5th floor without their children just minutes after holding their child after they died would come to tell Isaiah goodbye. You see he was the light that would shine.......he would smile and give hope. Nurses and doctors loved him and were always proud when he accomplished yet something else he should not have been able to. These people became our family and always will be. Isaiah never went without a cheering team whether at home, church or the hosptial. Many of you reading this have followed him along for a long time. You ahve shared his first steps, him sitting up, his love for cheetos, sweet tea, his lab, his friends, his farm, remember the first time he put his hands together to pray, his trips, the funny things he would do and the announcing that he would be a big brother. How I wish he could have held his brother. This was my Isaiah these were the good things. The love he had the joy he shared. On January 11th from here on out will be a day to celebrate the birth of this sweet angel.

What I would do for 5 minutes with him tomorrow when we gather to have him a small birthday party and sing Happy Birthday. To watch him smile at his papa as he played the guitar just for him......what I would do to see him watch balloons go up Saturday afternoon from different points around the United States in honor of his life. Oh for that time to hold him, smell him and listen to him say mama as he kissed me. But instead I will honor my angel and hold his brother tight. There is one thing I know and that is that Isaiah would not come back to me if he could. The first time in his little life he got to do something ahead of all of us and that was to stand in front of our Savior. And that is the greatest gift a boy could have for his birthday. My heart aches and feels like it has fallen out for me not him......i am selfish and I cry for myself, Tim, Landon and the others that would want to sing to him tomorrow but not for him. Someday I will share eternity with him and the ache will leave. The peace on my childs face when he passed told me he was finally free. Never even asleep had I ever saw him so peaceful. So I celebrate you my Sunshine..........my only Sunshine......you still make me happy when the skies are gray.

Isaiah Montgomery Buchanon I love you with all my heart and soul.......Happy Birthday my sweet angel and run free this birthday.........run free......

Love you angel,
YOUR MAMA

On Saturday January 15th at 4pm there will be a balloon release for Isaiah. We would love for you no matter where you are to join us by releasing a balloon in honor of him then. Post and let us know where you released one from!

In honor of his birthday on the photos page I will add a picture never shared and a picture of his brother.....enjoy.

Monday, December 13, 2010 4:42 PM CST

This weekend we put the Christmas decorations up. Huge thanks to some 6th grade boys who came to help and Tim and I finished yesterday. hard to put it all up but one little brother loves having all the trees. Isaiah's tree at the cemetery looks good still. Going to get him a fake one for next year once they go on sale. Then we can get the lights he likes and put them on it! His sweet tree is up in the basement with all of his toys. Going to hang his stocking although that is really hard for us. Landon will have a good Christmas just going to be a hard one. Step one all decorations are up. Step two will be to make candy and then be able to celebrate the most precious birth of all. Such a celebration time though makes it a time to miss my buddy. Hold the ones you love tight this holiday season. never in my dreams did I think i would put lights on his tree and not have him wrapped up in them and the beads.

Sunday, November 28, 2010 10:40 PM CST

There is a tree up at the cemetary for Isaiah! He would just love it! It looks like a Charlie Brown tree and had to be careful of what to put on it to not weigh it down but the pine tree looks amazing! Hard to do it and thankful for those who came on a quick notice and helped while I could do it.

Thanksgiving has been hard but through those who love us we have gotten through. A huge thanks to those who called or text us or let us know other ways you were thinking of us. It was hard being at Thanksgiving meal on that special Thursday in November with family where he would have loved to have been. He was so very close to all of them and we all missed him. For those of he knew so well he always had lots of love to give. We missed those kisses and that sweet face smiling. To those that didn't know him but felt as if you did I wish I had a cute Isaiah story for you to make you feel like you knew him that little bit more.

Landon had a great Thanksgiving and didn't mind being passed around one little bit!

Thursday, November 25, 2010 8:44 AM CST

Happy Thanksgiving my sweet boy. So thankful for the time with you and knowing you are with our Lord and Savior. But boy does a mommy miss you being with me......love you my sunshine.

Friday, November 12, 2010 11:22 PM CST

There are some things as a parent you pray you will never have to do. To bury your child is one and to pick out their headstone is another. Today we went to pick out the headstone. I pray that it will bring peace to a place I can barely go to. The cemetary is so very hard for me. It sends panic through me and makes me feel so empty. Here in this house I can sit and remember him sitting in the floor, typing on this keyboard, laughing that sweet laugh and taking care of him. There I can only remember a wooden coffin that sat and had to be lowered into the ground. Tim takes peace in going and I am glad he has that and hopefully by Isaiah's birthday there will be a stone with his sweet pictures that will hopefully give me the same peace. We are going to get a concrete bench to sit at the foot and i will be able to plant flowers there. Today has been a very hard day for me and one i have dreaded beyond what I can share. I walked back into that funeral home.....walked in the room i made his funeral arrangements and just faced a fear. Do I feel relieved......no but it is done and the last thing I could do for him. Oh how I miss that sweet angel of mine. On the back will be three pictures and in the center it will say "our sunshine" because that he was. He was the sunshine for me and the sunshine still gives me peace when it hits my skin.

On a lighter note Isaiah's little brother conitnues to grow and get bigger every day! Landon weighs 14 1/2 pounds. He has such a precious smile and is a ray of hope for me. He is well beyond "typical" for his age level. Very different for me to hear to say the least. We love this big guy so much.

As the holidays approach my days seem to make me miss him more. Not sure on what we will do for Christmas this year. My wonderful friend from school has promised to help me put up a tree for Landon. Landon deserves a babys first Christmas and all that goes with it. Me....well I will go to events as I feel up to it. If I can't do it then I know people will understand.

Thank you for your continued support on here although I don't write as much as I should. I just want to share Isaiah moments and I don't have new ones to share.

Until next time.

Nicki

Thursday, October 21, 2010 6:11 AM CDT

Landon is getting big!!!!!

I will put a big update on this weekend. We have been very busy around here with this being my second week back to work.

Will update with pictures and more about him in a day or so.......promise!!!!!!

Nicki

Tuesday, September 14, 2010 10:32 AM CDT

Hard to believe that our new little guy is 3 weeks old already. Time flies by with them.....before we know he will also be 5.

Landon is doing great. He had a rough first week with his jaundice but is much better now. He had to be under the lights in the hospital then when we got home 2 days later he had to be admitted to be under them again. It was just jaundice but it about made my heart fall out of its chest. I am just glad to have little fellow home and doing so well!

We are working on getting him into a schedule right now. Trust me he is one that if I would sit and hold him all the time he would never let us put him down. We don't want to create a monster so we are working towards a good schedule and him loving some independent time!

Thank you all so much for the kind words for him being born. I am starting to see things of his brother in him already. We went to the cemetary with a balloon and a button that stated "I am a new big brother". Isaiah would be sooooooo proud of his brother and i can assure you Landon would be way spoiled with all of his brothers attention!!!!!! Words can not express how much my heart literally aches for my 5 year old every day. I can say that although Landon could never put my heart back together completely he has put sunshine back in my day and having him to hold helps a mommies heart a lot. Like he picks the pieces up every day for me.

I will share pictures very soon. We had to get a new computer and the old program that I liked I am having trouble finding right now. So as soon as I get them uploaded I will put up a slideshow. We also had his 2 week pics done last week and I should be getting them back soon.

Thank you for loving our family and remembering all of the things about Isaiah. I always know that when I miss him to come here and I can openly talk about him without people looking at me to see if I will fall apart. Not this mommy for I know the victory is his and he finally won and what a gift he has left us with. As my sister put it on her facebook page the Lord gives and the Lord takes away and on the 23rd he gave.......how he has given so much all along.

Nicki

Tuesday, August 24, 2010 12:32 AM CDT

Isaiah's baby brother, Landon Montgomery Buchanon, arrived last night at 10:36. He was 8 lb 10oz and 21 in long. That is the exact measurements Isaiah was. I don't think that is just a coincidence. Landon and Nicki are doing great. The pediatrician said Landon looks great and that Isaiah picked a good little brother for me and Nicki to have and hold. Thank you Isaiah, you did great as always. We hopefully will be able to go home Thursday morning. Nicki started back on her blood thinner this morning. Thank you all for your prayers and encouragement.

Monday, August 2, 2010 8:51 PM CDT

Well Mr. Landon is as stubborn as his big brother. He has flipped again and is back to being breech. We realllllyyyyyy need him to flip back. With where the placenta is they may not be able to flip him and that will result in a c-section. To not have a c-section would be the easiest thing for me as they may have to give me blood anyways depending on how it all goes. Just want what is best for Landon and to get him here safely.

TOmorrow I take a big step......I will teach a wonderful group of 5th grade students. I am thrilled to be a part of the staff at Rockfield. I love being in that family and a part of the best school ever! I will say that tomorrow is very exciting to me but very realistic to me also........my big boy should be going with his mommy tomorrow to start K. I can not describe in words the heartache I feel of not going and buy him clothes.....a backpack......new shoes........all the things we would be getting ready for. I miss my Isaiah more than ever. I do know that school would have been different for him but I really think he would have loved it.

Well that is all I have in me for tonight. In 3 weeks we will be holding our new little one and I can't wait. They have scheduled the day so we are ready to go.

Nicki

Saturday, July 24, 2010 9:06 AM CDT

Well we have great news! Landon's stress test on Tuesday went great his little lines go everywhere. We had his ultrasound yesterday. The little stinker had finally turned and gotten himself in position. All in his timing I guess!!!!!!! He also weighs a big 6 pounds and 6 ounces. That is almost a pound in a week. He is one big boy!!!!!! They went over lots with me yesterday on what to do if i have any sign of labor. They want to induce me in 4 more weeks as long as i do not start to change before then.

Isaiah's room has been painted and now we can officially call it Landon's new room. The only thing left to do is take his closet down.

That is about it this week. Still appointments on Tuesday and Friday's like normal.

Wil update next week with how landon is doing. Or should I say with how big he is!!!!!

Nicki

Sunday, July 18, 2010 5:32 PM CDT

Well this week has been crazy and the coming week i am afraid will be just the same!!!!!!

Landon weighed in at 4 pounds and 15 ounces on Monday then by Friday the estimated him at 5 pounds and 9 ounces. All of these are plus or minus but obviouslly he is a very big boy!!!! He looks wonderful! He has chubby little cheeks and he is an active little fellow! They will deliver him in 5 weeks. The delivery should be able to be in Bowling Green it will all depend on how I do in between now and then. They are very hopeful that we can deliver here though. Please pray that Landon stays in until right when he needs to come out. They were going to switch me to heparin (blood thinner) but due to the dose they would have to give me they will have to keep me on lovenox. The problem is the injections i do now the drug has a 24 hour drug life and if anything were to go wrong they would have their hands a little tied for 24 hours. We are at a higher risk for several things but praying nothing happens. In another 2 weeks they will begin checking me and if i start to do anything they will go ahead and deviver then. HOping to make it to 38 weeks for Landon though. Another thing to pray for is that Landon will turn. He is still breech. They promise that once in a hospital setting they will try to turn him for me. The placenta is under him so that will complicate it a little.

TOday we put all of Isaiah's things away. Now i am VERY ready to paint the walls and get Landon's stuff in there. I do not handle an empty room at all in there. My mom and dad came and helped us and it is done. Hard hard thing to do but it is done. Now to paint this week and go pick up the furniture we got him and put the bed together that my parents got him. The bedding is here and we can really get things done in there. Then my family and my friends are having me 2 showers so we will be able to just sit back and celebrate the big guy.

I got news this week that I got a teaching job. I will be teaching 5th grade at Rockfield and can't wait to be a part of that family again this year! I will start the school year and then take off for Landon then we will have private people to take care of him while we work and all should go just fine.

Thanks for your continued support!

Nicki

Friday, July 9, 2010 7:47 AM CDT

Well we end another week. This week has flown by like several have lately. Next week will be VERY busy. We begin the week with seeing Landon kick around on a trip to Nashville that my sister will make with us! Then the following day begins my every week appointments but they are twice a week rather than once. He will have his nonstress test on Tuesday then his ultrasound on Friday to score the little fellow. Hoping for 8/8 scores! He is getting big!!!!! My belly just seems to be one big ball at the moment! We had a bit of a scare this week. Landon always moves around and you can predict his movements.....very on schedule. Well on Sunday night he barely moved for the fireworks in Morgantown which was odd he loved the sound on Friday ngiht. Then he didn't kick tim that night which is usually his and his dah's time after i go to sleep. I noticed the next day he still wasn't moving. I gave him until noon drank a coke and got into every position i could think of to make him move and nothing.......so we headed to the hospital. Luckily they hooked him up and there was that strong little heartbeat. So he started his nonstress test a little early due to his stubburn streak. Since then he hasn't gone long without moving so that is good.

Over all that is about it. TIm is studying like crazy for Captain. His test is the beginning of Sept which also falls when Landon is supposed to be here! Well Landon will probably be here the middle of August but he is trying to study all he can now. Then hopefully if Landon is here he can just review at that point while he holds the big guy.

Isaiah's chest is done. My dad and I have been working on getting his steamer chest just right so that his things can be put in it. Now we have to get it upstairs to the spot that will be his. Then Tim and I will take the time to put all of his personal things in there together. Hopefully by next Sunday we will be done so that we can call in the troops and get all of Isaiah's things boxed/packed or sit other places and start painting the room for Landon. We are getting close to the little fellows arrival so we need to get it done.

Basically that is where we are. I will post first of next week to let everyone know how the little guys appointments are going. It is going to be a very busy week so check often for updates. Luckily to a very generous person I can update from my phone so that will help me let you all know.

Nicki

Friday, July 2, 2010 7:51 AM CDT

Dear Isaiah,

The holidays seem to be hard but 4th of July is beyond hard. Wishing we were going to watch as many fireworks shows as I could find around for you. Your sights in heaven are so much better than fireworks I know so Momma will watch them here for us both. Miss you my sweet, loving, perfect spunky little one.

Love you more than I could know,

Momma

Wednesday, June 16, 2010 8:39 PM CDT

both of our appointments are done! Landon is 3 punds and 2 ounces already. he is in the 90%!!! One big boy just like his brother was actually bigger than his brother! Baptist will wait to see me for 4 more weeks to do the next growth check with Landon.

I went to my regular ob today and she is pleased. She will begin to see us every 2 weeks and after the 32nd week i have to go in twice a week. At that point they will start monitoring Landon's heart rate on Tuesdays and a stress test for him on Fridays. Lucky I get to do that in Bowling Green and do not have to go to Nashville every time.

So i am at 28 weeks and counting! We have picked his beddign out i just have to order it and his bed has been bought. Tim and I just need to go get him a dresser. Then we can begin the process. Giving the baby in my belly the room i always prayed would be his brothers forever. It is only fair to Landon to give him the big room with the built in shlef and nice toy box......and maybe just maybe having a baby in that room will be a help. It will always be Isaiah's room in my heart bt something i know Isaiah would want Landon to have. Isaiah loved to share and would have been the best big brother. He would probably have shared a room with him at some point anyways!!!!! So as the next few weeks pass pray that the strength will come. Some think I need to hurry so that the room is ready and i understand the reasoning but i also know that i have to wake up being ok and knowing that I am ready for that step.

I will update soon.

Nicki

Monday, June 14, 2010 9:38 AM CDT

I am going to see Landon today for my 28 week checkup. I smile as I know that Isaiah already knows his brother so well but sad that he can't feel him kick momma's belly and go with me today. I will update with a weight tonight and how the little fellow is. Tim is working so mom and dad are going and they are more than a little excited about that. They have seen the pics but today they can see him move just like they got to with isaiah. So excited for them they have been such a tremendous help to us they deserve a happy afternoon!!!!!

Please pray for all to be good and no suprises. Will update on sweet Landon tonight.

Nicki

Tuesday, June 8, 2010 8:26 AM CDT

Well it is a whole new month and seems to be sneaking well into the month. Seems hard to believe it has been 3 months since i got to share a new story with all of you about my sweet Isaiah. Never does a morning go by that I don't look for him and have to remind myself. Tim and I have days were we laugh about him and there are days when we cry for him. We do rest in knowing that if he had the choice to let us hold him again he would never turn back to us.

Landon is realllyyyyy growing in my tummy. Next week we will get to see him again. Hard to believe it has been 4 weeks again since we last watched him squirm on ultrasound. He is very active at certain times of the day and already has patterns. We are ready to hold him. Right now the goal is for me to make it to 34 weeks with him and anything after that will just be a little extra time until he gets big enough they want him to come on. They aren't excited about me delivering a 10 pound baby which is where he is headed so things will become very watched and managed with him. I am doing great and having no complications that are to concerning.

Anyways that is how we all are. Just staying busy. Trying to finish up projects on the farm that hang over us before landon gets here and remembering our boy everyday.

thanks for continuing to check on us and love us.

Nicki

Tuesday, May 18, 2010 9:57 AM CDT

Yesterday we went for my 24 week checkup in Nashville. Little Landon is not so little! He is a 1 pound 10 ounce chunk! Everything about him from the outside appears to be beautiful as they worded it. We saw his little fingers yesterday and a round little head. He is a very active thing!!!! So anyways all is well with him. We are just waiting on his arrival. As the weeks go by I am having to think about his room and stuff like that. As I start thinking about a nursery it forces me to think about taking a 5 year olds room apart. All that being said makes it a little hard. He deserves his big brothers room as it is the biggest room in the house and good thing is soon all of these toys will be back out. I will say he appeared to have a little button nose like Isaiah. So hope he looks some like his brother.

That is it for now. For any of you who didn't see it on wbko.com you can search fireman and find the hometown hero video that was done for all the guys that helped with the basement. They did a great job! BGFD is an amazing group of guys. Also a big thanks to the people who started it, electrician and plumber who all donated their time and supplies. Then to everyone that took off work to be down here to organize and all that spent their evenings here putting things back together again. Their is still a lot of organizing and things which I have been working hard on. Had some help in the evenings with that also. My goal is in the next month for everything to be good to go so we can get ready for Landon's grand arrival.

I will go 4 more weeks before my next ultrasound. I do get to start giving the injections in my legs so that will help my belly not hurt so bad.

until next time......

Nicki

Saturday, May 1, 2010 6:13 PM CDT

just to let everyone know the new baby is doing great. He moves around a ton!!!! He is to the point people can feel him moving now!!!!! He is a big boy and weighs in the 75th percentile which will be good so they can induce me when they need to! His name will be Landon. I know Isaiah would be so proud of him and is as we wait on him.

will update soon.

nicki

Friday, April 9, 2010 8:36 AM CDT

So where do I begin to update this web page that now seems to me I have nothing to say when before I could type forever. We have shared our boy in words on this page for sooo sooo long now. I could share now how heart broken we are, how hard it is to put one foot in front of the other or how much i just wish i could kiss those checks again. Thing is all of you know that about me and Tim. You know that we are lost without our saiah saiah. Maybe some day I can share more of those feelings but for now it is just to hard. Logging on is a challenge for me so sharing my feelings is just something i can't.

I think we will keep this webpage going to share Isaiah's sibling with you. He would want that. We find out on April 19th if this little person in me is a boy or girl. We think we have names picked out already and will incorporate its big brothers name into the name. I am doing ok. Seem to be getting bigger everyday but that is ok just another sign of life again. I feel the baby move alot these days. I could feel it early just like i could feel isaiah early but it was only at special times when i truly feel God gave us hope through it. So needless to say things are moving along here.

I want to take a minute to thank more people than i would even know to thank on the completion of our basement. BGFD and many more came and worked so hard while we went on a short vacation. THis project was started a couple years ago and was going to be for Isaiah to have a big therapy area. Needless to say even going down to do laundry was hard because i regretted what didn't get done and all that he could have had down there. Right from the beginning people donated time when a Bowling Green church framed it and built barn doors for us. A wonderful electrician in BG did all of the work for us and donated the supplies. Then in a week BGFD and family came in and finished it up. My dad completed all of the cabinet knobs and door knobs this week while we camped. Tim has a few light fixtures to hang then we are down to the floors being painted. Obviously we had to change the goal for the extra area. Now it will be an extra bedroom, has a bathroom, a living area, and my favorite part a canning kitchen. It will be so nice for me and the new baby to come in and bring the vegetables from the garden in the basement and can down there. We do have to still go get a stove and fridge but we just have to take the time to do that!!! Anyways huge thanks to all the hands that helped and all the people who helped think about what to do. You could never be thanked enough.......

Also thanks to all who sent us on vacation. It was a relaxing time and gave us a little time to just think. All of you also know who you are and we love you all for what you did.

We do have Isaiah's celebration video recorded and soon I will upload it to where all who are out of town can view his celebration.

One last thing.....If anyone knows anyone wanting to buy our van please let me know. 04' pontiac montana van with 139,000 miles most of which are highway miles. I haven't been able to drive it for 4 weeks and it is still at my parents house. We have some leads on another vehicle and just pray all works out i also need this behind us.

thanks for your loving support.

Nicki

Thursday, March 11, 2010 8:06 PM CST

Thank you all that have supported us in the last few days. His funeral was perfect for him. We made it a celebration for him. It is going to be very hard without him but we find peace in knowing where he is and knowing that things are much easier for him. We buried him about a mile from our farm in a small cemetery overlooking a wooded area. It is a very peaceful place and I know he would love it. He had 2 doctors speak at his service that he loved very much. There were several of his nurses and respiratory techs there as well. To all of the Vanderbilt staff, thank you for everything you did for my son in his 5 years with us. The BGFD honor guard was there and they were amazing. My engine company was in the funeral procession and I know Isaiah was smiling from ear to ear. Nicki spoke at the service and she was amazing as ever. She is such a strong woman. We all are going to miss Isaiah and things are not going to be the same without him but we have to be happy for him. He fought so hard for 5 years and we couldn't be prouder of him. We all will hold onto our memories and will cherish them all. Thank you all for everything. So many people have helped in many ways and if I tried to name them all I would forget someone. Just know that we appreciate everything and we love you all. Isaiah was a great boy and touched many lives in his short time. There were between 800 and 1000 people in the funeral home Tuesday night and around 500 at the funeral service on Wednesday. My boy was so loved. We will continue to update his site occasionally and keep everyone updated on our new baby that is growing by the day.
Spread your wings and fly sweet Isaiah. Momma and Dah love you very much and we will meet again some day. We had some great times and I will never forget them no matter how old I become. I LOVE YOU!!!!!!!!!!!!!

Sunday, March 7, 2010 6:49 PM CST

Visitation Tuesday March 9, 2010 from 2 p.m. till 9 p.m. at J.C. Kirby and Son Funeral Home Lovers Lane Chapel. Bowling Green,KY.
Visitation Wednesday March 10, 2010 from 9 a.m. till 1 p.m. with funeral following at 1 p.m. at Richpond Baptist Church. Bowling Green, KY.

Expressions of sympathy can be made to:
Richpond Baptist Church childrens ministry.
200 Brad Avenue
Bowling Green, KY 42101.
or
Dream Riders Therapeutic Riding
c/o Sue Sharp
109 McPherson Cemetery Road
Lewisburg, KY 42256

Saturday, March 6, 2010 10:29 PM CST

Isaiah went to be with Jesus at 7:48 tonight. He had a major stroke that damaged his brain beyond healing. We removed care and he died peacefully in Nicki's arms. We will forever miss him but he has healing that no medicine can ever provide. Someone will update tomorrow with the funeral arrangements.

Saturday, March 6, 2010 2:53 AM CST

What do I say???? Isaiah had a CT on Friday afternoon due to the fact that he was continuing to have high fevers and also because he wasn't waking up off the sedative like everyone thought he should. The CT shows that he has either a large abscess or he has had a stroke that covers the majority of the right side of his brain. His symptoms point to a abscess which means he has a major infection in his sweet head. He is completely off the sedative now and only on a small dose of pain meds to keep him comfortable. He has opened his eyes a few times but most of the times he has just laid there. He has only twitched his thumbs and right foot a few times. Later today we should have some definite answers. The attending on the floor stressed to us that this is very bad. He is breathing over the vent a little but we have noticed he is having to work harder than 24 hours ago. I ask that you pray for comfort for Isaiah. Pray that Nicki and I are able to make the right decisions and for us to do what is best for Isaiah and for us to remember his quality of life. Today will be a hard day and pray that his doctors are understanding and that they can put medicine aside for a second and to understand what is best for my son. Thank You all for everything. Someone will update later today.

Thursday, March 4, 2010 8:52 PM CST

Today is a day of a few steps forward and a few steps back.

Isaiah has tolerated being put on "normal" child settings and coming off of the nitric. There was concern on the length of time to keep him on it and at the pressures he was at on the vent. He is still on vent support and doing very little on his own. he is holding his oxygen levels up today in a safe level of oxygen from the vent. His blood pressure actually started getting a little high today he is off the meds but they are still ordered for you never know where his bp will be. Today they removed the paralitic in hopes he would respond some. All these are baby steps in the right direction although we are a long long way from calling him "better". We are cautiouslly optimistic if that is a word!

now for the steps backwards. Isaiah has grown mrsa from his ear. He has also ran a pretty good fever for most of the day. He has not responded the way we were hoping when coming off of some of the meds. TOmorrow there may be a ct and spinal tap to be sure we are still headed in the right direction for him.

Tim and I are doing as well as we can. Loving our little boy and spending time with him to make sure he doesn't feel alone. I wish there was more people could do to help but praying for him is all i know to tell you. Pray that the doctors will guide us in the correct direction with his care. We just want what is best for him. Making sure we are doing for him and not to him. The new baby is growing everyday trust me i am getting BIG. I also have felt it move this week so that has given us so much in the hope of life.

Thank you for all of your support. So many people have helped us in so many ways this trip and there are so many prayers holding us right now. we will update tomorrow.

nicki

Wednesday, March 3, 2010 9:03 PM CST

Not much change today. They have been able to wean his oxygen down to 65%. It is going to be a slow process and they are going to be very conservative with how fast they try. Isaiah will tell us very quickly what he can and can not tolerate. He is still heavily sedated and paralyzed. His abdomen has swelled drastically. They ran an ultrasound today and his abdominal cavity is full of fluid. It is possible that he is so sick that his body is not absorbing the csf that is draining from the shunt. We should know more in the morning if that is what it is and if he will need a drain placed into his belly to drain some of it. We will update tomorrow with the latest. Going to go enjoy my boy and wife. Tonight is my night to stay in his room:)

Tuesday, March 2, 2010 10:23 PM CST

Not much change today. Isaiah is still very very sick. He is extremely swollen. The vent is on 100% oxygen right now and he is still keeping his oxygen sats around 88 to 89. He has had several spells of dipping into the lower 80s to upper 70s and wanting to hang there for a while. BP is still being held steady by 2 drugs. He is so sick. Please pray for Isaiah and for what is best for him. Nicki and I have been switching out sleeping in the room with him. Tonight is her night but I am having trouble leaving him to go to the sleep room. I just want to pick him up and hold him and be able to read him a book and for him to look at me and say "Da". He is the most perfect thing I have ever saw and I am so thankful for every minute of our time. It has been the best year in him not being sick. He has progressed so much in development and I couldn't be prouder. We had so much fun vacationing to Gatlinburg, camping at Land Between the Lakes, and sledding a few weeks ago in the snow. I have loved having "daddy" time with him at least one day a week while Nicki worked. I think I have bonded with him more because of it. Nicki told me I needed to not worry about working so much and enjoy our time. My wife is my rock and I am so thankful that she talked me into it. I love him so but I know our Father loves him more and he is the one that is in control. Thank you all for signing his guestbook. There are so many people that love my special son all over the world. Someone will update tomorrow with an update of my precious boy.

Tuesday, March 2, 2010 9:01 AM CST

Isaiah has meta pneumo virus. That could be where all of the problem started from. To most it is just like a cold but it has gotten ahold of Isaiah and has him really sick. It is probably what triggered the ARDS. It is like the "new" RSV. His chest xray this morning looked worse (more fluid on the lungs). They had to increase his bp meds around 1 this morning. They are going to start him on TPN and lipids for nutrition. They are also going to start a few more things. His blood gases are still on the high side. We will update later today with an update.

Monday, March 1, 2010 3:53 PM CST

Isaiah has ARDS (acute respiratory distress syndrome). This can be brought on by several different things. The way I understand it is a syndrome that is kinda like a side effect of something. Most likely for Isaiah, some bacteria or virus. It means that his lungs are leaking fluid into themselves which is preventing him from keeping his oxygen saturations up and his carbon dioxide levels down. It is rough on a chronic kid like Isaiah. His ventricle that the shunt is placed into is dry so they can't pull any CSF to do a culture to rule out an infection there. They may try to do a lumbar puncture to obtain some fluid but not today because he is not stable enough for that. Will update later.

Sunday, February 28, 2010 10:24 PM CST

Isaiah has had a rough day. Nicki and I got some rest last night at a hotel while her mom sat with Isaiah at the hospital. They added nitric oxide this morning at 5:00 to help his oxygen saturations raise. When we got back he opened his eyes some and looked at me and Nicki. We talked to him and within 10 minutes he started to decline. His oxygen saturations dropped to around 70. The nurse unhooked his vent and started bagging him but they stayed around 70. 3 doctors, 3 nurses, 2 respiratory techs, and 1 hour later they stabilized him. His blood pressure has dropped so they have added a drug to raise that. He is a VERY sick little boy. He has had his share of bumps in the road but this one is huge. Please keep him in your prayers. We will update tomorrow with the latest. I like to remember a saying off of a picture frame we have with Isaiah. "Life is not about trying to avoid the storms but learning to dance in the rain." Goodnight to all and thank you for everything.

Saturday, February 27, 2010 5:35 PM CST

We are in the ICU now. Isaiah is a very sick little boy. He definitely has pneumonia and he is having to be on a ventilator to assist his breathing. He is on 90% oxygen through the vent but he is still able to only hold his sats around 89 to 92. He is being continously medicated with motrin and tylenol for his fever which is hanging around 102. The Infectious Disease docs want him to have 24 more hours on these new antibiotics and if nothing changes, they will re-evaluate. He is starting to get swollen especially on his left side. I am not sure when we will learn anything new but we will update tomorrow with an update and sooner if anything changes.

Saturday, February 27, 2010 4:37 AM CST

Isaiah has had trouble all night with his breathing. He has been very labored. His oxygen levels want to stay 75-82 and they are fighting to keep them above 90 on 90% oxygen which is a lot. They then called a rapid response for the icu to come evaluate. From there they decided quickly that he needed ventilated support and he was just to sleepy to do it on his own. We are in the er in a trauma room waiting on a room to open in the PCCU. They are knocking him out so that he will rest on the vent.

will update more later.

Friday, February 26, 2010 8:57 PM CST

Isaiah has not had a good day today. he has had little awake time and his temp has still been up. they have changed his meds again to try to help him out. if tomorrow he is not showing signs of improving they will evaluate him again. they are leaning towards neurosurgery getting spinal fluid. ID (infectious disease) is concerned he has more than just the pneumonia going on. at the moment he can't lay on the left side because it makes his oxygen really go down. his left lung is the worst. he is a very sick little fellow.

thanks for the support.

Wednesday, February 24, 2010 7:04 PM CST

They do now feel that Isaiah's chest xray is showing pneumonia although there isn't like a certain spaces. Both lungs appear to have a cloud over them. He is still not awake very much and still spiking fevers. Tomorrow will determine if they have to investigate further. If he continues to spike high fevers 36 hours after top gun antibiotics and tamiflu to cover viral then something else is wrong.

Thanks for your support.

Wednesday, February 24, 2010 6:19 AM CST

Isaiah was put in the hospital yesterday. All weekend he hasn't felt the greatest. I went on to work on Monday and Tim went to the pediatrician with him. Saturday he had an ok day just high fever and very sleepy. Sunday he was awake very little and just out of it. On Monday when tim went with him he really seemed to be turning around some. He saw his normal doctor and she did bloodwork and chest xray.

At that point we really thought something viral and he was going to turn that corner. I was going to work a half of a day that next day and his babysitter watch him for half a day. When i got him up and i started getting ready it started becoming obvious he wasn't going to wake up and be as spunky as he was the day before.

We got to the pediatricians office and did a chest xray. His normal pediatrician was not there but she came in to do paperwork and check on him. At that point she never left him. He just wasn't with us at all. Neurologically he just seems was out there and not to completely know what was going on. THey then drew his labs and for the first time in his little life they called an ambulance to take him from the 100 Oaks offices at Vandy to the Children's HOspital. He has been flown but never in an ambulance but he was a very good boy about it.

So we are now admitted into children's. huge thanks to my mom for coming last night so tim and i could run and get clothes. I just left with him yesterday not even thinking to take anything with me. Today we wait and see. Last night his temp was 105 and 103.7 the rest of the night. This morning he is actually awake for the last 10 minutes but already yawning again. He does not want us to touch him or be right there at him. Basically we have no idea what is going on. HOpefully we will very soon though. they did another chest xray this morning. There was some clouding on it yesterday so maybe if that is what it is there will be something obvious today. THey have him on 3 very strong antibiotics and started tamiflu although he tested negative.

Huge thanks to everyone at university pediatrics for all there efforts yesterday. As sick as he was in my arms I was ok because he was there. Also thanks to Sarah who went with me since tim was working.

will update today.

nicki

Wednesday, February 24, 2010 6:19 AM CST

Monday, February 15, 2010 9:41 PM CST

Well we have big news to share!!!!! Isaiah is going to be a big brother!!!!!! I am due September 6th! Which puts me at 11 weeks and 4 days. I am sorry for the delay in announcing this we just wanted to be sure all went well!

So here are the details. When I found out I was pregnant a friend wanted me to see her ob. When I walked in I felt comfortable with her. She decided to do her own bloodwork and not to go off of any from anyone else. Long story short they have found a clotting disorder with me. Due to my stroke and the bad spell i had in October they were sending me there anyways wanting to keep me stroke free. WHen I arrived at Baptist they let me know of what was going on and how to handle it. They are very confident that in their treatment at this time. They feel that me and the baby are safe. I do have to give myself a shot in the tummy once a day. They also have me on a baby aspirin, extra calcium, extra folic acid and my normal prenatal vitamin. I do want to stress they really think i will be fine. Not sure where we will go with this after pregnancy but i have several months to not worry about it. At least they can get the tia type spells under control!

Another thing i want to type is that this baby appears to be very healthy. The chances of this baby having Aperts is 1 in 200,000 just like anyone else. Even if tomorrow they found abnormal results I would never find that to be wrong just different and we are all different. We feel very blessed at the possibility to be pregnant with a healthy baby. After living the world we have for the last 5 1/2 years that is not something i take lightly. A healthy child is nothing less than a miracle and a child in general is a miracle and blessing from God. Thank you so much for understanding that and supporting us as you always have.

i am so glad to share this news with you. the blessing ahead are very excited! I will have an ultra sound every 4 weeks and in the last trimester every week. THey have to make sure the placenta stays in place with all the blood thinners. At least there are lots of chances to see this sweet baby! The baby was a wild cat today during the ultra sound! She was everywhere!!!!! It was so neat to see and have that joy again.

Thanks so much and thanks to everyone who has supported me the last several weeks until I was able to tell everyone. Thanks for all the support everyone will give us with this!!!! We love you all and are so glad to share our blessing!!!!!!!

Monday, February 8, 2010 5:04 PM CST

Where did January go!!!!!

Isaiah has been doing great! Coming off of phenobarb (seizure drug) in the fall has made a huge difference in him. He has just seemed to come to life with things. He is doing so well with learning to walk assisted and he just wants to do more. Cognitive skills seem to be developing quickly!!! I love watching this growth in him. One thing we all know is that Isaiah will always have severe delays but the progress he makes is so huge and must be celebrated!!! Last week he had to go to the doctor due to lots of chest congestion. His lungs were not full just lots of "junk" in them.

That day we also picked his glasses up. We then went to ent where he refused to do a hearing test. He just kept looking at me laughing like what are they doing! So that means they will do it with his next sedation. The ENT is a little concerned with Isaiah's hearing and the look of his ear drum. He has already brought up the idea of hearing aides. SO all of that being said there were lots of things to take in that day!

Isaiah is doing ok with his glasses. We are all working hard with him to get him to wear them. I have actually gone back to work. I was just part time but I have now taken a long term sub position. This will be something that should take me through the end of the year. I am so excited about it. I have a great group of kids and a great team to work with!!!! I am so lucky to walk into a position like this!!!! As far as next year..... Tim and I are trying to figure out what to do with me working and Isaiah and him going to school and the list goes on!!!! Please pray for Isaiah as this is very different for him but something he is doing wonderful with. It is helping him and his dependence to me. I miss him so during the day but love being back with kids during the day!!!!!

I will update next week.

Take care and thanks for your continued support!

Nicki

Saturday, January 16, 2010 6:47 AM CST

Isaiah had a wonderful birthday!!!!!

He woke up and we sang to him! THen we all got ready and headed to Nashville. On the way we stopped so his papa could play the guitar and sing to him! We then went to the rainforest cafe for lunch. He loves that places!!!!! He just waits for the thunderstorms! He then got to ride the train around the mall and ride the carousel. A few of his friends went with him and it was a great time!

TOday we are having a party at our church for him and his friends. Turning 5 this will probably be his last Big party and it will then turn to family parties! Next year he will have classmates to celebrate with!!!! THe theme for his party is rock n roll! There will be several guitars and even drums!!! We are really excited and know Isaiah will love it. He just loves music!

He got good reports from Vandy after our 2 days of appointments. Plastics and Neurosurgery are giving him a whole year before they even consider anything for him. That is wonderful news. He will have to have glasses. We are waiting on them to come in. All of us are hoping that the difference will be significant enough he wants to leave them on......one will see!

That is about it. All good news really he is doing amazing and walking more everyday! Many blessing as we go into 2010 with time for lots of fun activities!!!!

Nicki

Monday, January 4, 2010 9:28 PM CST

OK things have been soooooo very busy!!!!!!

Starting back to work for me part time has been very busy for all of us. For so many years we have had it to where I was always home and now we are all adjusting. Isaiah is doing well with it.

Christmas was as always busy. I made a lot of candy this year although not as much as normal. There was plenty to take places just made it a little later! We had lots of time with friends and family to celebrate the birth of Christ. Isaiah for the first time seemed to enjoy the festive times! He handled the bigger crowds better and liked opening gifts. He is cute though because all he wants is one or two!!!! That is all he got from us since we are trying to finish the basement and need to build him a swing set outside for the spring!!!! Honestly he is happier with a little than a lot! HOpefully next year he will be up and going where he can go enjoy more at church and stuff like that. He is just VERY vocal right now to say the least.

His development is huge right now. We were at Vandy today and we held under his arms for him to walk down the hallway to go to the room. That is all he wants to do is go!!!!! He also let tim take one hand and me take the other today at the hospital and walk him. That was a first. One day at physical therapy he decided to walk 55 ft. with little assistance! He needs you under his arms or with his wrist but he is doing it!!!!!!! Hopefully by his next birthday (6) he will be walking on his own!!!!!! Such a big 40 pound boy he is!!!!!!!!

TOday we went to Vandy for a check up. Dr Kelly says it is safe to let him go another year and evaluate him again then! That is very exciting for all of us! He wants to give him time to develop and just be a little boy! I am great with that. Lots of fun for us this year to say the least!!!!!!!!

Tomorrow are more follow ups and the important is his appointment with the eye surgeon. HIs vision seems worse and it needs to be addressed.... so we will see.

Other than alllllll of that we are good. My big man turns 5 in a week. it is hard to believe that 5 years ago we were so blessed with our little miracle. A long road he has had but he is the sweetest most loving little thing. I tell him all the time i could just squeeze his cheeks off and he grins and says mama!!!!!!

Will update sooner than later this time. Life will be lots less busy for us now!!!!!! Always busy but the holidays are over for us then! Hope you had a blessed holiday season we did and we are excited with what 2010 will hold for us!!!!

Nicki

Wednesday, December 2, 2009 5:17 PM CST

all is well around here! Isaiah is feeling better with a very few coughing spells. He goes back towards the end of the month for another chest x-ray to see how well his little lungs are clearing.

Since being home we have been very busy. I am still working 4 hours a day and Isaiah is adjusting to this being our new normal. We have been on a search for people to help with Isaiah's care. We are hoping to keep him at home as much as possible and it looks like our prayers are being answered with some wonderful people to help with him.

Our thanksgiving went great! We had my whole big family down here like we have done for the last several years. It was a lot of fun and the food was great. We have so much this year to be thankful for. My dads kidney and Isaiah feeling so well are just a few!!!!!

Isaiah is progressing in his walking. Being sick has set him back some but overall he is really doing good. He is back up now and trying to get back to where he was. If you hold under his arms you can get him to walk from the living room to his room. Or anywhere for all that matters!!!! We are really proud of all his progress and just can't wait for him to be able to walk on his own! He is getting really tall. When he stands up to me he is up to my waist but I guess he is soon to turn 5. Where has the time gone!!!!!!!

So that is about it for us. There are lots of appointments coming up in January for Isaiah. He will see his plastic surgeon, neurosurgeon, eye doc, neurologist and one more I think...... So it will be busy busy times. Not to mention all of the holiday activities coming up. We are just going to try to take it all slow so we can enjoy the season!!!!!

Nicki

Sunday, November 15, 2009 10:46 AM CST

we are going home today. they are still very worried about what is wrong with him but he is now stable and they know he will rest better at home.

so we are waiting on discharge papers and then we will be headed to chandlers!

i will update when we get home!

Saturday, November 14, 2009 6:17 PM CST

well Isaiah is off of oxygen today. He may still need it tonight but I was able to take him all the way off today. THey have switched him to an oral antibiotic and may let us take him home tomorrow.

He is just not resting well here and needs to be home. He still feels awful but they talk like that will be the case for a long time. He still has a fever which he could keep for 14+ days. No real answers as to what is wrong besides some basic stuff.

I will update tomorrow. gotta run right now

Friday, November 13, 2009 3:19 PM CST

Isaiah is still about the same. He is awake more than he was yesterday so that is improvement. They are still waiting on cultures to grow.

His nose came back viral.
Ears came back with a bacteria of some sort.
Eyes came back with a bacteria of some sort.

So there are basically 2 options. The same viral bug in his nose is in his lungs or the fungus they were suspecting will end up coming back on the culture. Really they aren't sure.

He still has a fever. They have been able to cut back on his oxygen some. I have had him sitting in the bed some and hope to practice putting some weight on his little legs later this evening.

I went home late last night and slept a few. Then went to work this am. When I got back tim walked out the door to go to work and then work on the farm tomorrow. HOpefully we will all be here on Sunday together! If for some reason viral came back on the culture he will get to go home soon. If it is fungus he will be here a while. So we will wait and see.

Thanks for all the prayer and support. We have had such a break from here that it is hard to think we are back doing this again. I know he would so rather be home on the farm. HOpefully very soon.

Nicki

Friday, November 13, 2009 3:19 PM CST

Thursday, November 12, 2009 3:50 AM CST

Where do i begin.......

Isaiah has been doing great. He was a fireman for Halloween and was sooooooo cute! He has been to several play dates with friends and I have even started teaching part time.

Yesterday Isaiah was admitted into the hospital around 2pm. He has not felt the greatest since Thursday. THe thing is he would get a high fever then it would be gone to where you thought he was better. HIs lungs sounded good we went on with things for the weekend but he kept spiking 104 temp occasionally. So then we thought something seems wrong. We brought him back to the doctor on monday and the temps were more consistent by then. She let us go home but doing breathing treatments every 2 hours and on antibiotic and steroids. At this point his lungs were not doing well. Tim's brother watched him on Tuesday while we both worked and by the time I got off he seemed to be worse. This seemed to be progressing by the hour. Tim brought him down for a chest x-ray yesterday and what we thought would be a change of antibiotic turned into a admission.

For some reason Isaiah has something wrong with his lungs. They are full and they are trying to figure out what it is. I wish I could be more detailed but I just can not they are not sure.

At this point all I can do is ask you to pray for his comfort and the strength to fight the way we know that he knows how. He is sleeping a lot which is good he seems to breath better and not fight himself. We should know answers by mid afternoon. Obviously right now he isn't resting the best because I am up typing. sorry if this makes little sense. I am very sleepy and honestly not thinking the best right now.

I will update when we know something or if something changes.

Nicki

Saturday, October 24, 2009 9:30 AM CDT

THis week has gone well. Isaiah has had lots of play time and lots going on. On Thursday we went to Louisville to have a quick visit. We went by Harrison's house and gave him his b-day gift and then we went to his Aunt Amandas!!! Him and Calvin were sooooooo cute together. We went up with several things for Calvin and Isaiah loved showing him how all of the toys worked! Then we got to watch him for a little while so that Amanda and Drew could go to a rehearsal dinner. We loved our time with him.

Earlier in the week Isaiah did have a small episode. He had what appears to be a seizure. This was one I had not seen him have before so it was a little scary. I contacted his neurologist and they are going to continue to keep him coming off of phenobarb but we have went up on his other medication. I have not seen any activity since Tuesday so that is good.

Besides that things are great. For Halloween Isaiah is going to be a fireman! We have the costume and his BGFD t-shirt for him to wear so that will be fun. He has a metal fire truck he will ride around in so that he can go with the other children.

Isaiah's walking is also beginning to develop. He is standing very well up against things. With assistance he will go across the room but screams half the time. I really think it is a confidence issue for him. Please pray for him that he will gain that confidence and strength. He is really developing with it and we can't wait to let him do it all by himself!!!!

I will post Halloween pics next week. Have a wonderful week and enjoy the color in the trees! Our farm is so pretty right now!!!!!!

Nicki

Monday, October 12, 2009 8:30 AM CDT

ok so I have not put an update up in a while. Life has just been busy!!!!! No excuses I should have updated thanks to the girls at FSA for reminding me I was behind I need a reminder(trust me i do).............

Isaiah's probe results have come back and as crazy as this may sound they say his acid levels are normal.......I mean really how is that. A little frustrating for me and Tim who smell acid from him once a week and watch him scream with it. I am going to talk to them about what to give him when it is obviously high which is once every week or two.......

His phenobarb is down to 4ml so just another few weeks and he will be completely off and then a few weeks to let it leave his blood all together. We are excited and ready for this drug to be gone! We will always have to have some around here just incase he needs a big dose in the middle of a seizure.

His latest problem is a bacteria infection in his little belly. We are treating that with antibiotics and praying that makes it better so he doesn't need IV.

Other than all of that medical stuff we are all soooooo happy and having fun!!!! The last 2 weeks have been fall break for Isaiah and the last week fall break for all of his buddies. We had a sleepover 2 of those nights at Clay and Wills. The last 2 nights Madison and Emma have stayed here. Yesterday we spent 4 hours outside enjoying the weather and picking pumpkins and gourds out of our patch. Isaiah actually sit in the grass for the first time.....this is really a big deal being that he hates the feel of grass.....working past some of his sensory issues i guess! This last week on a rainy day we went to the aquarium to eat.....he liked all the fish and we rode the carousel. Opry Mills is a fun place! We have also been to Jackson's Orchard which he LOVED and went to the annual fire prevention night at Home Depot. He thought that was grand fun and even wanted out of the stroller to sit on the concrete to watch the clown show with everyone else!!! Yes my little boy is getting big.......so very big :( We actually put him in a big boy bed also........Thought we may have to do a special bed but his seems to be working so we are glad for that.

So that is our life the last little bit! I would ask you to pray for decisions we have to make. As Isaiah gets bigger we have to start thinking about school more and more and as he stays out of the hospital the prospect of me going back to work next year has been a big discussion in our home. These are big hard decisions where really there is not a right answer........So I just ask you to pray for us and if our life is to change some that we accept that and it only enhance our time together.

Take care and I will update soon.......promise!

Nicki

Thursday, September 24, 2009 1:45 PM CDT

It is Thursday and both of my boys are still fever free!!!!! I have been without a fever since mid day Tuesday so I am really starting to feel better. Tim did take me to the doctor on Tuesday afternoon and I did test positive for influenza A. I knew I had the flu but then got my tamiflu to help it out. They are treating Isaiah and Tim with it also and I think that has helped them from getting it.

The probe came out of Isaiah's nose and he did fine with it. His Daddy even went and got him a big frog balloon there at the hospital for being so brave!!! I felt horrible not being able to go with them and being so little help Monday until I figured out I was sick. One thing I know is Isaiah has a great Daddy and they did just fine without me. I mean really would mommy have bought the $10 balloon!!!!! Isaiah and Tim have been doing lots together this week and I have been resting lots. This really hit me hard and I also wanted to stay away from both of them as much as possible to protect them from this nasty bug. I wore a mask when in direct contact with Isaiah and we have used tons of hand sanitizer. Last night I felt well enough to get up and cook and do some laundry. Tim protested the whole time but it didn't hurt me!

Now we wait on Isaiah's probe results and pray they see exactly when his reflux acts up. It is not if it does it is if they caught it........ The new tube in his ear seems to be functioning well. When we know news on the probe we will post it. If they have not called by next Tuesday then I will call them.

I think that is it. Just trying to get back in the grove of everything and back on the normal track. Thank you for all your prayers as we faced this week and the unexpected part of this week. Now to move forward!

Nicki

Tuesday, September 22, 2009 1:56 PM CDT

This will be very short......it appears i have come down with the flu (could not get myself to the doctor but Tim says it has to be). Poor Tim is having to take care of me and Isaiah with his probe and all so i didn't want to have to ask him to update this also.

Probe went in fine (huge praise) and they only replaced one tube. They left the other one out because he has a hole that is acting as a tube. TIm went back to Vandy this morning with him and had the probe pulled out. Isaiah was happy to have it and the nono's off(things on his arms to keep him from being able to reach his nose)......we will have results in 1 week.

OK i will update more later i have got to get back to bed Tim is off to get pediasure for Isaiah and a baked potatoe for me. Thanks for all you support. Pray that no one else in the house gets what I have.

Sunday, September 20, 2009 9:50 PM CDT

So sorry I thought this had updated at the end of the week then i went to it and there was nothing......maybe i dreamed it who knows!!!!!

We have had an amazing weekend. We went on our first camping adventure!!!!!! The three of us my friend Brooke and her boys and her mom all went. Lucky her mom has a camper we can use!!!! We went to Wranglers down at LBL and had a great time. I have a new horse and was able to trail ride a lot. It was soooooo much fun and so nice to be riding again. This is the first real ride I have gone on since my stroke and finally decided I was going to learn again to do something I love!!! Isaiah had a great time hanging out and playing. We are already planning a few more trips!

Quick note. Isaiah will go to Vandy tomorrow to have a PH probe placed and tubes in his ears. We were going to just stay the night tomorrow night but I think we will just come on home. We have to be back Tuesday morning for them to remove the probe. Please pray that they will get the information they need from the probe on his reflux. It is just awful these days and I just hope they will see that. Every once in a while he will have a few days where it is ok just hoping tomorrow is not one of those days. Not that I want him to hurt just want them to get the information they need.

Well I need to get to bed we have to leave no later than 7 in the morning. I will update tomorrow night when we get home.

Thanks,
Nicki :)

Wednesday, September 9, 2009 8:44 AM CDT

Where do i start for the lack of an update........

First off Isaiah has not been feeling well. Allergy season is just awful for him and when ragweed goes full force ahead so do his little lungs. For some reason runny nose and what seems to be simple allergies fills his little lungs. But 2 different medications and breathing treatments and he is atleast up and going. Still a little weak and now his ears are very full but hopefully the antibiotic will clear them and all the sneezing will keep the stuff flowing out.

Then on Monday morning very early we had a lightening show. Usually i think oh well but when the house takes a direct hit it is about enough to put you over the edge. So our telephones and home computer have to be replaced. I can fill it through home owners but it just stinks having to meet that deductible and not to mention a lot of our outlets are a little black. The good news is Isaiah was safe.....makes me nervous him hooked to all of his machines when the telephone line and electric work have electricity going through them like that. The house smoked some but thank the Lord did not catch on fire....lucky tim was home so i could check isaiah and all his machines and he could get in the attic and basement to be sure nothing was on fire..... we are safe and that is all that matters.

We have been very busy lately. There have been sooooo many things going on and things to do. The garden is about done. I still have lots of tomatoes so that is good. I have made lots of salsa and spaghetti sauce thanks to some great recipes from friends. If I just had more jars!!!!! We still have several watermelon although they need to come on out. We also hae tried pumpkins this very. They are doing pretty well and i am learning lots about them......my goal is to in the next couple years be able to have a petting zoo and pumpkin patch. Tim thinks I am crazy but I really think it would work!!!! As much as Isaiah loves the animals and taking care of them it wouldn't be any big deal to maintain them throughout the year I mean we already have most of the animals and in the process of looking into a few more!!!!! It would also be a good second income.....one will see what works out!

Isaiah is really developing after coming off of his phenobarb. We are down to 8ml from 22.5ml so we are getting there. Such a slow process....... I am seeing a lot more from him as far as cognitive skills and his physical ability. It is no secret that Isaiah will always e behind and have sooooo many obsticals but as I have said so many times before we have to do what we can and have high expectations for him. Really all I want is for him to be happy and be able to walk. He is standing out of a chair all by himself now so I really think that will come. He is very into all of the farm things right now. When we had Isaiah we had to decide what to do about the farm.....do you keep it and work as hard as you can or do you sell and take the profit and buy a house closer to Nashville. I will be honest with you it would have killed me to have given up my family farm....Tim knew this and we decided to work as hard as we could to keep it and make it work. Watching Isaiah on this place and the way he loves it makes it all worth it. He may never hold a public job but he can take care of his things here and feel that he has such a purpose. I love seeing him get eggs out of the boxes, taking care of his pony, throwing feed to the geese and laughing at the cows as they make lots of noises and get so close he can almost touch them!!!! So long story short he is developing and we are so excited. He is answering yes and no and really showing good signs as the drug levels in his blood start to go down. And as for us we will keep on making things possible for him. We are trying to set up a therapy room in the basement. I have found several things online that I can use and things we can make for a portion of the price!!!!! I think once we can get that done he will develop even more. It will be nice for him not the sensory room I would like but it will be what he needs and that is all that matters. We can add to it as we go.

Well he has therapy that will be here any minute. I need to get meds in him and get him ready. THanks to all who continue to follow him on here. When I forget to update in the times that are just so normal and then have people say why havent you updated it lets me know people are still following. I will promise to update every week so you can keep up with the progress our little fellow is making!!! I havent been the greatest over the summer but more updates will come soon!!!!!

Nicki

Tuesday, August 18, 2009 9:54 PM CDT

Sorry it has been so long. Where has the time gone........

Isaiah has been doing very well. He is spunky and seems to be doing well with the weaning of the phenobarb. His sitting balance is amazing. He gets on his Thomas ride on and goes all over the house. I don't even have to worry about walking right beside him. His standing is improving day by day. Some days he fuses more with it and other days he does better. I have got to get him some type of bars installed here at the house to practice with him. He is starting to cruise around the table at PT. Please pray for him as he gains confidence. His little legs are still a little weak but really he needs to know he can do it.

Since my last post Isaiah is back in full swing with therapy. School has started and with that so has the homebound therapy that he gets. He is also enjoying having some play buddies come during the day a few days a week. We are starting to do preschool in the mornings here and he is enjoying that. He still loves all of his animals and being with them. This past weekend he let his buddy Will borrow his pony for Will's birthday party. Daisy did great with all the kids on her and it was a fun time. We have also celebrated tims birthday. It was a great day......He stayed around the house then his brother and a neighbor came over for cake. After letting Isaiah spend all of that time with us the adults along with a few of our friends went out for a date night. We are loving having date nights when we can. It is starting to be a situation where more and more people are feeling comfortable with Isaiah. He has stayed the night all night at my parents a few times and hopefully will again soon. I have a few more sitters who can help and Isaiah can get out and do so much. If we could just get him walking and without a trach there would be nothing stopping us from anything. I pray for both of those things to happen for him but until then we make the best of it.

Well I guess that is about it. Nothing really along the lines of appointments for a while or until they reschedule his appointment. They still are having trouble getting a day to run the probe. It is really beginning to get frustrating...... Trying to be patient and thankful for the time we have at home. His temp regulation is still a minor problem but we are just trying to wait through it. Less and less frequent so that is good.

Will try to update in a week. Thanks for all that still follow along and support us. It is that support that helps to carry us. As things go well there are still just the everyday things that take a lot out of us but we do it without thinking of it now. :)

Nicki

Monday, July 27, 2009 7:29 AM CDT

Isaiah is doing well after the weekend. We have had a pretty lazy weekend. Isaiah had a birthday party, Tim had a tractor pull and I spent time with both of them!!!

All of his bloodwork looked amazing. The chest x-ray was Isaiah's definition of good. So all they can think is that his little brain is not regulating his temp some. They have thought maybe before but now they are pretty sure of it. HOpefully anesthesia will decide it is ok to put him to sleep and we can get his surgery rescheduled for this week or next.

That is all for now. I finally have pics off the camera and now I just need to resize them!!!!! They will come soon I will work more again tonight on them.

Thanks for checking up on him pics to come in the next day or so.

Nicki

Friday, July 24, 2009 8:37 AM CDT

We have had an amazing time on vacation. Pics will be added soon I have to upload them off the camera!

Isaiah is NOT having his procedure this morning. He has been running an on again off again fever since last Thursday. We went to the pediatrician that Friday to have him checked because he would be 95 or 104 and she said all checked out except for his ears and the yeast was still there. So I had to call the dr's yesterday to let them know and they said no way would the team put him to sleep today. This morning he is doing better but his temp seems to be rising some. His little personality has not been affected at all by it all he is still happy as can be.

I have a guess on what I think it may be but we will see. I will update tonight with how tihngs go today.

Nicki

Wednesday, July 15, 2009 7:43 AM CDT

Time for another update with only good things to report!!!!! Well one minor medical problem and that is all!

How has Isaiah been feeling.....well he is doing well. We are having some problems with his ears. He had an ear infection late June early July and now he has yeast in his ear which we are trying to clear. We have moved to anti-fungal drops so hopefully that will make him feel better with it. I must say it is not slowing him down :)

In PT Isaiah has recently stood for 5 minutes!!!!! His little leg muscles are building all the time! He loves his walker and will stay in it forever! One of my friends kept him last week and kept commenting on how he explores everything. And that he does he explores all things and when comfortable in a new place explores all around him. He is getting to be such a big boy. We think he has really grown lately. He is 40 pounds now and very tall. Praying for the walking to begin soon so that our backs will feel a little better! So that is how Isaiah has been progressing.

Now what have we been doing....... He during the summer has therapy twice a week and a session every other week. He has had lots of friends over to play in the month of July. A few cousins have come over and friends of mine kids. He enjoys their company. We are still enjoying the water park once a week. Yesterday we went with a bunch of my friends from high school (and ended up seeing so many more people) and he had a blast! He loves the freedom the water gives him and really wants to really get in. Hopefully the trach will be out soon enough and one summer he can get as wet as he wants to. Yesterday I put my hand over his trach and he put his face in the water and just laughed....such a happy boy. He has also stayed at his grandparents a couple nights!!!! He went over Saturday night then my mom and Tim worked it out for him to stay Monday night which was our anniversary! He loves being with them and it gives us a once a month break......well it gives Isaiah a break also. He is always glad to see us when we pick him up and it really helps us all. Speaking of our anniversary the wonderful man I married 7 years ago was bouncing by the bed that morning and could not wait to give me my gift (we usually don't do gifts on our anniversary) and he had gotten me an anniversary band. I love it and it could not go any better with my wedding band (which is a wrap). What a great Daddy and husband. This past Sunday Isaiah had his first horse show!!!! Dream Riders (the group he rides with) had a horse show to raise money and support for the riding group. They had a special needs class and Isaiah rode like a champ. I walked beside and every time he passed his daddy and Uncle Chris, Aunt Jamie and Madison he just smiled at them. He sat so big a straight and didn't let the heat bother him. Did I mention he brought his first blue ribbon home!!!! We were all soooooo proud of him!

Well that is what has been going on. This Sunday we leave to go to Gatlinburg. This will be our only trip since Isaiah has been born besides the one we went on with my family. We are very excited and going with friends of ours. Next Friday as soon as we get back Isaiah will have his procedure at Vandy to measure the acid in his stomach. Be praying they will get the information we all know is there. I will update on Friday night when we get home with him. Thanks for your continued support.

Sunday, July 5, 2009 11:30 AM CDT

Well where do I start!!!!

We have had a wonderful holiday weekend. Last week my little sister was in with her baby so we got to see her and Calvin. Isaiah actually gave Calvin love!!! He was so cute and leaned over and kissed him and hugged him. He thought it was really funny that Calvin had to have his picture taken and not him :) We had a cookout at mom and dads that night to celebrate the fourth and Calvin's birthday with family and friends. Last week was a little cool but Isaiah and I enjoyed lots of outside time. Not a lot of pool time but it was nice for farm work! On Friday we did meet up with some friends and had breakfast then the water park! What fun.......

Isaiah's fourth was very good. Friday we went to Franklin and listened to Dad's band play and watched fireworks. One of his nurses/our friend Hope came and watched them with us. She commented on how different it is to see Isaiah enjoy life and not see him in the hospital. She was his night time primary nurse and loved watching him enjoy life!!! Now the cute part is he kept saying "boom boom mama". So sweet......most kids fuss when they are going on he fusses when they end! He also decided that he wanted to sit with his poppa half way through......so like a good grandfather dad came and sit on the ground and held him while he finished watching them. Two miracles sitting there watching fireworks go off.........Yes I got a picture. Last night it rained here so we went to a friends and sat in the garage while they set off fireworks. Tonight we are having friends down to eat, corn hole, smores and more fireworks!!!! Well if I can talk his daddy into going and getting some!

So life is going very well. He is still pulling at the one ear but hopefully soon that will be taken care of with a new tube. July 24th they will run his probe and put new tubes int he ear. I am sooooooo ready for his ears to feel better. Last Sunday he was so grumpy but between the ears and the antibiotic reducing the effectiveness of the antacids I can't blame him. The rest of the week has gone better.

This week will be more of the same. Fun, fun and more fun!!!! We are so enjoying just being home and enjoying the summer things we can do. I am enjoying canning and making lots of different things. Isaiah's development is growing. He stood in PT this week for five minutes. As we moe forward with the weaning of the phenobarb I think it will only keep improving!!! He is doing well with it a few withdraws at first but then better after a few days. We are going to wait until after vacation for the next dose decrease.

That is about it and my little guy is ready for me to be done. Have an amazing week!!!!

Nicki

Tuesday, June 23, 2009 5:23 PM CDT

Where has the time gone.

SO what have we been up to..........well today we went to the doctor. We got a great report from his neurologist. He is very pleased with Isaiah and his recent development. We told him that Isaiah's seizure activity has been very low and he wants to get him off of phenobarb which would be amazing. It will take several months to get him off for he is dependent to it and we have to reduce the blood levels slowly. We start tomorrow with taking away his morning dose. He will be on one other seizure drug and if there is any activity we will have to try other drugs. The problem with phenobarb is it can have so many side effects. He will be on a high dose of zonegran also but maybe without the phenobarb we will see more progress in his development. THe neurologist really seems to think we will see him soar!!!! I would be so excited. It is a little scary with knowing the way his seizures are. We will always have it here incase we have to give him a big dose to take control of things one night. He said Isaiah is to the age that with this drug it will hurt his ability to do things. We also went to the pediatricians office for what I thought was a small ear infection and come to find out both ears are really infected. So oral antibiotics and ear drops in both ears........

Now to what has been going on here. We have been having tons of fun. Isaiah's friend Harrison came for a couple days. Then last week we went to the water park with CLay and Will for the first time. I had to be VERY careful due to his trach. On Saturday he stayed with his grandma and poppa for the first time all night long!!!!!!! He has never stayed the night away and he really enjoyed it and Tim and I had an awesome time going to a Hot Rods game with the firemen. Sunday we had a lazy day with TIm and then went to my parents to eat. After that we went to watch Clay and Will's daddy work!!!! THey were harvesting wheat and they wanted me to take some pics. Isaiah got to ride on the tractor pulling the grain cart. He then got to ride in Jon's big truck to go to the grain bins. SO needless to say we have been very busy and having lots of fun. We also went to a family reunion a few weeks ago. THis weekend we have several birthday parties a wedding and several other activities!!!!! He has had several play dates over the last few weeks as well and has really enjoyed them.

SO all is well here. Still working on therapy......trying to get him to stand. Since we don't have parallel bars I can stand him up to the gate and he watches the horses while he practices!!!! SUmmer is a wonderful time of the year!!!! The garden is growing and we have planted our pumpkins!!!!! I am trying to get a slide show up..... we are having to use the lap top right now so it is a little different.

Have a wonderful rest of the week. We will update next week.

Nicki

Tuesday, June 9, 2009 8:49 AM CDT

Well this week has started off on the right track! Isaiah and I have both been a little under the weather with sinus stuff but it has been manageable. Overall he is doing great. This weekend consisted of a couple parties that we were invited to so we went to one that turned 2 and one that graduated!!!!

Isaiah is doing very good right now. It is amazing how after having a good shunt placed in March the difference it has made in him. We finally have our sweet little boy back! No more hitting or screaming for no reason. He now is not hurting and trying to express himself. Isaiah gets so frustrated in wanting to express himself and not being able to. He is getting better with his signs and words but still there is so much more going on in his little head than what he can express. We are working hard on it though.

This week was a little discouraging in physical therapy. Last week he stood st the parallel bars for 2 minutes this week he went no more than 18 seconds. Like I said his head has been a little stuffy and his eyes have had a sleepy look to them so maybe he just isn't feeling the best. Maybe all of the hay being cut has gotten a hold of both Isaiah and I!!!!!! Hoping next week holds a better session of therapy. We are going to practice lots at the window and toy box this week. I did take him to the carousel in the mall to ride it just to be sure it wasn't a complete balance thing. He did fine riding the horse but only wanted to ride once so I am sure he just felt a little sick. Today he is back in his walker running around the house. He is getting a little to strong for his own good. Where our tile and hardwood go together there is a lip. There is no way to fix it just the nature of an older home. Well when he wants to go from one room to another you have to be sure he goes straight ahead and not sideways or he has almost flipped the walker. His legs are really building strength and keeping me on my toes!!!! He is also tall enough for the cabinets!!!! Look out world :)

Next week we go to the neurosurgeon for a check up. Then the week after we will see neurology. Both appointments should be quick and fairly easy. He will probably have to have a stick at the neurology appointment to check his phenobarb levels but other than that it will be pretty easy.

THat is about it. We are enjoying our summer and all that summer includes. The sunshine has been good for all of us!!! We all three work in the garden in the evenings and Isaiah is loving the chicken experience. He still spends time with Daisy (pony) and we are just working on everyday skills with him. The Lord has blessed us so and we enjoy every minute of our time.

Enjoy your week and we will update next week after the appointment! Oh, Isaiah's bruises are much better from the stroller accident bless his heart....... almost healed.

Nicki :)

Thursday, June 4, 2009 8:31 AM CDT

Well June is here are we are enjoying the sunshine and warm weather. I really am not a winter person at all so the summer is my very favorite time of the year. I think Isaiah also likes the summer!!!!

We now have an appointment for the PH Probe, scope, teeth cleaning and possible ear tube placement. On July 29 they will do all of these things. He has to be there at 8 and it looks like he will get to go home. Some probes are placed for 24 hours and some are longer I am not sure how long they will have the probe in place. Please begin praying that Isaiah will leave it in. It will be in his nose and have a little box that will record information hanging from it. Isaiah has a couple appointments in June for checkups but beyond that there are very few doctor things right now. Just praying he stays well.

His desire to drink and eat is still breaking my heart. Last night he came to the table wanting to eat with us. I have stopped bringing him to the table but rather finding him something fun to do. In did let him taste a little sauce and he has a little water when we are out and he gets dry. Beyond the occasional things that is it.

Isaiah is developing like crazy!!!! THis week he learned to put a piece in his leap frog alphabet thing on the fridge. We clapped and he just grinned. He was so proud and he has done it lots since then. It takes him a little while to accomplish it so sometimes he does get frustrated. He has had his first major accident. On Sunday he was in his jogging stroller at the garden and flipped it. He went to grab a toy and he was strapped in which made the whole thing come down on top of him. Bless his little heart the whole left side of his face looks awful. It is healing well but scared us all to death. I was watering flowers while him and Tim worked in the garden and all I saw was Timmy scream for me to get a towel. He bit his mouth and that bleeds so bad anyways. The other cuts were around his eye. With a little TLC and motrin he did much better!

THis week has been much less busy than the past few. We have kind of done our own thing other than Monday which had appointments. Tuesday the Anthony family came and spent the afternoon after we visited our Amish families and got them some stawberries. The Amish were glad to see Isaiah again this year and little David (one of the children with Downs in one of the families) still wanted to feed him!!!! I just love that one family and they love Isaiah. The woman gave me some tips for my garden......wouldn't it be nice for life to be so simple. We had a great afternoon playing with all the Anthony children. Isaiah ended up sleeping a lot of the time since he naps in the afternoon but it was a great day. He has had Madison (friend of mines daughter) here since then. She stayed a night and just loves him so much when she is here. He likes having someone to help besides mom!!!!!

So we are having a good week!!!! His standing is developing again and his eagerness to stand is growing!!! Please pray for his little legs and his balance.

I will update in about a week unless something changes. Lots of things going this weekend and I want to work on a new slideshow of pics. I have got to put a new pic up of Calvin and Isaiah. Isaiah really did well with him!!! Calvin is getting so big :)

Nicki

Friday, May 22, 2009 11:09 AM CDT

Well another week has passed and we are enjoying the warm weather.......I love warm weather!!!!!!

Isaiah has been helping mommy and daddy in the garden! He sits very patiently while we work. He isn't crazy about the grass so he sits in his stroller on the edge of the garden. We have all of our flowers planted for the year and things are really coming around. Thanks to a wonderful electrician in Bowling Green we have electric stuff run in the basement.....making progress with that. Calves have been sold for the year and brought amazing prices so that was a huge blessing for us!

Isaiah is still fighting a few allergies and running ears. THings are much better with this than they were two weeks ago but still having to keep Kleenex around!!!! This week we got a call that he had a test. Well it was his swallow study so him and I loaded up in the van yesterday and headed to Vandy. I was very excited and hopeful that it would show we could really begin working on eating. For the first time Isaiah is showing he is hungry and wanting to eat with his friends. No such luck.........When swallowing thick stuff by the third bite he begins to aspirate (push it in his airway) with thin things like water on the first swallow he does the same. This was very discouraging. It seems like sometimes the simplest of things are what Isaiah can not do. So we think this is all leading to his oxygen needs and his slobbering. He is not able to swallow correctly so he always has a wet shirt and he is aspirating his spit which makes his lungs to wet and makes him require oxygen.......... But that was yesterdays news and today we are leaving that behind and trying to stay positive.

So today he has his cousin Kylee here for a few hours. Her and her mommy came to drop their dog off to stay for the week and she wanted to stay for the morning. Her and Isaiah have been up and down the road.....him in the walker and her on the tricycle. They have played in the water hose and now we have stopped for lunch! Today is a good day!

Overall that is all we are up to. This weekend holds time for fencing, getting rock from the creek for the basement, finishing mulching and so much more......did i mention a cookout!!!!

Will update next week!!!!

Monday, May 11, 2009 1:05 PM CDT

Well Mr. Isaiah's appointment went well today with the dentist. Timmy ended up taking off to meet the dentist. We both really liked him!!!!! He was very patient and kind he really wanted to know Isaiah not just his teeth. That makes a big different to me he cared about my child first. He agrees that only medical stuff and not cosmetic should be done to him. Isaiah's teeth do not appear to have cavities that are visible. His teeth are all in but not fully through the gum....this is due to his lack of eating and the food pushing the gums down (i learned something). His teeth need to be cleaned while he is asleep so we will do that when they run the probe. He wants us brushing his teeth as much as he will allow in a day. He said if he will let us bruch them 5 times then do that. Basically we will be keeping the fluid moving in his mouth. He was suprised his teeth looked as well as they did! And now I must say Isaiah was soooooooooo good!!!! He didn't cry just fussed out one time. He was on the table all by his little self while I held his little arms and sang the ABC's to him. He let the doctor take a big look without a whole lot of protest!!!!! We were both so proud of the little guy.

That was our day and now tonight we go to therapy! We will then go and price cabinets for our basement and other things that will be needed. Isaiah and I went and did the shopping part last week and this week we are taking Timmy so that we can make some final decisions! Tomorrow night starts riding lessons for Isaiah again! We are so excited for this to get started again. Lots starting up and going on! The summer always holds lots of things for us.

I hope all of you wonderful mothers had an amazing mothers day!!!!! I know I did! My little guy actually slept until 7:15 which was a huge treat for me.....I like to stay up late and sleep in :) Then him and his daddy had picked out a hibiscous tree for me!!! Great day with my boy......I love being his mom!!!!

Nicki

Friday, May 8, 2009 8:02 PM CDT

Wow where has my week gone......first things first.....Isaiah has a new cousin!!!!! James Calvin Krutza was born on Wed. night at 10:26 weighing 7 lbs 13 ounces. He was 20 inches long. I have a ton of photos on my camera and hope to upload them tonight to share a picture. He is just so sweet and looks like his daddy! He has his moms long fingers and her color. I think he loves me and timmy all ready. He would love me more if Timmy hadn't of taken him from me and wouldn't give him back! Isaiah will just love him when he gets to see him! We have talked about him and shown him pics!

This week has been a little more than crazy! One day this week Kylee came to play with Isaiah then we all went to Louisville for the delivery. Then it was back in time to unpack and head to Nashville today.

So Nashville today what can I say other than I just want to crawl in a hole tonight. I told them my goals were to 1. keep isaiah safe 2. to have him happy. I do not feel that isaiah is as happy as he would be if he did not have a trach. Basically today resulted in them thinking we won't even look at the trach situation for several more years. They are going to put him to sleep to insert a PH probe to test for acid and scoop him to see what they can tell and then maybe put a tube in and get a dentist to help with him. I have an appointment with a dentist on Monday for him. I am glad it is so quick stinks Tim has to work and I have to take Isaiah by myself. I am really glad they are getting him in so soon because they can go in and do dental work when they do these other things. The trach situation really disappoints me. The team of doctors that saw him today will meet on Wed to finish talking and the pediatrician is giong to try to get in on the meeting. Tara is hoping to be able to be a voice for us and understand more because right now i do not. He did not do well with his sleep study and I understand that. There were also circumstances that made it hard for him that they just are not plugging in. I just want another sleep study but in the hospital setting where it can be controlled. We will see how Wed goes and if not we will have a plan B. I just want to be sure that I am doing everything I can for Isaiah. In the end I want to believe that I fought for what is in his best interest and I really feel that the doctors think they are acting in his best interest but I really am not feeling that. Please pray for them and for peace for us. I am trying so hard to be patient but it just is not going the best. Honestly tonight I am just trying to hold it together. Tomorrow will be a new morning and we will get focused again.

Well that is about it. Lots going on and lots to pray for. I better try to get pics uploaded so I can show off my sweet little nephew and my big boy doing big boy things!

Nicki

Tuesday, May 5, 2009 7:08 AM CDT

We are all still doing well. Last week was a very busy week for us all but this week is a calm lazy week.

Isaiah is feeling good with the exception of some allergy stuff. He wears his speaker valve all of the time now so he has to get some of it up by himself without the trachs help. He does well and still wants to wear his valve all of the time. Since he wears it all of the time the time now he is really starting to make sounds and express himself. The other day he had something to tell Timmy. He told him the same thing four times and I told Timmy just to tell him ok. Well as soon as he told him ok Isaiah was fine with it all and smiled and went right back to playing. Who knows what he was trying to say but he was so positive on what he was saying. He cracks me up when he does that. He has also gotten good with yes and no. With all of the communicating he is attempting his aggitation is much less. He is learning to have "gentle hands" and no kicking. During his three's he got into a few bad habits but those have all seemed to go with the exception of every once and awhile.....not often at all! He is also wanting in his walker a lot. We were at Clay and Will's for a get together Saturday night and he was so frustrated I had forgotten his walker. I will not make that mistake again :)

Timmy and I are also doing well. Timmy has been working a lot with it being spring. The rain that seems to never end right now has slowed him up a little but I am sure things will be full swing before long again! I have also been going and going! My dog has three puppies and still waiting on my sister to make her call to say she is having little Calvin. Next Thursday will be the day if not before then....they are letting her go one more week. We have household projects underway here. Basement is in full swing in a week.....which means Isaiah will have his own therapy/preschool area very soon!!! I am so excited for him for this. yesterday at therapy he was able to pull up to the therapy bars all by himself like 10-15 times and would hold it when he did it. He was so proud of himself for this accomplishment!!!! Watching these baby steps makes me want the end result for him so much but know that with the complications he has had this must come slow. Please pray for his balance, confidence and desire. Many have asked about my dad.....he is like a new person. He does circles around all of us right now!!!! Tony is also doing well!

Well that is about it. This week will be a week at home getting things around here done and playing. Hopefully we can finish planting the garden around the end of the week. Lots of things are in but we have to finish some up still! Thanks for your continued support.

Nicki

Sunday, April 26, 2009 2:20 PM CDT

Thought I would take just a few to update.

Isaiah has been doing great. He is fighting some allergy stuff which is resulting in some low oxygen and low grade temps at some points. We are still going outside and enjoying ourselves. He loves being outside and unless it kicks his asthma in we will continue to enjoy the sunshine. Thanks to his buddy Joseph he has a ride on John Deere tractor. He absolutely loves the tractor. He can lift the bucket and do all kinds of things. He also gave him a car that you can operate by using your feet. Isaiah loves riding these through the hospital so he is enjoying it also. Huge thanks to Joseph for thinking of Isaiah he is loving his new outside toys. Speaking of outside toys Isaiah......this is the first Spring Isaiah has been able to be home this long to enjoy that kind of stuff. We have never really before had a need for outside stuff but I am finding that I am getting those kinds of things for him. He loves bubbles right now riding in his wagon, playing with Daisy and going to the park. He is even getting brave enough to get on mommy's big horses!!!!! Daddy is sooooooo excited that Isaiah loves the horses as much as I do!!!!! We are looking into building Isaiah a swing set that would be adapted to what he needs. It will have normal type things on it also but there are particular things that will help him more than others. We are hoping to recruit some help and get that started in the next couple of weeks. He thinks he is way to big for the swing in the tree.

So as you can see we are just having lots of fun around here. This weekend Isaiah's uncle Chris and aunt Jamie spent most of the weekend with us. He loves his "bubba" and Jamie (maimie) bunches so he enjoyed all the time we spent together!!!! Huge thanks to them for helping us on the farm the past day and a half. We were going to plant the garden yesterday but one of our neighbors had to come bring the big tiller that goes on the tractor. He fixed it this morning :) My inside dog also had puppies yesterday so that made it a little hard for us to get outside. A couple of them were really big and we actually had to pull them. Thank goodness Timmy was home to help with one of them that I couldn't get out. Then the cows were out and anything else you can name happened. But now we are ready to plant so as long as TIm doesn't work late tomorrow night we will put up the temporary fence and plant.

THis week will be a busy week. If Isaiah feels like it he will go to preschool tomorrow morning. Then PT in Bowling Green tomorrow afternoon. Hopefully after that we can head to the park for a little while. The rest of the week is a lot of the same therapy and a few play times! TOday he has his cousin Levi over and Wed. he will have Kylee here. Then Thursday he gets to go play with Reese so big week!!!! No appointments this week. OUr next appointment is not until May 8th. I am so glad to be away from appointments for a little while. Now if his chest and ears can stay clear........one will see. Isaiah could also have a cousin born this week we will just have to see. His Aunt Amanda is VERY ready to have the baby. We just can't wait to see Calvin. Maybe sometime this week we will get the call to head north.....if not this week it will be very soon. I think Calvin just likes his mommy's belly.....I need to talk to him and tell him he will like his Aunt Nicki's arms real well also!!!!!!

Have a blessed week and enjoy this beautiful weather we sure are!!!!

Nicki

Monday, April 20, 2009 10:20 PM CDT

Isaiah had a wonderful weekend. He LOVED Thunder Over Louisville!!!!! Huge thanks to Harrison for inviting Isaiah up to stay with him for the show!! He liked the planes until 4 really loud ones came by then he was done with the airshow. I decided to take him and nap him in the room. Well when Harrison and Ann Kelly came in I shut the door to the hallway. Finally I knew he was a sleep and went to check on him and the door was locked...... She my child was locked on the other side of the door. Ann Kelly was quick to call security and they got up there and then the head of them showed up.....I was thinking this is great they are going to think we are two of the worst moms in the world and little do they know. They got him out without breaking down the door. He was just fine but awake from all of the action and the guy was in tears when he saw Isaiah.....don't think he realized how special of a boy was on the other side!!! Just a typical Nicki and Ann Kelly story boy will we have plenty to tell the kids later in life!!!!! He thought the fireworks were wonderful. I have to admit they were amazing. Isaiah never stopped watching for the full 25 minutes they were going. THen the boys went to bed and we had some adult time. The next day we all had lunch then we went to see Isaiah's aunt Amanda. Calvin will be here before we know it....she is really dropping!!!! We are soooooooo excited! After a short visit with them we headed home. We were all really sleepy and were all asleep by 8:30. Yes even me the night owl!!!!

So this week should be calm. Isaiah's dog is doing much better. She actually let me take her out to potty today. She is putting weight on the leg that was damaged so bad. It is looking better. I am so happy to see her doing so well. She is liking this special treatment!!! I am going to take Isaiah down to her tomorrow. We had already told him she had to go bye bye so I didn't want him to see her until we knew she would be ok. I think now she will be fine and it is time for him to see her. I didn't want him confused and I really thought when we told him that she would have to be put down. We are still waiting on puppies to be born which I think will be in the next day or two.

Isaiah went to PT today and did a great job. He is really doing well pulling himself up to a rail in therapy. I can't wait until we can get all of that set up for him in the basement. I think it will make a huge difference in him. He also got his hair cut today. He looks like such a little boy with a hair cut. I tried cutting it the other night and lets just say that didn't go so well. Bless his little heart he had to go all weekend with what TIm said looked like a Lyle Lovett haircut.......

Well I should think of going to sleep now. I will update at the end of the week.

Nicki

Saturday, April 18, 2009 0:05 AM CDT

OK so wow has a lot happened since I updated last.

Isaiah is doing well health wise. He is practicing standing and really putting effort towards it. He has required some oxygen lately but I am sure it is just the time of the year.

Isaiah had the time of his life at the Taylor Swift concert. The whole 2 hours the Opry was on he never lost interest. No matter who was singing he wanted to listen. Some he enjoyed more than others but he loved being there. When "his Taylor" came on stage he didn't know what to do. He looked at me then at her and for the next three songs he just danced and laughed. I can say this is the happiest he has been for that long of a span. While there he didn't have to feel that his special needs were holding him back. He was able to listen to music and dance along!!! My legs were sore for several days after from standing or bending with him in so many different positions for so long!!!! Jimmy Wayne (a country singer) spotted him in the crowd and sang to him for a little while. He then gave him and thumbs up and Isaiah just laughed. Unfortunately Taylor Swift didn't see him. There were sooooo many little girls standing in the front of the stage. I was within a few people of her but just didn't get his close enough for her to see him. Maybe next time!!!!!

The rest of this week has continued to be crazy. He went to preschool for thirty minutes and just did ok with that. Tomorrow we are headed to Thunder Over Louisville!!!! Harrison's mommy and daddy have us a place to stay with them to watch the big fireworks show from the balcony of the Galt House. It will be lots of fun.

I thought this next week was going to be pretty calm. I am hoping that it is but if not that will be ok.....our inside dog is due to have puppies any time, my little sister is going to have little Calvin any time and Isaiah's beloved Lady Dog got ran over. She made it through the accident and is in the basement trying to heal. We are hoping that she will be ok. We will not know anything for sure until at least Monday. The vet will come back down then and we will make sure she doesn't have to be put down. I am hopefully she will be alright. We couldn't get her calm before the vet got here (which is also a friend of ours....thank goodness!!!!) so I put Isaiah outside with her. He just held on to his Lady and said "bub ou" which is his I love you. He kept wanting her to get up but she couldn't. They just sat together and loved on one another for the longest time. When Debbie got here she decided not to put he down which is what I thought we would have to do but give her a chance. She wasn't as broken as what Timmy thought she was. So now this week we will be taking care of her....well she has to be in for the next 6 weeks so I am house training a lab who can barely walk. Oh well anything for Isaiah right!!!!!

So that is about all. Things are great and next week we will get to spend lots of time at home and enjoy the weather!!!!

Nicki

Thursday, April 16, 2009 10:41 AM CDT

Isaiah had the time of his life at the concert!!! I will update with details tonight. This week is wild busy.....pics are coming. they take a long time to upload on here.

Nicki

Sunday, April 12, 2009 7:57 AM CDT

HAPPY EASTER everyone!!!! After all the storms on Friday which seemed appropriate for Good Friday we can now dance in the sunshine. He has Risen!!!!!

Will update on Tuesday night with how the Taylor Swift concert goes!!!!! He seems excited about it!

Have a blessed Easter!!!!!!!!!!!

Nicki

Tuesday, April 7, 2009 9:44 AM CDT

Ok I am going better updating on here also.....want everyone to know the good news!!!!

Isaiah is going to see Taylor Swift at the Grand Ole Opry on Tuesday night!!!!!!!! We are so excited and can't wait to see his face. Huge thanks to the Miller family for making this possible for us!!!!!

Off to get him up now. He is having a good week. IV stuff is done and therapy is going full force!!! I will update here on Sunday. Have a blessed Easter weekend.

***************************************

My husband has informed me I forgot to update Isaiah's web page. Sorry a lot of times I put things on Facebook and forget there are still lots that check here!!!!

Isaiah is doing good. He wants to lay down a little more than I would like but I think that is his IV antibiotic therapy. It seems that every time he is on IV stuff it makes him not sit as much. Besides that he is doing well. He is actually trying to stand more. His buddies Clay and Will were here and that really made him want to stand. When he has friends here it really motivates him.

Yesterday he went to have his needle changed and blood levels. All levels looked good and the needle change went ok. His ears were full of stuff....not infected just full of junk. She got one cleaned out but the other she never could get it where she could see the ear drum. His chest sounded good and he was spunky.

This weekend we were busy. On Saturday my mom kept him so that Timmy and I could go to an auction. It was a lot of fun!!!! I came home with 2 geese and 8 chickens!!!!! Now Isaiah and I get to go gather eggs in the mornings. He thinks the chickens are pretty fun!!!! That night we had a birthday meal for my mom! Sunday he had friends over most of the afternoon and evening. yesterday after the doctor appointment we went to Rainforest Cafe. Clay and Will went with us to the doctors and then since it was raining we went to the mall. The boys loved eating and riding the train around the mall, the ride toys and so much more. Not much shopping but hey it was better to see the kids have fun!!!! Thanks Brooke for going with us so we didn't have to go by ourselves!

That is about it for now. he stops antibiotics on Thursday so please pray for no infection. All doctors agree Isaiah just needs time at home and time to build strength.

Will update within a week....promise :)

Off to the grocery!

Nicki

Tuesday, March 31, 2009 10:20 PM CDT

We are finally home.

Isaiah's eye appointment went well. Dr. Donahue is so pleased with how Isaiah is doing!!!!! He was concerned with the optic nerve. Evedentally kids with multiple shunt problems can have major issues with the optic nerve......can I say I am so glad I did not know that before hand. He said there was no need for glasses yet. He thinks Isaiah will end up needing them but not now. So great appointment with him. Dr. Donahue is a wonderful doctor and person and the excitement beamed from him when he left. The bad part of the appointment was that it gave Isaiah a bad headache which yes brought on some seizures.

Next it was off to orthopedics. They were not to concerned that Isaiah's foot has not grown in two years. I was to say the least. They said his little foot was in proportioned with his little legs. HMMM if only he had mommy's big legs his foot would grow. I will say that Timmy and I have almost the same size foot so maybe he will just have smaller feet. He is also worried about the bone at the bottom of the foot but he said he just can't see putting him through one more OR run....I agree. He wants to give him one more year and if not try inserts in his shoes. He really thinks it is the hospital stays that is causing the problems. I think we should have gone on with the inserts but the doc didn't so how could I argue it. Isaiah's hips have also seemed to be a little out or balance. They checked them and said they were fine.....I had been really worried about this. They also checked his spine and said there was a little more of a curve but not to worry. So basically they said to give him time that is really what he needed. Time out of the hospital with no anesthesia. Boy do I agree with that. No mention of a wheelchair today so he really thinks someday he will walk. Please pray for this. He is trying to stand again so that is wonderful!

We then happened to see Dr. Kelly while we were waiting to have his blood drawn. He pulled his glasses out and did a full examination of his head!!! He is so funny doesn't want to see us for a year but examines him every time he sees him!!! Gotta love this man he is one of the best and has Isaiah's best interest at heart. I am glad to know he cares so much for him. He wasn't excited about last weeks stay.

Then we went to have his blood drawn and needle changed. That went fine but unfortunately the needle some how went bad when we were done and that was at 5:00 when everyone left and he HAD to have one of his antibiotics. Luckily we had access to a certain someone who could re-stick him :) Boy were we thankful to not have to sit in the ER although I think it hurt Isaiah's feelings that he had to be stuck again.....but it hurt the stickers feelings worse to do it to him!!!!

Isaiah got to go visit another Nashville Fire Department. He had a blast and absolutely loved one of the ladies. He let Kristy hold him almost the whole night and he doesn't let just anyone hold him. Huge thanks to them for letting him come and not minding that he was getting over a headache and wasn't all the way back to his normal self.

That is it for now. I will update more later it is late and Isaiah just fell back asleep so off to hook him up to the machines and to bed for us.

Nicki

Monday, March 30, 2009 9:22 PM CDT

OK wow they have changed getting into caringbridge and i have just know figured it out........what a change is all i can say.

We have had a good weekend. It has been busy and we are trying hard to get everything back on track. Saturday I spent most of the day on laundry and cleaning. We do have a clean house though....I like a clean house! Timmy went to a couple different auctions to look at different stuff....things were going way to high. Sunday we all got up and had a lazy morning. Isaiah's Uncle Chris and Aunt Jamie came to visit him. He then went over to his grandparents to visit. We asked him if he wanted to go see poppa and I thought he was going to get up and run!!! He didn't understand why dad couldn't visit at the hospital. He had a good afternoon with them. Timmy and I went for just a few hours and had new tires put on the van and got some things that were needed around the house. We went trying to look at a few things for our basement and one store was closed :( I am really trying to get things finished for it so that Isaiah can have a preschool and therapy area. There will be another day and other things have to be done first I am just such a planner.

Today Isaiah and I had a ton of errands to do. Not how I wanted to spend my Monday but they had to be done. FIrst we had to make the farm payment, then do all the paperwork for the USDA, then off to get oil changed, truck taxes paid, gas, let uncle Jared decide what piece the van needs to fix it, off to get the piece, therapy, pick up the dog, go look at lawn mowers (ours has had it) and let daddy help change his dressing under his trach collar at the firestation. Isaiah is needless to say sound asleep tonight and I am not far behind. It tells you how well he must be feeling to be able to do all of these things. I was ready to get home it was an expensive day..... Isaiah did have a great time visiting all of the ladies at the Farm Service Agency and all the other people we got to see.

I can not tell you the change in Isaiah with this new shunt. It has made all of the difference in the world for him. He smiles and guess what he is even trying to stand. I haven't had him try since before the last shunt was put in around Feb. So all is going in the right track.

Tomorrow will be a busy day. Please be praying for it. We have two appointments with specialist and have to have his blood drawn and needle put back in. It will be one loooonnnnngggggg afternoon and into the evening. I will update tomorrow when we get home. All of that said I am going to try to get some sleep while I can. We are giving IV antibiotics every 8 and one is every 12 so I will be up giving them from 2-3 am.

Until tomorrow(now that i know how to sign in)

Nicki

Friday, March 27, 2009 10:52 AM CDT

Isaiah gets to go home this afternoon!!!!!

They are going to send him home on IV antibiotics. With his history of meningitis and the CSF leak for 16 hours they are nervous not to give him a two week round of them. One medication is every 12 hours and the other is every 8 hours. That is manageable for us and won't be for to long so hopefully we won't get to worn out from it.

We should leave this afternoon by mid afternoon so that should put us home by early evening. TImmy will be off for the weekend so that will help us to get settled back in and things caught back up. Even being gone this short of a time it seems like it gets us so far behind. By Sunday I would say we will feel caught up again.

I will update tonight from home. Thanks for all the prayers this has been a busy but short stay and hopefully he will stay out of here for a while.

Nicki

Thursday, March 26, 2009 3:15 PM CDT

Here is an update the best I can explain it and everyone understand. Thanks to Amanda(my little sister) for updating earlier.

When they went back with Isaiah we were under the understanding that they were going to have to replace the tubing from his head to his stomach. When they came out we had different news. Basically a shunt has three parts....the part that goes from into the brain and it has a cath hooked to it....it then connects to a reservoir and valve....then another cath hooks to that and tracks down to the abdominal cavity. The reservoir is where they tap his shunt and last night after tapping it it started to swell and leak CSF.... ummm not good that is how he got meningitis before. They started him on IV antibiotics to protect him while it was leaking. So today when they went in they found that some how the valve at the reservor was broken in half???? Dr. Tulipan said this was a new one on him and he had not seen it before. They had to make a pretty big cut in the side of his head and one right under the trach collar. They ended up not having to cut his tummy!!!! What they did is put a new valve in then hooked the caths back up and the shunt functioned fine. Although the incisions are painful and the one is pretty big atleast they did not have to tunnel back into the abdominal cavity, that is a huge blessing.

It still looks like we will go home tomorrow. Drive through surgery hopefully. The question will be will they need to send him home on antibiotic and will it be oral or IV. They do not want to play around with the fact that he had a CSF leak as we all know that could be very dangerous. So tomorrow will tell but hopefully we will be able to get home and him get back to his normal spunky little self. We will update tonight if anything changes if not we will sit and wait and manage Isaiah's pain. Please pray for this shunt to be the one that works and no infection. Maybe we can go home and stay there the rest of the summer.....he has playing to do!!!!

Thursday, March 26, 2009 1:11 PM CDT

Isaiah is out of surgery. They didn't have to make a cut in his tummy. So, his pain should be minimal. His valve actually broke in half which the doctors haven't seen before. Hopefully, he will be able to come home soon. Nicki will update when they get back in the room.

Have a good day,
Aunt Amanda

Thursday, March 26, 2009 8:15 AM CDT

So the answers are in. If you will remember about three weeks ago Isaiah had a fluid build up right above trach collar and in the line of the shunt. We saw Dr. Tulipan and he said not to worry about it unless it caused a problem. The CT from yesterday now shows that it has caused this problem. The tubing that hooks to the lower part of the shunt to the valve where they tap it has come apart. A shunt is in three different pieces so that you can fix things without having to always mess with the brain. That is a good thing in this situation. They will shave his head at the bottom where they did last time and open him there at the base of his head. From there they could do one of two things. Just rehook it and see if it would work and there wasn't anything wrong with the tubing cath or they will place a new piece of tubing and track it down the stomach and make an incision in the stomach and guide it. Really the first option would be easier on Isaiah but I just pray for the doctors to know what is the best thing that will make the shunt last and we won't have to be in this situation again.

So surgery will start around noon the best they can figure. It should be routine for the neurosurgery team although as a parent no surgery ever feels routine. We will just have to pray for the doctors wisdom and Isaiah's pain to be minimal.

Isaiah should be able to go home tomorrow.....yes I know this is drive through shunt surgery. But as scary as a shunt sounds there are so many of them that really it is no big deal for the neurosurgery team to do them. He will be in a little pain over the weekend but hopefully back to his normal spunky self by the beginning of the week.

We will update as soon as surgery is over. If I can I will try to text someone and have them update while we are in the recovery area with him. Our cell phones aren't working very good on the lower floors but texting is working. Who would have thought.

Will upate later
Nicki

Wednesday, March 25, 2009 11:25 AM CDT

****** We are now in a room very sleepy so this is short. It is almost midnight and I think we can all rest for a few minutes now. They just tapped his shunt for the third time and will do it again in the morning so that he can feel ok until surgery. It looks like surgery will be late in the morning. I will update tomorrow mrning with more details. This will not make since if I continue typing I really need to get to sleep. Thanks for the support and will let you know more in the morning.
Nicki

Isaiah's shunt has malfunctioned. Surgery will be tomorrow sometime. Neuro pulled some CSF off and he is awake some now but still fussing some. Hopefully the problem is on the distal end where it is in the abdomen instead of in the brain itself. If anyone needs us the best way to reach us is to text Nicki's phone. We are in the ED waiting on a room and the cell phone service is not the best but texting works. We will update later.

Hi everyone, this is Nicki's friend Kim updating for her.
It appears that Isaiah's shunt has indeed malfunctioned and she and Timmy are on their way to Vandy at the moment. The appointment with the neurosurgeon is a 12:30. They should know more then and someone will update as soon as they know what the plan is.
Prayers coming your way Isaiah!

Thursday, March 19, 2009 8:35 AM CDT

It has been a while and I apologize. We have just been busy having fun!!!!

There have been no appointments this week just play time. Isaiah's cousin Levi stayed the night with us last weekend and they had a lot of fun. Isaiah even attempted coloring while he was here. Isaiah really is not in to anything art....he can do it but he doesn't like it. He is one of those outside boys!!!!! We then started our week with therapy. His school system will be on break for the next two weeks so several of his therapy sessions will be missed. He will still get OT and PT so that will be nice.

The last two days have been amazing! The weather has been in the 70's and we have been outside for most of the days. Today and the next week do not look promising for a lot of outside play but at least we have had some good play time. Tuesday when I got home we went out and went to the barn. Isaiah loves being at the barn. So I have a couple cows that will eat out of your hand....well one now one of the cows I raised from a bottle died two weeks ago. Anyways the one came up and I was feeding her. Well all the others were making a lot of noise because they weren't as brave...close but not as brave! Isaiah thought it was the funniest thing with all 50 sitting around talking to him! Then Molly (the cow...I know they aren't supposed to be pets but she is..thats what TImmy says anyways) was eating and she licked Isaiah. I expected him to not like it at all. He laughed and went back for more. I know great visual picture for his doctors a cow licking him! Then she would eat out of my hand and he would pet her. He is like his Daddy and loves the cows. He so wants to get down and sit in them but I am trying hard to convince him that they would step on him. One day when he is up walking the cows better look out! After playing with the cows we went to the horses. Timmy doesn't want to admit it but I think Isaiah is a horse guy!!!! He loves watching, feeding, riding and walking them. Actually the bigger they are the more he laughs! We played with the big horses awhile....Isaiah watched his daddy work with one of them and laughed when it got away! Then we got the pony out. We went for a mile walk with her then let her graze around the yard a bit. We didn't saddle her but just loved on her. There will be lots of time for saddling her this summer! His riding lessons will start very soon. As all of his other friends are starting sports I am so thankful he can have "his" thing to do and that is horse back riding. An indoor riding arena has just been approved so soon he should be able to ride year round. Can't wait to see him and start taking people with us again to watch him ride. He is one of the youngest but it doesn't matter he loves it. It's just in his blood he can't help it!!!!! Speaking of horses I have someone to ride and break a couple of my horses. I am soooo excited about that. Soon mommy will be back in the saddle again also!

So as you can tell lots of fun. Yesterday he picked me flowers in the CRP. I thought he would just want to watch but he wanted his wagon by them so he could help. I didn't have my camera just my phone so I am texting them to Ann Kelly since she has Internet on hers and she can upload them. We also had a really good time yesterday just sitting on a blanket outside playing.

Isaiah doesn't have another appointment until March 31st. Then he will see the eye doctor and his orthopedic doctor. These are two appointments I have several questions for so please be praying for us.

My dad is doing well. Still with a cath but hopefully next week that will be gone for good. Tony is also doing well.

Well off of here for now. Enjoy the new pics. They are a bunch of random shoots. Some are from the Farm Machinery Show, his trip to the Nashville fire dept, his friend Caden's birthday and other different ones. Just lots of pics of friends and family.

I will update soon.
Nicki

Thursday, March 12, 2009 11:35 AM CDT

Sorry for the lack of an update. I am not sure where this week has gone.

Isaiah went yesterday to the ENT. Both ears are infected and we are putting drops in both of them. He does not feel that it is wise to start an oral antibiotic over an ear infection. He wants to give Isaiah 10 days for the ears to clear. Then if they are still infected they will need to be suctioned and powder started in them. His new ENT is very conservative. His right ear does not have a tube but still a hole in it. He said that would act as a natural tube and he wants to wait and give him time before putting in another tube. This is a good thing. Isaiah has had his midface advanced so he may or may not need new tubes. One will have to see. He wants Isaiah to come back in 3 months and then hopefully we will have more information on the reflux. Since his GI study did not show reflux we will have to see what the doctor wants to do. I am not sure where all of this will lead. I do know in three months when we go back to see ENT we will talk about the trach again. They will talk then about doing another bronch, taking his tonsils out and making a trach just for him in order to have a sleep study. They do not want Isaiah to have any apnea at all. Please pray for this. This will be his last chance before they will talk about him never getting it out. That makes me sick to even think about that so I have to think positive thoughts about this summer. I by no means want to put Isaiah in danger but there is so much more in life for him without a trach. We were at Clay and Will's this week. The boys were wanting him to get in the bath and Isaiah was was trying so hard to get out of my arms to get in the bath with the boys. My arms ached to let him go and let him play in the bath with the boys. He wanted it sooooo bad. There will be many things in Isaiah's little life that he won't be able to do or that his little body just can't handle but a bath just seems so simple. I know this is just the beginning of the hard journey in front of us. I try to remain positive and find the things he can do. Some day Isaiah will have healing but here on earth we will just have to do the best we can. He loves life and as he grows older I am sure that I will gain the strength and knowledge to help him do what he desires to do.

Another area in need of prayer. Isaiah has not been able to stand since he was admitted to the hospital last. He seems scared and his legs weak. Please pray for the strength in them. If we can only get those little legs strong enough.

Over all Isaiah is feeling good. He has been a little grumpy with his ears but not to bad. His sitting is better with no falling spells. I really feel like his falling last week was the start of ear infections that we did not know about. So this week will end with therapy and his cousin coming to stay the night with him on Saturday night! I am sure him and Levi will have fun! Last weekend he had a birthday party with his buddy Caden and that was lots of fun. I should have pictures soon to share. I just need to resize all of them so that I can make a slide show. Hopefully tonight!!! We are also really busy on the farm. This year we are trying to get a garden all planned out. With 200 acres there is no reason for me to have to go buy everything from the Amish. Last year we used our own beef this year brings a garden and chickens. We have been working towards all of this for years but obsticles have made other things more important. In years past Isaiah has had surgery just about every Spring but hopefully this year we are home!!! I think he will enjoy us going out each morning to work in the garden. This week we went with TImmy to pull soil samples all over the farm. Isaiah had so much fun. He wanted his country music turned up, then he put his arm out the window and let the wind blow in his face. I wish I had the video camera with me. Then when one of his favorite songs came on he just danced and smiled more. Life is good on the farm!!!!!

Timmy is taking Dad to the doctor tomorrow and it looks like his drain will come out. He had to have this urine cath put back in but hopefully next week that will be able to come out and stay out.

Until next week.....

Nicki

****Be watching for pics they are coming!!!! I have only taken 200 since I uploaded them last time!!!!!

Monday, March 9, 2009 10:49 PM CDT

*********** Some how the days got mixed up Isaiah's appointment is not until tomorrow. Will update later.

This is very quick but wanted to update and will try to do more tomorrow I am just very tired tonight.

Dad is doing well. Isaiah and I have been with him today. We went for a walk with him and Isaiah thought he was big stuff walking with his Poppa (My Poppa is what he calls him). Do you think he loves his Grandpa or what!!!

Tomorrow it looks like I will have to take Isaiah to Nashville about his ears. He had an appointment with ENT that we thought we would be able to cancel but Isaiah's ears are a huge problem for him right now. It looks like I will have to take him by myself so pray for us as we travel down and come home during a high traffic time. I will update tomorrow night.

Nicki

Thursday, March 5, 2009 4:37 PM CST

Home again. Wow has this been a wild week.

Isaiah's upper GI today did not show reflux which does not surprise me. It never has and this is a typical result for children who have reflux. The nurse said the sad part is you don't catch it on film and they throw up going down the hallway. So now I guess the testing will continue.

We went to see Dr. Tulipan about his head. He was glad we came. There is fluid collected in the area we were concerned about. He said he is going to leave it alone unless Isaiah begins to develop problems with it. He said we needed to keep a close eye on him and watch him for any signs of further shunt problems. So basically the way I understand around his shunt tubing is leaking some how. Good news is his head is still draining and Dr. Tulipan said he is safe and would not do anything to it with his previous complications. So this will be something we will just have to keep a close eye on and keep in the back of our head.

Isaiah was able to spend time with his Grandpa (or Poppa as he calls him) today. He was so excited but I think a little confused to see him in the bed. He kept trying to get his hand and pull on it. Dad sang to him so that made Isaiah calm down and just enjoy the visit! Silly little thing. Last night I was supposed to stay with dad but ended up coming home around 10:15. Dad started having a lot of pain and mom decided not to leave him. He was glad to have her stay.....not that he doesn't love me but it is so much better to have your spouse. Tony is doing better but still in pain. Both should be able to leave the hospital tomorrow if nothing changes. Dad tried to get out of there this morning and they told him not to even ask. He is doing a great job learning to take his anti rejection drugs. His blood sugar is under control now which it had not been from one of the drugs. So I think both are headed in the right direction. Tony was so sweet and told us even if he had known the pain before he still would not have hesitated to have given dad the kidney. Amazing man.

That is it. Isaiah is in his bed resting right now. Today really made him tired. Up early, one test and a doctor were just a lot on him. Thank you for all of your support. I want to add that the River 107.5 is doing there annual radiothon for the Children's hospital. They are asking people to become partners in hope by donating $15 a month. What a great way to be able to help the children of the hospital. One little boy you read about often would sure be proud to see how many would make that pledge to "his hospital" (as he knows it!!). They are playing our radio interview through out the next three days. We were going to do a live interview but I lost the ladies number(during a stay....) so I don't know that we will be doing that but you may hear us in our other interview. VCH means so very much to us and have been amazing in their care for Isaiah and for us. If you decide to do this let me know we would love to see how many people that love Isaiah can help in such a big way!

Have a wonderful weekend. We will update on Monday morning.

Nicki

Wednesday, March 4, 2009 10:54 AM CST

3:00 UPDATE
Isaiah will also have to see neurosurgery tomorrow.

OK so I have just a couple of minutes. Boy has this week been busy! So glad Timmy and I were able to have a date night on Friday night and go out with friends so we had some time together before all of this!!! Thanks Katy for keeping him!!!

So the morning brings my dad sitting in a chair and walking a little bit. He is still producing urine. Please pray that the kidney continues to take and does not reject at a later date. TOny is in a lot of pain. They say it is harder for the donor and I can see that. He is being very brave and all he ask about is making sure dad still has urine! My sister is taking Tony's mom down today and tonight I will take his little girl down. I will stay the night with Daddy tonight and be with him tomorrow. Timmy is bringing Isaiah down in the morning for his test and then maybe one other appointment.

As for today Isaiah and I are having fun playing. He is still a little emotional with huge swings in behavior. Being on steroid and now coming off of it is hard on him. I am ready for his sweet little self all of the time! Today Isaiah woke with a swelled place on his neck so I have a call in to neurosurgery. From his shunt reservoir to his trach collar there seems to be a pocket of fluid that has built and it is slightly blue. Not sure if this means there is a problem or not just waiting to hear. HOping they will see him tomorrow and take a look at it. He acts fine (besides steroid behavior), no fever and no swelling. I am sure it is nothing but need to make sure the shunt is nothing to play with.

I will update later this afternoon with what neuro says when they call me back. Thanks for all of the support with all that is going on right now. A huge thanks to Sarah and Erica for taking care of Isaiah for the 18 hours we were gone yesterday. Isaiah enjoyed his time and was so cute when TImmy and I went to get him up this morning......huge laugh and smile.

Nicki

Tuesday, March 3, 2009 6:48 PM CST

dad is out of surgery and waiting to get in his room. i will update details later but he is already making urine!!! Praise God

Nicki

Monday, March 2, 2009 11:01 AM CST

OK time for a quick update then back to getting things done.

Isaiah has had a good weekend. He has not been taking naps very well lately and wanting to stay up later so that makes him grumpy. As I am typing I am trying hard to have him take an early nap and he is turned in his bed so he can see me from his room.....little monkey! He has had no temps and today is his last day of steroid. He has taken a couple of falls for no reason at all so I am a little confused about all of that but who knows????

This week Isaiah has his barium study on Thursday. Then in the next couple weeks he will get his 4 year old immunizations. That is it hopefully on my little guy for a while. Hoping Thursday will give us answers.

So for the news I am ready to type tomorrow is KIDNEY DAY!!!! Woohoo finally Daddy will be able to get rid of his tubes and hopefully no more dialysis. We have waited 15 years for this and praised God even in the storms but I come today with a heart over pouring with joy. Thank you Lord for my daddy and for Tony who is giving him a gift of life. My daddy should get to see Isaiah grow older now, see future grandchildren my sisters will have, maybe teach Isaiah to play the guitar, sit with me in the hospital when I just need my daddy and guide his family for many more years. All of this is possible due to Tony's giving heart and love for my dad.....Tony you are my hero and I am so thankful for your love to daddy. Yesterday we had a big party for anyone who wanted to come at moms. It was a really good time. I will have lots of pics to share. Didn't get all that I wanted but I have a feeling we will have plenty more Sunday afternoons with the Byrd Family! Then tomorrow we will be at Vanderbilt bright and early. Tony's surgery will begin at 7:30 and they will have dad open and ready to get the kidney at 9:00. It will be an all day process to get it all hooked up right and make sure it is functioning and to finish Tony's surgery and make sure he is doing well. I would ask you to pray for them both tomorrow and they would feel your prayers. Neither of them are very nervous at all but seem more excited than anything. And if you can't tell I am a little excited myself.

Well off to finish getting this house ready, food ready for the week and then get Isaiah to therapy this afternoon. I will then be taking Tony's wife to him in Nashville tonight. Then for some family time with Dad!

I will update tomorrow with how he is.

Nicki

Tuesday, February 24, 2009 8:23 AM CST

We are home this morning and everyone is finally up!!! We didn't get home last night until 10:00 but we had a good day.

First we went to Dr. Huss's office. She is in a new office now and Isaiah really liked checking it all out. There is a huge train set in a glass window so he thought that was pretty neat. She listened to him and said she could not believe the difference in how he sounded.....did I mention he was due for a treatment when she saw him! So now we are every 6 hours during the day on treatments and less on the steroid. He will be able to stop the steroid sooner than we thought. That is good since it makes him catch things a little easier. The only thing that wasn't great news when we were there is that his tube is out of the ear that was so infected. Not sure what they will do about that we will just have to see. He has to have tubes but when to put them in is the question.

Next we went to the GI doctor. He said it sounds like reflux that is causing such redness in his airway but he wants to do the testing to be sure. I feel very confident that it is when I go back and look at the events. First test will be a test where they put barium in his tube and test for reflux. They will x-ray him several times to see where the barium goes. If that does not give us our information then there will be other test. So we have the test scheduled for next Thursday. I will be there with my dad that day so I will just run over to the hospital help with the test then Timmy and Isaiah will come back. So this whole tummy/airway problem may take a little bit of time to figure out but we are on our way to begin this journey.

So yesterday Isaiah felt really good. After all appointments we picked up Madhu when she got off and we all headed to one of the Nashville fire stations. We went to the one in Bellevue. Isaiah was treated like a king!!! The guys all talked to him he got to see there trucks. They had invited us to stay and eat with them and my four year old wasn't going to have sitting on the couch. He doesn't want to eat but he does want to sit at the table! So there he sits at this big huge table smiling and watching everyone!I got some really good pictures that I will have to post. One problem with pictures is going to be my camera had gotten switched over and was not taking them right and I had to figure out which button to switch.....a little aggravating but I do have some that aren't blurry! Then Isaiah was able to ride in the truck oh what fun! Needless to say Isaiah was asleep before we got Madhu back to her car. He had way to much fun! He is still all smiles this morning from his evening last night. I tell you boys and big trucks that is a magical dose of medication (for Isaiah and his dada!!!!) Huge thanks to all of the guys that made Isaiah's evening so special.

The rest of the week should be fairly calm. Timmy and I both have things to do on different days but Isaiah will have an easy week! Thanks for the prayers already for my Dad and next week. Please continue to pray for Isaiah to have his full health and spunky behavior back very soon!

I will update this weekend.

Nicki

Sunday, February 22, 2009 4:24 PM CST

What a weekend. Finally I think everyone in the house is without a fever and on the recovery end of this virus. Yesterday I started feeling much better. Isaiah was feeling better by the time we left the hospital from the virus just still drained from it and the surgery on top of it.

I think we have all enjoyed just doing nothing this weekend. The only thing we had to do was Timmy went to Bowling Green to do a few errands. He also had cattle to feed and things like that but we were actually able to sit and watch a movie this weekend! We watched Fireproof and I would highly recommend it. Timmy cooked us dinner before the movie and it was so nice to not be so worn out we didn't have time to spend with each other. Usually by the time he gets done in a day and I get done then we get Isaiah hooked to all his machines we are both so sleepy we fall asleep without knowing we were going to sleep!

Isaiah has been back to his playful self. He does tire easily and he is getting a lot of medications. Breathing treatments are needed every 3-4 hours as well as steroids and another for his belly. While we were there they also went up on his Prevacid dose for his reflux. He is enjoying his time watching movies and mommy not doing therapy with him. He actually wanted in his walker today. I was a little hesitant to put him in it but he would not take no for an answer. As soon as he was in it off he went. That is really good for his leg strength so I am not going to argue with him. He knows what he can do and is old enough to let me know!!!! Right now he is sitting in his chair watching a movie playing with the nebulizer now that his treatment is done. He likes to make noises on his hand with it.....such a boy! Overall he is healing just going to take time after all the respiratory stuff and then surgery.

This week we have to be at Vandy tomorrow. We already had an appointment scheduled with GI about Isaiah's reflux. Then we have to go see the pediatrician so she can take a listen to him. If Isaiah feels up to it after that we have a special surprise for him. He has been invited to go visit one of the Nashville fire stations, have dinner and play on their truck! Yes his daddy and his uncle Chris are both a little jealous I think!!!! Hopefully he will feel up to it! Then the rest of the week will consist of work and maybe some therapy we will just have to see how his energy is. On Friday I will be taking my dad for his pre-op appointment. On March 3rd he will have his transplant. I told Isaiah he has to be all better so we can all spend time together next Sunday at mom and dads with dad and Tony before surgery. What ever friends and family that can make it will all be there to help celebrate such a big day. My dad has his dialysis times counted down! So lots of big things happening for us as March approaches.

Well my little guy is ready to play now so off of here I go. I will update tomorrow night.

Nicki

Friday, February 20, 2009 5:55 PM CST

We are home. Isaiah seems to be doing fairly well. He is still very sore and we are giving breathing treatments every 3 hours. Nicki is feeling terrible and is asleep right now. Hopefully she can rest well and fight this bug. More than likely what Isaiah started out having she now has. One of us will update tomorrow, I just wanted to let everyone know we made it home today.

Friday, February 20, 2009 7:00 AM CST

Well it looks like we will get to go home today! SOrry for not updating yesterday I felt awful and not a whole lot better today. Dr. Huss was glad to see that I felt bad because that atleast explained Isaiah's first round of fevers. My mom was headed to work yesterday morning and talked to me and came back to help with Isaiah. There was no way yesterday for me to be able to do all that needed to be done with him.

All day yesterday Isaiah got a little better by the hour. He started playing more and moving more. Last night he did need some pain medication to help him rest. Yesterday he did not nap very well and kept waking up screaming so we thought we would try the medication and see if that would help. Sure enough he slept and did well until 5:00 this morning when he needed so tylenol.

Right now Isaiah is up and playing in his bed. The good news is it looks like we will be able to go home today. Isaiah has been without fever for 24 hours and Dr. Huss said last night if he will stay without it then he would be able to leave today. The resident was going to go ahead and start getting our things together so that when we were told we could go she would have it done. So hopefully off to Logan county. My grandfather is bringing Timmy down so that he can drive us home. We just have to be home by the afternoon so that TImmy can feed hay to the cows and go feed the pony! Hoping this weekend will bring us all rest and get Isaiah back to normal. Pray for his pain. Where he was on an aspirin a day to help with blood clots his chest has really bruised where they tunneled the tubing to his stomach. It hurts for him to cough and he doesn't want to sit up at all. I think being home will motivate him though! ALso pray for his little legs and that they will build strength back quickly so he can get back to standing.

Will update when we get home.

Nicki

Thursday, February 19, 2009 7:28 AM CST

This morning Isaiah is awake. He is having a little pain. Last night around midnight he ha to have some pain medication and they just gave him some tylenol so we will see if that calms him. If not they will give him more pain med. He just doesn't want anyone anywhere close to his bed. He screams if you get by him. Neurosurgery has already signed off of his case and given him the clear to go home when general peds is ready for him to do so.

That is about it..... We will see how the day goes. Hoping we can go home in the morning. I am really not feeling well myself so that doesn't make being here any easier.

Will update later.

Nicki

Wednesday, February 18, 2009 4:30 PM CST

Isaiah is settled back in his room. They were able to go back with a VP (in the abdomen) shunt which we were all hopeful for. He is still very sleepy will probably stay that way the rest of the night. It is noticeable that the fluid in his head is already going down. His heart rate and respiratory rate are starting to get back to where they should be. We will update later.

Wednesday, February 18, 2009 9:49 AM CST

Surgery is still on for around noon. They tapped his shunt last night and this morning to relieve some pressure. His fever is around 103 but hopefully this is just from the stress on his body from the shunt malfunction. He still has a lot of secretions from his lungs. Hopefully after the shunt revision, he will feel like his old self. The procedure shouldn't last too long (around an hour or so). We will update after he is in recovery to let everyone know how things went and whether the shunt was placed into his heart or belly.

Tuesday, February 17, 2009 2:57 PM CST

Isaiah's shunt is still clotting up. He is awake right now but he still feels miserable. The neurosurgery team will be in later to tap his shunt and relieve some of the pressure. They are doing that to buy some time to get everything lined up for tomorrow's procedure. General surgery will be in the OR with neuro to assist them in placing the catheter. They may place it back into the abdominal cavity, depending on what they all think. If you remember, they didn't last time because of the scar tissue and the fungal infection he had. We probably wont know how they will do it until morning. Actually, neurosurgery just left and said that the general surgeon will probably run a scope into his abdominal cavity and take a peek to see if it will be an option. They just pulled alot of fluid off so he should have some relief for a few hours now. The good thing is that they should not have to redo the catheter in his brain because the problem is on the catheter where it enters the heart. The surgery will probably be around noon as long as the case before his goes as planned. Hopefully after this is finished, he will be like a new kid. He is still having some respiratory issues and some fever. Nicki or I will update later on tonight with another update. Thank you all for the prayers that are going out for Isaiah. Once again we are jumping hurdles but we all must remember that we are not in control. I know when we see our Father we will then know why Isaiah had to endure everything.

Tuesday, February 17, 2009 0:35 AM CST

7:32 UPDATE-
His head is swelling again. They are going to put tpa in it again and see where that takes us. If that does not work they will have to take him to the OR. Please pray for the second round to work

WOW what a day........ or yesterday now i guess.

So on Sunday night when Isaiah went to sleep he started getting aggitated. He had company on Sunday afternoon and was loving playing with Erica, Madhu and Jessica. Then he just changed. When he woke this morning I noticed his head was swelled. He was still alert but he was not staying awake very long at all. I asked Dr. Huss to page Dr. Tulipan when she got to the office. So we went all day and come to find out he didn't see any reason to see him since they saw him Saturday. In the mean time Isaiah's head was swelling by the hour and he was less and less alert. He was only awake for a total of an hour all day and that was early on. Sarah came in the morning and he only woke for about 10 minutes to play with her. By the way thanks Sarah for sitting with him so I could shower and going down to get my lunch! All afternoon I just knew something was really wrong. I felt if it were an infection he would have a higher fever.....I really felt like it was a clot. So Dr. Huss came in and she was not happy with the way he looked. She left and said to let her know if it got any worse. Then his face and neck started swelling and he would not wake up at all. My mom and grandmother came so that I could get something to eat, had someone to visit with and a coffee and he did not recognize them......what not recognize either of them. At that point he was not able to focus even on me. I decided not to take no for an answer and demanded to see neurosurgery no matter what. I really am a nice person but when I want something I also know how to be very lets say persistent..... So the intern called Dr. Huss (probably to tell her she had a crazy mom in room 8532!) and Dr. Huss ordered the CT. Then she told neuro all they had to do was read it and get up to see him. Can we just say I thought I was going to scream by this point.

So within 5 minutes of them taking the CT Neuro was up here telling me they had to tap the shunt right then. She said the CT showed a lot of fluid on Isaiah. I told here right then I really thought it was a clot. She said well we need to send fluid....then as soon as she started she looked at me and said "mom you are right he needs TPA". So right now I am waiting on them to bring it up. This is a blood thinner that they send through the shunt into the heart. It should bust the clot and allow the shunt to work right. Good news is hopefully the shunt is working correctly after this and there is no surgery.

I am relieved that all should be well now. I am very frustrated at the situation but trying to remember that all people make mistakes. I now watch Isaiah and his vitals after she pulled of 45cc until she could get the clot buster up here and it scares me to death. He has been on a lot of oxygen all day and he has been dropping his numbers all day....I thought it was the respiratory infection.....no. His heart rate started going down around 6:30 we thought maybe it was a drop in fever.....no he still had fever he was just dropping his heart rate. He has had a high respiratory rate all day thought it was due to the respiratory issue.....ummm it has come down and he isn't struggling for his breath like he was (still breathing hard but normal for respiratory infection). So I look at all of this and it hit me how critical Isaiah was there for a little bit. I sure am glad all of this didn't come to me when it was happening. Thank God it didn't come to his heart rate dropping into a critical rate or his oxygen but they were headed there. Now everything is where it was before this started. He still needs the oxygen while he sleeps but I have a feeling in the morning when he wakes up he won't and I have a feeling that until this fever is gone he won't drop his heart rate to normal range. It appears we have the problem for the last 24 hours figured out and now we are back to dealing with some type of bad respiratory infection and horrible ear infection along with airway inflammation (as if that isn't tough enough on him). It does scare me he went 24 hours but I pray that in the morning he wakes to his "normal" self. They act as if he should..... I need a smile in the morning and a spunky little monkey.

Sorry I was not able to sign on here sooner.....I wanted to wait to post here until I knew. LIke Timmy said all day he needed me right with him and when he didn't (because he couldn't respond) I was trying to get a hold of people and figure out what to do.

It is now 1:35 and I am just finishing this entry. They have injected the TPA and I am happy to say Isaiah screamed when they stuck the needle in his head.....he didn't even move the first time. SHe said it is possible that in the morning they may have to do more and if it were to continue to clot they could have to redo the shunts cath. Please pray this one round does the trick. Even the injection really hurts Isaiah. Alright off to bed for me. Hoping to get a couple hours rest. Isaiah is alert now and hopefully will wake me bright and early.

Going to sleep tonight thankful for God's hands cradling Isaiah and his little brain until something got done. Also thankful for a little boy who will be able to wake up in the morning...... Thank you all for praying for us through every journey Isaiah travels. Your support was needed so much tonight as we faced this tough situation that thankfully turned out the way my heart wanted it to.

Nicki

Monday, February 16, 2009 4:08 PM CST

Sorry for the lack of an update today. Nicki has been busy with Isaiah and I have been busy at work. Isaiah's fever didn't get too high last night but he had a very restless night. He would wake up alot and cry out. He was in alot of pain for some reason. Today his fever has been hanging around 101. Still no definite answers on what could be going on. His respiratory rate is elevated and he is requiring some oxygen. He overall feels terrible. I am sorry I don't have any more information that this. When I talk to Nicki later, I will post more. She said he is wanting to be held alot and looks through the rails on his crib and cries when she isn't holding him. When he goes to sleep tonight, she will probably update with more information I just wanted to let everyone know what I knew. More than likely he won't be going home tomorrow like we had originally hoped for.
Tim

Monday, February 16, 2009 3:54 PM CST

Sorry for just now updating. Isaiah has been awake very little today and has wanted me to hold him all day long. Temp is still up a little around 100-101 throughout the day. Neurosurgery and GI are supposed to get with his pediatrician today. We are waiting for her to come in this afternoon and them. Nothing new at this time. He is still needing oxygen and has had a higher respiratory rate today. Not sure if we will get to go tomorrow or not. I will update more tonight when I know more. TIm is working today so if I can't update I will call him and have him to.

Nicki

Sunday, February 15, 2009 1:19 PM CST

8:22 UPDATE
This afternoon Isaiah has been awake more and has enjoyed some company. Erica and Madhu both came by to see him and each of them brought someone with them. Then one of his favorite PCCU nurses stopped by....he was very glad to see Jess but got tired soon after she got in here. His temp is now 99 it has been around 101 all afternoon. Puzzling how it comes down in the evening and up during the day. Praying for him to wake tomorrow morning feeling well and whatever all of this is will pass. Seizure activity is much less today also. Who knows all I care about is that this passes quickly and we are home Tuesday! He has felt like playing today though so that is very good!

Sorry for the lack of an update. The laptop was in the van and I had not been out to get it and had to wait for Timmy to get here.

Wow what a roller coaster ride. Yesterday morning Isaiah started with drainage from the ear and a low grade temp. Had something to do so he was playing with two of his friends having a big time. Picked him up and he was napping so when he woke we started getting ready. Temp was around 100.2 not to bad. Then all the sudden I could tell it had changed. It was then 104 ish. After hour and half it went down to 103 range so Becca and I started to my house with him with her husband and kids following behind to pick her up. Got him home relaxed in his bed machines running and temp was down to 102 range. Then went to 101.7 then 15 minutes later it was 106.8. Yeah I had to take it several times to believe that. Within that 15 minutes he started shaking with chills, heart rate was extremely unstable and having aggressive seizures. I called the pediatricians cell phone gave her a report so she could call ahead. Becca rode with me to Franklin to get my mom then mom went the rest of the way with us. Isaiah was so sick he had no idea where he was. His respriatory status really starting to decline. At this point he was to the point of when they had to fly him here when he was 18 months old only difference being he had a trach and I could keep oxygen to him. They ran several test....shunt series, tapped his shunt, RSV, flu and blood work. His bloodwork is not to out of control and everything else is negative. His temp started going down around 2:00 this morning after back to back tylenol and motrin. By 11:00 today it has started to rise again and that gray color is coming back to him. Everyone was very concerned about his shunt but are hopeful now that nothing has shown up on the stain. They are still watching his bloodwork to make sure there is not an infection there. We do know......he has an ear infection(would not cause what he is going through), he is needing a lot of breathing treatments, trach secretions are discolored (won't go into detail there;) and his lungs seem to be taking part of the blame although his x-ray was ok. He also had the bronch on Thursday which can cause problems in itself. So what do they think....starting to think all of these things have had a domino affect on the little guy and just shocked his little body. As nasty as the airway looked I am sure the bronch caused lots of aggrivation and the other things just kept on and on. The plan is that we will be here until Tuesday morning unless something changes. They want him on aggressive IV antibiotics for a few days to knock anything out that could be hiding. They are not convinced about the blood work yet.

RIght now his temp is back in the 102 range. He is awake which is better than yesterday. He is trying to play some and will let us play with him just a little. I will update in the morning unless I hear something different. We are going to try to rest today. Tim had a fire last night and I was living life in the Emergency Room..... Thanks for all the prayers and support.

Nicki

Saturday, February 14, 2009 10:28 PM CST

Isaiah has been running a fever all day. It got to 106.8 this afternoon and Nicki carried him to Vandy. They have run some tests on him but don't know anything yet. His fever is hanging around 102 with Tylenol and Motrin both on board. I am working 24 hours overtime and will head down first thing in the morning. I will update later tonight if we learn anything.

Thursday, February 12, 2009 6:49 PM CST

We are home.....shortly after Timmy updated we left. We forgot the laptop so we were unable to update until he went to a computer sorry.

So we got to the hospital today and Isaiah was very excited as usual. He saw nurses, nurse practitioners and doctors he knows. His bedside was very full at one point. How I love the way these people can make my child feel so very special. Never is he anxious about being there. He set up in his bed and rode back with them while observing everything he went by.

The worst part of the day for Isaiah was having his port accessed but that was over fairly quickly. So before the procedure Dr Goudy (ENT) came out and told us the sleep study results would not allow for Isaiah's trach to come out. He talked to us about it some but said he wanted to go on and run the bronch and see if anything looked different. The last bronch Isaiah had we were told it looked beautiful. So then we wait for the procedure to be done. Already I was thinking no they can't just base Isaiah's breathing on one sleep study that was not fair to him. I would have to find the right team to help the doctor in making his decision. Somewhere some how they had to do what was fair to Isaiah. Then out comes Dr. Goudy...... it was then I was hit from somewhere out in left field. I am going to be honest and say as long as I prepare myself I can handle just about anything and most of the time with a smile......I DO NOT like surprises though. Isaiah's airway is VERY red right now. This is not normal and not ok. I asked could it be from coughing, suctioning anything. He said if the had to guess he really feels that it is from reflux.....he is supposed to have a wrap at the top of his tummy to make this not happen. Then the tells me his tonsils are huge and then another part of his anatomy is swelled and not placed correctly. Needless to say today has been hard, confusing and honestly I am just ready to go to bed. I don't not know what any of this means yet. They will be working aggressively to find the correct team to figure out how to correct everything. Isaiah can not stay with this redness from acid burning his throat. No wonder out of no where he screams or hits.....ummmm I think I would to. Isaiah is so well behaved 95% of the time then he will throw and fit and he done as quick as he did. Some is being 4 years old but we are all starting to think some is hurting. This means if we get it all corrected the trach may still come out but I don't know.

Yes I am confused, puzzled and to be honest a little angry. Just when we thought he was doing so well we hit a wall. I know so many things could be worse but right now I am going to go to sleep and this weekend Timmy and I are going to spend some time going through all this. I just didn't prepare myself and a child like Isaiah to have reflux to cause this kind of redness is serious....this is nothing to fool with. Please do not take this entry as negative as it may sound it has just been a tough day.

Isaiah did have a blast yesterday at the Farm Machinery Show with Clay and Will. His eyes were so bright and he smiled so much. That will be a day I will always cherish in my heart.....he was beyond excited. I will add Isaiah woke up from being put to sleep wanting to cuddle to mommy and smiling at me. That does make the day better to know that he didn't have to be cut on today and he can wake up and still have that love for me he did when he went to sleep. I just love him so and want it to be fair for him.... So off to sleep I go and finding strength in knowing He is carrying us now as always.

Nicki

Thursday, February 12, 2009 3:05 PM CST

Isaiah is finished with his bronch. We hopefully will be heading home in a couple of hours after he wakes up good. We will update later tonight with how everything went.

Sunday, February 8, 2009 7:38 AM CST

Where has our week gone!!!! We kept last week on a slower pace and it was wonderful.

Isaiah had all of his therapy except one session. He has had a few days this week where he didn't feel good and had a fever a couple of times. Our KY weather has gone from single digits to 65 degrees. Since yesterday was 65 off Isaiah and I went. After a couple of places we ended up at the park and Walmart. The only reason for Walmart was so he could spend his birthday money!!!! Isaiah bought himself a fish tank with a gift card and a little cash. It is a 5 gallon tank and he can get several fish in it. He loves the fish at the hospital and when we look at them at Walmart. So after time at the park swinging we came home and he napped. I got the fish tank together while his Uncle Chris put the shelf for it together....when he woke up he was so excited. Tonight is picking our fish out night!!!!! He has favorites on which ones we look at so we will see what he picks! We then went to the barn and played with Daisy and the other horses. The peacock was acting silly and had his feathers out shaking them so that was something Isaiah found very funny. It really was a good day. We ended the day with something we have never done before. Timmy was working and Isaiah wanted to stay with me and wouldn't go to bed. So we went to mommy's bed and before you knew it he was out. So I decided who needed monitors and I let him sleep the whole night with me. I checked him every few hours and got up and fed him since he wasn't on his pump and all went well. Boy is he a cuddle bunny when he sleeps......I just know his Aunt Amanda is wanting to sleep with him!!!!!

We have some exciting news to share. Isaiah can stand for 5 minutes holding on to something. He needs help getting up but he can do it all by himself and does very well with it. I have a picture I just need to get it uploaded. We are so proud of him we can hardly stand it!!!!! Just another thing he decided to start doing. Such a big boy these days. He is really motivated by other children and he has been around several lately so I think that helps.

Today we are going to try to finish the clean up on atleast the yard. Sunday makes it easier to find someone to help with Isaiah for the afternoon. Then off to get fish!!!! This week is a little crazy. Wed we are going to Louisville for the day to the farm machinary show. I can't wait to see how Isaiah reacts! Thursday is his bronch. Like I said I am not sure what all will take place from there but I will have the lap top there that day. Next weekend his Daddy is off so if the weather is nice we will have lots to get into! Then we may be headed back to Louisville to finsih helping his Aunt Amanda. Fun times for us! I will update towards the middle of the week.

Nicki

Tuesday, February 3, 2009 8:14 AM CST

Hello to all. Well we have once again had an eventful last few days. Saturday we were going to start our clean up. Timmy and his brother got a few hours of things done that had to be done then went to Grayson county. They were much needed in cutting trees out of roads where people still had not been able to get out. Needless to say parts of trees in the yard and on fences could wait when others might need help. That night we had a hot meal when they got home. Sunday Isaiah and I went to church.....hmmm that was an experience. Then we spent the day with my family. My little sister made a visit home to visit with my dad before possible surgery. Isaiah enjoyed seeing Drew and Amanda a lot. We then went to a Super Bowl get together with his buddies. He had a big time with the kids while they played. Yesterday we went and helped my sister register for baby things. Yes I has so much fun helping her and Isaiah was such a good boy the whole time. He then was able to have lunch with both his aunts then back to aunt Jessie's for a nap before therapy. He did really well during therapy so we went to ride the carousel with Clay and Will. He loves doing the mall rides......can we say germs!!!! This morning he is playing and enjoying some time with mom and dad. Both Timmy and myself have a list of things to do today and are going to take turns playing with a boy while the other one gets things done.

Still no news on the sleep study but we probably won't hear anything until Feb 12th when they run the bronch. I ask you to pray for that day. We will see Dr. Gouty then and he will be able to give us more info. I am not a doctor so all I can do is pray Dr. Gouty will know best. So next week is the bronch....should be an outpatient but could be inpatient if they do anything different with a trach. I will not know until that day. On the 18th is the orthopedic doctor.

The kidney team got together yesterday for my dad. Tony has to have one more test and they will meet again next Monday. They had penciled him in for Feb 26th but I am not sure if that will still be the case. We will know more next week.

Well off to tackle the chores here. This week should be a little less hectic. Isaiah has his therapy all week then this weekend there isn't a whole lot going on. He should be able to stay home and play although he always ask to go "bye-bye"!!!!!

Until the end of the week.

Nicki

Friday, January 30, 2009 8:43 AM CST

Well we still have power after this whole winter whatever it was! We are getting ready to head to the barn so Isaiah and I can break Daisy's water. Then back to the warm house!

Schools have been out all week so Isaiah has not had therapy all week. We did go yesterday to Bowling Green to see his other physical therapist who has taken a job there. He did soooooo well with her. After a hour he was still wanting to work. No fear over being somewhere new or nothing. All he wanted to do was work and hug on Susan! Every Monday afternoon we will start gong there for an hours worth of therapy. Hopefully we can get him walking even sooner with her working with him also. I think it was good for him to be in a different environment for therapy.

Isaiah is still feeling well and playing lots! All during the ice he kept asking to go bye bye and wasn't thrilled we couldn't go. Good to get him out yesterday! We drove 30 minutes to Bowling Green and I got half way there and could not believe the difference in the weather. They have no snow on the ground and very little ice. We still have 3/4 inch thick ice on trees after it has melted some and lots of snow. Wow what a difference it was in where you were. Please pray for all without power. There are some neighboring counties that it may be atleast a month before they get it. I must say with all the problems it causes it sure is pretty. Isn't it a miracle how things work..... A change in temps and you are covered in crystals and white.

That really is all for right now. We have lots to do. Timmy's brother is coming to help tomorrow and they are going to start getting things in order around here. Just cleaning the lane off that comes down to our house will help a lot. No appointments next week for Isaiah. His next will be in two weeks when he has his bronch with ENT. Hopefully we will hear some on the trach then.

I would ask you to be in prayer for my dad on Monday. The transplant board is meeting that day to decide what day his KIDENY TRANSPLANT surgery will be. WOOHOO is all I can say. After 15 years of knowing this day is coming we are glad to finally get it behind us. It looks like Tony is a match and he should be able to give my dad a whole new life in 2 weeks! Dad can't wait to swim, eat different foods and take a normal shower....it is amazing all the little things you miss when you can't.

Will update at the beginning of next week.

Nicki

Wednesday, January 28, 2009 3:31 PM CST

We have been without power for 26 hours or so. They have gotten it fixed in our area for the moment. It keeps blinking a lot so we will see if it stays on. Can not explain all the months of work it will take to get this farm picked up. God pruned all of the trees and there is a lot of fencing, picking up and cutting down that will have to be done. Timmy is out right now looking at what fences he can without getting in the middle of the woods. He has already check on the neighbors and done things that needed to be done. There are several widowed around us and he helped in any way he could after he got us taken care of. We are very fortunate for there are people in other parts of the US and KY that are dealing with much worse. It was crazy weather though....ice(lots of it) rain (poured) and snow (few inches) all mixed in 48 hours. Did I mention it is nothing we can play in....way to many trees in our yard with very heavy branches and it is really wet under the snow. Timmy was able to get some wood and since then has cut a lot more. He also got us a much needed generator. We have looked for a long time but not bought one with them being so high. We finally broke down and I am glad we did....all of Isaiah's equipment was able to fun all night along with my freezer full of meat. HMMM did I mention I was able to make coffee....luxuries in life! i have a few pictures I will share later of our winter wonderland!

Isaiah is feeling better. He did well with no power and I think liked us all being together so much! I think during the night we got him a little hot with all the blankets but besides that he is fine. Quick story.....last night when it got dark Isaiah was not happy. Isaiah very very scared of the dark. I had 6 candles in the living room and went to go get him his horse flashlight. Well he loves his but he wanted mine :) So last night he learned to hold a flashlight and play with a toy, how to make it go on the ceiling, how to spin light on the ceiling and how to make funny shapes. He had lots of fun with the flash light and it was lots of fun to watch him. He loved all the toys that light up also.

So now we are waiting for all the trees to reach for the sky and not the ground. Timmy is supposed to work tomorrow and will go as long as the power stays on. Then this weekend hopefully we can get an idea of where to start. Praying for all those without power tonight.

Nicki

Monday, January 26, 2009 8:17 AM CST

We are home.

Last night was a roller coaster. Yesterday we were supposed to keep Isaiah up so we did fun things all day. We went to church, went to eat with Uncle Chris and Aunt Jamie, went to Grandma and Poppas, went to get Madhu then to Rainforest, the carousel and then to the hotel for the study. Isaiah was so sleepy when we got there.

He wore his Cap on his trach for most of the afternoon and fell asleep with it on. That helped a lot and he actually did really well the first few hours. By midnight we were starting to notice more tugging in his chest. His oxygen was in the low 80's to upper 70's and they agreed to give him O2. Between 2:30 and 3:00 he really started to struggle to breath. At 3:00 they had us pull the cap off and they really started to worry about him. They were boarder line calling an ambulance and we told them just to give him a minute. Sure enough a few minutes later his breathing was less labored and he rested better. From then on we left the cap off. So long story short...... he went for 6 hours capped (which I think is outstanding) and he went 2 hours with his normal breathing through the trach. They said they had a lot of good data and would have great information about him. I don't know what the doctors will say or what they will think about the sleep study in regards to the trach coming out. That is all still to be seen. I think Feb 12th will help when they have the results from the bronch. No matter what his mama and dada were very proud of him last night.

I will add that all day yesterday he did well but the secretions in him started to build and he is getting all this junk in him like everyone else seems to have. The stuff coming up is nasty so that makes a difference in how he did. He also had a lot of spells where he would try to vomit. Every time we put food on his tummy he would try. I think it is the drainage. He seems to also be running a low grade temp. which is hopefully stress from the night. I do think he had a few more seizure episode through the night. So he really didn't feel the best either. Right now we are giving him some breathing treatments to break up all that is in his chest.

That is our day and night. Now we are home preparing for bad weather. Timmy has to go into work tonight. I have volunteer training paperwork to go do for Isaiah's school. Hopefully the weather will not get to bad. Timmy is going to try to go out today and cut enough wood to burn in the stove in our basement to atleast keep me and Isaiah warm if the power goes out. I really want him to rest for a little bit before going out with a chainsaw and worst case we will run to a neighbors and buy some. Where we live it is important to have a back up plan. With Isaiah being medically fragile we are on the top of the list but there is only so much workers can do with ice. While he does that I am going to get dinner going for tonight so that we can eat when I get home and we will be keeping a close eye on Isaiah. He is asleep in his bed right now. If anyone needs us today please call our cell phones and we will call you back from the house phone. Thank you for all your prayers. We felt them and they carried us through the night. Off to catch an hour nap then up to get things done around here.

Nicki

Saturday, January 24, 2009 8:07 AM CST

Wow where has the end of the week gone?!?! We have been so busy around here. Yesterday was a beautiful day in KY with temps at 60. Sarah was here with Isaiah while I cleaned so they played outside a lot and they came to Bowling Green to meet up with me and went to the park!

I had several errands to run. Isaiah was good for a few but after such an exciting day was done very quickly. Half way through Sams he started throwing things out of the cart! So we cut our trip short and played games until we could get checked out.

As for his walking he is still doing it!!!!! Let me try to describe this a little better. Isaiah has what is called a gait trainer, which looks like a walker a baby would use.....that is what we call his walker. It has a seat and a strap that goes around the chest area. SOOOOO I was going to put him in the seat when he grabbed a hold of the sides and started pushing it like a normal walker. He had no idea his little bottom wasn't in the seat and he just started. I am hoping to get him a pediatric walker soon. If it takes to long to get it through insurance then I will check the price myself. I really think he needs it. He starts new PT in Bowling Green this week so maybe they will have one we can try. He will continue with his one here but the one in BG is his old PT and I can get him in there so he will have double. Really hoping this helps him along. Please be praying for the amount of time he can have. We are going to have to ask insurance for more time being they only give him 15 visit a YEAR. I really want to take him twice a week. So that is our latest on the walking and the therapy a mommy is trying very hard to make happen.

Now for my largest concern. Isaiah's caps came in for his trach. When you put a cap on him he has to breath completely out of his mouth. Does great with it during the day. It helps that he wears his speaker valve all day so there isn't a huge transition. The problem is when he sleeps. Timmy put it on him at nap time when they got it and he started choking. Since then we have been trying it for longer periods and more frequently. Last night I stayed up pretty late doing three different intervals of time and tonight plan to stay up longer. I was a bad mommy and feel asleep so three is all we got in, I was sooooo tired after the last two days....couldn't there have been a second wind to me like there usually is around midnight. So tonight I will stay awake and work on this throughout the night then tomorrow night at the sleep study I will stay up till 3am and Timmy will get up then and stay up with him. I do really well late at night and Timmy does well in early morning....so it works perfect. I need you to pray for his breathing and that it may not be labored. He fights against the cap some and this is something we need him to let his little body work with. I pray for God's almighty hands to cradle his little chest and give him big deep breaths and not to choke on them. So that is where we are. Pray for Timmy and I as we prepare for the study and the night of. May we have the energy to stay awake through the night, may it not be painful for us to watch him and may we make it home safely on Monday morning after little sleep.

Some have asked about my dad. Tony (the guy donating) went yesterday for his physical and as long as he passes they could be in surgery in a few weeks. Pray for them both. What a gift to be a live donor and help a man you have loved your whole life......oh how we love him for it. I would encourage you if you have not already to sign the back of your drivers license and give life. So many people like my daddy and children sitting at Vanderbilt wait for organs and many die waiting.

Well it is off to play with a little boy, clean the house, pay bills, plan two weeks of meals, go to the grocery, exercise and play with a little boy a whole lot more!!! I love normal things. How I pray this year will bring even more "normal" things to our lives. Like a little boy breathing from his mouth and holding my hand to walk to the barn to see his pony!!!! 2009 may be a year of adventure!!!!

Nicki

Wednesday, January 21, 2009 7:10 PM CST

OK I don't want to speak to soon but there is some news I want to share. Tonight I went to put Isaiah in his walker and before I lifted him to put him in the seat part he grabbed hold of the side. Then he put one foot in front of the other and walked across the living room with the assistance of his walker......he used it like it was a walker and didn't put his bottom in the seat. This is the most independent he has ever been in walking. So when TImmy got home we tried it with him and he did it again. I hope I am not writing to soon but this is the closest Isaiah has ever been to walking. Please pray for his little legs and his courage. He thinks he has to be with his walker to do it and I know he can do it without it.

I will update at the end of the week!!!!

One happy mommy,
Nicki

Monday, January 19, 2009 9:03 PM CST

*****UPDATE Jan 20*********
So I heard back today for the bronch. Isaiah will have his sleep study Jan 25th, Bronch on Feb 12th and his Ortho appointment on Feb 19th. Then hopefully after the bronch they will give us a date on the trach removal. As long as all looks good.....keep praying.

********

My time flies! We are to the end of yet another day and it seems like we just woke up this morning. So the good things about our day today.....we woke up to snow. Just a little but still there was white on the ground. Isaiah was not happy that it all went away when he touched it!!!! We have had a lot of play time, some cuddle time and so learning time. He is working on his body parts. He knows his foot thanks to my dad so we are working on ear and nose. He will show me his ear when he feels like it!!!!

Our weekend was great. Friday I cleaned a house then had errands to run in Bowling Green. I then went and picked up a friend of mines daughter. Madison came and ended up staying until bedtime last night. It was wonderful to have her here all weekend. Isaiah loves having her around. She plays with him and always makes him feel special! Did I mention she is a huge help to me!!!! Then on Sunday we went to church and listened to a wonderful sermon on the sanctity of life. For me to hold my little guy while listening was a little emotional! Then it was time to come home to more friends! Two of his buddies weren't able to make it to his b-day party so they came for the afternoon. Then my friend Brooke and her family came down. And yes Madison was still here having a big time! When everyone got here we headed to the barn to play with Daisy (the pony....sorry I forgot to tell you her name...that is the name she came with!) So can I say there were 5 kids running around her and Isaiah with one of us and she never budged. SHe is such a good pony. She let everyone ride her. Let me just tell you little Mr. Isaiah had such a wonderful time. His buddy Clay got on with him. Isaiah was in front and Clay held on to him. Well you would have thought the world stopped. Isaiah grinned and laughed and wanted more! I might mention this was without a saddle which he usually doesn't do well with. Clay is so kind and patient with Isaiah. When he left he told me thanks and how much he liked coming to play with Isaiah. I wanted to squeeze him and tell him no thank you for being such a wonderful friend! I must share this story. Isaiah was already asleep and Clay wanted me to carry him out. We were looking at the fridge pictures and he was asking about his hospital pictures and in one why I was laying with him. I told him Isaiah was a little scared there and he showed me the others that were hospital ones. Then he said "but look nic nac (what they call me) he is so happy in these". You know if the rest of us could single out all of the happy things. Wow could we not make more of our days. I love a child's mind and heart. I think today Isaiah woke up a little sad that everyone was gone but he had a good day. We can't wait for more time to play with friends. We have several playdates to set up for him and lots of different friends! I will post more pics soon. They are uploaded just have to upload to picturetrail site and re size what needs it then make the slide show.

Our week this week is a little busier than last week. Today was relaxing though. Tomorrow Isaiah's cousin Kylee is coming to stay the day. He will enjoy that. He has two sessions of therapy also. Then the rest of the week he has therapy and I have several things through out the week. Please remember this Sunday will be his sleep study. Please be praying for this. This will be the first time he has a smaller trach in and it capped at night. I may go on and switch the trach and if the caps get here I will try to start that. He does not have to pass this but if he did we would all feel better. Pray for him to sleep that night, not to fight breathing through his mouth and to stay relaxed with no apnea. I will update at the end of the week. Oh, I have also gotten him in with the ortho people to talk about his little legs and ankles. It will be Feb 19th Please pray for this doctors knowledge.

Nicki

Sunday, January 18, 2009 10:12 PM CST

For my dear friend Leslie the pics are up :) Thanks for the email reminder on the doc so here are the pics! I will update in the morning with how all is going. We have had an amazing weekend with lots of memories to share. Also more pics......some even have Isaiah riding his pony!!! The first slide show are just random pics from teh last few weeks. Then the next is his b-day. I think I asked everyone to be sure they did not mind their childs pic being up. If for some reason I missed you and you do not want it up please email me and I will take it off. Hope all of you had a great weekend!!!!!

Nicki

Tuesday, January 13, 2009 7:36 AM CST

We made it to Nashville safe and sound yesterday and then back home again. Timmy needed to work at his part time job so just Isaiah and I went. He was so good for me and such a big boy. He played with his birthday balloon and listened to Taylor and Veggie Tales. On the way home he slept the whole time!

Isaiah got some very good news yesterday. Dr. Kelly decided it would be ok to not see him again for a year!!!! He at first said 6 months then he said I could wait 8 then out of the blue he said everyone else was watching him good and would call and he would see us in a year. At this moment he said unless an emergency comes up he does not need to do anything to Isaiah. His brain seems to have enough room and his face and head have set up well. So if the shunt will stay infection free and he can get his trach out then that means just one procedure this year. That also means fewer trips back and forth. For a very long time now we have been going about once a week....sometimes once every two. This was music to a mamas ears! He said Isaiah really needed a break and he wanted to give us one also. Really until Isaiah's head moves there is nothing more to do. He said that his mouth looks good and nothing has opened back up there. We then went to the pediatricians office. She said his ears look fine. The right ear was not infected the way I thought it might be. So we are wondering if he is cutting more teeth. He sure has drooled a lot and holding his jaw and ear on that side would point to that if it is not his ear. As you can tell all went well yesterday for us. We left at 7:45 and were home by 1:30. Nice to get good news and know that is nothing goes wrong this appears to be a very slow year for surgeries for Isaiah. That means lots of play time and lots of time to develop. Wow, I am so excited......normal kid stuff!!!!

I think we are finally through the gifts. Isaiah had a great time opening all of them and getting lost in a gift world. He was not so excited when Erica and I started taking other toys out of his room. We told him some of the things in his room had to go to make room for the new. He scooted around everywhere putting things in his lap. Not to happy about that but not everything can stay!!!! Huge thanks to Erica for coming down and helping with all of that.

So the rest of the week holds therapy, grocery, getting a house together, laundry and play time. I just love normal boring stuff! I hope that all of you have an amazing week. Be checking back for pictures. I plan on getting them uploaded today and hopefully a slide show done! Lets hope Isaiah will nap a long time. Gotta go get ready for a therapist to come.

Nicki :)

Sunday, January 11, 2009 8:13 PM CST

Wow what a day! Can I say I think a little boy had an awesome day! I just can't believe my baby is four years old.

So last night Isaiah had a special night at his maws (grandma) and poppa's (my mom and dad). They kept him while Timmy went to a tractor pull with a couple of friends and Brooke and I went out to finish up getting things for the party. When I picked him up he was ready for night night! I worked on the party stuff until Timmy got home.....I didn't want to put the color on the cake until last night. We then went to bed.

Our birthday boy woke us up this morning with lots of laughs and smiles. Can I tell you how sweet that little smile was. The ironic part about our day is that Isaiah had no idea it was his birthday. Isaiah can not cognitively understand what today is to him, but at his birthday party he knew it was his special party. He walked in to family and a few friends then more came and he adjusted well. This was one of the happiest times I have seen Isaiah in a long time. All of the kids and adults were people he knows well and he had an amazing time. When happy birthday was sung he smiled the whole time not that I could see him. I was holding him but also couldn't see through the tears. It was an amazing feeling to hear my dad play it on the guitar and hear everyone sing and all I could think was God thank you for another birthday. It goes without saying that by far this has been Isaiah's toughest year. This year has held a huge surgery and once where the doctors said he just isn't going to make it. Then another when they threw their hands up and said we don't know. Then to have your neurosurgeon who has an explanation to all things say "Isaiah is nothing shy of a miracle". All of these things rushed back to me during that song and I held him closer. God willing we will celebrate again next year. No matter what today has been a day we will cherish forever. So many friends with us and so many more we wish could have been there but the space was just limited. I will have pictures up soon to show all of the celebration. This was truly an amazing afternoon for Isaiah....he is worn out now but he had such a good time. I want to say thank you to all who have thought of him today. All of you are all special to us in your very own way and so many have been with us for four years. No matter how long you have followed my little guy thank you. As we celebrate every day of this next year with Isaiah I can't wait to share it all. I pray this next year will be one with sooooo many memories. You know me I am good at making plenty of them!

I need to sign off of here and go to bed. Now that the party is over we can start new things! All went perfect by the way except that I forgot the fruit that was in the fridge at the firestation and didn't sit it out.....I tried to have a healthy snack! We have to be at Vandy tomorrow bright and early. It will just be me and Isaiah going. Please pray for safe travel and Isaiah's appointments to go well.

Will update tomorrow night.

Nicki

Friday, January 9, 2009 3:10 PM CST

Isaiah is doing fine. Seems to have an ear ache on the right ear but hopefully that will go away for him. We are having a very busy week around here. Having one little boy a big party makes for a busy time!

He has slept well today and did a wonderful job for his preschool teacher. He listened, shared, followed directions and all kinds of fun things! Maybe turning four will help him to get out of this three year old mine and hitting stage! Now if he gets ready to hit you can say no hitting and he will put his hand down. Lots of progress made in behavior. He also seems to understand directions much better. His latest words are bye-bye mama (when he wants to go somewhere), my papa (when he is with my dad)and several more. I really feel that when the trach comes out we can really hit the communication and speech stuff hard. He can do it.....he could do it before and he can do it now.

His sleep study is on Jan. 25th. We have to be there at 7:00 that night. No nap that day so that might be fun. We are going to go and get Dr. Madhu that day and go to Rainforest to eat so that might help. Still no news on the bronch. I am going to call on that and make sure they have not forgotten. I am also going to call his orthopedic doctor. I am a little concerned with his feet and he missed his year check up when he had meningitis so I want to check on that. All has been finalized with insurance and it looks like it will work for Isaiah to keep the same doctors. That is a huge relief for me. Isaiah will go on Monday to see Dr. Kelly for a check up. This should be a quick routine thing. We were going to see him in Feb but for some reason they called and moved him up. I am not going to complain....we can get it over with!

So my big boy turns 4 on Sunday. I am so excited. This has been a year that we are glad to put behind us. Lots of fun things when he was three but lots of very scary moments. Hopefully while he is four he will get his trach out and learn to stand. These are our medical goals and of course there will be lots of fun memories to make!

Well I need to finish up all of Isaiah's party things. I am off to put my mind to work on the cake! I have looked through lots of web pages and have drawn out several things so I think I am ready! I will update on Sunday night. His party will be Sunday, his actual birthday. It is at the fire station and there will be lots of fun for him and his friends!

Have a blessed weekend.

Nicki

Wednesday, January 7, 2009 8:11 AM CST

We are all a little busy right now getting ready for a 4 year old birthday party!!! Yes it is Birthday week around here. I will update tonight or tomorrow. Just wanted all to know Isaiah is fine. His ear is hurting a little again but hoping that goes away.

Nicki

Wednesday, December 31, 2008 7:34 PM CST

Now for our update....

We just got back from our adventures in Nashville. Today Isaiah saw the ENT. So the big news is we need everyone to pray things will go in Isaiah's favor. They are going to start the process on taking the trach out. This does not mean it will come out tomorrow but hopefully in the next few months. Step one is in the next few weeks we will go for a sleep study. Next they will run a broch to look at the airway. Then they will put in a different type trach. Then when everyone agrees they will take it out. The problem is now or wait until middle of the Spring. I made it very clear I wanted to wait no longer than the first to middle of March. Please pray for his physicians and for the Great Physician to guide them. This is a very important decision that has to be made. I am praying that my gut is right and that Isaiah will get this out so very soon. Oh how I want this for him and for all of us. He hates his trach and pulls it out all the time. He will then have so much more freedom. He can take a bath, swim, play in the sand and be outside more. Did I mention he will be able to talk and laugh nonstop!!!! Even typing that this was discussed in an appointment today is a huge deal. Pray for it to come out and my patients more than anyone as we wait these next few months. What a great day it will be when it comes out for good and we can go on in a more "normal" way......what is that anyways!!!!! Did I mention that we had a trip to Opry Mills after the appointment to get Isaiah some shoes and a winter coat. Both he needed very badly!

I am in the process of planning his birthday party. I can't wait it will be a lot of fun for the kids. He is having a real firemans party and the firestation!!! Now if I can just get the games planned out and all of it done!!!!!

So the other issues for the new year......First and most important is his trach. Next I ask you to pray for his insurance. He has currently run completely out of the 2 million Timmy's employer allows and now it is on to how to handle things. We have prepared for him to have KY medicaid but the question is can his doctors stay the same. This is something I have been working on for a long time and ask you pray for things to work. For the upcoming year I also ask for you to pray for Isaiah's little legs and that they may carry his weight soon. He is getting very heavy and needs to walk. Now for my big praise......in January there is a wonderful man who is going to take a physical to see if he can be a kidney donor for my dad. He matches him so he can give him one we will just have to see if he passes the physical. He really feels this is something he wants to do and I could never thank him enough for loving my dad enough to want to give him life. We will know soon as to whether they will be able to do this but please pray for the right thing to happen for everyone.

So as you bring in your New Year I hope you are safe and think of all the good things that have happened to you in 08 and prepare yourself to make an amazing 09'. We are ready to make the most of 09' and can't wait!!!!

Until 2009......

Nicki

Monday, December 29, 2008 10:08 AM CST

Now finally for an update. We have been very busy going places and we have had lots of new things to play with. Not to mention we need to get rid of some of the old. Yes I officially feel like I am drowning in it!!!! But the boxes are gone so that is a start!

Isaiah seems to feel a little better. He is laying a lot which I think should tell us his head still feels a bit dizzy. I pray this is not a new habit but just that he doesn't feel the greatest with his ears. He is almost done with the antibiotic and when we go Wed. I am sure they will suction his ears. Hopefully that will make him feel tons better. He is playing more and a little more excited about things. Just hope he feels better for his big birthday party!

As for our Christmas. It was so much fun. Not to bad crazy which is always my goal. Christmas Eve we spent a lot of the day at my parents house then went to my grandmothers. Isaiah got to play with his cousins and for it to have been at night he did pretty well. We then went back to mom and dads to do Christmas there (they are only a few houses from each other). Isaiah and I stayed at my grandmothers that night since Timmy wouldn't be home. After we were up and visited we went to my moms and spent the rest of the day. We got home before dark and Isaiah went to bed pretty soon after that. He was so tired. Then on our Christmas morning Timmy got home. Isaiah didn't feel the greatest but was as excited as he could be with things. Timmy's brother and his wife came and spent the morning and had breakfast....a big breakfast! We then went to Timmy's families where he got to play with his cousins Jax and Ansley.....can I say he just loves them so much. THat was really the first real smiles we got out of him that day was when he was playing with them! Yesterday he went and had Christmas with Clay and Will which was lots of fun! He was very tired but had fun playing with them!

Isaiah seemed to really like his pony....or for how he felt. A friend of mien is letting me borrow a saddle and we are going to have one made for him. He is not crazy about sitting on any horse without a saddle! He reminds me of his buddy Will when it comes to that! He got a chair to sit in here in the house and uses it a lot. Throughout the holidays from people he got mostly music stuff and tractors which he loves! Lots of things and there was nothing he didn't like! Timmy and I had a big time also. I got a new camera that will take excellent pics of Isaiah! I am so excited about it....Timmy did a great job! I have lots to post when I have time to upload them all!

SO I think that is about all of our Christmas adventures. There are lots of things to post for the new year but I will update at the end of the week with all of that...several praises I can't wait to share and some things to pray for also. Time to get back to Isaiah now!!!

Nicki

Friday, December 26, 2008 1:04 PM CST

So I will put more of an update up later. I wanted to put a couple pictures up of Isaiah's suprise. He doesn't feel the greatest today so he is a little crabby. He still has some things to open. Maybe he will feel better tomorrow and we can spend more time with her.

Pony pic......
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Tuesday, December 23, 2008 5:57 PM CST

HINT 5
She will have a big red bow around her neck.

Will put a picture up here in a few hours!!!!!

We are home and Isaiah is doing well. He is pretty tired and worn out from the day but doing just fine. His blood work is getting back to normal. His white blood cell count is normal and his CRP is at 40 so it has come down and we suspect it will continue to.

I think he will go to bed early tonight! After the appointment we went to his grandparents to wait on his aunt Amanda and Uncle Drew to see what they are having. Proud to say a healthy little boy!!!! I really wanted to buy hairbows but the baby is healthy and now Isaiah can pass his clothes and other things down!!!! After that Jessie (my other sister) came down to bake cookies. We decorated several and will finish them up tomorrow at my mom and dads. Timmy got to do Christmas with them today. He will be working tomorrow and they are already holding overtime on Christmas day so he will be working then also. Mom and dad leave for Florida that day so they can't join us for breakfast like they usually do on Christmas morning....I think Isaiah's uncle Chris and aunt Jamie are though. So we have had a good day at the hospital and just relaxing with family so now it is off to finish baking.

We will update tomorrow with how Isaiah's doing and the final clue. A picture will be up on Friday morning.

Hint #5: He can share his suprise with his friends.

Hint #4: It will teach Isaiah responsibility.

Hint #3: Road trip required.

Hint #2:
Isaiah's surprise will need accessories. Several actually!!!!!!

HINT #1:
The surprise will be with Isaiah for a very long time.

Tuesday, December 23, 2008 6:42 AM CST

Isaiah had a good night I will update when we get home gotta get on the road. Temp stayed down!!!!

Monday, December 22, 2008 8:29 AM CST

**** Isaiah has had a good day. His temp has gone up just a little over the afternoon. Currently at 100 but no higher so lets hope it stays that way. TOmorrow he goes to the doctor. Please pray for his blood work to be good. If it is not I am sure they will put him in the hospital. He is starting an oral antibiotic. He is being very spunky though!!! I will update in the morning before we go with how he is doing and hint 5!

During the night the highest Isaiah's temp got was 100.5 after I got the 102 to leave! He woke up this morning playing and happy as can be. His temp is his normal 97.1. Praying he will continue to be happy and the temp will stay gone. Hopefully the antibiotic did its job. I will update more this afternoon. Not sure yet if we will have to go down there today. I did cancel my houses for the day so that I could be home with him. I think Mrs. Sarah may come for a little while to play so that I can get a few things caught up. The morning is starting well for Isaiah so lets hope the rest of the day does also.

Hint #4: It will teach Isaiah responsibility.

Hint #3: Road trip required.

Hint #2:
Isaiah's surprise will need accessories. Several actually!!!!!!

HINT #1:
The surprise will be with Isaiah for a very long time.

Sunday, December 21, 2008 1:43 PM CST

***10:55
Temp is hanging between 100 and 102. We will see what they say in the morning when I call.

Sorry there is not a hint #3 up. Unfortunately we are just getting home from a very long night in the Emergency Room. Yesterday I had a little bit of a road trip to see about a special surprise (hint #3) and Timmy called to tell me Isaiah was not feeling well and his temp was 103. With a VA shunt and that quick of a temp spike he had to go to Vandy to have blood work. I was confident it was his ears but then the high fever for 11 hours straight without dropping below 102 played its toll on him. We ended up having to stay the night until the pediatrician could get there this morning. When we were taken in his CRP (level of inflammation) was 60, should be zero, then when they drew again 6 hours later it had doubled. Isaiah slept on me all night and they brought TImmy a cot in. So we all got a little rest for 4:30 to about 8:00.....well off and on rest. Timmy is off for 12 hours and will go in tonight. They have let us come home but only because they know he will get the same care here he will at the hospital. The tricky part is will we have to go back tomorrow to run more antibiotic through his IV. Well that is still to be found out. I am praying that the strong dose from this morning will take care of the ear infection and I am praying that is all this is...that would be the best Christmas gift of all. So now we are home and trying to do normal things. I think I have had enough coffee to make it until bed time!!!! Isaiah is asleep in his bed right now sleeping comfortably with Motrin. They did test him for everything you can imagine. His chest x-ray looked good, no flu, RSV or any of that stuff. His head is not swelled and the blood culture has not shown any growth. Pray for the afternoon to hold healing for my sweet boy and that he may feel better. How I want him to be home to celebrate the birth of our Savior.

I will update late tonight with how he feels after he naps in the comfort of his own bed.

Nicki

P.S. did I mention you guys all made me smile when I got home and was able to read all of the guesses.....

Hint #3: Road trip required.

Hint #2:
Isaiah's surprise will need accessories. Several actually!!!!!!

HINT #1:
The surprise will be with Isaiah for a very long time.

Tuesday, December 16, 2008 7:50 PM CST

Alright here it is

Hint #2:
Isaiah's surprise will need accessories. Several actually!!!!!!

HINT #1:
The surprise will be with Isaiah for a very long time.

Sorry for the lack of update. Boy have we been busy! Today we drove home from Louisville after having Christmas with Harrison!

Isaiah's trach culture never grew anything so we are assuming it was just where he was dry. Now you never know if he will be dry or runny! The last few days he has had a runny nose....well from the trach and his real nose! Yesterday around noon his ear also started to run. I am actually glad to know it is all coming out and not sitting in his little head. He is a lot happier with a little Tylenol but he is sitting more. I would say he felt so stuffy that he didn't want to sit. Hopefully all of this will clear and he will feel the very best he can for Christmas.

Last we we were pretty busy and on Sunday we were able to take a trip to see Harrison. We didn't get there until a little late but Harrison was waiting up for us....boy a little red headed boy was excited to see us! Monday we did a couple errands then gave the boys some time to play. This time they were really playing well together. They played with the same toys and interacted a lot. Isaiah would fuss over some things or Harrison would want to do something else but it was such normal little boy play. Last night they exchanged their Christmas gifts....Isaiah got his own watch and a car that plays the song "Hot, Hot, Hot". Isaiah is really in to opening presents right now! He opened it but as soon as he could see what it was Harrison had to pull the rest of the paper off. He pressed the button and the truck started singing and dancing and there went Isaiah and Harrison doing their own little dances. Ann Kelly and I laughed and laughed at them. Today there was a lot of snow and ice but Isaiah and I were able to come on home in the afternoon. If schools are in he has therapy in the morning and we have a meeting in the afternoon.

So that is about it. Tomorrow will be therapy and meetings then off to the grocery to get things for candy making. Tonight I made Friendship Bread and the house smells very good. Then the rest of the week will be busy. Sarah will be here Thursday and we have the meeting at Isaiah's school on Friday to discuss his IEP (his therapy services and preschool). It is hard to believe we are so close to Christmas. Thanks to Ann Kelly for helping me get a few places to get a little more shopping done. Still not done but getting close.

I will update Friday after his meeting. Oh did I mention wow the the emails I have gotten over his Christmas surprise. He will be getting this gift after all but I think we may keep it a secret until he knows what it is! I will give a hint next time.

Nicki

Tuesday, December 9, 2008 5:09 PM CST

We are home from the appointments.

Dr. Donahue really feels like Isaiah's eyes are doing well. He sees no reason he needs glasses or patching. We were relieved to hear this. He feels that he does use his left eye much more than the right. He doesn't feel this is a huge problem as long as he alternates. Isaiah really used his right eye for them more than I usually see him use it but they were making it work.

Then we went to see Dr. Tulipan (neurosurgeon). He felt of Isaiah's head and really thinks that it all looks good. He was making sure development and all was progressing again. He agrees that Isaiah has had a hard year and it will just take some time to feel 100%. He wants to see him again in 6 months which made us happy. He did leave on the note to keep our fingers crossed about anymore shunt infections......not happy to hear him say that!

We had to go over to get a trach culture. Isaiah has had some problems with blood in his trach but we are just hoping he is dry. This crazy Kentucky weather is taking a toll on him I think! I will let you know the results.

We then went down to the River on Music Row. We did our interview with Rhino and it will air in March when they have the radiothon. He did ask us today if we could come do a live interview and we told him we would be happy to do that. I think it went well. We just hit the high points on our little miracles life.....had we not of we would have been there forever. There was a signed picture of Taylor Swift on the wall and I was showing Isaiah. Well he thought it was great he loved her so much so then he went and brought Isaiah out her latest CD. So sweet of him and a huge thanks to the River 107.5 for taking so much time to make the radiothon happen for the Children's hospital.

That is about it. Tomorrow we are going to have Isaiah's Christmas pics taken. Hopefully then I can get a few cards out.....wow I am way behind. Candy making starts next week! It looks like Isaiah may be getting a huge Christmas surprise. I am going to keep it a secret for now to see if it works out but if it does he will be thrilled!

Will update with Christmas pics as soon as I have them....if not will update at the end of the weekend. Enjoy time with your family.

Nicki

Sunday, December 7, 2008 11:29 PM CST

I am so sorry to all that I have not updated....yes no news is good news!!!!

Things are just busy with Christmas. We finally got all of our decorations up. Well I still have a few for outside but really its all done! Isaiah loves the tree. His favorite is a little John Deere tree we have in the dining room. He pulled the whole thing over on him yesterday and was trying to wrap the lights around himself and hang a few ornaments! He doesn't do that to the big tree in the living room or the 5 ft tree in his room......yes we put his big tree back up in his room that Mrs. Susan gave him last year. He really loves it. We spent one day hanging beads, glitter flakes and all kinds of things on it. Lets just say he thought it was great! He is really good with it. There is a gingerbread man that sits beside it that is literally taller than him. They are buddies he hugs it.

Last week we got lots of play time and some snuggle time in. His asthma and allergy stuff seems to be just a little better maybe. He has coughed some blood plugs up but I really think that is where he will be dry or really runny. Just like a normal nose his trach does all the stages! We really didn't go hardly anywhere with him last week and it was nice to half way relax!

Friday night he was going to stay with his grandma and grandad (well papa and maw as he calls them right now.....very cute to hear him do it). Timmy and I were finally going to get to go see the Christmas pageant our church puts on. Every year since he has been born at Christmas and Easter things happen. Well we dropped him off and getting ready to leave my parents subdivision and mom called to turn around. His feeding tube had somehow just popped out. We thought we had one but ended up we only had a cath to put in it. The hole a MicKey button is in will grow up very quickly (like 30 minutes). So we got the cath in it and sent my dad to the pharmacy for a special syringe while we cleaned the old one. We got it back in without problems. My poor parents. They did amazing but it just had to happen to them....that is the first time this has ever happened! Needless to say Tim and I missed the pageant and went to eat! Tonight he ended up getting to go back with them while we went to Timmy's works Christmas party and he had a blast. He gets so excited to go play with them!

Really that is all we have been doing. Isaiah does have a few appointments this Tuesday. Eye and neurosurgery. They will make a decision on what they think he is doing with his eye or not doing may be a better way to describe it. After all that we will go to the radio station to do an interview for the Children's hospital radio thon. So a busy day. I will update after the appointment.

Nicki

Saturday, November 29, 2008 8:26 AM CST

We have had a very busy week!

Isaiah is feeling a little better although he still has some junk in him. The last night of his steroid was last night so we will see what happens. The coughing spells that he has seem to be fewer and he is needing fewer treatments.

Our Thanksgiving was wonderful. I hope that everyone else had an amazing day. As we have done in the past we had Thanksgiving for my whole family down here. We were blessed with a beautiful day. After the meal when everyone decided they could move :) most everyone went to find something to do on the farm. Some walked to the creek, played football and then we even got a horse out to saddle. My Blue Eyes did wonderful as people had there turn riding him around. I don't have a bridle yet for him so I had to lead him....such a wonderful animal. Once it started getting dark some played spoons and others played Rook. Lets just say it was a wonderful day with family. Isaiah loved having his cousins here with him. When they all got here and came in his room to begin playing with him he just smiled.

Every night when I go to bed I think of all the things I am thankful for that very day. Every single day is a blessing and in our world we try to find the good things in the day. On Thursday I started to think about the whole year. Wow what we have to be thankful for. When my family was here I thought of how my grandmother had fought the cancer in her mouth and all the hurdles with it my, aunt who fought breast cancer, the babies running around, the one who is growing safe in the womb right now, daddy who is still waiting for a kidney and the fact we were all able to be there together . Then I thought of sweet Isaiah. It is hard to believe since last November Isaiah had his midface advancement and has battled bacterial and fungal meningitis. He has proven doctors wrong twice when they just felt his little body would be to tired to fight anymore. Then I think of all the play dates he has had, friends and family he loves so much, the days at the zoo, times at home playing, walking in his walker, riding in the wagon, his first riding lessons, learning to steer Daddy's farm truck, playing with his Lady and so many other moments. Did I mention that sweet smile that greets me in the morning......those are the things in life I am thankful for. Tomorrow or today could change things in my life but I have those moments and so many more. I could not end this without being thankful for our Savior who loves us so. These blessing in my life are a gift and I thank God daily for everyone of them. As we approach the birth of Christ I am thankful for that very day and all that means for me.

Hope you had time to reflect on what you were thankful for. For those who sent me messages through my phone, email, website or facebook thank you for letting me know how thankful you were for Isaiah and his life. I was amazed at how many messages I got this year.

This week will be one at home. Today we will try to get some of the Christmas decorations up and go to Tim's family Thanksgiving. Thursday night we went over to my moms and helped decorate her tree. All three of us girls got to put the ornaments up so that was fun. I will update later in the week. Hopefully all will go as planned and we won't have to go to Nashville this week!!!!

All of you are a blessing in my life,
Nicki

Monday, November 24, 2008 9:42 PM CST

We are home from the doctors.

All of Isaiah's bloodwork looks good. This means no bloodwork next week. We are really excited not to have to travel but most of all we are excited Isaiah doesn't have to be poked on. He also got his flu shot today. Bless his heart he screamed if he got near the table and fell asleep in his stroller right before the shot. Then mommy had to wake him up to be stuck in the leg, then Mrs. Jackie had to take his blood. He was one unhappy boy.

This weekend Isaiah has been fighting the same old chest stuff everyone else has. One minute he seems fine and the next not. It is because there is a lot of wheezing in his chest. Last week we started him on an inhaled steroid and his normal albuterol but when we went in today she said he need a steroid. So when we left Vandy today Karen (Timmy's cousins wife) and I headed back to Bowling Green to get Isaiah's Pediasure then to the pharmacy. I had some great girl time and today ended up being a hard day for me so it was so nice to have her with us. Did I mention she jumped right in there with Isaiah like she had been taking care of him forever.....she was amazing to have with me. Oh and Isaiah was a show off for her it was really cute...the first 10 minutes he spent showing her tricks. We then went to Timmy's aunt and uncles to eat. Isaiah had a blast playing with Jax and Ansley and visiting with everyone. I had a second to relax before heading home!!!!

We had a great weekend. Isaiah had two friends over on Saturday. Garrett got to play with Isaiah while his daddy helped Timmy. Then Harrison stopped by to play before heading to TN for Thanksgiving. Can I just say Isaiah was thrilled to have friends over....it was really good for him. He really tried playing with them this time....he would scoot right up to them and try to play the same things. I was really glad to see that out of him. Isaiah wore out quickly and had to rest frequently but had a good time! Sunday he spent most of the day resting to prepare for the doctor today (and getting albuterol).

Well this week is another busy one. Wow can you believe Thanksgiving is here already. I am so thankful for my little blonde headed boy in his room right now. So many times this year he has been so sick...but then I think so many times he has played and had a good time. That I am equally as thankful for.

I will update on Wednesday night with how his little lungs are doing.

Nicki

Monday, November 24, 2008 9:45 AM CST

We are off to Vandy today. Lab work and hopefully that will be it for awhile. I will update tonight once we get home.

Nicki

Friday, November 21, 2008 7:13 AM CST

Nothing new going on around here. Just normal boring stuff!!!! So glad to type that.

Isaiah has had a good week. He has more energy during the day. When he gets tired he will lay in his bean bag and rest rather than going to sleep in his bed. When in his walker he is everywhere. I have had to warn all of the big people around here to be very careful with what they put on the tables. When he gets in the walker he goes all around looking for well just stuff!! The other night when I was cooking I saw a little hand come up and try to get my stuff and realized that is my Isaiah's hand and he is tall enough to reach on the cabinets.......why did no one warn me he was getting big :)His other favorite thing are electrical outlets. I really think he likes them because he gets a huge response from me!!! Oh and lately he wants to go everywhere with Daddy. Daddy and Uncle Chris have been going lots of places together and Isaiah screams now when they leave without him. When they go hunting or take a deer in he has just screamed this week. He is really growing up on us.....and I couldn't be more excited for him. So really just normal kids things around here. He is going to bed early at night although he does go to sleep until around 7:30. He wants to be in his bed at the end of wheel of fortune. At night he is sleeping a long time and not waking until usually 7:30 in the morning. This is good for his body though. Plenty of rest.

Next week Isaiah has a lab work appointment next Monday. Then we are off for a week and he won't go back until Dec 9th. Please pray that his labs look wonderful! Well I am off to another busy day. I did have some time yesterday to get my haircut. Thanks to Emily at Polka Dot Parlor.....if you need someone to cut your hair she does an amazing job and has an amazing heart. Thanks Emily for giving me time to relax!

Nicki

Monday, November 17, 2008 9:20 PM CST

We are home.

Isaiah's labs looked really good. He will not need potassium this week. Next Monday we will go to the doctor for one more blood draw. As long as the labs still look then that will be our last once a week visit for labs. Then it will just be the 5 (I think) appointments for the month of Decemeber. Don't they know that month is busy for us!!!!

He has done well today. This morning he had a good bath and loved playing with Daddy in the bath. We will be so glad when we are able to give him a bath on his own. Hopefully for his birthday list we can put bath toys!!! He loves a bath but with the trach he can't just get in. Isaiah's uncle Chris ended up riding with us to Nashville. After the appointment we went to Opry Mills mall. Me and Isaiah went to find him a Christmas outfit while daddy and Chris shopped in Bass Pro. They didn't mind at all that Isaiah and I were an hour shopping....hmmm!!!! I think I found him and outfit. I like it but not crazy about it. It will be one he can wear all winter. I thought this would be much more practical than an actual Christmas sweater. The main thing is we wanted a hat for his bald little head that has glue all over it still. We found a black cordoury hat....he will have matching pants and a sweater!!! Pictures soon!!!

Well off to bed.

Nicki

Sunday, November 16, 2008 10:13 PM CST

Isaiah has had a pretty good weekend.

Friday night Timmy and I decided we really wanted to go watch my moms best friends son play football. So off to RJ's football game. Mom agreed to watch Isaiah so we had a date!!! Did I mention that they won! I don't understand it at all but TImmy really enjoyed it and I enjoyed watching RJ and cheering him on!!! When we got back to moms we had a bit of a scare. Mom was sitting up rocking Isaiah and it was almost 1 in the morning. He had started to dry heave. We looked at his head and it appeared to be swollen. Rather than rush him we wanted to give him a few minutes to see what it would do. It started to go down some. He had a lot of congestion draining and we think he was trying to get it up and that much pressure swelled him up. We stayed at mom and dads rather than making Isaiah get in the car that late. His head continued to go down and he cuddled to mommy all night in the big boy bed.

Saturday morning we spent at my parents then went to town to meet a couple friends. Then home for me and Isaiah. Today has been a lazy day for Isaiah. He spent most of it with his daddy. I was invited to a jewelry party and went with a friend then we went to get groceries. We really did have a good time this afternoon and evening. It is nice just to go and get out for a little while.

Tomorrow Isaiah goes to the doctors office. We did not give his evening dose of potassium. They will check his blood levels and see where he is at with everything. I will be glad for her to check him after his little spell this weekend. Overall he is doing great. Back to his normal napping schedule. He does still tire out easily but everyday is an improvement.

I will update tomorrow night when we get home from Nashville.

Nicki

Friday, November 14, 2008 6:54 AM CST

Yesterday went by very quickly and I realized this morning I had not updated.

Like I said the labs look fine. We are really hoping that by next week we can wean him more fromt he potassium. We go back next Monday to see the pediatrician again. For the next few weeks she told us to go ahead and mark it on our calendar. The reason in all the labs is the ampho-b he was on. It is a really tough medication and can mess with your levels for weeks after coming off of it.

Isaiah is finally starting to build some strength. We were going to attempt therpay this week but he couldn't do it but I have already started scheduling for next week. Yesterday he only had one nap. He went to bed by 7:00 but with the time change that doesn't suprise me. I will say he is still asleep now. I am up getting things around here done before I go clean a few houses. Last night in his walker he walked and walked. I was cleaning our house and he would try to help. He is good at taking all the frames off the tables, notepads off the computer and opening the closets to show me the mess!!!!! Hey I am not complaining just think it is really cute....and I follow in behind him and pick it all up. I appreciate the fact he is doing these things, tells me he is getting back to his old self!

Well I need to go. Will update at the end of the weekend.

Nicki

Thursday, November 13, 2008 7:35 AM CST

Just have a second. Isaiah's bloodwork looked good. He will need to stay on a little potassium for a little longer. He will have his levels checked again next week. Will update more this afternoon we have to run errands right now.

Nicki

Wednesday, November 12, 2008 7:57 AM CST

This morning we are getting ready for the doctor. Oh is Isaiah going to be angry when they have to draw blood. Lucky for him he has his port so it is one stick and plenty of blood.

The past few days have been tiring for my little guy. He has been getting just sooooo tired. He will play then rub his head or just lay it over and want to go to sleep. Like I said this will be a very long process. Yesterday 2 therapist wanted to come and he was just to sleepy and aggitated. HOpefully later in the week. Yesterday just wasn't his day. He woke this morning very happy and is in his room with his truck bin and his guitar.....I can see it now playing a guitar on the back of a truck....look out Nashville :)

We leave here shortly for Nashville so I must go get us ready. Pray for safe travel as the roads are wet. Also pray for his test results....all numbers within range and as little pain as possible for Isaiah.

Nicki

Sunday, November 9, 2008 9:14 PM CST

We are home.

Today has been a relaxing day for us. Timmy is at work and Isaiah and I have done nothing!!! Timmy's brother was hunting down here and his wife spent the afternoon watching movies with me so we had a great day! Girl time while Isaiah napped!!!! Plus Isaiah loves time with his aunt and uncle.

Isaiah is doing well being home. He is sleeping a lot but I really feel like it is his body healing. He had 2 naps today both about 2 hours. He did get up at 4:30 though. I think he can finally rest with no one needing to do anything to him and he is finally starting to let his little body heal. I really feel like this time will take him longer. He goes 110hen he is going but it does not take him long to tire out. He would give me just 2-3 hours today between naps or times he just wanted me to rock. So that is what we have done. Yesterday when we got home the grocery shopping really needed to be done and I thought he would enjoy the shopping cart as he always does but half way through we just had to stop and be done. Pushed him to soon I guess. So until we have to be at the doctor on Wed. Isaiah is just going to have some lazy days until he feels like doing something else. I am going to go ahead and call therapist back in as soon as they can start coming. If nothing else to get him back to getting used to them coming in. Then get him his time back with Mrs. Sarah every week...boy will he be excited to have her back again. He loved his time at the hospital with her and all the nurses bragged on the two of them together....she is great with him!

So for us it is back to trying to get back to normal. I hope by next week he will feel like playing with some friends if for a little bit of time. We take him back to the doctor on Wed. to have his blood levels checked along with his potassium. Right now we are giving him fairly large doses twice a day. Hopefully we can start to wean him on Wed. My wonderful grandmother is going to make this trip with us. She wanted to help and it gives us great time together. The week after we will have to have blood work again then lots of appointments for the first of November. He will have to see the neurologist, neurosurgeon, ENT, and lots more before the new year. I am hoping that some big steps can be taken for Isaiah in the near future. Praying for a trach removal and possibly looking at other things.

Well I guess that is it. He is down and had all his nightly meds, feeds are hooked up, trach mask on, pulse ox hooked and lots of night night kisses! That means that I am officially not going to worry about the mess that surrounds me and am going to bed! Lots of phone calls and orders face me in the morning........

Nicki

Friday, November 7, 2008 10:31 AM CST

9:02 UPDATE
All most all is in the van. Now just waiting for in the morning. I am not a patient person and it seems that in the morning is 30 days away for that is how many days we have been here.

Really it seems hard to believe we have been here so long but yet so much has happened. Isaiah has been on yet another roller coaster but is again going home with us. This infection has by far been the toughest I have seen him go through. Praise our Lord for this miracle. The leaves are almost off of the trees, they were still almost all green when we came here. Timmy lost a cousin we so dearly loved. We have seen how once again family and friends help us out so much when we truly need it.

Now it looks like tomorrow morning we will be on the road. I want to say a huge thanks to Mandy who has a son here herself getting an antibiotic to prepare for Chemo. She came down today with a surprise for Isaiah....couldn't resist he need for a THomas!!!!! Then she came back tonight to help me get things out to the van and everything loaded. Thanks so much for your help....you are amazing. Tomorrow morning all I have to get out are the few things in the room and Isaiah! We have to wait for the doctor to round then we are out of here. I wish we could leave when he wakes at 5:30!

He has had a wonderful day. He has been active and going all day. He had a good long nap and is sleeping right now. He is a little restless but he probably senses his mommy's restlessness. I am just ready to go and pacing!!! It is 9:20 and I should be asleep but instead I am rambling on Isaiah's page! 12 more hours! They have been wonderful to us here on the seventh floor. Isaiah has been up and down these halls for days and they give him ohhhh so much attention. He will once again miss his nurses when he goes home and did I mention his 5th floor nurses are up here all the time!

I am going to try and sleep now. As I said pray for safe travel and TImmy to be safe. TOmorrow is the important morning of opening season for deer so we encouraged daddy to go have fun. We will make it just fine and see him when we get there. He got things ready today and picked up my dog so he has been busy. Off to bed....

Isaiah actually slept in till after 6:00 this morning so he is still up and playing and hasn't napped yet. He is laying down resting. He ran around in his walker for an hour this morning then we have been getting laundry done and trying to pack. When he naps I will start loading things into the van.....wow what one little boy accumulates over 30 days. My hope is to have everything loaded by tonight so that when we get up in the morning we will have just a few things and can get out of here as early as possible!

All the test results are still looking good. He is getting back to being more of his old self. Actually he is in his bed while I am typing saying mama and spitting at me. What a BOY!!!!! He has learned to spit and thinks it is the coolest thing in the world.

Please pray that things will continue to go as planned. Pray for his health and that all will get loaded with no problem and for a safe trip for me and Isaiah as we travel back tomorrow morning. Hopefully we will be back by nap time!!!

Nicki

Thursday, November 6, 2008 7:40 AM CST

8:08 UPDATE
Nothing new. Isaiah is resting under his benadryl while the meds go in. Timmy went on to work tonight being we feel we have a plan and I felt comfortable with him leaving. Had there been an infection things would have gotten hard very quickly and I needed him here but it appears the problems came from the clot.

I will update in the morning. I am not feeling the greatest so I am off to bed hoping to be able to breath! HMMMM wish I was home to cook potato soup....comfort food!!!!

10:35 UPDATE
Isaiah has had a good morning but wore himself out early so he has already had a nap!!! His CRP levels are down today. Not where they are supposed to be but going down. His white counts are going back up to normal.

Infectious disease just left and they feel comfortable with where Isaiah is right now. They said if he stays on the same path he is currently on then Saturday morning he can go home. As early as he is up who knows we could be out of here before most are up and going on a Saturday morning!!!! We will have to clear the plan through neurosurgery and make sure general peds is still good with it but it looks like it will all work.

So we need to pray for no fever, all counts to stabilize and Isaiah to feel good!

I will update more when neuro comes in but for now all is looking good.

Isaiah had a pretty good night. His temp stayed down all night. His CSF culture still has shown nothing and they should read the culture this morning....well probably right about now.

They have drawn blood and we are waiting on the results. As soon as I know about them I will update with that information. We are praying that maybe all this has to do with is the clot. It may or may not have been but we are hoping.

Right now Isaiah is up playing and happy. I am going to try him in his walker here in just a little while. Once all the data is looked at we will know more for him. If it was just the clot who knows they may go ahead and discharge him as planned.

All is up in the air right now which most of you know makes me crazy but I will be patient and see what the day holds. TImmy did take off half a day to hear what the doctors have to say and be here with me to get a plan.

Will update soon.

Wednesday, November 5, 2008 9:41 AM CST

SO here is what I know. They have tapped his shunt tonight. When they tapped it there was a lot of pressure. They feel like there was a clot at the end of it which evidently can happen with a VA. He is on an aspirin a day to help with this but they had to run a clot buster into the head. He wasn't excited about that but who would haven been. Then they had us go for a shunt series. Not heard anything about it right now. The stain has not shown bacteria yet and doesn't appear to show fungus yet either. We will have to keep waiting and let ID look at it tomorrow. They will do more blood testing early in the morning. He is still running a slight fever so that is not helping everyone. ID is concerned with what is going on but once again this is a waiting game.

THat is all I know and it is getting late and we are really tired. Will update in the morning.

We were waiting to get answers this morning before updating. We don't have many but I do have a little information. They drew labs today and his CRP (what they use to measure inflammation, typically infection) went up to 50 over a 24 hour span. His white blood cell count dropped by 4 which we thought was good but it is like if your temp gets to low. They would rather see the counts go up rather than down.....so not a good sign the counts are dropping. Basically we are now waiting on infectious disease to round, there is a new doctor on so pray that he will know Isaiah quickly. We are also waiting for neurosurgery. It is very likely that his shunt will be tapped today to get spinal fluid. Please understand I am NOT saying Isaiah has an infection I am simply stating the facts. So rather than saying infection I am saying he is sick. He has slept a lot this morning but is now up playing with a balloon.

I ask that you pray for the doctors and for TImmy and myself as the results start to come in. The viral test were negative so this is not a viral infection as we had hoped. HOping maybe later today he can ride on his Thomas that we found for him.....now he can give Brady's back!!!!

Thanks for your support throughout the day as we wait for doctors and for answers.

Nicki

Tuesday, November 4, 2008 4:36 AM CST

Well Isaiah has run a fever the majority of the day. He did break it around 3:00 but seems to be warming up again. They are running viral cultures on him. Infectious disease said we really need to hope that one of them comes back. We were going to get to go home Saturday morning but now we aren't sure. We still could if this comes back viral but if the fever stays with no answers I don't think they will let us go anywhere. They said not to start packing our bags yet.

As for how he feels. He is much more tired today and doesn't have the energy he did have. He wants to lay on you a lot.

Answers will come we must be patient. Praying for viral.......

Off we go to watch the election stuff....hope you went to vote today and prayed for our country as we vote in a new leader. As always I will update if we get any news if not in the morning.

So Isaiah is not starting his morning feeling the best. I woke a bit before 3:00 and looked at his monitor (this is perfectly normal for me....). I found his heart rate elevated. I went to get his nurse to see what his last temp was and it had been 97. I asked her to humor me and take it again being his heart rate was 85 when we went to sleep and 145 then asleep. His temp was 100.5 now it is up to 102.6. They are running several cultures on him to see if anything new has come up. Please pray for quick results and them to know what is brewing in our little guy.

He is back asleep now so I am going to try to get a quick nap in. He does not feel well at all.

Nicki

Monday, November 3, 2008 10:11 AM CST

7:07 UPDATE
Unfortunatelly I don't have a lot to report. The only thing I know on discharge is that unless neurosurgery feels very strongly on us staying we should go home on Friday night. We will have to wait until after he gets his med so it would probably be 7:00 that evening before they let us leave. If not it would be next Wed.

Isaiah continued to have a wonderful day until the afternoon. He just got weak acting but he has probably worn himself out. HOpefully tonight will bring a lot of rest for him and I pray for him to sleep in tomorrow morning. THat would regulate his day.

He has been going 110 miles an hour. He is everywhere in his walker around this floor. He likes going out in the hospital. This weekend he had lots of company. His Grandma offered to come stay a few hours Sunday afternoon to visit with him wanting TImmy and I to have a break. We were to the point we needed it. We left a few hours got lunch and walked around Opry Mills then came back. Then a big group of TIms family came to visit. Isaiah had a blast with his cousins pulling him around in his wagon. They were all really cute together. Isaiah had fun showing his hospital off! THe cutest thing came when his cousin Ansley reached down to kiss his head when she didn't think anything was looking. Ofcourse the camera was not ready. We told her it was really sweet and she informed us it would make him better. You know what I think it does make him better!!!!! Today he had a visit from Mackenzie. She was going to appointments today.....they were really cute also. It is neat seeing two kids with the same syndrome play when you don't usually get to see that. I will have to upload pics tomorrow.

I think that is it for the night. I am getting ready to head to bed to get ready for the day. Hoping they let us know the plan tomorrow so that I can get home sometime this week to get the grocery shopping done and the house ready....have I mentioned I can't wait for a home cooked meal. I miss my kitchen! I want it to be done so I can enjoy these few warm days we have left!!!! Can't wait for Isaiah to get to play with his lab and swing a little!!!! I will update tomorrow.

The morning is going great. He was the sunshine again this morning bright and early!!!! He just finished a nap which was good for him.

Today it looks like we will have a plan for Isaiah. Dr. Huss is here and trying to find out all she can and going to bring the docs together. Could be this Friday but if not it will be another week or two. I am really hoping for this Friday!!!!

I will update later in the day once we know more and with how the rest of his weekend went.

Nicki

Sunday, November 2, 2008 7:54 AM CST

Sorry for the lack of an update. We have been very busy.....wagon rides, riding Thomas around, and dada brought his walker so he has wheels to go!!!!!

He is having a wonderful weekend. He wants out of the bed and to go. I mean he wants to go from 4:30 am until 8:00pm when the Benadryl takes over. I am more than happy to chase him around though. Just happy he is feeling like going all the time. Right now he is showing dad his Halloween bag with all the goodies. They are having a good time opening everything......boys and toys!!!!

So tomorrow we should have the plan on him. Neuro and ID will talk tomorrow and get a plan on his care and where do we go from this week. The ampho-b is really starting to mess with his levels. He needs more and more potassium everyday. His temp went up to 100 yesterday after being normal all day the day before. It is an up and down roller coaster. I just wish he could go 48 hours without a temp.

That is where we are now. Thanks to all who have commented on his photos. Today will hold lots more fun. Did I fail to mention how much we just love time change as I am sure other parents are feeling the same thing this morning! Isaiah has already been in the wagon to go have breakfast down stairs, rode Thomas and walked all over the pod and the neighboring pod! So lots of fun today and just waiting to get out of here! Have a blessed Sunday.

Nicki

Friday, October 31, 2008 6:57 AM CDT

7:00 UPDATE
My little boy is sound asleep on this Halloween night. What an afternoon he has had. SO the comment was made if there had been a costume contest he would have won!!!! He just looked so cute. There is a new slide show up. Tomorrow I am going to dress him up again and take him down to take his pic in front of the big train set down stairs. He had so much fun when the people came to his room!!! He sat on his little train and smiled and signed thank you the whole time. Boy was he something else! It was a site that would easily have made you cry....what joy it brought him. All kinds of the staff here, vandy police and lots others were in the parade. He got lots of nice things. THen we thought it was all done and here come 4 of the Nashville Predators with their mascot. Isaiah just looked up in amazement as they all stood around to talk to him. I just want to say what a wondeful job the Preds do in supporting this hospital. We have been here 3 weeks and they have been here twice. What a great group of guys.

After the parade Isaiah rode the train around for 2 hours. Yes 2 hours for the child whose first time to be out of the bed in 3 weeks was today. We were going to go down and see our friends in the PCCU but we are still waiting on Neurosurgery to fix his head and we can't leave the floor. Now he is so asleep from the benadryl....all the more reason to dress up again tomorrow!!!! He also had an accident....he was riding the train and must have scooted his diaper over and we had to wash his outfit!!! So let me just tell you he loves the train!!! It makes all the noises and everything. When I put him on it he hugged and kissed it then told me thank you and did it again. Guess I will be getting one of these....feel bad for saying they were to expensive now!!! That is it for our day. I am getting ready to go to bed myself very soon. I am very tired from the week and going to rest while he does. He wore himself out today.

Will update tomorrow.

2:30 UPDATE
It appears that for now the leak has stopped. Once it flowed he started feeling better and now is his normal happy self. WHat a roller coaster but in the end I have a happy little guy. What more could I ask. He is in his outfit. I will upload pics tonight...... he is SOOOOOOO cute

1:00 UPDATE
Isaiah is now starting to leak some CSF from where the EVD(external drain) was. Neurosurgery has been paged for them to come address the situation. Nicki says he is extremely fussy and wants nothing to do with anyone. Hopefully he will feel better later on so he can dress up for Halloween. I am at work, but one of us will update later once we find out some details. The leak needs to stop because if not, that is a direct route for bacteria to enter the CSF.

Isaiah is starting Halloween with a blood transfusion. His levels were low....not emergency but he needed it within a 12 hour span so we waited until this morning instead of tonight. When they give transfusions they have to check vital signs a lot and we thought he would be happier having all that done in the morning hours! This will give him a big boost.....before we know it he will be all over the room!!!! We knew his color looked off yesterday and there was a possibility. They said with surgery and all the labs they draw his reserve is just low. Plus he is just still so weak that his little body just can't make it fast enough. Don't forget it is Friday if you are in Bowling Green I know that is the day they take blood. If you haven't given in awhile then make sure and do so you never know who will need it next. Isaiah sure thanks whoever the donor is for him!!!!

HIs temp is down to the 99 range today. A little high for him but much better. Praying today is temp free!!!!

So that is all for now. I have to make a battery run down stairs. Glad I checked the camera before 2:30 came around yes it would not turn on.

Nicki

Thursday, October 30, 2008 7:02 AM CDT

8:00 PM
Isaiah has had a fever throughout the day. It has been up to 101.5 THey did some blood work so we will see if it shows anything. Hopefully nothing.

I went and voted today in KY, then went to clean a friends house. I then stopped in Franklin to see all my cousins dressed up. They were ohhhh so cute. I then had to stop and get Isaiah a shirt to go under his Halloween outfit and picked him up a new pair of PJ's along with a Christmas shirt his daddy had to shake his head at!!!! I will get a pic of it! So that is it. He is still warm right now but he has had his tylenol. Praying this is just his body responding late to surgery.

TOmorrow at 2:30 they do reverse trick or treating here at the hospital so Isaiah will get dressed up. Daddy has to work along with everyone else so I guess it is just me and him to celebrate Halloween. I will have pics up tomorrow night. His little outfit is sooooo cute. A friend of mine let me borrow here little boys Thomas the Train ride on toy so the conductor has a train to sit on, thanks Lisa...well I should say thanks to Brady!!!!

I will update in the morning.

Isaiah started his morning bright and early! He is having a good morning. He has already let me hold him for about an hour. He even tried to sit up some while I was holding him. I am telling you his strength is amazing.

Last night he had some pain. He had to have morphine once but that knocked the edge off and he is better now. They have loritab ordered if he needs it. This morning he is good though. I would say as the day goes on as he wears himself down he will hurt a little more.

I am hoping that today they will let us know more of a plan and if not tomorrow they will. Basically ID thinks next week he can stop the antifungal ampho-B but neurosurgery thinks Isaiah needs more coverage than that. There is one other anti fungal the candida fungus is sensitive when they tested it in the lab. It is less harmful to the body but with the aggression of the infection they didn't want to use it. Maybe that can be one neuro can use. And maybe it can be one we can go home on! If they stop all treatment it would be the end of next week. If they put him on another it will still be then but the IV stuff at home....or they could keep him on the ampho and keep us here longer. I am trying to think ahead but not get ahead of myself.

I will update this afternoon. Hopefully today will be a quiet day where Isaiah can rest play a little and rest more. He needs it after yesterday. Then he will be ready to dress up tomorrow!!!!

Nicki

Wednesday, October 29, 2008 6:22 AM CDT

5:45 UPDATE
Isaiah is in his normal room now and doing wonderful. He did have some pain meds down in the holding area but doesn't seem to be hurting now. He is going to probably be in pain from this. THere are 4 incisions in his head and one in his chest. Bless his heart. And ohhhh his hair cut. I didn't know they were shaving my babies head well except for the very back. That will be cut very soon. The little things a mommy would worry about after a stressful day!!!! So now it is just resting for him and getting better. Pray for comfort for him and a shunt never to be an issue for him again.....options are minimal if another infection arises. We will update tonight if anything changes if not we will update first thing in the morning.

3:00 UPDATE
Isaiah is being closed up as I type. Dr. TUlipan said everything went as well as expected. He said it was a difficult placement but he feels it was successful. He did say they were able to get a lot of fluid off of him when they placed it. HOpefully this will help him to feel better very soon.

I will update when we get to the room and see him.

1:30 UPDATE
Isaiah is finally in surgery. He ended up going back around 1:00. They said it should take about and hour and half. Isaiah ended up waking a little into the morning but only after CSF started to leak from around the EVD. With enough pressure it found a way out. This actually worked for the best because they atleast didn't have to drain the fluid with a needle. After his CT he did find about 15 minutes of happiness with the relief of pressure then it started getting the best of him again. We had to let him go with him trying to throw up and crying which absolutely breaks our hearts. I will update when he comes out. I ask you pray for his heart as this is the first time besides when they put his port in that anything has been done in that area and pray for comfort for him when he comes out. Hopefully by tonight my smiling big brown eyes will be up and going. Will update when surgery is done.

7:15 UPDATE
The EVD has gone bad. They are just trying to hold him out until surgery. If he goes completely unresponsive then the will stick a needle into the ventricles to drain fluid. That is dangerous because of infection so praying he can stay comfortable and I can wake him every 45 minutes or so. He is also throwing up a lot and praiyng that doesn't aspirate into his lungs. 4 1/2 more hours.

This morning I ask you to pray for Isaiah's comfort. Neurosurgery had a good plan on how to fill his ventricles for the surgery and the CT without putting him in so much pain. They are very aware of how "sick" it makes him. So at midnight they were going to raise the drain to 10 currently it is at 5 and it flows with gravity so this new setting would have made it drain less but still given him some relief with it draining some. They would then clamp it totally at 7:00 am to prepare for CT at 9 am. Well when we got up bright and early at just before 5 I changed him suctioned him all of that stuff and then noticed there was nothing draining. I wasn't aware of all the orders and she was explaining them to me then when the nurse came in she said no he should be draining something. She said he has very little output all night but it was within the normal range. Isaiah usually drains more than that but hey he was draining.

The plan they had should have worked great but...... it appears that the EVD has a plug or something in it and has clogged itself. We are atleast 6 hours from surgery and there is a lot of pressure on his sweet little head. He screamed and sweat for 45 minutes before he went into a sleep that without relieving the pressure he won't wake from. The positive is atleast it did not happen until this morning and surgery is scheduled anyways. I was just so hoping that with the plan they had he would be more comfortable and this sleep would not come.

So 9 is the CT then they take him straight to the holding area in the pre-op area. Surgery should be around 12:00. He probably will not wake up between now and then and if he does they will have to give him something for pain. If sleep is the best thing that is fine I just hate to see him fall asleep like this. He was so happy when he woke up and playing. He was having "his" time and about the time we were getting ready to start playing together he just lost it smacking his head then the screaming started.

I am going to sign off now and wait for neuro to come in and check on this. He did sleep better last night.

Nicki

Tuesday, October 28, 2008 9:25 AM CDT

2:45 UPDATE
So neurosurgery has been in. The plan for tomorrow has only changed a little. THey don't want to clamp his drain as early as they were thinking because it makes him so sick. Literally within 4-5 hours of the drain being clamped he is usually asleep and wont wake. THey will clamp it a few hours before the CT then if he goes straight to the OR they will leave it clamped if not they will give him a break. Bad news for the day is last time I had him sitting up he started leaking CSF fluid from the site......so no more clamping him to sit him up for 20 to 30 minutes at a time and that was also our holding time. TOmorrow he will have his new drain and it won't be a problem. Please pray that he can stay infection free for 24 hours from this new leak.....if you remember that is what happened in June. He should not hae to go to the PCCU which is great. Neuro does want him to stay on antifungals a little longer so they are talking with ID about it. What is so hard for them is that they know if the fungus comes back it could be very fatal if it gets in the blood which is where the shunt will now be directed to.

He is screaming gotta go :)

Today started very early for all of us. Isaiah started back with night terrors last night. Praying it was just a one night thing. I hate seeing him so upset and I can only imagine what he would dream about that would upset him so. By the last one at 4:30 I could not convince him to go back to sleep. Since I am such a morning person everyone would want to be around me right now :)

He seems to be feeling good. He has been going none stop. Right now he is playing with a bag of rice cakes.....random I know but he loves the little bags of food. Due to his palate repair I can't let him explore with the actual food but hopefully that will come soon. His temp has been under control this morning and I hope it stays that way. The blood work they did yesterday showed everything in the normal range so that is wonderful news. When they did his potassium and things like that this morning they decided they would have to give him more of that type thing. The ampho-B does a number on all of those levels. ID actually told me that for several weeks after treatment with the drug we would have to come down twice a week to have it monitored. Look out friends I will be looking for people to ride down with me!!!! The IV antibiotic they had him on for his belly will end today. There is a possibility that we could go home on IV antibiotics for shunt protection but we will just have to see. I would prefer not since it appears that is what made the yeast grow in his belly anyways.

Tomorrow morning he will go down for a CT with sedation. They will mark coordinates in his head. Then when they are in the operating room they can use the places they marked in his head to guide them where the shunt should be placed. They think it will go right back in the front of the head. They better just hope that if they put a prong in his head again to hold it still in the OR that they have plastics close him up. I will probably mention that today. He has a scare that looks like a dimple from the last one. Not that it matters but I would prefer him not have another dimple. :) The little things I worry myself with.....

So that is the plan.....ct in the morning straight to the holding area for surgery and surgery should begin around 12ish. I don't think this will last very long at all but I will find that out more today. The question is still up in the air on if he will be able to come back to the floor or if he has to go to the PCCU for monitoring......

When I have answers for today I will update. His daddy is working today so it is just me and the little guy. Hopefully he will nap soon.

Nicki

Monday, October 27, 2008 8:41 AM CDT

9:14
Isaiah has had a good day as far as actions are concerned. He is running a temp again. THey did several types of test including a blood culture. He is sleeping now for the night.

I will update in the morning but hopefully we will have an uneventful night!

Isaiah is having a good morning. Last night he did get a fever again. If he does this again today they will draw blood to run test. THis is just to be sure that nothing new could be going on with him. He is playing this morning and having a big time. He is enjoying the morning sun and getting into lots.

SO that is all that should go on today. Wait until Wed when he gets the VA shunt. That morning they will do a special CT that they will be able to use to guide them in the surgery. Where they are putting Isaiah's shunt they have to be very careful and it has to be computer guided. Then general surgery will run the line to the artery and his shunt will be in place.

I will update tonight with how the day has gone. Basically we are just waiting and getting the ampho B everyday. Hae a blessed Monday.

Nicki

Sunday, October 26, 2008 12:53 AM CDT

Well we are all back together after a very long week. Thanks to friends and family we were able to be gone all the time needed for the funeral of Tim's cousin. It was nice to be able to be there and not have to worry about the little guy. Thanks to everyone.

Isaiah has had a good weekend. His temp is staying down and he is playing lots. He is full speed ahead by 6:00 in the morning but he is that way at home. I will be glad when he can understand you don't get up before the sun comes up!!!! His drain is still draining out all the CSF and the cultures still appear to be negative. All and all he is healing. They have warned us that he will still have days that are not so good. This has been a hard infection on his whole body so it will take time for it to get back to normal.

This week the plan is to put the shunt in on Wed. This will be good because then he will be able to get up and go on wagon rides. THis will also mean that he can dress up for Halloween in what I brought him!!! Although we will be here at the hospital he will still be a train conductor for Halloween! It is a really cute outfit. I will have lots of pics! The plan for discharge has changed some. THey have now changed there minds to say he only has to be on the antifungal meds 21 days from the time he had a negative culture. This would mean that in another week and half we could be headed home!!!! That would knock 2 weeks off the stay. I would be so excited and we could get home and enjoy some of the fall.

That is about it. Right now he is sleeping so Timmy and I are going to try to catch a little sleep. It has been an exhausting week.

I will update in the morning with how he is feeling. Hopefully all will continue to go well.

Nicki

Thursday, October 23, 2008 6:36 PM CDT

Well I am back for a little bit and wanted to update on Isaiah. He has had a very good day today. His color looks better than it has in days and he is very playful. I think that his time with Jennifer (a friend of ours, her husband works with Tim) did him well!!!! He had a party with her last night from 10 until 2 in the morning. Bless her heart she was a champ with him. When I came in and he finally woke up he said mama and I almost melted!!!!

I don't have any ideas on his numbers just know that his cultures are still negative right now. Isaiah is making progress in the right direction. A fungal infection in the CSF and peritoneal cavity are very hard on a little body so they said he will have good and not so good days. Trying to stay focused on the good even in a not so good day. He is really thin right now but they are starting his feeds. I am really glad and ready for him to get up to full feeds so that he will get his weight up again.

There is supposed to be a meeting for Isaiah tomorrow. Timmy and I neither one will be able to be here so I am not sure if it will happen. Sarah will be with him so she can attend in my place if they still want to have it. It looks like right now the plan will be to do a VA shunt then follow with the VP later. There have been so many plans tossed around but that looks like what it will be now. We should know more tomorrow.

Thank you for your support to Timmy and his family. His cousin passed this morning. Right now Timmy is in Bowling Green with his brother doing things and Jamie and I came to the hospital. Later the guys will come back up here and get everyone back where they are supposed to be! If it is going to be late we may just keep Jamie for a sleepover and let Daddy rest with Uncle Chris! Please continue to pray for the whole family as the next few days are going to be hard. I can't thank our friends enough for the help we have gotten..... People have come at the last moment and set there things aside. Thanks to all who have helped. We will continue to be gone more in the next few days so if there are a lack of updates it is only because we aren't here and no news is good news. Isaiah will enjoy his time tomorrow with Sarah and his grandma for the rest of the weekend just like he enjoyed Erica, Jeremy, Julie and Jennifer. He likes being around different people! I hate it that we can't take him with us for all this but it would wear him out and his cousin Connie would not want that for she loved him so much.

Again Isaiah seems to be improving it will just take time for his strength. He has been a sick little boy the last several months and with all the things hitting back to back it has taken a toll on him. I will update soon.

Nicki

Wednesday, October 22, 2008 3:24 PM CDT

Sorry I just realized I have not updated. We have checked today to see if anyone signed but the day has just gone by quickly. We did not get back here until after midnight and today we have been working on getting care for Isaiah. Not that the hospital nurses are not wonderful to him but leaving him without anyone in the room is just not something either of us could do and TImmy's cousin would be furious if she were able to know we had done that.

Isaiah started this morning very pale. His blood counts had dropped some but not enough to need blood. He slept from 5:30 yesterday afternoon till 5 this morning. The highlight of his day has been Harrison coming to see him. Since we missed his birthday Ann Kelly went out of her way to bring Harrison's birthday to us. Isaiah was sooooooo excited when he saw Harrison. He was very sad when Harrison had to leave. He actually sit up for 10 minutes to play with Harrison in the bed and his color looked better than it had in days. We are also sooooo proud of Harrison. He is so timid of doctors and he did a fabulous job with everyone in and out. The boys would do anything for the other I think!!!!! Thanks Ann Kelly for driving all this way to give them a couple hours together.

SO it looks like there will be a care conference on Friday to get a plan on what to do with Isaiah's shunt. It seems everyone has a different idea of what they want to do. Dr. Huss is ready for everyone to get on the same page. So there should be a plan on Friday.

I may not be able to update tomorrow. I will try to have someone do it for me. Timmy and I will be leaving tonight to go be with his aunt and uncle and cousins. Hard decisions will have to be made and we want them to feel 100% supported. If anything changes with Isaiah there will be an update but for now he is stable. Still signs of infection in the CSF but the tummy appears to be better. Be praying for his feeds as they have started again. Please pray for Timmy's family during this time. THanks to all who are helping us be there.

Nicki

Tuesday, October 21, 2008 9:22 AM CDT

3:16 UPDATE
We have some good news for the day. The CT of Isaiah's tummy looks great. They actually can't see any pockets of stuff or anything. They are wondering if the belly pain is due to him not eating in so long and he just got pushed to quickly. So they will take things slower this time with him. It is looking like pedialite for a few days before they start with the milk.

This afternoon he is having a few happy moments. He really had one when Dr. Huss came in with her boys and a balloon!!!! Other times he is very fussy. His color still looks horrible but the blood has been sent off so we will see.

I will update later tonight with the blood work results. Please pray for the docs as they decide where to put his shunt. There is a possibility now they may go back in the stomach. No one is excited about the other but pray that is the best decision. That is all for now. It could be late before I update. We are trying to find someone to sit with Isaiah so that Timmy and I can go to Bowling Green to the hospital.

We start the morning with Isaiah still not feeling the greatest. His color is off again so they are going to recheck his blood work. They are wanting to make sure his levels are ok. He will have to go down for a CT in a little bit to re look at his tummy. For some reason he seems to be in a lot more pain. His oxygen levels still seem to be hanging low when he sleeps and last night he was still pretty restless.

I will update more later in the day.

As I close I ask you to pray for Timmy's cousin who is in the hospital not doing to well. There are many different concerns at the moment but the important thing is to pray for her healing.

Nicki

Monday, October 20, 2008 9:37 AM CDT

5:00 UPDAte
Isaiah is asleep right now. THe benadryl they have to premedicate him with really knocks him out. Today has been productive. Neurosurgery said they will look at replacing the shunt next week if everything continues to be negative. The problem is everyone is pushing for a VA shunt rather than the VP. This will mean it will go into the heart rather than the abdominal cavity. I am a little uneasy about this. Going into the heart means an instant blood infection if the shunt becomes infected.

Infectious disease is on with the plan and said that his numbers are starting to look better. That doesn't explain why he looks like he feels terrible today but at least there is an improvement on his numbers. THe CRP is way down from what it was when the shunt was in.

Hopefully I will have more of a chance to talk with Dr. Huss about this whole big plan and she can let me know more of what she thinks. They have put him on TPN again to give him the nutrition being he was so uncomfortable last night. I just don't like that being so hard on his kidney and liver.

The big surprise today was that two of the Nashville predators were here. Isaiah was sleeping when they came by and I didn't even think hey get his pic with them anyways. So I called Carol Miller to let her know they were here and she told me to go out and get them and even if he was sleeping it was something for them to have. SOOOO then I send the nurses on a hunt and here they come back with the two players....Kevin Klein and Martin Erat. I can say they were very nice guys and it was so sweet of them to stop through to see the kids. Isaiah wakes up as mommy is getting her pic taken with them and looks up like what is everyone doing around my bed and what is my mom doing standing with two guys in jerseys!!!! He was a little overwhelmed by all the people so they didn't have a lot of time to visit with him. It was neat and something for me to have for him. Thanks Carol for helping me with my moment and I promise I will get the biggest Predators fans I know a copy of the pic!!!!

Hopefully today we have started on the right track with Isaiah. I will feel better about it once he acts more like himself. Everyday is progress so we will take it!

Let me try this for the second time. Almost had an update done and had to go check on Isaiah and the computer lost power.

Isaiah had a very restless night last night. He would sleep but toss and turn and finally gave up trying to sleep this morning around 4:30. He just seemed really uncomfortable. He needed a little oxygen and had a bit of a fever. His color does not look as good today.

So they are backing up on his feeds. They are trying to be sure they didn't push him to hard on his feeding. He was only taking 1/3 pediasure and 2/3 pedialite. Can't see that upsetting him so but maybe it did. They are still keeping an eye on bloodwork and waiting for the numbers to fall showing an improvement in him. The creatinine number for his kidneys was down a little so that is good.

Well he is in not such a great humor this morning so I better get back to him.

Sunday, October 19, 2008 4:02 PM CDT

Sorry I am just now updating. Let me explain. Timmy went home yesterday morning to work on the farm. We decided Friday night if I went also he could get more done and I could get the things in the house done that needed to be. SOOOO since I have the best mom in the world she came to spend her weekend with her grandson. TImmy left early and I followed behind once mom got here. We got several things outside done. There is still lots more that will just have to wait for another day. Then we went to eat in a community about 20 minutes away then went for ice cream. It was fun....the place we went to eat we had not been to since Isaiah was born and we never go for ice cream so that was a treat. Then Timmy and I both got to sleep in our own bed and slept for 12 hours straight. We were both so sleepy and slept well knowing mom was with Isaiah. This morning we got up and Timmy headed out on the farm and I finished the house. I did get 30 minutes in with my horses this morning so that made me sooooo happy! They were so sweet and just stood there with their big heads on my shoulders.....I just love my animals.

Now I am back with the big guy! Him and his Grandma had a blast. They decorated two pumpkins this morning when Grandpa came.....what a surprise to have the room ready for fall....i love decorations! Isaiah had a good night and continues to get some feeds. He has just started pediasure and pedialite together. He had one spell where he started retching. Hopefully we can keep working him towards it. The size of his tummy still isn't the same so we will see. A culture from wed has started growing yeast but we aren't sure if it was of the actual shunt in the OR or if they did a sample while they had him in the OR. We will know more from neurosurgery tomorrow. When I talked with infectious disease earlier their plan is to continue to watch cultures. They are thinking they will reimage the tummy this week. THey may even use an ultrasound guided test to stick a needle in and pull fluid to test it for yeast. We have to be sure all yeast is gone before anything can be replaced. I think we are still a ways out from the shunt going back in but atleast they are already thinking.

SO we are as Dr. Tulipan said on cruise control waiting for the infection to go completely away. Tomorrow maybe will hold more answers. Please pray specifically for a clear direction and they will know when will be the right time and for Isaiah's kidneys as this drug is hard on his kidneys.

I will update tomorrow. It is just Isaiah and me...Timmy works tonight then has help coming to the farm tomorrow to help him move hay to get our cows moved. So many things but great friends who will help.

Until tomorrow morning.

Nicki

Saturday, October 18, 2008 11:23 AM CDT

SO Isaiah has had a pretty good morning. He slept in a little this morning. I think he is used to them in and out now. That is really a good thing being he will be here for a little while. He woke this morning with his temp at 99 which is a little higher than what it has been first thing in the morning. Keep in mind Isaiah is always no higher than 97.5 Yesterdays stain was negative for yeast from the head. It will take several more days to know if it is a negative culture though.

THey have started feeds. His tummy is starting to bloat up some.

I will update tonight if anything changes if not I will update in the morning.

Nicki

Friday, October 17, 2008 6:38 AM CDT

10:20 UPDATE
Isaiah is on his second round of feeds and seems to be doing ok. His belly seems to swell some but not bad. They have said that he does have yeast growing in the cultures from the tummy. I am not sure if this will change the plans of anything or not. It could mean longer to get the shunt but I am not sure and will have to find out.

He has been happy today and entertaining our friends Jason and Melissa tonight! He had his RT Emma come up from the PCCU to visit with him he loves her visits.

Well I need to get off here but will update tomorrow. We have to get daddy out of here early as he goes to spend the day at the farm before going to work on Sunday.

12:00 UPDATE
So we are going to start feeds in just a few. Infectious disease just left and said we can be hopeful but they are very cautious. They told us not to be surprised if this one does not grow or if another will come up positive. The shunt can not go back in until they have atleast one 7-10 day negative culture. They would prefer 2 so we will see. Then they treat with antifungals for 3 weeks. It is still up in the air whether we can go home on these or if they are to toxic and he has to be in the hospital to receive them. I will update later.

We are starting our morning early......we really need to start a dairy on our farm Isaiah would be great for milking first thing in the mornin!!!!

SO first news of the day. They are going to try to start feeds today. His stuff out of his stomach is clearing up and there are finally bowel sounds. Please pray him and his tummy will tolerate the feeds. They will start him with pedialite and as long as he does well with that they will start him back to his full pediasure. There is still no yeast on the culture so keep praying in the next few days it will continue to be negative.

I need to get off Isaiah wants the laptop. Feeling good enough for Taylor Swift this morning!!!! No dancing yet but he cried when it went away so he is getting there. :) All things can be judged with music with him!!!!

Friday, October 17, 2008 6:38 AM CDT

We are starting our morning early......we really need to start a dairy on our farm Isaiah would be great for milking first thing in the mornin!!!!

SO first news of the day. They are going to try to start feeds today. His stuff out of his stomach is clearing up and there are finally bowel sounds. Please pray him and his tummy will tolerate the feeds. They will start him with pedialite and as long as he does well with that they will start him back to his full pediasure. There is still no yeast on the culture so keep praying in the next few days it will continue to be negative.

I need to get off Isaiah wants the laptop. Feeling good enough for Taylor Swift this morning!!!! No dancing yet but he cried when it went away so he is getting there. :) All things can be judged with music with him!!!!

Thursday, October 16, 2008 8:52 AM CDT

6:03
We finally have results!!!! So let me try to explain this. What I have been told on the stain does not show yeast but elevated white blood cell counts. This does not mean there is not yeast as it is slow to grow in the fluid but I take it as a good sign. This is different as what he had before in that the other was quick to grow and we knew quickly.......this time is going to require lots of patients. So I am excited that it wasn't immediate with the yeast but the white blood cell count is up so that is a little concerning. That means that something is still to be concerned with in the CSF fluid. It could be that he had surgery and stirred it all up. We will know more in the next few days.

Isaiah seems to feel better. On a scale of 1-10 I would put him at a 5. He isn't going to scoot around but he is smiling so that is wonderful to see. Overall there is a lot to be thankful for today but plenty of reason to be cautious. So if we were to start getting negative cultures he would not get the shunt put back in for atleast 4-5 negative cultures and then he has to be on the antifungal drug for 3 weeks from that point. I do not think they would let us leave the hospital to do ampho-B at home. This is the strongest antifungal and can be very hard on a little one and they have to monitor closely. We will see though.

I ask tonight for you to pray for Isaiah to continue to feel better. On Monday he felt almost this good and then went backwards. Pray from this point on he moves ahead. The yeast will be a long hard thing to kill but the better he feels the easier it will be to fight this fight he does so well with. His temp is going up now and that makes him feel awful but hopefully it will break and soon that will be gone also. His tummy still has infection to heal as well as his head but atleast we can end today with many praises.

If anything changes tonight I will update if not it will be in the morning.

So we start a new day.....

Isaiah finally woke this morning after pretty much sleeping for 24 hours. He finally had enough drained off with the drain to wake up some. There was just to much fluid for him to want to wake before then. Some how in the night he managed to move his head enough to roll the dressing on his head and expose his EVD.......asleep and he still gets into things!!! His post op fever broke around midnight. By 6:00 he started his regular fever. With rectal tylenol it has spiked to 102. They did gie some Motrin. The problem with motrin is that he is post op and on some different meds that can be hard on the body and motrin mixed with that can be difficult.

He is still having some problems keeping his oxygen saturation up. THey just got done completing a chest x-ray. He is still trying to throw up and actually got some up this morning. His tummy is just not well. They did pull a sample this morning from his drain so we should know the results of it soon.

I think that is all for right now. I will update later in the day.

Nicki

Wednesday, October 15, 2008 8:55 AM CDT

7:55 UPDATE
Well he is all settled in for the night. He has not woken a lot after surgery. SOme of this could be the morphine dose he got but I think a lot of this is his head. Bless his heart where they clamped it he got swelled then they have been trying to set his drain right and his head is still swelled. He probably will not wake much until the pressure is off of his head. His fever is getting pretty high tonight. He always gets a high fever after surgeries. THis temp should be gone by in the morning. If it isn't then it will be blamed on the infection.

We got the results back from the CT of his tummy yesterday. There are still some places in his tummy to watch. For some reason the three spots are still able to be seen on CT and may need a follow up CT. Please pray for his tummy. It hurts him so bad.

I think that is it for the night. We shall start tomorrow with a new set of cultures and pray that the infection had set in the shunt and not the CSF. If it is in the CSF it is hard to hit the spinal fluid with the antifungals. THe best case scenerio is if the cultures start to come back negative and we don't have to worry about all of the CSF. Fungus in the CSF is a major problem and much harder to kill then anything Isaiah has faced. They are also trying to get everything balanced in his little body; his potassium, nutrition, fluids and so many other things.

I just pray tonight for the great Physicians healing for him and trust that He and only He knows what is best for this precious child he has allowed us. As I watch him suffer through this I will be honest and say it is hard not to be angry and question why can't Isaiah just catch a break, why him again, why does he have to be so uncomfortable. At these moments I stop and pray for him and pray for my own heart. Only one knows the plan for Isaiah and I must trust in Him. So I end today thankful for the day the three of us have had together and for a successful surgery. May tomorrow bring happy moments for us.

3:30 UPDATE
Isaiah is finished with the surgery. He is back in his room and just had a dose of morphine to ease his pain. The surgery went as planned. They will now start to culture the new drain and hope no yeast is present. This mornings culture before the procedure showed yeast on the stain. We will update later tonight with how things are going.

Isaiah's drain is clamped and he is ready for surgery. The neurosurgery resident came in earlier and said he is on the board for 1:00. They will take the shunt out and put the EVD drain in and see where we are with infection.

He is uncomfortable with the drain being clamped this morning. Overall the infection is starting to take a toll on him. He is just drained and wanting to sleep more and very restless when he is up. Just this morning he is starting to drop his oxygen levels down and needing a little. When sleeping he is dropping in the low 80's which is not like him.

I will update when surgery is over.

****With all going on I am finally able to share a bit of good news. After having to not say anything for like 7 weeks(very hard for me) I can finally announce Isaiah has a new cousin on the way!!!! My little sister Amanda and Drew are through their first trimester of pregnancy. We are soooooo excited for them and can't wait for the new addition to love on. Isaiah will love the baby so much. He really does like little ones.

Tuesday, October 14, 2008 7:38 AM CDT

1:30 UPDATE
Dr. TUlipan just came in and said surgery is off. Unless it is a major emergency they are unable to operate in either of the OR's here at the childrens or the main hospital. Something with the steam and them unable to sterilize things. He said tomorrow at 1:00 will be surgery. He is really concerned and wanting the shunt out now.

1:10 UPDATE
Isaiah is still waiting to go down for surgery. He is really not feeling well right now. He is just sleeping a lot. I will update when he gets out of the OR. He be in surgery around 3:00.

It looks like they will take Isaiah to the operating room around noon. They will take the shunt out and put an EVD drain in then we will wait and see. Our prayer is that he will then get negative cultures which will mean it was contained to the shunt. They are assuming it is through all the CSF fluid but I pray it is only actually in the shunt.

Last night he had to have another blood transfusion. His color looks a lot better now after the second one. I hope that it keeps his color pink. They did start him on TPN which feeds him through his IV. They are talking about starting feeds back tonight after surgery but he has started getting sick again this morning.

THis morning his temp has been almost normal but the nurse felt like he had a quick drop in temp because of the cold things they were putting through IV. He does not feel well at all this morning. He is very aggitated and acts like his head just really hurts.

We will update when they take him to the OR. Thanks for praying for the surgery and remember the medication that bothers him so starts around 4-5 and it runs over 4 hours.

Nicki

Monday, October 13, 2008 6:47 AM CDT

7:25 Update
Isaiah will go to the OR tomorrow to have the shunt removed. They don't think they can clear the infection with the shunt in. It is beyond medicine being able to take care of it without the shunt out. So early in the afternoon they will take it out. No certain time yet but hopefully I will know more tomorrow on it.

He is getting ready to get more blood. They think since his meningitis before his body just didn't recover completely and now this is just pushing him some. His levels just didn't come up to where they needed to with the one dose. He really perked up after the unit and seemed to be feeling better. Now he is getting the anti fungal medication and it makes him feel really bad. Everyday he starts this med between 4 and 5 and seems to have a little trouble with it. Please pray for him during that time if you think of it. He has bad almost hot flashes....gets agitated and very itchy.

I will update more tomorrow morning.

2:00 UPDATE
So this afternoon is here and we have seen all doctors. Infectious disease came in and they were going to talk to Dr. TUlipan(neuro). They were encouraged he is playing. Then neurosurgery came in and said he would have to get with ID to see what they thought. At least they agree they need to get with each other. Dr. TUlipan did say in all his time (and he has been here a long time) he has maybe only seen 100 other infections that were fungal and very few yeast. He needs to get into the literature he said. Not very reassuring that there is so little to go off of. He was going to get with ID and see if they wanted him to take the shunt out or if they were ok with medications or if you could clear with just medications. So unless one of them comes back to tell us what they talked about then we won't know a plan until tomorrow. Typically these types of infections are only seen in immune suppressed kids and he has never had an immune problem.

So I asked if this means he has yeast all through his CSF and he said we have to assume that but he didn't know if you would necessarily call it meningitis. ID did say that they call his gut problem peritonitis with psedo cyst. A lot of terms that probably make very little sense to you and honestly not much more to us. General sugery doesn't want to put the shunt back in the abdominal when that time comes but wants it in the heart. TUlipan would not want that with the problems Isaiah has because then you have to know if he has an infection it would go to the blood.

Lots of info. Right now Isaiah is thinking about going back to sleep. He is getting his blood transfusion right now. He plays but still looks awful. I will update later if anything changes if not in the morning.

8:20 update
Here are a few things. Isaiah has had another positive culture in his shunt fluid. It appears there IS yeast in the csf in the shunt. So we don't know yet whether he has fungal meningitis or not. We do know he has a shunt infection. The neurosurgeon resident said they might try to treat medically with the shunt still in. The shunt works so well and he is limited with where you can put a shunt. So the question is does the shunt come out or stay in. The other question is where did the infection start. I think right now there is more concern with his tummy. His tummy slowed down with fluid over night and now it is picking back up and starting to swell more. He will get a blood transfusion today. He is also getting potassium because it is staying low.

Many have asked what you can do. One thing I would challenge you to do is if you have not given blood lately to go to the red cross on Friday (if you are in BG) and give blood. Isaiah will be taking blood from a donor......so many children up here get blood. I hate to take from the blood bank for this reason so if you are able to give go do that. It doesn't cost any money just a little time. Replenish what Isaiah will use and give others that gift.

Working on things. Dr.Huss us back and Isaiah could not be more excited. He heard her voice this morning and bless his heart lite up like a light bulb! He smiled and started signing thank you. She has been out of town. Her collages are wonderful but he loves her so. Will update more soon.

So now we shall start the beginning of the week. Hopefully answers will come. Isaiah slept last night. A lot of wimpering in his sleep. Timmy and I were able to rest more than the 30 minutes for me the night before and 3 hours for Tim so that was good. We both feel better this morning after a little rest.

Todays goals: Talk to dr. Tulipan about the shunt(he will be back), get results back from the cultures.

To pray for: his tummy to start working, pain to ease for him, doctors knowledge and skill.

I will update later in the morning.

Nicki

Sunday, October 12, 2008 11:16 AM CDT

6:09 UPDATE
We are on the 7th floor right now. We got up here a little earlier. The docs decided they had done the test they could and since we were right with him they went head and moved him up.

Isaiah is still getting 2 antibiotics and 1 antifungal. His little tummy is still bloated but he had a diaper so that means something moved. He is still having a lot of stuff out of the button. He has been awake a lot more today. I hope this means he feels a little better and he is not jsut getting used to how he feels. His fever has still been up this afternoon. Not to high but 100-101 with motrin.

Now we shall wait and see what the cultures show. HIs color still looks bad but he is awake. He does not want you to touch him today though. This whole week he has wanted nothing more than me to hold him but touching him pushes him over the limit right now.

I will let you know when we know anything new. Thanks for all your loving support.

There have been several people in and out this morning. We are still waiting for infectious disease to come in so that we can get results on the cultures. One of the docs in the PCCU just did an ultrasound of his tummy. THere was still some fluid but not enough to extend the stomach out like it is. THe bowels are just swollen at this point. He has a lot of green coming out of his feeding tube and that is because the bowels are not working at the moment.

His CRP levels have climbed again this morning. They have orders in for him incase he needs blood. At this time his labs are ok but at a level they wanted to have it on order if they need it.

Neurosurgery just came in and they said they no longer had to monitor his pressures in his head. Actually you can't get an accurate measure with an external shunt. So they were going to talk to the floor docs here and see if they can put him on the floor or if overall care will need him to stay in the PCCU. Either way all of the docs are watching him and right now there is nothing they can do but wait and see. His temp is down some right now but the true test will be tonight and what it does later this afternoon. He has had lots of tylenol and motrin for pain.

I will update when we know anything else. We are just really tired right now and needing some answers.

Nicki

Sunday, October 12, 2008 0:14 AM CDT

So here is an update the best I know how. We still have lots of details to get tomorrow. When they ran the scope suprising they found no puss but clear fluid. Their assumption is that it is spinal fluid where for some reason he stopped absorbing it from the shunt. If that is all this is then it would be a minor infection of the shunt. THey have drained his tummy and his shunt is in but draining to the outside of his body. THey will make more of a decision as more results come back. I am not sure how infectious disease will feel about his surgery. There isn't a lot of reason for such an infection and blood counts the way they were if this is all that it was. Granted this had to be taken care of now could not wait and is a major process to take on but he had high inflamatory numbers. More will come tomorrow and there may be good explanations but right now it is confusing.

They are currently in the process of moing Isaiah to the critical care unit. The pressures in his head need to be measured and can only be done from there. Neuro is just wanting a lot of monitoring of his status so down 2 floors we will go.

I will update more in the morning. We are getting ready to move. Isaiah is sleeping and still very gray.

Saturday, October 11, 2008 8:54 AM CDT

8:55 update
Isaiah is finished with the surgery. It went fine. We will update later.

7:45 update
Isaiah has been in the OR for about 10 minutes now. His shunt will be taken out of his abdomen but left in his brain at this time. The docs feel it is the best decision at this time. Hopefully the infection in his stomach won't be as serious as the CT looks. We should get an idea tonight. They are going to culture the fluid. The neurosurgeon that is on tonight had Isaiah when he was first admitted with meningitis. It makes us feel good to have doctors that know Isaiah so well. They all agreed that this had to be done tonight and could not wait. We will update later.

5:05 UPDATE
Surgery in the next few hours. They will start with a scope to see what they can do without making major incisions. The doctor is not sure what he will get into. More than likely, the shunt will be taken out and an EVD will be placed due to the yeast growing from the shunt culture. These procedures could take from 45 minutes to several hours depending on what they encounter. We will update when they start.

2:40 UPDATE
Isaiah has peritonitis. He has an infection in his abdominal cavity. THere are three large abscesses in his tummy. One is 10cm long. THis is where the shunt goes to and his shunt is now growing yeast. We all need to pray that he does not have or get fungal meningitis. We are waiting on general surgery to come in and decide if they will operate today or not. I will update as soon as we know. Please pass word for people to pray for this surgery and his pain.

10:45
They did a CT of his tummy with contrast a few minutes ago. They think they are starting to find some answers. Please pray they are on the right track and I will update when they know something.

Well Isaiah had an eventful Friday night. We noticed yesterday afternoon that his head feels fuller. Last night it started to have some puffy spots to it where there is no skull. He was then not responding very well to stimulation. They ended up taking him to CT last night. THere is no change in his CT. The only other thing that can explain his head swelling some is if his CO2 levels are getting to high. THe way to test this is by putting an arterial line in. THey could then get an acurate measure of his blood gases.

His stomach is very swollen. THey have done x-rays of his tummy this morning and we should know something soon on them. He is having normal bowel movements but that is not helping the swelling.

Levels on inflamation in his blood are still the same as are his white blood cell counts. They have not come down yet. I assume they will check them again tomorrow.

Still no news where the infection is just that there is one somewhere. I think this is the worst part of it all for everyone. I think we would all feel better if we knew where the infection was.

I will update this afternoon he is back asleep. He did stay awake for about 1 1/2 hours this morning which is better than 1 yesterday.

Friday, October 10, 2008 3:39 PM CDT

7:25 Update:
They performed an lumbar puncture under radiology around 6:30. This will test the CSF in his back. Who knows if Isaiah's pockets of CSF communicate so they are double checking. We will get results bakc in the next few hours on the stain. His temp has reached 102.3 again and he still seems warm. He is out of the ER after 24 hours of waiting on a bed. He perked up for a few minutes when he got up her.....Jess from the PCCU was up to see him so I am sure that was part of it!!! He is very tired right now but awake. Typically when they give him medications for procedures it will keep him up for a little bit. Atleast we are seeing a little evening play time. This is very much like yesterday....hour or so in the morning and evening. He is really starting to wear himself out now.

I will update tomorrow morning with how he is. Once again thank you for your thoughts and prayers....right now we are jsut here together trying to keep everything very low key for him. Will update tonight if we get any results.

OK we have the laptop in now. Timmy has taken off work and is here with us now.

We still do not have a source of infection. They are culturing everything and talking about doing a spinal tap along with an MRI. They are still concerned about CSF and bone infection. One issue is that they do not have a culture without antibiotics.

I don't know what is going on all I know is this is the sickest I have ever seen Isaiah. He has been awake no more than an hour today.

I will update tonight with what is going onthis afternoon.

Nicki

Thursday, October 9, 2008 4:36 PM CDT

10:00 update
Isaiah has a number of white blood cells in his CSF. They said that they are still not sure if he has meningitis or not. They will have to wait to see if anything grows in the culture. His CRP is alot higher than it was on Tuesday. He definitely has a major infection going on somewhere in his little body. They have ruled out
pneumonia. He is on two IV antibiotics to try to fight whatever is going on. We will update in the morning with the latest.

I am sorry if I confused some. They have not said that Isaiah has meningitis again. He is just showing some of the same symptoms. We won't know anything for sure until a CSF culture is done. He could just have an awful case of pneumonia that is making him feel like he does. Once again, I am sorry if I confused you all.

I just got off the phone with Nicki. They have done some blood work on Isaiah and are fixing to start a shunt series. The shunt series is a series of CT scans to look at the shunt. She said he has been asleep the whole time they have been down there and only woke up when they were accessing his port. PLEASE pray that he can jump over this hurdle. He is showing the same symptoms of when he had the awful case of meningitis back earlier in the summer. Hopefully they can figure something out quick and it is not serious. Please pray for my wife that I love so much. I don't think God could have given me a better wife to be the mother of my special son. I think she is one of the strongest women I have ever met. She is amazing with Isaiah ,as you all know, and she takes all the curve balls we are thrown in life so well. I am at work for 48 hours but I will leave if needed. Nicki is keeping me posted and she or I will update with any news.

Thursday, October 9, 2008 11:38 AM CDT

This is Nicki's Friend, Ann Kelly.

I have just spoken to Nicki and she asked me to update Isaiah's page for her. Isaiah is not feeling any better, and his fever has not broke, It is not too high but not not getting any lower at this point. So they are heading to the hospital and expecting the doctors to tap Isaiah's shunt. Nicki is taking her laptop and will update when she can or I will update more later. Please keep the whole family in your thoughts and prayers.

Ann Kelly

Wednesday, October 8, 2008 2:20 PM CDT

Wish I could report Isaiah feeling better today but he still feels pretty bad. He had an hour or so this afternoon where he played then he went down for a little over a 3 hours nap. Right now he is in his bed playing. To touch him seems to really make him uncomfortable right now. Fever is staying about the same. I talked with the pediatrician this morning and we have a plan for him. His CRP levels in his blood are significantly elevated. This is the level that show inflammation which is usually infection.

So as long as he get no worse we can stay at home. If he gets worse then he goes to the hospital. If tomorrow he isn't better then he goes back to see the pediatrician and if not Friday for sure.

Please pray for him to feel better and pneumonia to get better. Also pray for us as we take care of him. It breaks my heart to change his diaper with him screaming the whole time. We have blown him a balloon up (thanks to katy and Debbie we have our own balloons!!!) and that makes him happy. Timmy unfortunately has to work the next two days but hoping Isaiah feels better in the next day.

I will update tomorrow morning if nothing else changes. Thanks for the encouraging words.

Nicki

Tuesday, October 7, 2008 11:24 PM CDT

Today has been a roller coaster of a day. Last night started things out. As I updated Isaiah has been hanging low with a low grade fever. Well last night when he went to bed he started getting a fever. His temp got up to 101.5 last night. He got up at 2:30 for the day with the exception of off and on times when he slept for short periods. Today his temp has seldom seen 99. So I called the pediatrician this morning before we headed out for out appointments and she said he needed to be seen today. I agreed as I held him while he cried the whole time.

So today consisted of 3 appointments and and emergency room run. His first eye appointment she confirmed what I thought and that is that one of his eyes grew back together. Next surgery he has have it reopened. The problem with it closing back is this is the eye he appears to not be using. Her concern for his eye grew as she examined him. Then we went to his normal eye doctor. During this Isaiah's temp really started to spike so he just went to sleep on me. He was able to look at the structure of the eye but wasn't able to watch him use it. We go back in 2 months and he will examine it better. First off they do not think he is blind in it but not using it. So how do you get him to use it?????? We can either patch or put glasses on him. The doctor will decide and there may not be a good answer. So after all that we headed to the emergency room for him to be checked out.

Isaiah for some reason is having very little urine. Like barely a diaper a day. So they started him with fluids. His temp kept rising. They did blood work and a chest x-ray. It appears he has pneumonia again. I haven't seen him this gray in color since the summer. It is all he can do to hold his head up at times. They started him on an antibiotic and pray this is all going on. So right now he is sleeping. Who knows how long but he is for the moment. He just held on to me the whole time. He would NOT get in the hospital bed. If I moved my leg he screamed. So I am really hoping in the next day he feels better.

Now we are home. They did not keep him today but if he doesn't get better I am sure they will admit him. He has got to produce urine. I just want to say a huge thanks to Riley and Reagan Miller. These two girls gave up their day to go to the doctor with us and got stuck in the ER for 4 hours. They were a huge help to me today and made the day go so much better. Thanks for all your hard work today. Now that Isaiah is asleep we are working on baking skills!!!! We made personal pizzas and homemade cookies so they are ready to go!!!! And a huge thanks to my dad for going to get Isaiah's meds before the pharmacy closed.

Did I mention they let us out at 7:05 and the presidential debate started at 8 and it is very close to Vandy. Yes it seemed every road was blocked...... Just glad we are home now.

I will update tomorrow with how he is feeling. I hope he wakes like a new child!

Nicki

Monday, October 6, 2008 8:01 AM CDT

I just have a few minutes but wanted to say Isaiah is still doing pretty well. He has been a little fussy in the last 24 hours and had a low grade temp 99-100 but besides that is still playing and having a big time.

Saturday we had a big lazy day! He did great at church and actually made it through the whole service! Then we had lunch with the Shultz family and he kept us on our toes!

Well I need to get busy with my day. We have appointments tomorrow afternoon with both of his eye docs. I will update tomorrow night.

Nicki

Friday, October 3, 2008 10:55 AM CDT

Sorry for no update last night. We both put away and did until we were exhausted then I feel asleep!

Isaiah had a good night. I think he liked being back in his own bed. Using the trach collar worked fine for him and kept him moist. He actually woke up this morning not dry but very junky.....going to call and double check the settings. Since being home he scoots from one room to the next. I guess making sure the house is the same as he left it! I told him it was all fine we had been gone a very short amount of time. He is actually home without antibiotics. Dr. Kelly really felt like he was fine to come home without them. His right eye looks great although out of habit he still holds it down. His left eye I am afraid has closed back up. We go to the doctor next Tuesday and we will just have to check with them.

We are waiting on a call from ENT to see when he can get in to see the doctor. Pulminology wants to wait until after the winter to take the trach out. His pediatrician and myself see the pros of it but we also see how it drives Isaiah crazy. So we are all waiting to see what the ENT thinks. I want it done in the correct time. I know one thing and that is the staff at Vanderbilt will figure that out. So as the weeks go on we will figure out what to do. Right now we try to help Isaiah not focus on the trach or pulling it out.

He is really trying to talk a lot. So Timmy and I alot of times will just be silly and say "Hey Baby". Well we were in the van on the way home yesterday taking advantage of Sonics happy hour and all the sudden Isaiah pops out with "hey baby" and started laughing. Whether that is what he meantion to say I have no idea but it is sure enough what he said! It was so funny and he thought so. So the rest of the way home he had his finger over his trach blabbing away....no idea about what but he was telling me all about the world...until he fell asleep!

A huge thanks to the staff at Vanderbilt Childrens Hospital for once again making our experience a wonderful one. They are wonderful. Thanks to all of you for your help and support!!!

Well I need to get back to laundry and get to the grocery store! Will update at the end of the weekend.

Nicki

Thursday, October 2, 2008 7:09 AM CDT

5:21
We are home. I will update tonight when I have a minute. Trying to redo medical equipment and put things away. I packed for a week so atleast most of the clothes are clean!!!!

What a big boy we have!!!! He passed with flying colors!!!! He kept his respiratory rate around 15-20 all night, heart rate was good, oxygen was 93-98, and his CO2 was 38. Is there such thing as perfect.....well if there is I think that is what he did!

So we will wait for pulminology to round and then once they have cleared us we will be headed home. We have lots of questions and I will have more details tonight when I update. Need to go now but will update tonight.

Nicki

Wednesday, October 1, 2008 7:17 AM CDT

4:30
So Isaiah will get to go home tomorrow.....record time!!!! They will try him completely off of the vent tonight. This will be the true test. Dr. Kelly said that as far as he is concerned he is ready in his book! He could have left today had it not been for the vent trial tonight. SO we will just have to pray for it to be successful tonight!!! I will update more as I know more.

WOOOOHOOOO Isaiah did perfect last night on the CPAP trials. Hoping tonight they will allow him to be off of the vent all together. They can still monitor all of his numbers and the gases he breaths out. Hopefully they will only make him try 2 nights of it. I will know that later today.

Plastic surgery residents came in this morning and said that as soon as pulminology is done with there stuff with him then if we are comfortable we can go home. THey said Dr.Kelly said just to leave it up to us......how funny is that. He knows I won't leave with him though if I am not comfortable. This has been a cake walk for him though.

Today we are going to try to get a ride on toy or something to let him out and about in. We got him a rain maker to have after surgery and he has been so funny with it. He has learned that t is also a kaleidoscope!!!!! All is well just another day to hang out here and maybe just maybe home tomorrow.

Will update later after doctor rounds.

Tuesday, September 30, 2008 12:37 AM CDT

6:23 pm
They will be doing Cpap trials tonight. THis is where they will set Isaiah's vent only to breath for him if he has an Apnea spell. So he will bascially be breathing on his own and having it as a back up. His normal setting has the vent pushing breaths. He has had a bath and is a clean happy boy!!!! TOday has seemed like a really long day for us.....must be the anticipation of waiting to see what will happen.

Timmy works tomorrow then hopefully by Thursday they will be thinking of sending us out of here or at least by Friday. From a surgery stand point I feel that he is ready it will just be from a vent perspective. From my understanding they will decide something this week on whether he needs the vent or not.

I will only update tonight if something were to change. If not I will update tomorrow.

Sorry I have not updated yet today. I had an appointment for myself this morning at St Thomas for my yearly cardiac checkup.....it went well and they will call with the update on the echo they performed later.

Isaiah is still doing well. Last night he wore his vent and with it being a post op night needed it but it seems that the plans will continue on for him to go off of it tonight. Please pray that the decision would be obvious and he will pass with flying colors or we will know that he needs it. Our heart is so eager for him to be free of this piece of machinery but know that we have to wait on Isaiah's body to be ready. Staying very optimistic right now!!!!!

He had a long nap today. Timmy and I went and had lunch together during that time. He is now up playing and watching a movie. He has been fussier than yesterday but that would be normal for 24 hours post op. He is a little swollen also. He is also bored! Entertaining him is a job, but one I will gladly do..... :) Not to mention all of his friends up here. He is one popular little guy!!!! Will update later after the docs round on him.

Nicki

Monday, September 29, 2008 1:08 PM CDT

7:00 Can I say I have a spunky monkey on my hands!!!! Isaiah is already sitting up in his bed playing. He has NEVER done this well with a surgery like this before. I am so proud of him. He did get one dose of pain meds because he acted like he was really hurting. SInce then the world is grand! THe docs have all been in (and just a few nurses;) they are thinking they may start trying him without the home vent tomorrow night rather than waiting until Thursday. This is wonderful news!!!! He keeps going like this and he will be home before the weekend! They have changed the rules and we can be in here during shift change so we are waiting for him to go night, night so we can grab a quick bit to eat..... I will update tonight before bed or first thing in the morning if nothing has changed. THanks for loving our boy!

2:30 Can't believe to be able to type this but Isaiah is already done with surgery. We were thinking an afternoon surgery but it was less than 2 hours. Dr. Kelly was able to use tissue already in the mouth and it went extremely well. THe eye part we knew wouldn't take long. Now we are waiting to be able to go back and see him. This has seemed a little like drive thru surgery but we will take it!!! He is still expected to be in the hospital for a little while. They will start him without the home vent hopefully on Thursday night! I would say 2 nights of that will have everyone happy. I will update tonight when we get to see him. THanks for the inspiring words to help us through the day. No matter how small it never changes the feelings of handing your little one over.

They headed back to the OR about 12:45 with Isaiah. He was really starting to get aggitated, he was hungry and sleepy. They went ahead and accessed his port before he went back so they have his IV access. He rode around in a little tykes car for most of the morning. He enjoyed being able to get around the hallway.

I will update as it goes on. THey are thinking it will last around 2 1/2 hours or so. Not long to wait. It is TImmy, myself and my pawpa here waiting for the little guy! Can't wait to see him and he has only been gone for 30 minutes.

Sunday, September 28, 2008 7:53 AM CDT

Taking a few minutes to update......

Well we have had a busy week. On Friday Timmy had to leave to go to Louisville for a training and will not be back until later tonight. Then Isaiah and I decided we would go up by ourselves for a quick visit. We only stayed one night but him and Harrison had so much fun. I ended up needing to bring my little sister back so we left yesterday afternoon. Probably a good thing so that it would make me get things done around here!!!!

Isaiah is feeling better. He still has a little bit of thick stuff he has to get out. He is off the antibiotic and still scheduled for surgery tomorrow afternoon. Many have emailed me wanting to be sure they understand what the surgery is. The main reason for surgery is to fix his cleft palate. He has had this procedure once before but when they pulled his midface out it made the palate come back open. Very small opening but you can't have an opening stay in it. Since he will be under anesthsia they are going to open his eyes up. Now that his eyes fit in the sockets better he has to hold his lid down to see. In his new pics you can see him doing this in most all of them. Since we will be in the PCCU they are going to give him a trial without his home vent. They will have to monitor gas levels and all of that stuff. Towards the end of the week is when they will begin that. We are hoping that his new ENT is going to let us put a smaller trach in if he does well without the home vent and start to cap it. This will get him closer to a trach removal. How long he has to have a smaller one in I am not sure but will find out on this stay. It is just a little bit of a process in taking a trach out of a child like Isaiah. SOOOOO that is what will be going on. He should be in the hospital no more than a week. Tomorrow surgery should begin around 1:00. I will call in the morning to double check. I know when to stop feeding him and when we need to be there but need to check forsure.

Well I am wasting time. A huge thanks to my mom for coming down and helping me last night. She got all of Isaiah's fall things in the closet and helped me get fall decorations out. Isaiah is packed now jsut to get mommy packed. We will pack daddy tonight when he gets home and I can get his clothes washed and repacked.

I am really wasting time now and we have to leave for church soon!!!!

Nicki

Monday, September 22, 2008 8:24 AM CDT

Our weekend went ok. Saturday there was an auction that Timmy and I really wanted to go to. We have a full basement and we are wanting it finished....will be a great therapy area for Isaiah and we are doing it as a living quarters thinking ahead for when Isaiah is older and wants to be more independent. We are going to put his equipment down there and a mirror and rail for his therapy also....it should give us a good place to work with him. Anyways there was a construction company going out of business and they had several things that could have been useful to us. My mom had Isaiah at her house so that he could relax over there. Unfortunately we were not able to stay until they sold everything. By 2:30 we had to go to drive back for Hopkinsville to get Isaiah before my mom went out of town for business. I did get 2 filing cabinets and Timmy got a much needed tool box! Then that evening we ran over to my aunts house for a few minutes to celebrate my uncles birthday. Isaiah didn't make it as long as I was hoping....just didn't feel like it.

Sunday morning Isaiah woke finally breaking stuff up out of his chest. He coughed and coughed some more. Needless to say coughing like that we weren't able to go to church. We just hung low around the house playing. We had to run a couple errands in Russellville but after a hour he was ready to come home.

Everyday seems to get a little better for him. This morning he has played for 2 hours and now is ready to relax in front of a movie. He just doesn't have it in him to go go go like normal. Usually from the time he wakes until I make him take a nap he never stops. After yesterdays coughing I am hoping his chest looks clearer. No appointments this week. Just preparing for a week from today. Hard to believe it is already time for surgery. Lots of things to get done and packing to do.

I will update in a few days with how the little guy is feeling. Lets hope this progress he is making with it will continue.

Nicki

Friday, September 19, 2008 9:58 PM CDT

The last few days have been a lot like a roller coaster. At times Isaiah feels fine or seems to then at others he just doesn't feel well. Yesterday he woke up and felt awful. I called and cancelled therapy he just couldn't have done it. Then he napped and seemed to feel better. Timmy had to take a drill back to the conservation office so we rode in the farm truck with him to do that. Isaiah went to sleep pretty quickly which told me that even though he seemed better maybe he wasn't. Last night we went with dad to check on the cows which Isaiah loved. Timmy rolled the window down and he sat with his hand out the window. He loves watching the cows but I think the horses have his heart!

This morning he woke up happy as he could be. He had an hour of PT then the physical therapist from the schools called and she came out. He was ready for bed after all of that. Sarah was here for the afternoon with him. He slept for three hours but when he woke it wasn't the same little morning fellow. THe whole afternoon she said he stayed in his bean bag and didn't offer to get up. When I picked him up from her she told me all of these things. We had a very special evening planned. Today would be his buddy Logan's 7th birthday and Kyla was having a balloon release. We headed on there after he had a nap on the way to town. He did ok at first then I could just tell he didn't feel well. He tried hard to smile and be good but he just didn't feel well....he couldn't decide if he wanted the stroller, me or Kyla. I think he also wanted to go play but he has got to learn his legs will let him go run with the other kids. Then he just started getting grumpy. He had just had enough for the day. So we said our goodbyes and thanks to Kim and Brandon got everything packed up and we headed out a little earlier than we had hoped. The balloon release was beautiful. Isaiah actually let his balloon go and didn't cry....actually he smiled the biggest smile when all of the dozens went into the sky.

He is sleeping right now and needing some oxygen. We have several things planned for the weekend but if he doesn't get to feeling better we will just be hanging low. He has got to feel better in a little over a week or they will not operate.

I will update towards the end of the weekend with how he is feeling. Thanks for the compliments on the pics. I think they are wonderful also...Melissa did a fabulous job...her web address is there with them if you would like it. A huge thanks to his friends Clay and Will for letting him borrow the wagon and tractor. He really likes both of those toys when he goes over to their house!!!!

Nicki

Wednesday, September 17, 2008 10:17 PM CDT

Jsut a quick note.

Isaiah has had a pretty lazy day. Today was his and daddy's day together and when I got home Timmy told me he jsut hadn't felt well the whole day. He just seems to have no energy. Yesterday he felt pretty good. He even went to riding lessons (with the ok from the pediatrician).

I will update tomorrow or Friday with how our week is progressing. Hoping he feels a little better when he wakes in the morning.

Off to bed for me.

Nicki

Monday, September 15, 2008 7:27 PM CDT

We are home. Today was a day full of appointments but things went very quickly. To have 4 appointments and be out in 3 1/2 hours was a major deal.

We started with pediatrician. She looked at his ears and they looked wonderful. I then told her about the weekend. Isaiah has been running in the mid to low 80's with his oxygen. He had been doing it some then got better and last week started it a little then from Friday on the night times have not been the greatest for him. Last night I was up a lot with him. So Dr. Huss hearing all this listened to his chest and wasn't hearing any wheezing which is what she felt she would hear. She decided he should have a chest x-ray just to be sure nothing was hiding in the lungs.

So we then headed over to neurosurgery to see Dr. Tulipan. This was the quickest neurosurgery appointment we have ever had. He had us in and out. We didn't have to wait long or anything!!!! He said Isaiah looked great. He wants the scab that is on his head to go away and we have to start putting medication on it. It is to long to have a scab on the scar this far out. He then twice said something that truly hit home. He said Isaiah was nothing shy of a miracle. He then again said this is just a miracle that he made it through all of it. I knew this deep down but to hear a doctor vocally say that.....yes it was a miracle. They truly didn't feel he would make it through this and that was obvious today. Dr. Tulipan just kept looking at Isaiah smiling. He was a huge part in it all and I thanked him for all his hard work at the end. ......Thank you God for our miracle!!!

Then it was off to x-ray. Isaiah had his first x-ray sitting up. He was so big! He didn't like it but sit on the table like a big boy. Although he screamed the whole time I was so proud of him sitting on table to get the x-ray.

Then we went to pre-op. They didn't have anyone to evaluate him but gave us our paper work and they will get it the day of surgery.

Then we were off and Dr. Huss called with Isaiah's results. This off and on fever, fussy behavior, laziness in sitting and all kinds of other things are more than likely caused by the fact Isaiah has bilateral pneumonia. They weren't sure at first when reading the x-rays because his are so hard to read. Then they pulled up old ones to compare to and it was obvious to them. It could have been caused by aspiration but he doesn't eat that much and they think it just developed a few weeks ago. He can not try food by mouth until after the surgery and we just have to keep an eye on this and hope it gets better. He is fast asleep right now. He will be on an antibiotic for 10 days and this should not put off surgery.

Well I must go right now. My nephew is bringing me the last horse my father wanted me to have (he was actually getting ready to bring it when he passed). He is a big black and white spotted walking horse. He is just beautiful and I couldn't be more excited. I hear them coming got to go....pics of him tomorrow...his name is blue eyes....yes he has crystal blue eyes!

Please pray for Isaiah's lungs to heal and his oxygen levels to improve. I feel really bad he has felt so bad and we couldn't figure it out over these past few weeks. Will update tomorrow night with how he feels. Thanks for the compliments on the pics of Isaiah!

Nicki

Wednesday, September 10, 2008 9:50 PM CDT

**** New slide show of a few of pics Melissa took of him on Labor Day. I think they are wonderful!!!!

Isaiah has had a wonderful last few days. He has had a lot of fun with his preschool friends. Let me just say if the whole world had the innocence of a child the world would be so different. I walked in yesterday morning with him and I thought they were going to start jumping up and down they were so excited to see him!!! Huge thanks to Ms. Teresa for preparing them and introducing Isaiah before he got there! They all wanted to hold him!!! Now how funny is that. He is as big as them and the same age and they wanted to hold him. They all knew he was special and wanted to find a way to love on him.

After preschool he had PT and Speech. He did well for both of them. I have been very surprised at how well he has done for a new therapist. His new therapist is a male and Isaiah loves him. He really tries to communicate and is trying new things for him. He loves all of his therapist, they are wonderful to him and he loves them for that. After a full day he went riding. He had a different rider with him and he wasn't sure about that. Once he got used to her he did fine. Two more weeks of riding lessons then he will be done until the spring. We are actually going on Friday to meet with one of the senators and a horse organization so that they can hear the benefits of riding therapy. They are trying to get an indoor arena here in Logan county. Boy would Isaiah be excited and how that would help him.

Today Isaiah went on his first field trip!!! He went to the fire station with all of the rest of the kids. He did great! He felt right at home because how many times has he been there so it was a good place for him to go with them. Then he went to the park. He had one little girl who swung with him and just wanted to be beside him. She was so sweet....she had blonde hair and big brown eyes so they were cute as they could be swinging beside each other!!! After that we went to Kyla's for him to play. I had to clean a house real quick so she kept him. He had fun taking care of Noah....he would rock him, hold his hand, pet on him you name it. While I was gone he had enough of not having Kyla's time and literally made her put Noah down and hold him.......oh an only child!!!!!! She thought it was cute I told him he had to share!! Then He got to go have dinner with Harrison! The boys were so good at dinner and Isaiah wanted to go home with them. I told him in a few weekends. Wish there had been more time to play but they made the best out of it. Isaiah watches and learns lots from him.

So that has been our week. Lots of things going but what fun Isaiah has had. Monday we were here all day and he kept going to the door. I told him one day of staying put wouldn't hurt a thing!!! Next Monday he has a doctors appointment. This weekend Daddy works all weekend long so things will be calmer. Please be praying for the 29th and all that will go on. This will be a big stay.....lots of changes for us. Praying he will be off the home vent and a smaller trach. Oh how I can't wait for the day to put him in the bath and just let him play. We will have a shopping spree for bath toys!!!! For 2 years he has not been able to take a normal bath and he loves the water. We may have to take a mini vacation to a hotel with a pool!!! I know in His time this will all come and I must be patient.

I am off to get some sleep. Isaiah has a lazy day at home tomorrow with Sarah. No running for him and no therapy so he will be able to relax a little after a busy few days. I will update again soon. Probably after the appointment on Monday.

Nicki

Sunday, September 7, 2008 8:53 PM CDT

There is a new slide show up with some recent pics. Horseback riding, gathering here at our house, and the family breakfast.

So this weekend Isaiah has felt better. Friday he played with Sarah and mommy ran around like crazy! That evening was the birthday party for my sister and her husband. There birthdays are only 2 days apart so we celebrated them together.We were going to have a fire but it rained so my living room had to work!!!! I was very thankful for the rain and a big thank you to TImmy for getting the wood and all together and it didn't work out! Isaiah had an amazing time on Friday night. He loves to watch his grandpa play then there were three people playing. I have been holding out giving him my guitar from when I was 7 or 8 but he wanted so bad to help. I got in the attic and grabbed it from him and he thought he was so big. His grandpa or uncle Drew have got to get new strings on it for him but he loves the way it sounds. There are pics on the slide show of it. I was so proud of him for sitting so big. He can't figure out how to put his hand on the neck of it and make it work. Maybe someday he can learn and his fingers not being able to bend will not get in the way. Huge thanks to Sarah for staying all day with him and helping with him so Timmy and I could relax some with everyone.

Saturday morning we went to breakfast for a family breakfast. It was kind of like a mini family reunion. It was a lot of fun and we got to talk with lots of people. Isaiah had fun playing with the kids. After that we went to his Aunt Karon's.....he got to ride accross their land in Nate's wagon and he had fun. Since we were in Alvaton and we are never out there it seems we went to go visit TIm and Belinda Westbrooks. We had an amazing visit with them, so good when you can visit with friends you haven't seen in awhile. We were going to do more visiting but he was asleep within 2 miles of their house! He was worn out.

Today Isaiah and I went to church. Then we went to visit Daddy at the station and back home for us. Our air conditioner has been acting up so we weren't sure what we were coming home to! Right now it seems to be ok, no water on the floor in the basement....

This week Isaiah does not have any appointments. Next Monday (15th) he will have one. This week he does have his first field trip with his preschool class. He is going to his class to see his friends for the first time on Tuesday and will go to the fire station with them on Wed. I am really excited for him! This is a good time for them to get to know him and allow him to do something with them.

That is about it for us. We have had a good weekend with friends and family. More cherished memories so that always makes for a good weekend! Enjoy the pics and I will update after his field trip!!!

Nicki

Thursday, September 4, 2008 9:58 PM CDT

So sorry I am just now updating.....we have been busy with a little guy!

The good news is he seems to be feeling better. I would put him about 50etter than what he was. Bless his little heart he has coughed until he had blood coming out of his trach. His oxygen levels are better today than they have been. He has played better today also. Dr. Huss really just thinks it is a cold and allergies. I didn't take him in. Had he woke this morning and still not felt well I would have taken him in. It actually made me feel better that he woke this morning with his nose caked over! So that is where we are. Temp is still wanting to hang around 99 but overall I really feel this is a cold.

You know it is so hard with Isaiah to know what is wrong. I told Dr. Huss today I try so hard not to overreact but to react correctly. After what happened this summer this week when he started with a fever I wanted to run him to the doctor and beg them to fix it. The fear of what could be was about to overwhelm me. I have since given that to God and once again remembered I am not in control. I must trust in Him to guide me in how to take care of Isaiah and me not be the one to try and fix it. I feel like Isaiah is jumping this hurdle and will be ready for surgery on Sept 29th.

Well that is our week. Sick little boy and hanging low. Tomorrow night is a cookout here for my little sisters birthday. Time for a fire out back, guitars around the fire, and lots of singing. I love cookouts here......relax and enjoy family. I am proud to say my dad will be one of them with the guitar...his arm isn't stiff from the hemo!!!! Saturday as long as Isaiah still feels good we are going to eat with a lot of family from out of town....kind of like a mini family reunion at Ryan's!!!! Looking forward to seeing everyone.

Isaiah is sleeping and now that the speech is over I can go to sleep! I will update sometime over the weekend. There will fore sure be pics for a slide show!!

Nicki

Tuesday, September 2, 2008 6:47 PM CDT

Hope everyone had a good Labor Day weekend, we did! Saturday morning first thing we went to his physical therapist house for a little while so he could play and mommy could pick something up. Then Saturday night we went and picked up my parents and went to eat dinner. We thought maybe dad could use some cheering up! We had a really good time. We were going to go to the tractor pull in Franklin but we were all tired by 9:00, well everyone except Isaiah! Timmy had worked on the farm that day and I had cleaned all the windows and blinds in our house and the house itself. Sunday we were able to go to church and spend some time with Timmy's grandmother. We then spent the evening with my nephew and had a great visit. Isaiah loved staying up late with Jacob :) Monday was just a whatever we wanted to do day. Isaiah had a long nap then we went to Melissa's for her to take pics.....thanks so much Melissa I know they are going to be great! After that Isaiah had some play time with Clay and Will. I know it sound like we were terribly busy but it wasn't bad. Isaiah is in a stage where he likes to go so go is what we did! Like my friend Melissa said....it is hard to remember back to the 18 months I couldn't travel alone with him for even bread!

This morning Isaiah woke not feeling well. He was up around 3:30 coughing and I gave him a treatment but it didn't seem to help. He is also running a low grade temp. The coughing is much better since I changed his trach out....I think it was itching his throat. The low grade temp is still around. If this continues Isaiah will have to go to vandy on Thursday for lab work. Tonight we should have went to a Family FUn Night at school and riding lessons but we decided home is where Isaiah needs to be. He just didn't feel like the other tonight. Temp right now is about 100.2 so we will see how the night goes.

My dads surgery went well. He had his caths pulled from the stomach and a PC put in his chest to run the hemodialysis from. He has to stay the night tonight and they will run dialysis in the morning and hopefully he gets to leave. I was up there most of the day thanks to Sarah for keeping Isaiah and Timmy left work early to be there when he woke up. He isn't causing to much of a problem about staying and is actually being a pretty good sport!!! Maybe that call will come soon.

I will update in the morning first thing on how Isaiah's night has gone. Hopefully all will be well and he will do just fine.

Nicki

Friday, August 29, 2008 6:32 PM CDT

Well it is Friday night and we have finished the working week!

Isaiah is doing ok. He just acts like he doesn't feel well. Even Sarah noticed a real difference in him today. He is very grumpy and lays himself down all the time. I can't hardly get him to sit. Last night in his sleep he moaned a lot. I just pray this is allergy related type stuff. On the positive he listened very well this morning for his preschool teacher. He didn't want to participate a lot but for the first time he listened and responded correctly. He would sign yes and did fine. While mommy cleaned houses him and Sarah had a big day playing. She said he was not himself but he got some outside time and stuff like that so he enjoyed it. Just going to try to keep him busy doing things he enjoys so that he can keep his mind off of whatever is bothering him.

He will have his eye surgery with his palate surgery. The eye doctor confirmed that so things are getting worked out for 29th. We are now waiting to see what ENT has to tell the pediatrician and we will have a good plan. Glad things are moving forward for him.

So that is about it. We have just been working a lot around here. I have been making salsa and going to attempt relish (look out Uncle Frank your phone is going to be ringing)!!! Tomorrow morning Isaiah and I will clean the house...he loves to swifter! Then if his allergies are ok we will go help daddy on the farm and if he feels like it. We have been trying so hard to get things done around here. Our barn doors are up and look really good, now to finishing the fencing!

As I close I ask you to pray for my dad. I think everyone knows he is on kidney dialysis. Recently he fought an infection and we thought it was gone. It is back and has hit him hard. On Tuesday they will be taking his tubes out of his stomach and he will have to start hemo for 3-4 months then hopefully get back to the other if the tubes can be replaced. This makes his arms hurt though and he is so good at the guitar and it is so hard for him to play on hemodialysis. Pray for him and the rest of us....he isn't the easiest to deal with in the hospital, Amanda has moved to Louisville and will have to experience being away with something "going on" for the first time, and last but not least for a kidney. He desperately needs one.

Thank you for your support for our family. I will update Monday. We are hoping to have a good weekend and maybe try to get Isaiah together with a friends or two.....have to try to do something fun!

Have a Happy Labor Day week....Isaiah gets his pictures done Monday and a play date all in one visit!!!! I will share them when I have them. A new slide show will be up tonight.

Nicki

Wednesday, August 27, 2008 2:52 PM CDT

We are finally home......

I will try to update and not make this to long while my little guy is finally sleeping for the day. We started with Dr. Kelly. He was hesitant at first about doing a surgery and not giving him time after meningitis but I told him all that was going on. I informed him that Isaiah has gotten very good at pulling his trach out. Isaiah wasn't excited about me telling on him then I informed him on how good Isaiah is at hiding the area! He decided that his procedure had to be done so the trach could come out very soon. So on Sept 29th they will fix his palate, hopefully fix his eye, maybe run a bronc and put a smaller trach in place. Then while he is there they will try to pull him from the vent. Wow it will be a busy stay but what a step in the right direction. Dr. Kelly was thrilled that he could breath just fine without it and that cognitively he could take it out and try to trick me. I wasn't so happy with him when he did it at 9:30 last night!

I also had to talk with Dr. Kelly about an issue that is now an issue. Isaiah has almost reached his lifetime max which is 2 million. He currently has 129,000 left. Unless Timmy's insurance was to miracoulously change between now and then he will not have a private insurance company. When we hit 1 million I knew we had to think of what we would do when this time came. We had 2 options....me to go back to work and see if we could find anyone to keep him all the time (which I could barely make enough to pay them) or try to get him started with KY Medicaid. We prayed about this and both of us felt Isaiah is better with me home the majority of the time. I do try to leave him a few days a week with Sarah and Timmy just because it is good for him to be away from me some. So I sucked it up and called the office to see what I had to do. On Tim's income we did not qualify but since Isaiah is disabled (state labelled him a long time ago) he could qualify on his income(which all we needed was him anyways and him being a toddler he has none). So Isaiah will be covered by them but I don't know how it will change his care. They have been his secondary for a while and it has worked fine so it should be fine. All surgeons have the right to decline a patient if they are on KY Medicaid at Vandy....not the hospital but the docs can. Luckily for Isaiah they all love him and I was once again reassured today that he is THEIR patient and only theirs and they will take care of him. Dr. Kelly stated that insurance wasn't important with Isaiah anymore only his well being. When Isaiah goes to school and I can go back to work he will be under my insurance so that will make me feel better then. THose who know me and TImmy best know how much this bothers us. I realize that is what it is there for but it is so hard to suck it up and know that private insurance is done and now the state has to help. There are so many other children who need the help that aren't getting it. A huge thank you to all of Isaiah's doctors who love him enough to not care about money. If the rest of the world could be so full of love..... That may be more information then you needed but that is where we are at.

So then we were off to see Dr. Huss. Isaiah's ears looked great, actually she could see both tubes and she was really impressed. That doesn't explain the spells lately but I am giving that over to God and living for today and trying so hard not to worry. She said he needs a little Benadryl for a small rash on his tummy (I am brilliant and used a different laundry detergent on towels) but besides that he looked good. He was junky but that was my fault. I skipped one med over night that is optional trying to let him loosen up because he was to thick. Then it went to the opposite end.

After leaving there we went to see Penny (baby Ben's mommy). We also got to see lots of people we know who work and the hospital and I got one of my coffee's. So after visiting we headed home. We were going to try the zoo but it couldn't decide if it wanted to rain or not and Isaiah was so tired by this point. He is now sleeping after only sleeping for 10 minutes. Silly boy! We had a few errands to run in Franklin and we stopped to visit with my grandparents. Isaiah hit me and tried to get me to leave....he wanted them to himself. I told him his grandma was coming tonight and I wanted to see mine. He just starred at me. My mom is coming tonight to watch Isaiah for a few hours. Monday we let him go to the barn with us while we worked and she thought he would be much more comfortable with her!!!! He did like hammering with Daddy. Timmy would hammer wood on the new barn doors and Isaiah had his hammer and would hammer the inside of the truck. It was really cute.....boys will be boys. Well I guess I have made this plenty long. HOpe all of this makes since. Thank you to the lady who stopped in Walmart last night to talk to Isaiah, I didn't catch your name but that was so sweet to introduce yourself. She follows his page and wanted to meet him! Have a wonderful week. I will update on Friday with how Isaiah is feeling and final plans for the surgery. Please pray for it as we are only a few weeks away.

Nicki

Monday, August 25, 2008 8:51 AM CDT

Well we are here and doing fine!!! I was informed yesterday at church I hadn't updated then thought yeah I haven't....honestly I thought most people check during the week only (thanks Leslie for reminding me :). Well here is an Isaiah update.

So we left last Monday to go to Louisville. We actually traveled up by ourselves. Isaiah did fine and didn't cause me to many problems. Around E-town he started getting restless but did fine. Isaiah had lots of play time. We went to the zoo....although something happened either on the way to the zoo or when we got there. He smiled at the girafe then he started trying to get sick and then some seizures started. Not sure what happened there. So we went home with the boys and he had a long nap and was fine after that. He loves the zoo and I hate it for him he felt so bad. We also hit a consignment shop that had lots of good things for Isaiah. There were several things for very cheap that are good therapy toys. Not that he knows they are therapy toys. On Wed. we went to see his aunt Amanda's new apartment and to take her out for her birthday. We had so much fun spending the 5 hours with her. We helped her put some corn up along with a few other things I had picked up from the Amish her in Logan county. We are going back up a weekend in September and can't wait to spend more time with her. That is about all. Isaiah and Harrison just had some fun play time.

Isaiah's daddy got back into town Friday night and was home with us for the weekend. Boy were we glad to have him home. We have had a good relaxing weekend. One of my friends called last week wanting someone to take her shopping on Friday that could help her buy the most with her money. She picked the right girl!!!! So Brooke and I went shopping on Saturday then her little boy that is Isaiah's age came home with me. They all then came down for dinner and homemade ice cream! Sunday was filled with family time. Back to church for the first time in 4 months which was an amazing feeling. Loved being back. Isaiah wasn't in need for any attention either so many people to love on him. He did well then all the sudden decided the party was over and it was time to go home! Then that afternoon we all enjoyed a Sunday afternoon nap and ended our day with the closing ceremony of the Olympics. So really nothing going on just having fun and some much needed family time.

This week Isaiah has an appointment on Wed. He will see Dr. Kelly and Dr. Huss. Hoping Dr. Kelly can give us a plan on the palate fixed and we can schedule lots of other things around that....his eye to be opened back up, trying him off the vent, bronc him and put in a smaller trach. Isaiah has pulled his trach out twice this weekend and is just ready to get it out. I keep telling him to be patient we have to follow the rules and not do it ourselves. Then Dr. Huss will look in his ears. Isaiah has been trying to lay a lot this weekend. He hasn't done this in months and is not like him. I am hoping his ears will explain why he acts like his head is hurting. I am praying it is his ears and nothing else. He just really favors his head right now. Trying to ignore that and focus on the good though. So Wed should be an interesting day. If he does well and if I can find someone to go with us to the doctor then we will probably try to hit the zoo for a few minutes. His appointments start at 7:50 so we should be done by 10. Isaiah also has some therapy this week and Tuesday night is riding therapy. I promise I will have my camera this time (no, Amy I didn't have it with me)!!!

That is all for now. I will update Wed. as soon as we get home. It should be mid afternoon. Have a wonderful blessed week. We are enjoying the rain, thank you Lord for the rain, our pastures needed it so much.

Until Wed.
Nicki

Sunday, August 17, 2008 10:23 PM CDT

Where has the week and weekend gone. We have had some fun times and good news.

I got a call on Friday that said Isaiah's blood work looks good. His ears are growing a few things but hopefully nothing that can't be treated with the drops. Keep praying for the middle ear to have the same infection as the stuff coming out. THe fluid has stopped pouring from the ear so that is good. He has been very happy and wanting to walk in his walker a lot. He is showing a little interest in eating....mostly Cheetos!

So this weekend Isaiah had yet another birthday party! He went to his friend Will's party and had fun. It was a nice time to sit outside let the kids play and just visit. Isaiah really liked the bag of treats for him at the end! It had this little lizard in it and he thinks it is grand! Then we came home from the party and Timmy's brother and his wife came to stay with Isaiah. Saturday was my class reunion. A huge thank you to Chris and Jamie for keeping our little fellow and not giving us a time to be home!!! They stayed the night and kept things going around here until Timmy and I got here. It was so much fun and so nice to be out with friends and not having so much to worry about. I saw a lot of people I haven't seen in a while and lots that follow Isaiah's page......had no idea so many of you followed Isaiah....thanks for the support!!!

Today has been a lazy afternoon. This morning was busy. Isaiah was up bright and early. Jamie and I headed out to go get supplies for breakfast and I came back and made everyone a big breakfast. Then we had to get Daddy packed. He is in Alabama for the week. We were sad to see him leave but using it as a reason to go to Louisville!!! We are going to stay with Harrison for a few nights. My little sister has moved up there and Isaiah can't wait to see her. He has missed his Amanda and Drew so much. He has really been trying to get there picture off of the table lately. It is like if he can just look at them a bit he is happy. We will have fun and have a chance to get away after all of the crazy stuff with appointments and IV stuff!

That is all we have going. Going to be gone for part of the week and just have a break away. Please continue for Isaiah to stay in good health. His allergies and asthma seem to be getting better. I think the steroid made the big difference. Also pray for the plan for ahead in the next few months. There are going to be lots of decisions to be made and lots of changes......hopefully all for the good. Wouldn't it be wonderful if we were looking at no trach by the end of the year. I really think his speech and eating will take off. When this happens we need to pray for his physical development to continue. I don't think it will be a problem because he has a much bigger airway. Lots on my mind right now and ready for next week to see Dr. Kelly. I think he will be able to give us a good plan then! Just praying for the best thing for Isaiah. Have a wonderful week and I will update on Friday. I am sure I will have several pics for a slide show. I have a few cute ones right now I can't wait to share.

Nicki

Tuesday, August 12, 2008 8:56 PM CDT

Sorry I am just updating but we are literally just coming through the door.

So we started our day with a blood draw. We walked into the room and he started screaming. Poor thing has learned there is a certain room where blood draws happen. With his port it is really easy and just one stick but who am I to say I break out in a cold sweat with the thought of it! Then it was off to the next appointment. That was infectious disease. They were concerned with his chest. He was moving air well he just had a lot of wheezing and crackles in his little lungs. We were seeing his pulmonologist a few hours later so they were fine with that. Then they looked in his little ears. Oh his ears. How one little boy could be off 4 antibiotics for 2 days and have the ear infections he has I will never know. They are a little concerned with just that point. The type of meningitis he had the bacteria grows on everyone's skin. So the thought was had the bacteria from the leak gotten into his ears and been hiding there. The culture will show it to some extent just because it lives on us but how bad is it in the middle ear where it shouldn't be. We should know more on that later in the week. They sent us to ENT to have his ears suctioned. They did a culture of what was coming out. He seemed to feel a little better after they suctioned them. He is on ear drops and we will know tomorrow whether to start an oral antibiotic. Then it was off to pulmnology. He wants to start him on a oral steroid which will lower his immune system (but will help his chest). The good point is when Isaiah has his palate fixed they are going to try him without his vent and start taking it off to prepare for trach removal.

Then we went to riding lessons. He absolutely loved his riding lessons! He cried when we had to get him of the horse. We then went to get him a helmet (we borrowed one to see if he would like it). He was so cute in TSC sitting in the floor trying on helmets! This will be a Tuesday night adventure!!!!

Well it is late I will update more in a day or so when I have more info.

Nicki

Monday, August 11, 2008 2:30 PM CDT

Sorry I haven't updated on how he is doing. I can't tell a lot of a difference. He is having major allergy and asthma issues at the moment so it makes it hard. His ear is also draining some so that doesn't help either. I am really hoping he is better and we won't see any more of the infection symptoms.

Tomorrow will be a big day. We start by going to the pediatrician's office for blood work. I am also going to have someone check his ear. Then it is off to infectious disease to see what they have to tell us. Then we see his pulmonologist. By the time that is all over we will probably need a nap!!! Then hopefully we don't have to go back for two weeks when we see Dr. Kelly. I hope at his appointment we can get his palate repair surgery scheduled....the sooner we do that the sooner they will consider taking the trach out.

Our weekend consisted of some fun. Friday Timmy's brother came down to help him on his birthday to do a few things here on the farm. We then had a meal and cake. We have a new baby donkey on the farm so Isaiah went up to see it. Then on Sat. one of Timmy's friends came down to help him with a lot of things here on the farm. Wow did they get a lot done. We then had a date night. Timmy didn't want a party just a date night. Isaiah had a great time playing with Sarah and I don't think he really missed us! He had therapy throughout the day and a lady from church who he jsut loves to visit with stopped through so he was really excited. Yesterday Isaiah and I were sick together....my allergies and asthma started up...fun fun. Then this morning Timmy went to work. Unfortunately when he was leaving he didn't know my 18 year old beagle was under his truck. He ran over her and bless his heart had to come tell me at 4:30 (he was going in to work early for someone). Me being the animal person I am was very upset then come to find out my Molly had made it through him running over her which made the matter worse. My parents got a call at 4:30 and were here by 5:30 this morning and we had my vet come to do the humane thing and put her down. It has been a difficult morning to say the least. I must say Molly had a wonderful 18 years as a true family dog. What a wonderful little beagle she was. On the more positive note Isaiah had 2 friends all the way from Philly to come visit!!! One of my very good friends from high school and college was in and her family came out. Isaiah did really well playing with them. He really interacted and loved them being here. He got to show off his peacock which was a huge hit. Thanks Brooke and Jeremy for bringing the kids out Isaiah loved it and was sad when they left!!!

So that is what we have been up to. Please pray for tomorrow and the results we get. I will update as soon as we get home from the appointment. It could be a little late. Thanks for your continued support on this journey we are on.

Nicki

Friday, August 8, 2008 8:43 AM CDT

UPDATE:8-8-08 11:45 AM
So Dr. Huss just called. Since yesterday was 4 weeks since the shunt was put in they want to stop all antibiotics today. He will get one last dose in 30 minutes then he is done. Please pray for Isaiah as he comes off of the medications. We will go on Tuesday and they will do blood work to check levels. It could take a little while for all of the drugs to get out of his system before we will know anything forsure. Little nervous but I knew we had to stop them at some point. Birthday present for Daddy we can go to bed at a normal time tonight!!!!

Well we are hopefully done with our last full week of IV antibiotics. We will find out on Tuesday but very hopeful they will take him off and he will do well. It has been a long 4 weeks but just glad we have him home with us to administer them.

Isaiah's asthma and allergies are really acting up right now. The last 2 times we have been at the doctor she said he sounded wheezey(not a word I don't think!). Then Tuesday night he really started coughing. Yesterday he had a really off day. So we are doing treatment every few hours and getting this under control. He really wants to feel well. He tries really hard to play. I guess we will be laying a little low this weekend with him. HOpefully he will be better very soon!

That is about all going on with us. Isaiah's appointment is on Tuesday and it is a day full of them. First starts at 9 and the last starts at 2:30. That night we are going to watch a group around here that does riding therapy. We are also going to get Isaiah a riding helmet. Then hopefully when his asthma is under control again he will start horseback riding lessons!!!!

Isaiah wants to wish his Daddy a very Happy Birthday today!!!! His daddy takes wonderful care of us and leads our home well. Thanks for being such a wonderful daddy and husband we love you. HMMMMM maybe Isaiah will get to dig into daddys cake tonight the way he did mommys!!!!!

Monday, August 4, 2008 10:36 PM CDT

All is well in our house.

Isaiah had his appointment this morning and the blood work is just the same it looks good. His antibiotic levels were in range to be providing the best coverage possible and his counts were normal in the blood. Next week we go on Tuesday rather than our normal Monday and we will actually be seeing infectious disease to determine what to do with IV antibiotics. I feel that they will go ahead and take him off of them. We will see. I think he is doing well enough with his numbers in his blood it will just depend on this whole being sore thing.

So this weekend we had lots of fun. Saturday we had company and Isaiah got to play with Anna and Emma here at the house. He really had a lot of fun. Then it was off to Bowling Green another buddies first birthday party at the park. Isaiah had lots of friends there and was happy to help celebrate with Garrett. He really enjoys being around his friends. Then on Sunday Ann Kelly heard Timmy and I were building barn doors and here she comes with her husband to help Timmy and her and I to go shopping! We had fun and the guys got a lot of things done. Over the winter a wonderful group of people put our front ones up and since then two more ended up going bad and had to be replaced this weekend.

Today Ann Kelly went to the doctor with us so that Timmy could work some on the farm. He got lots done and the boys had a good time. We had a few places to run this afternoon but the boys hung in there with us!!!! Now for the story of the day. We were headed home and all of us were a little tired. Well I see Isaiah in my mirror waving around being silly. He is looking at Harrison laughing and waving.....hmmmmm I should have thought something. Well then they both get really quiet and I can hear that he is breathing different.....yes Isaiah had to show Harrison he could pull his trach out going down the road. So here we are on a country road finding a drive and putting a trach back in. Harrison looked out the window as if he knew nothing and Isaiah kept playing and became very quiet as if he didn't know how it happened. I just laughed and was glad to know he was so excited to tell his friend he can breath without that thing!!!! Soon buddy we will work on getting it out....he has to be patient and make sure this infection is gone before they will even consider it. We did have to tell him he can't be doing that and going down the road doing it isn't safe at all. Boys Boys Boys......

So I think that is it. It has been a busy weekend and hopefully the rest of the week will not be as bad. Planning on taking it easy some this week and relaxing when we can. Have a wonderful week and I will update towards the end of the week unless something changes.

Nicki

Friday, August 1, 2008 8:06 AM CDT

We finish our week with Isaiah feeling pretty good for the most part. As long as he gets his tylenol when he wants it he does well. Still another week and half before they decide on the antibiotics. Please be praying for the docs and that they will know best on August 12th.

He is so cute right now. He really likes his room and the toys in there. He iwll be in the living room and all of the sudden he starts scooting and off to his room he goes. He is also enjoying his walker right now. He goes to it and sits and waits for you to put him in it. I am hoping this is a sign he really wants to walk. He sure never just lays on the floor now.

Well that is about it now. I need to go and go get my things done. Isaiah has another birthday party tomorrow night!! He will love going to the park to play with friends! I am sure I will have some pics to update with. Have a blessed weekend....make the moments count.

Nicki

Wednesday, July 30, 2008 11:39 AM CDT

Isaiah is sleeping right now and doing ok. He still at times seems irritated. Last night he couldn't sleep for more than an hour or two without waking up. We gave him some Motrin and he did fine the rest of the night.

He has played a lot this morning. He has this remote control fire truck....well its a big tonka and it has the remotes on it. He finally learned to make the ladder go up. He has had down mastered for some time but finally he learned and he just laughs when it goes up. He is really starting to get into big boy toys. I have tried to work with him some on walking today and he just still acts like his legs hurt. Have to build the strength in them. Therapy started back this week and his PT will be here next week so she can help me with suggestions. School starts back next week and then he will start having preschool again. That will be a big help for him. Hopefully the trach will get to come out in the winter and then he can go for an hour or two a week. Right now we will just keep our play dates with friends and let the therapy come to the house.

That is all in our world. Trying to build strength and keeping him comfortable. Timmy is working today and Isaiah and I have a few errands this afternoon. I will update at the end of the week.

Nicki

Monday, July 28, 2008 7:17 PM CDT

Today has just been a roller coaster ride. Isaiah has been very grumpy the past few days and seems to really need his Tylenol. We went in this morning to have his blood draw and new needle put in and he was beyond upset. Dr. Huss and I talked and she just wasn't comfortable with how he was acting. You see Isaiah shows totally different signs of being sick than most. So she sent us to the Emergency Room.

In the ED we stared with a CT and x-ray. This is all part of the shunt series. That was the fear that the shunt had stopped working. Both looked fine so they decided not to tap his shunt (take CSF fluid). The drew blood and nothing threw a red flag. On the antibiotics he is on it would be hard to see anything due to them hiding it. So we are going to pray that it was the right decision not to get the fluid. He acts a lot like he did when he went in the first time and that was obvious to everyone watching him this morning. They saw him that morning. So we are just watching him right now and under strict instructions to call at any change at all.

He just kind of goes in and out of these grumpy spells. We will see and time will tell. Praying for continued good health and as the time nears to take him off the medication that he is free of bugs. Having faith and trying so hard not to worry about tomorrow and focusing on today.

That is all for now. I will update tomorrow night with how he feels. By the way a huge thanks to friends from our church who are suppling us with meals right now. They have been so helpful and have allowed us to get things done and relax some.

Nicki

Sunday, July 27, 2008 10:13 PM CDT

We will be headed to Nashville tomorrow for our Monday trip. He will have his needle changed and blood drawen. I will update tomorrow when we get done.

Nicki

Penny's baby has a web page.....www.caringbridge.org/visit/benjaminmatthew

She is currently trying to get things up on it....should be an update tonight.

Friday, July 25, 2008 9:02 AM CDT

Nothing new to report but thought I would report anyways. I have been told by several people that nothing new is fine but just update!!!!

Isaiah is having a good morning. A little grumpy but it may just be the rainy day. We are starting to work on his standing skills again. I am trying to get all therapy started back so that he can start building up again. Before the surgery he was doing so well with weight on his legs and stuff. He has been in his walker some since we have been home but his legs are just weak. His sitting is perfect though. He doesn't lay on the floor anymore. He is always sitting up unless he is in his bed. Every so often he will want in the bean bag to watch a movie. His cognitive skills seem to be building some. His cause and effect and problem solving seem to be better. Right now he has made his way over here to the computer and trying to get the drawers open on the desk for me!!!!

That is about it in our world. Saturday he has a birthday party so that will give him a chance to play with friends. Then back to the doctor on Monday. Same thing as last Monday.....draw blood and change out the needle. If it is cool we may make a zoo run. It has been to hot when we have been there lately to make that run!!!

I hope everyone has a wonderful weekend.

Nicki

****I will have a web address on Penny's baby as soon as they name him. At 28 weeks they were still making up there mind. She may get to leave tonight so that she can be with him in Nashville. He is holding his own right now just has a long next 10 weeks or so.

Thursday, July 24, 2008 8:25 AM CDT

Isaiah is doing well. Still the same oh thing. Antibiotics, tylenol when he needs it, and the night time temp. He is adjusting better to being home. I think he has finally realized it is just us here and that is ok!

Right now I need to ask for lots of prayers for a special little baby. My friend Penny delivered yesterday at 28 weeks. Penny has a bad infection and the baby has it and had to be transported to Vanderbilt. He is currently on a vent and getting a lot of support from it. He is having bloodpressure issue and things of that nature. She is going to get him a caringbridge page soon so people can keep up with him but please pray for mommy and baby. I was with her until about 1:30 this morning and Brooke and I left then after getting the baby on the Angel ambulance. He is such a little guy and so sweet. He did have a good weight to be a 28 week baby so that will help with everything else that is going against him.

So that is it for now. We have had a very busy morning. Lots of people in and out for equipment and stuff like that. This afternoon I have an appointment so Isaiah is giong to Sarah's house.

I will update soon.

Nicki

Monday, July 21, 2008 7:05 PM CDT

We are back from the doctor. Everything went fine. We started our morning off going to get Reagan Miller who went with us. Let me just say thank you so much to her for riding with us. She was such a huge help to me. She sat right there beside Isaiah and played with him and wanted to learn everything medical to do with him.....I'll have her babysitting before you know it!!!!! Really she was amazing with him today, she jsut loved him for who he is. Isaiah loved her. He would hug her arm and kiss it. The sweetest part was telling me all of the wonderful things about the hospital and how it was a friendly place and she was glad Isaiah liked it so much (he laughs and claps when we get there).... how big for a little girl who was last there with her little brother. Thanks Reagan you will never know how much help you were to me today....Isaiah is still blowing you kisses!

We ended up not seeing Dr. Kelly today. It was a long process but he is fine with seeing him in a few weeks. He know between myself and Dr. Huss nothing will go by us! Isaiah had the needle pulled from the port then we went to eat to give his skin a break. We then went back and they put it back in and pulled blood. One of his levels is a little high so one of the drugs we will only have to give every 12 hours. This will help all of our sleep schedule a little!!! The next few nights will be rough because it will be due right in the middle but then off to a better schedule!

Overall today was good. Isaiah has been happy with Motrin. I make him wait to tell me he needs is because I don't want to just give it to give it. We were at the Millers playing and he decided he had to have it so after we left he was much happier 45 minutes later....that didn't help him when we went to visit daddy. We went to the station to tell daddy hi really quick but he was really grumpy so we left. Maybe we can go back soon and he will be happier.

Isaiah had a great weekend. Harrison came to visit this weekend. Isaiah had a really good time with him. They went to the park, played and had a trip in the farm truck to check the cows. Two boys thought it was so much fun to bounce around in there mammas laps going through the fields!!!! I have lots of pics I will get into a slide show tonight. Timmy also had me a birthday party this weekend. It was really fun....Isaiah loved that there were 15 or so people here! Hopefully he will have more play dates with friends soon. I am finding he really needs the socialization with kids right now. He is around adults and gets so much attention from adults that he needs some good kid time. He does well but needs to learn the whole concepts of playing with and sharing. It is hard to teach him all of these things when he is in the hospital all the time. Now that we are home we are going to work on it.

Isaiah learned a new trick on Sunday and that was how to pull his trach out. Yes he pulled it out 4 times with guess who only me. I handled it though. He was sooooo mad when I put it back in. He would pull it out close his neck up and laugh and say mama......one of the most precious moments ever but I could have done without the trach being out to do it. Daddy didn't find it as cute and had a talk with him and he hasn't done it since :)

Well I think that is it. I will update in the next couple of days with how things are going. Right now we are just enjoying everyday that God gives us together. If there were 5 things I would tell people I have learned from Isaiah this is one of them. Today was hot and we had a lot of driving but wow we were together and experienced laughing, crying, scooting and so much more. Enjoy ever moment with your loved ones.....we sure do.

Until next time...
Nicki

Wednesday, July 16, 2008 9:45 PM CDT

First of all thanks to all who have wished me a Happy Birthday. What better for my birthday than for all of us to be home together.

We started our day with time outside. We spent about 1 1/2 hours outside, Isaiah got to help me water flowers and he got to swing while I broke beans. Then he napped and I put sweet corn up in the freezer. That may all sound like work but I really enjoy freezing corn and beans. Tonight my younger aunt and her family came over to eat with me and Timmy. We had a lot of fun. Isaiah got to play with Kylee. He had fun but was fussy towards the end. He is asleep now and we are getting ready to start his antibiotics then asleep for all of us!

Isaiah has had a pretty good day. He has slept a lot today and after waking up from his first nap he has been a little fussy. We will see what tomorrow brings. Sometimes he is fine and the next he wants his bed and sometimes he doesn't know what he wants! he will get back in to it all just going to be a little while. Yesterday his temp got up to 99.9 but I caught it and got it back down. He woke this morning with it at 97.4 :)

That is about it. We have a busy rest of the week with company! Saturday my family is having a party for me so that will be fun.....birthdays are really big deals in my family!!!!

I will update tomorrow night with how Isaiah is. Still doing well jsut trying to get adjusted.

Nicki

Tuesday, July 15, 2008 10:56 AM CDT

Isaiah's night went fine. He woke up around 4:30 fussing but besides that he slept well. We had to give some Motrin and then he rested well and didn't roll around like he was uncomfortable.

The IV antibiotics are going fine. I really appreciate these balls so that I don't have to deal with a pump. We have him on a better schedule for home now. We can finish his last at 11:30 and not have to start his next until right before 6:00am. This will help so that we aren't up all hours of the ngiht doing them. We can just get up with his normal stuff and not the others.

This morning he has been a little fussy so I turned the TV on so he would have noise. He did much better with the back ground noise. He decided he could do his little scoot around the living room again and we even went outside to swing!!!!! How much fun for one little boy! While he naps today I am going to clean his wagon up and get it ready for an evening ride!

All in all Isaiah is doing fine. He is adjusting but that will take time. He is atleast in his bed right now trying to go to sleep without screaming because he is by himself.

I will update tonight or in the morning. Hopefully there isn't much to update except some boring home stuff!!!!!

Nicki

Monday, July 14, 2008 9:14 PM CDT

We are home!!!!!

So excited to be here although I think Isaiah may have different feeling about it. He was really excited at first but before bed he had trouble. He didn't want to be alone at all and he did not want to go to sleep in his own bed. This is very different for him. Usually he falls right back into the swing of things. It seems like the hospital is just his safe spot and he misses it. He probably wants all of the attention from the nurses, not that he gets any attention at all!

He laughed the whole way home in his car seat. We didn't go out to play with the animals today. There was a lot to do. We will do that in the morning. I will probably take him to swing before it gets to hot!

The IV antibiotics are going fine. We don't have a pump like we did last time. There are these little balls with tubing coming out. There is a valve that controls how quickly it comes out and that is how he gets his meds. It is really cool the way it works. It can lay right beside him and doesn't have to hang! This is sooooo much easier than the pump we did the time before. So we give the antibiotics every 8 hours. We are trying to move it to where it will be on a better schedule for sleeping purposes.

Can I tell you how nice it was to cook in my own kitchen tonight. Before we got home Isaiah and I made a quick little stop by the Amish for fresh vegetables. HMMMM fresh corn, green beans, squash and the list goes on. Then I couldn't help but to start cooking, now I am worn out but Timmy loved the meal!!! Now I am back to putting things away and boy do you accumulate in 34 days!!!

Well I am going to get off to finishing up. Isaiah is finally asleep and hooked to all of his things so he will be good until IV time. Then off to bed for me when it is done! I will update sometime tomorrow with how the day is going. Timmy is going to work tomorrow so it will be me and the little guy!!!!

Nicki

Monday, July 14, 2008 7:36 AM CDT

Taking a few minutes to update before I take my things out to the car. I am so excited to be going home today and also a little nervous. HOnestly a few weeks ago it was hard to think of this day and that we would all go home together, Praises for that. Isaiah still has a long road and the real test starts after the meds come off but right now I am focusing on home. Keep praying for his fevers to stay away and for the bugs to be gone.

Last night Isaiah got to roll around the unit in his stroller to go tell all of the nurses bye. THey were all so very sweet to him! A huge thanks to all of the Vanderbilt staff for once again taking wonderful care of my little one.

Well I am going to take my bag and pillow out to the van and get ready to see him at 8:00. I will update tonight from home. If it is late do not worry. We have several things going on....we have to get the IV pump and drugs, be home in time for the nurse to get there to show us how to use the pump, get on our routine of giving the meds, get to the pharmacy in BG and get his oral meds and the list goes on. SOOOOO if it is later tonight before I update know all is well!

Nicki

Sunday, July 13, 2008 11:01 PM CDT

TOday has been a good for Isaiah. His highest temp has been 99.9. The plan is still to go home tomorrow. All is set and ready to go.

I am going to bed tonight but will update in the morning.

Saturday, July 12, 2008 4:21 PM CDT

Sorry for the lack of an update. I should have put on here what was going on. You all may not believe this and may have to read twice but TImmy and I left Isaiah for the first time over night last night to go have fun! We went out for our anniversary (a little early). We were going to go tomorrow night but since we go home Monday we didn't want to be rushed. So we have been gone from him for 24 hours. Maybe one of the hardest things we have done but boy did we enjoy it when we were out. We went and checked in to our hotel (just down the road not far:) then came back once we got ready. The Kaylen Foundation had a limo waiting here at the hospital and they sent us to eat at a very nice restraunt called Stony River. They were amazing at the service and making us feel special. The Kaylen foundation and Stony River provide this for families who have been here for a long time. They were kind enough to work it out for our anniversary meal and night out. THen we were off to the hotel to stay. It was so nice. We stayed at the Hermitage Hotel and they were amazing to us. A huge thanks to the plastic surgery nurse practicioners for the wonderful flowers and I am thinking they made sure to let the hotel know it was our anniversary. The one thing I was wanting was a big bubble bath to read my book in and relax. Well the hotel did it for me along with water, candle, roses and everything (usually they charge to do it). Wow did I feel like a princess!!!!! TImmy and I had a wonderful night out and had a large comfy bed to sleep in and slept in late with no alarms. We still woke up some just out of habit but how nice it was to know he was well taken care of and we could rest! A huge thanks to Dr. Madhu, my sister and her husband and my mom for helping to watch Isaiah. Even though he was in the PCCU I couldn't have left him alone. Then they made sure nurses that knew him had him. Everything worked out just perfect and Timmy and I were able to have the time of our life. We were able just to be us and love time with each other!!!!

So Mr. Isaiah didn't miss mommy and daddy at all. He was probably ready to be without us for a little bit. He has had a little of a fever over night and today. No higher than 100.6 over night and 100.2 today. He is getting tylenol and motrin and keeping it around 99-100. This is probably just him fighting things. He is finally smiling today and might I add blowing kisses. His incisions seems to be bothering him some but they will until they heal. I think that is all.

Sorry if anyone got worried about Isaiah I should have updated what was going on yesterday. Timmy will work tomorrow and we should go home Monday morning. I will update more tonight.

Nicki

Friday, July 11, 2008 10:21 AM CDT

Isaiah is sleeping right now. He is running a fever of 102.5 and needs his pain medications. With all of it on board he is comfortable and that is what matters. We are keeping it low key for him. It is common to run a fever after surgery but if he has one after 5:00 tonight, they are going to run more cultures to make sure nothing else is brewing. Hopefully the fever will take care of itself. He is awake for about 15-20 minutes at a time and then he is back asleep again. We will update later tonight.

Thursday, July 10, 2008 9:59 AM CDT

5:30
Isaiah is in his room. They are giving him pain medication. There are several more cuts than what we thought there would be. I'll explain more later. Surgery is behind us and that is what matters.

3:15
Isaiah is out of surgery. They had to put it in a different spot than before due to that being the only place to be able to drain it. He said there was a good flow and it should work fine. The thing we have to watch for is infection and he stressed that twice. I will update later tonight.

Isaiah is in CT right now. It sounds like as soon as he is done they will be taking him straight to surgery. I won't know forsure until it happens.

His pain was really good until about 30 minutes before we went down. He went for 8 hours sleeping then woke and was blowing kisses. His head is very swelled and all he wanted was mommy, daddy and his nurses. He was so sweet to Jennifer. He would look at her and just hold her hand, sweet boy. He is sleeping now so he isn't hurting at the moment. Continue to pray for pain management when this is all done.

I will update shorty.

REMINDER:
Alex Lemonade Stands this weekend (june 12). Here is the link for the page Riley has set up and if you don't live in Bowling Green you can give through the web page. This family is so very special to ours, what a wonderful thing Riley has gotten together. Thanks ahead of time for supporting them!

firstgiving.com/bowlinggreenlemonade

Wednesday, July 9, 2008 2:52 PM CDT

9:04 UPDATE
So they are going to clamp his drain at midnight. They will also turn his feeds off then in preparation for a big day tomorrow.

At 9:00 they will take him down for a special CT. They will have an anesthesia team there to sedate him. They have glued little circles on his head that they can see on the CT. They can then use them to guide where they want to mark the head to put the shunt in. This is a technique they use a lot with kids with tumors and stuff so they can know exactly where to go and not go. They are operating on one delicate little head tomorrow and want to be sure they are doing it just right. Then Isaiah will come back up here for a little while and then to the OR around 12:30 to 1:00. The surgery should probably last about an hour or two. Usually it is quick but they are bringing in general surgery to guide the drain into the abdominal cavity.

He is happy and smiling at the moment!!! He is so funny when he is sleepy. He just laughs and acts goofy.....his daddy could tell you where he gets that from.

I will update in the morning after CT.

Praying for success tomorrow and no suprises.

Nicki

THey have not clamped his drain yet. We are just waiting for neuro to come in and make the decision on when. When they do we will come up with some creative ways to keep him occupied!!!

He seems to be feeling pretty good today. HIs temp is right at 99 but has been in the low 98 range today. He slept for 4 hours earlier and seems to be feeling better since his long nap. Right now he is watching his new video that Harrison sent to him. THanks Harrison he loves all of his treats he gets from you!

It looks like we will be taking him off of antibiotics at different times throughout the next 4 weeks and then taking him off of the final drugs at the end. There are some serious side effects to some of them and he is pushing the long term mark on a few. So he will go home on 4 then take 2 off after 2 weeks then after the full 4 weeks take the other 2 off. Yes, for those who have asked me one of his drugs is the one the FDA just put a new warning out on but I think he will stay on this one. THey are looking at it one more time but they are thinking it will be fine to keep him on.

That is all we have going on today. Just sitting here on this rainy day! I will update more later this evening when we know more.

Nicki

Tuesday, July 8, 2008 10:34 PM CDT

Nothing new to report today.

Isaiah's temp is about the same and running a little high. Every once and awhile it will try to come down to normal range. He is sleeping right now. He has played a lot today but also slept a lot. Overall his day has been good!

There has been discussion today on his antibiotics and how could they give him fewer to protect his kidneys and hearing. I will update more on that tomorrow when I am certain of the plan on it.

Please be praying for tomorrow as they clamp his drain. He has the potential to really hurt from it. I pray he won't but if he does I know they will give him meds quickly.

Well it is late and I am really tired. I went to BG today to get several things done so Isaiah and daddy had a day together. I will update when I know more about his antibiotics and when they are planning to clamp the drain. Thanks for the continued support.

Nicki

Monday, July 7, 2008 4:22 PM CDT

Today has been a pretty good day for Isaiah. He slept so much over the weekend and now he seems to not want to sleep a whole lot. He is pretty grumpy but maybe it is due to the fact he needs a nap!

His temp is still elevated a little today. The plan for getting the shunt is that he will have the EVD clamped on Wed. If you will remember last time he had it clamped he was miserable. Then they will run a CT scan on Thursday morning. After that they will determine where to put the shunt and place it in the afternoon. They are calling general surgery in to help with the placement. Due to the surgeries in his abdominal area and the port in place they need help placing it. The line is in his head but then there is a drain that runs under the skin into the abdominal cavity for his body to reabsorb the CSF fluid. So that is the plan for it all.

I will update tonight before bed.

Nicki

Saturday, July 5, 2008 9:40 PM CDT

Isaiah has had a pretty good day. He has slept a lot again today. His temp is still low grade 99-100.

He has been playing a lot today when he is awake. He gets a little aggitated at times. Hopefully tomorrow he will have even a better day than today.

That is it for the day. TImmy is going to work tomorrow and then has lots of errands to run on Monday. This week will be pretty busy with trying to get ready for home. We have lots of details to work out this week with the antibiotics, insurance and all of that. THen he has surgery and the healing from that.

Well I am going to finish getting him to sleep. I will update tomorrow.

Nicki

Friday, July 4, 2008 10:06 PM CDT

Happy Fourth of July!!!!!!

First of all a huge thank you to all the men and women who serve our country so that we can celebrate our independence.

So today Timmy and I left together to go home for the day. A huge thanks to my mom for staying with Isaiah. We had several small things at the farm that needed to be done.....like the plank fence that my horses messed up and I have a husband who isn't a fan of the horses anyways :) We did have a nice time. This was my first day back after 23 days and the break was needed. I think Isaiah had a blast with his grandma and needed a break from mommy and daddy also!!!!

TOnight we got back and got Isaiah ready for fireworks. We had offical doctors orders to take him out of the room to watch them. THe best place we found was from the stairwell. He loved it. He clapped and told everyone involved thank you. He didn't want to come back to the bed which was sad to watch but he is resting now. A huge thanks to the Vanderbilt staff for making it possible for him to have a wonderful 4th. And a huge thanks to a very special nurse for his outfit for the day!!!!

THat is it for the day. He slept a lot today as he did yesterday. His temp is still staying around 99 to 100. Thinking positive and going with that. Just ready to get a little boy home so we can do little boy things and have a huge cookout for him!!!!!!

Nicki

Thursday, July 3, 2008 10:34 AM CDT

9:00 UPDATE
Isaiah had a 4 hour nap today so he is playing still! He has needed some Motrin tonight. He just seems like his head is hurting.

So here is a little longer update on the meeting. Sorry I was so short and brief over it earlier I just didn't have much time.

It started out with the attending on the floor confirming to everyone he wa sglad we had 2 negative cultures to look at. He said when he scheduled the meeting he didn't expect it to go in the way they were able to conduct it. To be honest when we talked to him on Tuesday the options were to go home with Hospice or to go to a step down unit or to stay here and see what happened. Having 2 negatives made it a much happier meeting with less for TImmy and I to have to decide. The attending expressed how pleased he was but how concerning things still are. Then it went on to Dr. Kelly who finally stated how sick Isaiah has been and how critical these next few months are. He answered questions for the team on how many more surgeries he thinks Isaiah will need from him and how fragile his little head is. It was nice to actually hear his long term plans and the compassion he put into talking about him. He went on to confirm that he had also spoken to Dr. Tulipan (who couldn't be there) and confirmed what the attending had said. Dr. Kelly will not fix the palate until we are several months out of the "could get the bugs back phase". Then we will move on to looking at having the trach removed.

So Dr. Tulipans plan is like I said to place the shunt on Thursday as long as Isaiah still has negatives. If there is a positive then he will go back to the OR and put another new EVD drain in. If after that point he was to get another positive then they would more than likely go on with the new shunt to keep him comfortable through the end for him. We all pray it stays negative and non of this has to happen but atleast there is a plan just incase. When we talked with Dr. Tulipan today he stressed the fact that after we stopped the antibiotics will be the time to tell if the infection will start again. If that were to happen that means it is being harvested somewhere that antibiotics will not help. Hopefully no but again these are the facts.

Dr. Huss talked with the whole team about having his eye opened back up and they want to wait on that again afraid to do anything with him at this fragile of a state. She also talked with when to take blood levels, whether we could be trained to change his port needle, how long to stay on the antibiotics, what test to run to be sure he can come off. All of the little detailed things. She will be the one that has to manage all of Isaiah's case so it was so important for her to be there.

So the earliest we will go home is the 14th and that is if all goes perfect. Like I said earlier we want everyone to know we are so hopeful and feel that we got some very positive information but to be realistic Isaiah still has a long road ahead. This road will more than likely have many bumps in it. If he gets any type of fever or anything then he will be right back here. The thing that is the hardest is that it will be so long before we know if he is over all of the bugs. We will be patient and trust and know that in the end it isn't our plan. We are getting what we wanted for Isaiah and we are getting to go home and it is nothing shy of a miracle it is with the intention that he will get better. Earlier in the week we were not headed down that road. Continue to pray for his healing and for our patience with this nasty infection. HOpe this explains the meeting in a little more detail and sorry I didn't have more time earlier in the day. I just wanted to be sure everyone understands it all. I will update in the morning and then again tomorrow night.

Nicki

4:00 UPDATE
SO the meeting is over.

With Isaiah having 2 negative cultures they are going to go on the fact that the shunt can be replaced. They have him on the OR board for next Thursday. We will then stay through tthat weekend and go home on 4 weeks of IV antibiotics then. After that is when the real test will happen. Will Isaiah stay meningitis free or will it come back as soon as the antibiotics are done. That is only something time will tell. The real thought here is that we have to continue to pray that he stays infection free with no bugs. He still has an elevated white blood cell count in his CSF and we have to be sure the bone is clear. THere is no way to know that until the antibiotics are done. Will it reharvest and start this whole cycle again who knows and they were honest to say that.

Yes TImmy and I are very hopeful this will be the end of it but the reality is we do not know and have to be realistic. The meeting went great and I feel it was a huge accomplishment. The hard decisions were out of our hands and we didn't have to make them! Praise God for that. We will update more tonight. Thank you for so much support today,,,,,wow did we need it!

Nicki

Well Isaiah is already down for his nap so I have a second. He is feeling good this morning. Lots of smiles and his temp is doing better about staying under control. He still grabs at his head but it doesn't seem to be hurting as bad. He slept through the night with no problems so he got good rest.

It looks like we may hae 2 negative cultures in a row. This would be a first. He has had a couple but never in a row. His white blood cell count in the CSF is down but not bug free. Now we just need a few more negatives so that they can start thinking they have it under control. Yes we are thrilled with the results but have to be realistic in the facts that this does not mean he is bug free and what about if he gets positives now and what would that mean. At least we will go into the conference with a better look at where he is with cultures. Now maybe there will be a more postive plan than what it was looking like. With no doubt still a very long road for him.

I will update with what all is talked about in the care conference. Still praying for His guidance in it and correct decisions to be made.

Will update soon......
Nicki

Wednesday, July 2, 2008 11:29 AM CDT

9:22 UPDATE
Well everyone made rounds today but nothing has changed.

We go into Isaiah's care conference at 2:00 tomorrow and I will update when it is done. Hopefully there everyone will get a good long plan for Isaiah. We sure do need one.

TOday around 4:00 he seemed to start feeling bette ragain. Right now he is sitting here playing. They drew his fluid today around the same 5:00 time. The problem with that is that it will be Friday before we know anythign forsure on that culture. THe stain didn't come back with anything but only 4 of them have. When we talked to Dr. Tulipan today he said he could hae negative cultures and then the pockets could move again then see positives. This is all confusing but we will learn more tomorrow. At this point they said we have to assume it is in the bone. THis will also play into decisions. His pediatrician will be able to be with us, she is on vacation but bless her soul she is coming in on her day off.

I will update in the morning with how he is feeling. Praying for things to be obvious in all of Isaiah's blood work and things. They have started trying to give less of some antibiotics due to what it could do to organs.

Nicki

Same old thing around here today. Isaiah's fever is down right now. Last night it went up to 101.8 but came down pretty much on its own. He is sleeping right now.

ID came by and said that the culture from right after the EVD placement didn't show anything so far. Since neuro didn't come in until so late yesterday afternoon we have to wait until tomorrow morning to really know anything forsure on it.

His aggitation level is still the same. He overall just doesn't really feel well. He really wants to play with you and he still is blowing some kisses and things but he gets worn out quickly.

As more docs come in I will update more. THat is it for right now.

Nicki

Tuesday, July 1, 2008 9:34 AM CDT

8:53 UPDATE
When ID came in today they said about the same thing. Keep looking for negative cultures and hope for the best.

They finally drew CSF this afternoon around 5:45. THere is no bacteria in it so we will see. It will be Thursday morning before we know the results since it was so late.

He still does not feel well. His temp is up to about 100.8. This is a little concerning. I will update in the morning.

Today is a new day and a new month so hopefully we can start it off correctly.

Yesterday mornings culture showed bugs then they replaced the EVD and drew new ones. They aren't growing yet but that was from later in the afternoon. They only check CSF cultures once a day so we will see about it tomorrow morning. Maybe the EVD drain changing will help, it can't hurt.

Isaiah is up this morning and playing. He slept last night. His fever started coming down into the night so it was a post op temp. He seems a little uncomfortable today but he is happy.

So we got some sleep last night and I will update on yesterday. Yesterday Timmy or I neither one felt like answering questions or talking about all of it. Here is the plan. We have a new attending this week and he wants to have a care conference for Isaiah. They typically do this when things stay the same for some time and they need a plan and need everyone to sit in one room and talk. So Dr. Kelly(plastics), Dr.Tulipan(neurosurgery), Infectious Disease, Dr. Huss (pediatrician) will all be there. There will also be people from this unit. What they will decide then is how to proceed with Isaiah's care. There are a lot of options at this moment. WHen we decide on which one is best suited for him I will let everyone know. There are several and there is no reason to list them all since some may not even be the answer. Please pray for us for Thursday. It will be an emotional time for both of us as we sit with all of his doctors and try as parents to speak for Isaiah. The best thing would be if we get negative cultures between now and then and the decision is clear. THis may or may not be and that is ok also, we will pray for God's will in Isaiah's life.

Infectious disease does still have maybe a couple options but they are all contiversal on whether you use them on children, how well they work and all that. Some can be very effective or very fatal. Neuro has done all they can do and both of the surgeons here at Vandy feel the same way from that stand point. Dr. Kelly thinks TImmy and I need a few nights away which was kind of a random thought but atleast made us laugh!

So this is where we are at. We will keep on keeping on and try not to let things get to us like it did yesterday. Some days you handle things better than other days and yesterday was just a bad day. New day today though!

THanks for all of your support and understanding. Oh and our phones are crazy acting right now. They kind of just shut off and do silly things so always leave a message and we will try to get back to you!

Nicki

Monday, June 30, 2008 8:12 AM CDT

8:12
Isaiah is running the normal post op temp. He is still sleeping which doesn't usually happen but he is responding.

We will be having a care conference on Thursday. I will update more tomorrow or the next day on that.

It has been a very long day. THings have gone from crazy to crazier. I will explain more later. Isaiah is fine and the placement was successful. We all need a good nights rest and will give more details then.

4:30 update
The procedure went fine. He now has a new EVD (drain out of the head). They pulled a culture from it after they placed it to see if it will make a difference. We won't know anything until tomorrow on that. He is asleep now with a temp of 101.5. One of us will update later, we just wanted everyone to know that the procedure went well.

8:18 UPDATE
He will go to the OR arond 1:00. Yesterday's culture is positive.

We are awaiting news on whether he will go to the OR or not. It is kind of up in the air right now. The issue is they are saying that they think Saturdays culture may be negative but there is a positive stain from yesterday so does it mean he doesn't need the drain replaced or does he still need that done. I will update here in a little while once we know something. Isaiah woke happy so that is important. He had to have tylenol and motrin throughout the night and woke up some with his head hurting.

Will update soon.

Nicki

Sunday, June 29, 2008 11:59 AM CDT

9:16 UPDATE
Well Isaiah is fast asleep right now. Kind of a suprise, he has been staying up until nearly 11:00.

He has been a little sleepier this afternoon and when we came in from shift change he was very upset. He went on to sleep. I am waiting on the nurse to get his motrin but hoping that will make him not wake up screaming with his head hurting like last night. So that is that. Tomorrow they will take him to the OR again and this time replace his drain with a new one. THe same hole will be used and it will be placed in the same spot so hopefully it will work as well.

We will update in the morning. GOing to go and try to get some sleep right now.

2:45 UPDATE
The stain has come back positive already for today. Isaiah is sleeping right now. He has worn himself out and started not feeling very well. we will update tonight.

ID has been in. So far nothing has grown on yesterdays culture. WIth it being the weekend neuro isn't coming in at a very good time so it hasn't been in the lab for a full 24 hours yet. Even if this one doesn't grow anything they said not to get excited until after 2 negative cultures. The fluid from yesterday has to sit for several days before they call it negative. This could be a good sign but by no means does this mean Isaiah is ready for a shunt and home antibiotics. Since Isaiah has had a negative then it seems to grow faster we will take their word and not get excited until they can say it is gone.

I will update later if we hear anything on todays. THey just left from drawing fluid from today.

Nicki

Saturday, June 28, 2008 11:08 AM CDT

9:20 UPDATE
Isaiah has had a pretty good day. He has been much more cranky today than he was yesterday.

The stain did not come back with bacteria today so we will have to see what the culture shows. The culture is what has been showing most of the infection it has just been these past two days with the stain. It will probably be late morning before we know anything.

Isaiah has a new pair of monkey PJ's on thanks to his great grandma and mommy had to get the socks to match! He is looking good in his pj's playing!

We will update tomorrow with any news and how he is feeling.

11:00 update
Well not much has changed around here. ID just left and said that the cultures are still positive. Isaiah is keeping his temp around 99.5. That's not too bad but definitely hotter than his normal 97 to 97.5. He woke up in a good mood this morning but as the morning wore on, he became a little more cranky and is now asleep. He occasionally rubs his head to tell us that he still has a headache. The plan is to still replace the EVD Monday morning if the cultures are still positive. Most everybody thinks they will be. It will be a very quick procedure and low risk so why not at least try it. If after replacing the drain the cultures are still positive, there is a possibility of them injecting antibiotic into the CSF itself. The only problem with that is knowing exactly what antibiotic to use since the ones he is on have an excellent capability to transfer from blood to CSF. We will cross that bridge if we have to. We will update later on this afternoon or tonight.

Friday, June 27, 2008 10:21 AM CDT

10:00 pm update
Isaiah has been the happiest little thing today. He has had his moments but overall he has done great. His temp is hanging around 99.5 still. He either looks good and has a temp or his temp is 97 (normal) and he looks awful.

So that is where we stand. Everything is still the same with all of the plans. This weekend we will just be getting results and holding out until Monday. We will update twice a day this weekend. We are just trying to keep him happy, he doesn't like it that he has to lay all of the time.

Again thank you for all of your support. It helps our days go by to read all of the entries. Until the morning (after ID comes in)

Nicki

1:30 update
All the doctors have made their rounds. His cell counts have risen some in the past two days. Now the plan is to definitely replace the drain on Monday if the cultures are positive. Neurosurgery doesn't think it will help but he said he would be happy to be proven wrong. Isaiah is acting good right now. He is playing with Nicki and has been listening to "his Taylor" on youtube. Hopefully he will continue to feel good this afternoon. You just never know right now, one minute he feels good and the next he acts like he doesn't. One of us will update later today.

10:20 update
The culture from yesterday is definitely positive. The one they drew this morning immediately showed up on the stain so more than likely, it is positive also. We won't know the actual counts until the ID docs come in later today. Isaiah slept very well last night. He actually slept for about 12 hours. His temp hung around 99.5 to 100 most of the night. He is now taking his morning nap. We will update later after ID comes in.

Thursday, June 26, 2008 9:35 AM CDT

9:30 update
Isaiah is asleep now. He was asleep at 8:00 when we got back from shift change. His temp had risen to around 100 but it has come back down now. The nurse said before he went to sleep, he was rubbing his head and crying. She was going to give him some pain medicine but before she got it, he went to sleep. Hopefully he can get some much needed rest tonight to fight this infection. Infectious disease will probably be in before 10 in the morning and we will let you know what they say. Sweet Dreams.

5:00 update
Isaiah finally took a good nap after he had to have pain medicine this afternoon. He is awake now and playing for the moment. He still gets aggitated very easily and it is obvious he still feels terrible. Neurosurgery came by and said if the cultures are not negative by Monday, they will consider taking the drain out and replacing it with another one. They really don't think this will make a difference in the infection but, infectious disease wants them to try it. ID said that is the last thing they can think of to do other than pray for the antibiotics to start to work. He is now on 5 very powerful antibiotics. It is just a little confusing at the moment with one doctor saying he thinks he is getting better and several more saying things should have already gotten better. We are very anxious for the actual culture numbers to be read in the morning to have a definite answer as to whether or not the bacteria counts have increased as everyone thinks they probably have since they showed up on the stain this morning. I think I will take off work tomorrow so I can be here. We are going to enjoy time together this evening and hope for more definitive answers tomorrow. One of us will update before bed with how the evening went.

11:40
Wish I had something good to report, well Isaiah is reaching out of the bed and trying to help me type! ID just left. They have been doing the stain everyday. The fact that it has not shown up until today is not a good sign. The new antibiotic has not had a chance to work so we will see. They said they are in a rock and a hard place. He does not seem to be responding to antibiotics, but it is not resistant. It doesn't appear to be getting where it needs to be. When they get todays actual cultures tomorow they will know more about the actual numbers. At that point we will know if it is forsure getting worse. I will continue to update through out the day as we know more. Isaiah seems to feel a little worse today. Thanks for the support.

10:08
Isaiah's stain this morning is already showing the bacteria. What they do is put some of the sample on a stain then they put it in a dish to grow. His stains have been fine but this morning the infection was showing up in it. I think it has not done that since the Friday we were admitted. We don't know what this means and are not taking it for just a positive culture until we hear from Infectious Disease (ID). When more docs come in I will update more. Waiting on all of them to round.

We already have a positive culture this morning. Not sure if it is from yesterdays fluid or if they have already gotten this mornings back. I will update when we know more. He is really pulling at the back of his head today. Still smiling though!

Update when we know more.

Nicki

Wednesday, June 25, 2008 9:01 AM CDT

6:30
Only have a few minutes before shift change.

Neurosurgery came in and said there is nothing surgical that can be done.

Infectious disease came in. They are adding one more antibiotic. There is not research that points to it helping with meningitis but it is the only other drug they can think of that would help.

Dr. Kelly came in. He said that he would continue treatment with antibiotics at this time. He doesn't feel that we are yet at a point to pull him off of them.

So that is where we are. I think everyone involved in Isaiah's case agrees that we should continue treatment with one additional drug and see what the cultures continues to show. If in a few days to a week there are not multiple negative cultures then we will have to look to see what to do then. THat is how the afternoon has unfolded. So we will wait and be patient to see what happens from here. Thank you for your support.

2:30 Update:
So we have some results. Not what we want to hear but here they are. Basically the guy reading the CT couldn't believe Isaiah was still functioning and conscious. He figured by looking at the CT he would basically be laying there. There is a lot of fluid in different spots. There is nothing neurosurgery can do to drain anything off of Isaiah's head. Isaiah has a very unique anatomy and that is also part of the problem with his head not all the spots of fluid connect to the next.

Neurosurgery says to continue treatment with antibiotics and they still think he may get better. The PCCU docs want whatever Timmy and I want. They just want everyone to be on the same page and communicating and to keep Isaiah's best interest and quality of life in mind. ID came in and said they would be back but I haven't seen them so I don't know what to think.

Timmy is back now so we are just waiting together to talk with people. It is important for people to know Isaiah is stable for the moment and enjoying playing. He is laughing and blowing kisses. In the big picture that is really all that matters to us. We will update if we find anything else out today. I ask that you pray for God's will in this and that everyone be accepting of that. HE is cradling Isaiah and that is what makes this bearable.

11:18
They are trying to decide what to do with the CT results. So here is how it is. They are waiting on neurosurgery which is in surgery right now. Isaiah has lots of pockets of fluid in his head. There are several that are in between the dura and the skin and else where. The problem is that they could be harvesting this infection. I don't know anymore than that. Once I know more I will update. THere is not a plan right now but the doctors are trying hard. Some things even doctors don't know and they are trying to see what is best.

Timmy will be here later. right now Isaiah is trying to go back to sleep. He slept long enough for me to run down and grab a sandwich which was better than yesterday. I just think he feels so bad . His temp is hanging around 99-100 and not going to his normal 97. He did have some happy moments this morning.

Well Isaiah is officially one week post op and still has bugs. Yesterdays culture showed growth already this morning. Now we have to wait for the CT results. Docs hae looked to see if there is anything obvious and dont see anything. Neuro will read it and ID will start making some decisions. THe whole waiting game is what is so hard.

I will update later once we know anything. Timmy is at the farm getting things done but should be here later. Thanks for all your prayers and encouraging words. We are just in a waiting game it seems right now.

Nicki

Tuesday, June 24, 2008 9:10 AM CDT

5:18
Isaiah will be oging down for CT soon. Infectious disease came in and said he had to go on and have the CT and make sure the bugs aren't hiding anywhere else. I am going to get back to him now. Wanted to share that. He s very aggitated today. I will update tonight once he goes to bed.

e have some positives for the day and some not so positives. Isaiah is spunky as ever so that is good. His temp has been anywhere from normal to 100 which isn't the end of the world. THe bad news is that bugs did grow in his CSF from yesterdays culture. The good news is that we had one day without growth. Infectious disease will be back later but they don't really have an explanation why it grew from yesterdays culture and not from Sundays. As I said yesterday with it not growing yesterday it didn't mean he was meningitis free. This is just another roller coaster we will have to deal with. HOpefully todays will nto grow by in the morning but we will just have to wait. There is a plan here and we must be patient in seeing how it will play out.

He is ery active this morning and Timmy is working so gotta go.

Monday, June 23, 2008 9:08 AM CDT

8:30 UPDATE
So this is it for the night. Isaiah has had a good evening. He is more than a little grumpy at the moment. He is ready for bed! HIs temp is hanging around 100. HOpefully it will not go more than that over night. Still no bugs growing in the CSF so hopefully we are on our way to a negative culture.

We have had Isaiah up a lot today trying to help him get his strength back. He can only do this for short periods because the drain has to be clamped while he sits up.

Tomorrow Dr. Cofer is going to run a bronch in the morning. THis is just to check his airway. This is her last week at Vandy before she heads to the Mayo clinic. Boy will we miss this remarkable doctor. We really want her to run the bronch before she leaves so she can let us know what the airway looks like as far as taking the trach out at a later date. This is still several months down the road. Isaiah has lots of healing before that can happen. I will update in the morning after that happens. Hopefully I can report that his airways look amazing and capping the trach is possible! We will have to see.

4:00
Still no bugs growing. His temp is up a little this afternoon. Just in the 99 range so that isn't to bad.

All the docs except neuro have been in and are still on with the same plan. I will update tonight or later if anything changes.

Isaiah is starting the day with a normal temp. The other good news is that nothing has grown yet from yesterdays culture. It can not be called a negative culture until 72 hours but his have been growing out in like 12-14. Even if it grows later I would think that means it is not as strong.

They are going to hold off on the CT for right now. If he gets another positive culture I am sure they will do it. THey need 3 negative cultures before putting the shunt back in. I am going to try to have them open his eyes up when the shunt is placed. THen there would be one surgery and 2 things accomplished.

So that is where we are today. Doctors will continue to come in throughout the day and get game plans together. It is wonderful news that nothing has grown yet so after 72 hours we will see if it is a negative culture or if it still has some bugs. We put his bug PJ's on him yesterday and told him his bugs in his head could jump on his PJ's and we would rinse them out!!!!!

I will update later in the day.

Nicki

Sunday, June 22, 2008 8:15 AM CDT

4:50 UPDATE
Well dada is back. We have given Isaiah a good bath and changed his trach. He has new bed sheets and should be all tucked in for later tonight!

Infectious disease has been in. THere is still growth in his CSF. If there continues to be tomorrow then they will do a CT with contrast either Monday or Tuesday. THey may want to wait until they get Monday's cultures back. From what I understand the CT would show where the infection would be hiding. THere is still a chance he has cleared it and we just don't know it yet. After having a normal temp this morning his temp is up around 99-100 again. He did stay in his 97 range for a little while.

I think that is all to report. Isaiah and I had a lot of play time just the two of us earlier. Now Timmy is back and we are looking forward to spending the evening together before a hectic day starts tomorrow. ALl the attendings will be back and coming up with a game plan for the week. Pray for them tonight as they come in tomorrow.

I will update tonight if anything changes if not in the morning. I want to get back to my Sunday afternoon with my boys.

Nicki

Mr. Isaiah is still sleeping this morning so I have a little time to update first thing. Good news is that for a couple hours last night his temp was perfectly normal. It did decided to go up to about 101 but not 103 like yesterday. Kind of odd for him to get his normal temp at night but I am not complaining!!!

No news yet this morning on the CSF cultures from yesterday.

He had a wonderful night last night and slept the whole night through. For him to still be asleep now is amazing in itself. Timmy and I tease him all the time and tell him when he gets older we are going to drop him off to milk at the Westbrooks dairy as early as he likes to get up!!!

I will update later after the doctors have all rounded.

Nicki

Saturday, June 21, 2008 1:19 PM CDT

Isaiah continues to have a fever today. It is higher than it was yesterday and started spiking to 103 over night again.

He is starting to show some signs of improvement in his lab work but there is still infection in the CSF. They said it has to clear by Monday or Tuesday or they will have to look for other places the infection is coming from. Praying that there are no bugs in the CSF Monday.

That is all to report right now. Isaiah feels pretty rotten today. TImmy is working today but I have had family here with me. He will be gone most of the day tomorrow but back with us tomorrow night.

I will update later with any new info.

Nicki

Friday, June 20, 2008 8:42 AM CDT

Friday night 5:30 update:
Isaiah is in alot better mood this afternoon. He was extrememly aggitated this morning and wasn't feeling very well. He still is keeping a continous fever but the infectious disease doctors said he probably will until all of the bacteria is dead. They are hopeful he will be alot better by Monday. They had first said 48 hours after surgery but now that has stretched to 5 days. There is still bacteria growing every day in the cultures but it seems that there may be a little less than before. Hopefully this weekend will be uneventful. Once again we ask that when you pray for Isaiah to please pray for all of the other children in the PICU. There are so many sick kids and without mentioning anything without permission I know there alot of families that could desperately use some prayers sent their way. One of us will update later tonight or first thing in the morning.
Tim

****pics are above from visit yesterday. thanks Melissa for the wonderful photos and catching some happy moments. Isaiah enjoys life no matter what is wrong.

Isaiah continued with a fever last night. He is back to spiking upper 102 until he gets his Tylenol. Last night he spiked it 3 different times and he gets meds every 6 hours. He has gone back to being very aggitated. Acting a lot like he did when we first brought him in. Praying this is just a bump in the road and doesn't mean he is turning the other way.

He is currently very happy holding the TV remote listening to Taylor! I have a video on my phone of it. Maybe I can figure out how to get it on here.

I will update as doctors come in today. He did tolerate his feeds last night.

Thursday, June 19, 2008 8:30 AM CDT

9:06 UPDATE
Isaiah is sleeping and looks about like an angel right now. He looks so peaceful when he sleeps. Lets hope he sleeps well tonight.

He had visitors earlier, no it wasn't Taylor Swift!!!! My friends Melissa and Kyla (Logans mom) came to see him. I told Isaiah he was so lucky for Kyla to be able to walk through the doors of this hospital much less the doors of the PCCU. He loved seeing her. Melissa got some pics of him and I will post them soon! I don't have my camera here but Isaiah occasionally has professional photographers visit so he has pics!!!! Melissa also brought him his own Taylor Swift CD. OH MY can I say he was so excited.

Off to bed for the night.

3:50 UPDATE:
So Isaiah's temp has hung out around 99-100 all day. It is trying to go up some right now but it usually does this time of the day.

Infectious Disease came in and said we would jsut keep the same plan. We will wait on the CSF for in the morning. Everything else has continued to grow but tomorrow will show the real results.

Dr.Kelly came in and had them take his drain out. He didn't like that very much. Dr. Kelly is hopeful that his midface will hold ground and he won't go all the way back to point a. He said in the OR he expected it to drift right in front of their eyes but it didn't and was firmer than they thought it would be. It was over corrected to give him room to grow so maybe it will stay right where he needs it to be. What a blessing that would be then the whole midface wouldn't be totally for a waste. Dr. Kelly is still concerned he has a fever and jsut said it will be a long road.

Dr. Pearson with neurosugery just came in and went ahead and wanted the CSF drawn. He said that although things oculd elevate they are still real results.

Isaiah is very playful this afternoon and has given me several kisses! His latest is blowing them at me with his hand. He has some company coming this afternoon and he will be really excited with who is coming to suprise him! I will update tonight.

Starting today off with a normal temp but this isn't uncommon for him an hour or two out of the day. Last night he kept a low grade temp. Didn't spike high again after the last time at 8:00ish.

Today they are not going to draw a culture from his CSF. Yesterday were terrible results probably from the surgery and they want to give all of the fluid a chance to settle before the next. They will draw it again in the morning. Tomorrows draw should show lots of improvement if he is getting better. His color will look better one second then the next he is as gray as he can be. He has been awake this morning but just seems to be aggitated.

I will update later after all of the specialist have made their rounds. TOday is just a day of sitting and waiting and letting the time pass. Pray for him to stay comfortable and understand this will pass.

Wednesday, June 18, 2008 8:16 AM CDT

9:45
Temp has spiked but is now going back down again. Neurosurgery came by and said that the CSF they drew this morning is already growing. They expected this since he had surgery yesterday. They cultures just seem to be growing so quickly. That is it for now. We will start with new updates in the morning.

5:00
Nothing new this afternoon. Hanging around 99.5 fever atleast it isn't 102 but we are going into the evening. Timmy and I are doing fine. Mom and dad were here today so that helped so we could get out of the room a little together without having to worry about him being alone. He is needing pain medications a lot right now but I think I would also! I will update after shift change tonight. We are now 24 hours post op.

12:30 update
Dr. Kelly (plastics) and Dr. Dennison (infectious disease) just left. From Dr. Kelly's standpoint, Isaiah is stable. He has major swelling in his head. The swelling is alot worse than it has been in the past. This is possibily from the inflamation due to the infection in the head. There were obvious signs of infection during the surgery. Dr. Dennison said he wants to see improvements in the cultures within 48 hours. The culture from yesterday showed that the staph infection is still hanging around. The culture before that didn't show that. There is the possibility that both of the bacterias could have been working together to help protect each other. They explained to us that they will form a shield around them and try to fight off the antibiotics. THis is the reason they are so hard to kill. If things don't change withing 48 hours, some decisions will have to be made about what treatment is possible if any. He is on 4 of the strongest antibiotics available. One of us will update later today with an update.

Well this will start the Wednesday updates.

I wish I could say that 12 hours after surgery a miracle had happened and things were great. It will take more time than that. Isaiah spiked a fever first thing after surgery and that is to be expected. Through out the night he went back to his normal up and down of temp. He is currently at 101.6. Remember when I report temps that he is a 97.5 kid.

Since I started this they hae rounded on him and stuff. They are backing off of his IV seizure meds so pray for the seizures to stay away. They are starting on some vitamin supliments to try and help with bone growth. It may not help but it can't hurt. They are starting his feeds. THey are heading in the right direction. Infectious disease came in and said all we can do now if pray for the antibiotics.

I want to stop talking about Isaiah for a moment and move on to a precious family we have come to know. Little Josiah was admitted 2 days before Isaiah when he had his surgery. Josiah has a muscle disorder. THis was not found out until he came in with what seemed to be respiratory problems. They have had such a long road and little Josiah found final peace this morning. He left the body couldn't help him anymore. Please pray for this precious family. His mother and father, Nina and Marcus, have a long next few days and they have to go back and find a new since of normal with their other little boy. They have been wonderful friends to us and a blessing to have here with us for the time they were here.

Nicki

Tuesday, June 17, 2008 9:51 PM CDT

Wow, what an emotional day we have had. Dr. Kelly removed all of the artificial hardware that was in Isaiah's head. He was not able to place the external fixator due to there not being enough bone to anchor it to. Hopefully his mid face will not shift back to the position before the surgery in April. If so, there could be more complications with his eyes and less room for his brain. Dr. Kelly said he had done all he could to remove any foreign bodies for the bacteria to cling to. Apparently this bug is a hard one to kill and may still be in his system even after this surgery. Most of the doctors are saying that we should start to see signs of improvement in his blood work in 48 hours if things are going to work. If not, that will not lead to anything good. We will cross that bridge if we come to it. They said there was alot of sign of infection so it may be hard to kill. God is making everything happen in his time and we have to learn to accept that. Last night he wouldn't tolerate his feeds so they stopped them at 4:30 this morning. During the ICU rounds this morning, one of the docs was talking to us when her phone rang. We heard her say "actually I am in his room right now and he has been NPO (without feeds) since 4:30." For those that don't know, they like you to be without feeds several hours before any surgery. We know that his feeds needing to be turned off this morning was God getting everything lined up for today. We knew when we heard her say that we would be in the OR today. Dr. Kelly said he couldn't sleep last night and he thought in order for Isaiah to have a chance at all, the hardware had to come out. Once again, that is a sign that God was in control and wasn't going to rest until Dr. Kelly decided on what needed to be done. I know many people had been praying for that man and it definitely shows. Nicki asked him what would he do if his daughter were in this situation and he stressed to us that he would do nothing to Isaiah that he wouldn't do to his daughter. He truly cares about our little boy. One of the ICU docs was telling Nicki how lucky we were that they were able to tap his VP shunt since for the last 2 years they haven't been able to get any CSF out of it. They barely got enough out Thursday to get a positive test that let them know he had meningitis. Had they not got that, he possibily could have been sent home since he only had a fever occasionally. The doctors seem to think that had we gone home without these strong antibiotics that Isaiah probably would have crashed so quickly at home that he possibly could have died. Nicki told the doctor that that wasn't "luck" but God working in Isaiah's life. God has a special plan for my sweet boy and I am sure it will be amazing. I am amazed at how many lives he seems to touch everyday. I just want to be able to tell Isaiah when he is older that Mommy and Daddy did all we could for him and tried to make the best decisions. Please pray for Isaiah as he fights this infection and for us to know some definite answers sooner than later. The unknown is scary. One of us will update tomorrow with how his night was. It should be okay since they have him heavily medicated to prevent breakthrough seizures.]
Tim

Tuesday, June 17, 2008 6:35 PM CDT

Tuesday, June 17, 2008 1:36 PM CDT

6:23 update

This is Ann Kelly, Nicki just called and Isaiah is out of surgery. It took less time thand they expected. Dr. Kelley removed all the hardware from the mid face surgery and nothing else was required. Dr. Kelley said he was not able to tell much but that he did all he could do. Tim or Nicki will update soon.

5:13
No news yet. THey had a little trouble getting the lines in. I will update when they let me know. I am hoping no news is good news.

2:30 update
This Tim. Isaiah has been in the OR about 1 hour now. We haven't heard if they have started yet. Dr. Kelly is going to take the hardware out of his head in hopes that the bacteria is clinging to it. His white blood cell counts in his CSF continue to rise and he is having a fever almost all day. I think that they are all hopeful that this surgery will remove the bacteria, but there is no guarantee. The meningitis could continue to get worse. Isaiah played most of the morning but by 1:00, his fever had shot back up to 103. Dr. Kelly did say that there was the possibility of complications on the table due to Isaiah being so sick. Those complications could include disrupting the infection so much at one time that it overwhelms his body at once and he could die on the table. He is hopeful that they can keep him stable through it all. He is also hopeful that the bone itself hasn't got infected. If it has, some of it may have to be removed. Please pray for Isaiah and the staff caring for him. We know that everything is in God's hands and no matter what happens, it is His ultimate plan. One of us will update when we know something. Thank you for signing our guestbook. Hopefully one day we can show Isaiah the nice things that everyone has written and tell him how much everyone loves him.

1:45 update

This is Nicki's friend Ann Kelly she has asked me to update everyone that Isaiah is going into surgery. Please be in prayer for Isaiah, Timmy, Nicki, and the doctors right now that they all will feel God's hand today and feel a peace that only he can give. Antibiotics have not been effective so Isaiah is having exploratory surgery to try to find the cause behind his high temperature, that he has battled for almost a week now.

Tuesday, June 17, 2008 10:47 AM CDT

OK this morning has been nuts.

I don't want to panic anyone but here are the facts. Dr. Kelly has called up and they have a spot on the operating board for Isaiah this afternoon. It is not a forsure thing and we are just asking that you pray for us to make the right decisions. TImmy and I are together and have just told family to stay put until we call and say come on. We need this time to talk, think and pray for what is best.

We are waiting to talk with Dr. Kelly himself. There are a lot of things to take into consideration here and how to treat or even to treat. We are trying to rush the lab into getting us the numbers we need to help in the decisions. We just want to be confident in what we decide and know it is what is best for Isaiah.

His temp is still everywhere and not stable. He is playing a lot this morning but his color is starting to get bad again. He always does well in the morning.

I will udpate as soon as I know something

Tuesday, June 17, 2008 6:32 PM CDT

Isaiah Montgomery Buchanon

Daily Bible Verse

Make every effort to live in peace with all men and to be holy; without holiness no one will see the Lord.
Hebrews 12:14 (NIV)

Provided by Christ Notes Bible Search

Isaiah Montgomery Buchanon was born on January 11, 2005 at Vanderbilt Hospital. He was born at 7:08 am weighing in at 8lbs and 10 ounces and 21 inches long. At 20 weeks gestation an ultrasound determined that Isaiah's head did not measure correctly. At 27 weeks our journey of testing, ultrasounds, and the unknown began.

When he was born the doctors knew they were correct in their abnormal findings. Isaiah's obvious problems were mitten hands, syndactly of the feet, cleft palate, and his brain was protruding from his skull in the forehead area. After giving his mommy and daddy a chance to hold him, he was rushed to the NICU. On January 12, 2005 a clinical diagnosis determined Isaiah has Aperts Syndrome. He then spent 11 days in the NICU to establish his feeding and wean him down to a low enough oxygen rate he could go home. We then went home with oxygen and numerous other machines. His journey of operations began on April 12, 2005. All of Isaiah's operations have been performed by the staff and surgeons of Vanderbilt Children's Hospital. To date Isaiah has been in the operating room 20 times. The surgeries have varied from minor to very complex. Some trips have been for a simple central line and others have been for craniofacial surgeries and most recently a tracheostomy.

With Isaiah's syndrome come many difficult surgeries. Then with Isaiah being himself come many more complications. Isaiah is developmentally delayed physically and cognitivelly. Things such as sitting, crawling, walking, and speech are a huge obstical for Isaiah. Isaiah has very small airways(which go with his syndrome) which has caused huge issues since birth and eventually he was unsuccessful being pulled from a breathing tube, this caused him to have to have a trach. Isaiah also suffers from severe seizures which seem to come with no prediction. Along with these problems comes a whole list which you can read about in the journal.

Thank you for taking time to check on Isaiah and monitor his progress. As we continue our journey we depend on God to hold Isaiah in his big hands and protect him. Through Him we are given the strength to endure or days. Isaiah is a fighter and has amazing strength. His smile can make a rainy day seem sunny. As he continues with his journey please pray for strength, developmental growth, comfort, a continued wonderful personality and doctors knowledge. May you be blessed as you follow along with us. Please take time to sign our guestbook as we love to read the entries.

Isaiah's first two years of life:

Photo and video editing at onetruemedia.com

A few pictures from our trip to the aquarium back in March when we went with my friend and her two boys!!

6:20 update
This is Ann Kelly, Nicki just called and Isaiah is out of surgery. It took less time thand they expected. Dr. Kelley removed all the hardware from the mid face surgery and nothing else was required. Dr. Kelley said he was not able to tell much but that he did all he could do. Tim or Nicki will update soon.

5:13
No news yet. THey had a little trouble getting the lines in. I will update when they let me know. I am hoping no news is good news.

2:30 update
This Tim. Isaiah has been in the OR about 1 hour now. We haven't heard if they have started yet. Dr. Kelly is going to take the hardware out of his head in hopes that the bacteria is clinging to it. His white blood cell counts in his CSF continue to rise and he is having a fever almost all day. I think that they are all hopeful that this surgery will remove the bacteria, but there is no guarantee. The meningitis could continue to get worse. Isaiah played most of the morning but by 1:00, his fever had shot back up to 103. Dr. Kelly did say that there was the possibility of complications on the table due to Isaiah being so sick. Those complications could include disrupting the infection so much at one time that it overwhelms his body at once and he could die on the table. He is hopeful that they can keep him stable through it all. He is also hopeful that the bone itself hasn't got infected. If it has, some of it may have to be removed. Please pray for Isaiah and the staff caring for him. We know that everything is in God's hands and no matter what happens, it is His ultimate plan. One of us will update when we know something. Thank you for signing our guestbook. Hopefully one day we can show Isaiah the nice things that everyone has written and tell him how much everyone loves him.

1:45 update

This is Nicki's friend Ann Kelly she has asked me to update everyone that Isaiah is going into surgery. Please be in prayer for Isaiah, Timmy, Nicki, and the doctors right now that they all will feel God's hand today and feel a peace that only he can give. Antibiotics have not been effective so Isaiah is having exploratory surgery to try to find the cause behind his high temperature, that he has battled for almost a week now.

Tuesday, June 17, 2008 10:47 AM CDT

OK this morning has been nuts.

I don't want to panic anyone but here are the facts. Dr. Kelly has called up and they have a spot on the operating board for Isaiah this afternoon. It is not a forsure thing and we are just asking that you pray for us to make the right decisions. TImmy and I are together and have just told family to stay put until we call and say come on. We need this time to talk, think and pray for what is best.

We are waiting to talk with Dr. Kelly himself. There are a lot of things to take into consideration here and how to treat or even to treat. We are trying to rush the lab into getting us the numbers we need to help in the decisions. We just want to be confident in what we decide and know it is what is best for Isaiah.

His temp is still everywhere and not stable. He is playing a lot this morning but his color is starting to get bad again. He always does well in the morning.

I will udpate as soon as I know something

Tuesday, June 17, 2008 1:36 PM CDT

5:13
No news yet. THey had a little trouble getting the lines in. I will update when they let me know. I am hoping no news is good news.

2:30 update
This Tim. Isaiah has been in the OR about 1 hour now. We haven't heard if they have started yet. Dr. Kelly is going to take the hardware out of his head in hopes that the bacteria is clinging to it. His white blood cell counts in his CSF continue to rise and he is having a fever almost all day. I think that they are all hopeful that this surgery will remove the bacteria, but there is no guarantee. The meningitis could continue to get worse. Isaiah played most of the morning but by 1:00, his fever had shot back up to 103. Dr. Kelly did say that there was the possibility of complications on the table due to Isaiah being so sick. Those complications could include disrupting the infection so much at one time that it overwhelms his body at once and he could die on the table. He is hopeful that they can keep him stable through it all. He is also hopeful that the bone itself hasn't got infected. If it has, some of it may have to be removed. Please pray for Isaiah and the staff caring for him. We know that everything is in God's hands and no matter what happens, it is His ultimate plan. One of us will update when we know something. Thank you for signing our guestbook. Hopefully one day we can show Isaiah the nice things that everyone has written and tell him how much everyone loves him.

1:45 update

This is Nicki's friend Ann Kelly she has asked me to update everyone that Isaiah is going into surgery. Please be in prayer for Isaiah, Timmy, Nicki, and the doctors right now that they all will feel God's hand today and feel a peace that only he can give. Antibiotics have not been effective so Isaiah is having exploratory surgery to try to find the cause behind his high temperature, that he has battled for almost a week now.

Tuesday, June 17, 2008 10:47 AM CDT

OK this morning has been nuts.

I don't want to panic anyone but here are the facts. Dr. Kelly has called up and they have a spot on the operating board for Isaiah this afternoon. It is not a forsure thing and we are just asking that you pray for us to make the right decisions. TImmy and I are together and have just told family to stay put until we call and say come on. We need this time to talk, think and pray for what is best.

We are waiting to talk with Dr. Kelly himself. There are a lot of things to take into consideration here and how to treat or even to treat. We are trying to rush the lab into getting us the numbers we need to help in the decisions. We just want to be confident in what we decide and know it is what is best for Isaiah.

His temp is still everywhere and not stable. He is playing a lot this morning but his color is starting to get bad again. He always does well in the morning.

I will udpate as soon as I know something.

Tuesday, June 17, 2008 1:41 PM CDT

Isaiah is in surgery. I will explain it all later but honestly don't feel like it right now. GIve me an hour and I will add all of the details. Pray for Dr. Kelly and that he would know what to do.

I will upate in an hour with more info. Thanks for understanding.

Nicki

Tuesday, June 17, 2008 10:47 AM CDT

OK this morning has been nuts.

I don't want to panic anyone but here are the facts. Dr. Kelly has called up and they have a spot on the operating board for Isaiah this afternoon. It is not a forsure thing and we are just asking that you pray for us to make the right decisions. TImmy and I are together and have just told family to stay put until we call and say come on. We need this time to talk, think and pray for what is best.

We are waiting to talk with Dr. Kelly himself. There are a lot of things to take into consideration here and how to treat or even to treat. We are trying to rush the lab into getting us the numbers we need to help in the decisions. We just want to be confident in what we decide and know it is what is best for Isaiah.

His temp is still everywhere and not stable. He is playing a lot this morning but his color is starting to get bad again. He always does well in the morning.

I will udpate as soon as I know something.

Thank you
Nicki

Monday, June 16, 2008 12:06 AM CDT

4:45 UPDATE:
Dr. Kelly has been in. SOrry I haven't updated yet we had to go get a breath of fresh air.

So he is giving him until Wed to see what is going to happen. He said that is as long as he can wait before he will have to make a decision about surgery and if they have to operate it will be on Thursday. He does feel he is strong enough for the operation. He is also concerned about the meningitis getting worse and the fact it could get so bad. If he had to go in he would have to check the hardware, they would need to check the brainstem and also the bone. It could have already attacked many things.

His color looks really bad right now. His temp got low on him earlier and they had to warm him up some. To low of a temp can also be dangerous. So that is about it. Right now it is a waiting game the next couple of days.

Please be praying for the infection to start to go away and for us to accept whatever this week may hold.

Nothing yet from Dr. Kelly. Hopefully while I type he will come in to see Isaiah.

There have been multiple doctors in today. TImmy and I are just trying so hard not to get overwhelmed with all of the information and digest it as it comes.

Neurosurgery update- They have adjusted his drain so he doesn't leak so much out. THey will put the shunt in when it becomes safe to do so. THey don't understand why the fever is still up.

Infectious Disease- They are willing to give Isaiah a few more days with the antibiotics and hardware. The problem from their stand point is that Isaiah's white blood cell count is going up daily. THe fever is still lingering and all of this combined tells them the infection could be getting worse or making no progress in getting better. There is still bacteria growing in the latest CSF cultures. They are now having this done daily. You can't let meningitis continue to get worse or you run into him taking a turn for the worse quickly and it becoming fatal. That is not to say that will happen it is just what they have to watch for and need his numbers to start going down so that he gets better and not worse. We really liked the doctors who came in today which are the ones that will treat him. They are very straight forward and blunt with us and want us to know what they are thinking. I appreciate that so much.

PCCU doctors- They are giving him something to help his stomach keep moving. He is having some trouble with his feeds and they are trying to get that under control.

Isaiah has just gone to sleep for his nap. Right now his fever is around 99-100 all the time. Every once and awhile you will see it at his normal but not often. His normal temp is 97.5. Still no Dr. Kelly and I am almost done updating. I will update as soon as I know anything.

Nicki

Sunday, June 15, 2008 8:24 AM CDT

9:32
Still with a low grade temp. Seems very tired so please pray he will go to sleep and sleep all night. He really needs his rest.

I ask that you pray for Dr. Kelly tonight and that he would know what the best solution is. This is more than I can possibly sort out and honestly it is more than Dr. Kelly can do on his own. He needs the Great Physicians guidance.

I will update tomorrow when we have news. It will either be at 8:30ish or noon, depending on when he comes in. TImmy is leaving work a little early so he can be here by 6:30 incase he comes on in. Pray for his travel so early in the morning.

3:02 UPDATE:
So Isaiah is fighting temp problems again. Pretty much since 5:00 yesterday afternoon he has only had brief spells without some type of fever. He is hanging around 99 to 100 at the moment. He had a good span around 3 then when I updated earlier although it had elevated by the time I got done.

He has a new team of docs on board. Infectious disease has now joined Isaiah's team. They will make all of the decisions on what antibiotics to us. His CSF results have been coming back still showing the bugs. THere is no doubt now that we will have to go home on IV antibiotics. THey said he needed a couple negative test before they would want neurosurgery to put the new shunt in. THey are also waiting on Dr. Kelly so that we can get a big plan. From what I understand he has gram postivie cocci and negative rods in his CSF. Not to mention the stuff the shunt was showing when they tested it after it was pulled.

He has had a few playful times today. He tries so hard to be happy and playful then he will fall asleep without warning. His color still doesn't look good, eyes are dark, and his skin is still ery cold. THey are thinking maybe the skin is so cold because all the body temp is in his core. Still nothing showing in his blood so that is good but it could also be masked by his antibiotics.

THat is all for now. I will update later tonight with how he is feeling. Specifically pray for him to rest and be able to fight these nasty bugs that are fighting him.

Isaiah fought to bring his temp down last night until about 3:00 this morning. His temp is normal right now so that is great news!

Today nothing new is going on. We are just in a waiting game of sitting here and letting him rest and seeing what Dr. Kelly is thinking. I would think he will be in early in the morning. He has clinic from 7:30 till 11:30ish. Hopefully he will come in before or right after. I know it is crazy when I know the docs schedule so well.

Isaiah is asleep right now so I am going to sneak to the back of the room and rest. He did not sleep hardly at all last night.

Isaiah says a Happy Fathers Day to his Dada!!! TO all the wonderful dads out there have a wonderful day!

Nicki

Saturday, June 14, 2008 8:39 AM CDT

8:42 Update
Isaiah's fever is back up. It started rising around 6 and by the time we got back from shift change it was trying to come down. It is now down to about 101 to 102. Improvement. His little feet are finally starting to feel a little warmer. He is back under ice and on his cooling blanket. Believe it or not he doesn't mind the ice. I guess he feels better with it on. He has been so funny today. Sarah (his respite provider) came and he showed all of his new things to her. Then Donna (my moms best friend, and my second mother) came and he did the same with her. He doesn't understand why the drain is coming from his head or why he has to keep the blood pressure cuff on. He is responding more but still feels pretty crabby. Trying to let him rest as much as possible today and keeping everyone out while he has!!!

Today he has had a better day than yesterday but he is still very sick. I will update in the morning unless anything changes. Better get off her lots of VCH staff coming in and out to visit right now!

12:30 Update
Isaiah's fever is finally down. It is starting to get a little on the low side. Just up and down with the temp today. He has not taken much of a nap today. He is just laying pretty still and playing with his name badge. He is probably afraid to go to sleep after yesterday.

We did find out that Dr. Kelly knows what is going on. He will be in on Monday but atleast they got ahold of him so that he knows.

I will update if anything changes. If not I will update tonight after shift change.

We are in after shift change.

So last night Isaiah's fever went down then during the night it went to low. THey started covering him up. Then around 6 this morning it started to elevate again. They caught it at 102.8 and gave motrin and tylenol and put ice on him again. I must say he is handling the ice very well, I know I wouldn't be. So now his temp is around 100.8 or so. They have a rectal probe in to monitor his temp continouslly. This helps so that they don't have to continue taking it and in an instant we know what it is. It is at both extremes and who knows where it will go from one instant to the next.

They do have results back from his CSF cultures. One of the antibiotics was right on but the other will have to be changed. The docs haven't talked to us about all of it yet so we will have to see what they say. No results from the blood cultures yet. He is awake right now playing with Daddy's watch and watching MacDonald. He doesn't want you around him much right now. I would say he just hurts from his temp being so irregular.

Well that is where we are today. I know the plastic surgery team has tried to get ahold of Dr. Kelly but I haven't heard if they were able to or not. Neurosurgery came in this morning and wanting to keep the same plan until Kelly comes back in town. Them and plastics are talking a lot during the day about Isaiah.

I will update later this afternoon. We are just sitting here trying to keep him happy and comfortable (and feel like we are bundled for the winter!!!).

Friday, June 13, 2008 10:43 AM CDT

11:30 Update:
Isaiah's fever is down to normal now. They have him on a cooling blanket and the room temp set all the way down. His temp got up to 105 and stayed there so they packed him down with ice cold rags and ice bags. His hands and stuff are still so much cooler than the rest of his body. The fear is that he is trying to get an infection in his blood (or in other words they were afraid of him going septic). They have done the cultures and have him stable so hopefully the infection is still contained to the CSF and hasn't spread to the rest of the body.

He has been responding since shift change so that is good. He wasn't responding hardly at all before then. THey are having to give him morphin to keep him comfortable. You can't hardly touch him without him hurting something terrible.

Continue to pray for him and TImmy and I as decisions will start getting hard when Dr.Kelly comes back into town. Monday will bring a roller coaster of events. Hopefully he will remain stable throughout the night. THanks for all the guestbook signings. Many have asked what you can do....pray and we will let you know when he is up for visitors. I will update first thing in the morning.

6:40 Update:
OK the laptop is here.

Isaiah really isn't feeling well right now. He has 104.4 and has kept it for two hours with motrin. He is sleeping a lot. His hands and feet are ery cold which could be a whole nother problem with the fever being so high. I should know more after shift change.

Right now I just ask you to pray for infection and his fever. He really doesn't feel well. We will update soon.

This is Amanda. Timmy is currently at the farm getting things together. Isaiah is in surgery right now. The doctors are removing his shunt. The shunt was also infected and is non-functioning, so they decided to take it out. His CSF fluid is infected. They will know more about the meningitus as time goes on. Dr. Kelly is out of town. He will have to make a decision next week about what to do with the hardware in his head. The fluid is all around the hardware so the chance that it is/will get infected is very high.

Timmy is bringing the laptop in the afternoon, so they will update then.

Please pray for Isaiah and Timmy and Nicki.

"I am God and there is no other. I am God and there is none like me." Isaiah 46:9 Trusting that the Lord knows what is best.

Thursday, June 12, 2008 4:56 PM CDT

9:30 P.M. Update
Isaiah's spinal fluid has started to grow a bug. This means he has meningitis. They do know from the test this particular strain IS NOT CONTAGIOUS. I know everyone sees things on the news about outbreaks and I didn't want anyone to be concerned. It will be 1 or maybe 2 days before they know exactly what bacteria it exactly is. Once we know the exact bug, we will know how severe it could be. Hopefully it was caught quick enough and we can get it stopped with antibiotics. Please keep Nicki and I in your prayers. Thank you all for the entries into the guestbook. Once again it seems when everything is going good, we get another curve ball thrown to us. It could be easy to get bent out of shape over everything but we know that God has a perfect plan for our special boy. One of us will update tomorrow with an update. We will update sooner if needed.

They have decided to admit Isaiah to the hospital for more testing. He has now spiked a fever that will not come down below 101. That is not real high but it should come down. They are going to run more tests in the morning to try to see what is going on. Nicki said he just wants to be held the whole time. I am at work tonight but one of us will update tomorrow when we know more. Please pray for the doctors to find out what is going on and for it to not be serious.

Thursday, June 12, 2008 7:27 AM CDT

Isaiah hasn't been feeling the greatest in the world. I am getting ready to load him up and pick up my dad and head to Nashville. Not sure what is going on just want to have him checked. He isn't sleeping at night he just moans through the night. Last night he did better sleeping on me in a recliner. His CSF fluid has picked up with it's leaking alot. Seems to do pretty good during the day but night time he feels just awful.

Will update when we return.

Nicki

Tuesday, June 10, 2008 2:47 PM CDT

There are two new slide shows up. One I put up several days ago and one that went up today. These are all I have for the moment but hopefully soon I can take some new ones.

I will update with more of an update tonight.

Nicki

Thursday, June 5, 2008 6:30 AM CDT

Before I start anything else I wanted to take time to update.

Isaiah's appointments went well. His phenobarb level is still a little low but he seems to be doing fine with it lower so we are going to give him some time before trying to make it go up more.

WHen he saw Dr. Kelly he is pleased with him. He said he is giving him three months so that should but us in the middle to end of August. Then they will go in and take all of the hardware out of his head. Please be praying that it is all setting up good right now. It is like a broken bone and must heal nice and tight. He is still worried about the CSF leak. He called neurosurgery about it yesterday. They are basically keeping him on antibiotics until the hardware comes out. Dr. Kelly didn't really want to do that because he probably will build resistance but neuro said he had to stay on them. He also had a meningitis vaccine yesterday. Since CSF is coming out that means his head is exposed inside also. This long of a leak puts him at a greater risk for it so they wanted to give him a special vaccine that isn't in the normal baby checkup set.

That is all from yesterday. About his eye.....they are releasing where they sewed them before. Isaiah is having trouble getting a good range of vision so he needs it done. One step in the right direction. It will be a very minor surgery and will only take the actual doctor 5-10 minutes to open them back up. He is so cute right now and so smart! When he needs to see something really well he takes his hand and pulls the bottom lid down so he can see better!!!!

Well I need to get my day started and boy will it be a busy one! All kinds of wedding things going on!!!!

Nicki

Tuesday, June 3, 2008 5:30 PM CDT

We are back from Nashville.

Just a few minutes. Everything went well. They will operate on June 26th to release his eyes. He will then have his full range of vision.

I will update more tomorrow as soon as we get back.

More details to come just overwhelmed busy right now.

Nicki

Monday, June 2, 2008 7:38 AM CDT

Everything is going fine around here just tremendously busy. I promise there is a slide show coming but every time I have time to sit and do it it seems I am to tired.

We have been really busy on the farm here lately. Sarah, Isaiah's babysitter, did all her hours last week and allowed lots of time to get things done. All my landscaping is done (drives me nuts when it isn't) and several things with the cows are done. Next project will be to mow off all the fields then work on some fencing. It has just been nonstop around here. I know Isaiah is wondering why mom and dad are always in and out. Little does he realize yet how much work a farm in the spring is and we missed nearly all of it!!!

Isaiah is doing amazing. Still has CSF leaking and it seems to have picked up some. He has two doctors appointments this week. One tomorrow to see the eye doc and hopefully decided something on opening his eyes up all the way. Then on Wed he sees the plastic surgeon and goes for a blood draw to be sure his phenobarb levels are back to where they need to be. I feel like they are. No gazing out into Isaiah land lately!

That is that. Another busy week. My little sister gets married this weekend. Lots of wedding plans to get into motion. And a Happy Anniversary to my other little sister today!!!! Hard to imagine both of my baby sister will be married, I am sure taking it better than Timmy and dad though!!!!

I promise in the next few days I will have up all his pics. There are so many it is taking me a long time. I may just do a few different shows so that I can get them up at different times. Thanks for all your continued support. Even though I haven't seemed to have to time to type a lot we check the guestbook everyday.

I will update tomorrow night as soon as the appointment is over.

Nicki

Tuesday, May 27, 2008 10:28 AM CDT

Isaiah is doing wonderful. We were very careful over the weekend to not get him worn out. He spent time at my friends and my moms.

It has been a hard last few days and the days and months ahead will be hard. Thank you for all of your sweet words.

I am currently working on getting Isaiah pics up. Well in between getting the house in order!!!! I will update more tonight or tomorrow with the new pics of our happy little boy.

Nicki

Thursday, May 22, 2008 10:50 PM CDT

So here is what is going on. Those who know me will understand this story and those that do not will now. I hesitate to share this only because so many like to �talk� but I feel that on this page I can trust all of you to be understanding and not question myself or any of my family about this.

So here is the story of my life�� my mom had me as a 19 year old unmarried girl. My biological father is several years older than her. As a 19 year old who had the world going for her she had to grow up quickly and make choices, hard choices. She choose life which I am ever so grateful for and she also choose to keep the child she was carrying. It was a long road for us. I saw my biological father up until I was 3 years old, then due to circumstances I did not see him for some time. My mom met my daddy when I was 5, they married, and this wonderful man adopted me. We were a family and I was so proud to have a mommy and a daddy. When I was 18 years old I was contacted about seeing my biological father. I had lots of mixed feelings. My first feeling was that I never wanted my daddy to think he was anything less than my daddy. He was my world and could never know how much I loved him and thanked him for choosing me to be his daughter. Never would I have wanted to hurt him. Him being amazing caring man wanted me to meet him because he wanted me to know my father also. From that point I developed a relationship with my father and it has grown very strong since then. There were many things he taught me. I learned where my love from animals came from, how I looked like him and other things that a father and daughter should share. The love I had for him as a three year old quickly found its way back to me. He was always so proud to introduce his daughter, son in law and grandson to people.

So to this day I have a daddy (who is waiting for the kidney and on dialysis) and I have a father. Both of these men mean different things to me and I have a different relationship with them both. The funny part is that they both like each other, can talk, and give credit to each other for different things about me. On Friday I was called to say that my father had a stroke. My mom came Saturday to care for Isaiah and stay the night with him so Timmy and I could be with him. One of the reasons I pushed more to come home was because he was getting worse and Dr. Kelly agreed I needed to be home. When we got home Monday I got things done here and my half brother was staying the night with him and I was going first thing in the morning to be with him. I was called that night to say he had another stroke and coded on them. I immediately left our house and spent the night and day in Bowling Green at the hospital and have been spending every moment I have since then with him. This morning my brother and I had to make the decision to remove care since his brain had swelled and no longer was there hope. Thanks to my wonderful husband I was able to be at the hospital and hold my fathers hand as he left this world. I truly think this is one of the hardest things I have ever done. I love this man so much and to know we had no more time together broke my heart. We have shared a lot, many late night talks to share feelings, stories from when I was a baby, laughter, tears, dogs and horses. I will miss making him chocolate chip cookies and peanut butter balls, cleaning his house, riding around with him. I will miss him so much.

I hope this story makes sense and you understand it. This is very hard for me to share as this is often a part that people don�t know. Thanks to my mom, dad, and father we are all very open but many people still just have never been made aware of this, it isn�t something you bring up in casual conversation. I also wouldn�t want anyone to get hurt in the process. My whole life when people know this information they will say well I didn�t know you were adopted, or I didn�t know Phillip wasn�t your real father. My daddy is my real daddy for he is the one who was there to raise me and he chose me and he is my real daddy. I am just special and also have a father who also loves me and whom I had a wonderful relationship with me. He is where I get a lot of personality (spunk) from and my crocked fingers and big toes!!!! I ask that you understand this and not question it.

Thank you all for supporting me and all of us. My nephew is taking this very hard as my whole family on the Walton side is. Isaiah is going to miss his daddo, he loved to play with his beard and sit with him. Timmy is very close with him and it has also been very hard for him not to be able to be with me. Timmy worked a lot with him and he loved his father in law that taught him different things about farming. They had a wonderful relationship and he would always brag on Timmy. A huge thanks to all of you already for your prayers for we will need them over the weekend. This will be the first parent I have had to bury and it will be so hard. Pray for strength to handle it all.

A last note to LE:
I love you so much and am so proud to be your daughter.

Wednesday, May 21, 2008 12:33 AM CDT

Isaiah went to the doctor today. He si doing well and doesn't have to go back for 2 weeks!!! No more pin turning either. All is well with him. His phenobarb level is low but no seizrures at the moment jsut trying to work on it.

I do not have time to update with details but there is a lot going on here. I will explain later but please be in prayer for all of us as it is a really hard time right now. Promise to give details later. We are all fine though just came home to lots of things.

Nicki

Monday, May 19, 2008 12:44 AM CDT

We are being discharged!!!!!!!!!

Trying to get ahold of TImmy right now so he will take off work to come and get us!

Update when we get home.

Nicki

Saturday, May 17, 2008 6:05 PM CDT

TOday has been a good day for Isaiah. He has played a lot and has had a good time! He has cruised around in his wagon and got to go sit in the quiet room for a little while to sit in the sun. All is stable just waiting for the first of the week so we can go home. When you get this close you start to get anxious to leave! Everyone here is amazing but we will be back soon. I can't say enough for the nurses who have cared for him. He has had a lot of new faces take care of him and has met so many new friends. Thanks to all who love him so much!

TOday has been a hard emotional day. We have been here for right at 4 weeks and have been in the same room. Well there is a very special teenage boy next to us who was waiting for a heart. He developed an infection in a line and passed this morning. Timmy and I had both grown close to his mom, he was one of the children I asked you to pray for. He was a very determined young man who put a smile on so many peoples faces. Please pray for his whole family, it was hard to tell them goodbye today. His mom would just love on Isaiah and cheer him on with everything he did.

I will update tomorrow with Isaiah's progress for the day. Ready to have some family time for the rest of the weekend....once again reminded of how precious life is and now how great eternal life will be.

Nicki

Friday, May 16, 2008 9:37 AM CDT

Today is going good. Still with the same plan. We are here for the weekend then hopefully we will get out of here. Two months will fly by before we are back and ready to get the screws taken out. Looking like the end of July or August. We really need to pray for Isaiah's face. His little face is trying to come out rather than out and down. His upper jaw needs to drop some or the teeth will not be aligned to come in correctly.

As we prepare to go home there are lots of things we need to think about. How to keep infection down and just normal day to day things. I need to get ahold of his therapist so they will know when he will be back so that there is not a lapse there. So excited to go home but lots to think about. Over the weekend every time we go out we are going to try to start taking things so that when they say we are ready to so we are ready! The other hard thing about leaving is leaving families you become friends with that still have a lot of time left here. I will ask their parents for permission today and maybe share their story so you can be praying for them. The pediatric critical care world is a tough one.

Well I am going to log off. Isaiah is fighting his sleep. He stayed up late last night wanting to have a party with his nurse! His uncle Chris and aunt Jamie came and he didn't want them to leave then he decided he would just play with Andrea his nurse! Such a funny little guy. As we continue on with this journey please continue to pray for no infections (this will be his first time off IV antibiotics, when we go home), seizures to stay down, success with the face and for us to be able to find a home routine. I will update over the weekend with how things are going.

Nicki

Thursday, May 15, 2008 2:12 PM CDT

Not much new today. Yesterday, Dr. Kelly wanted to do an x-ray to make sure all of the pins are still in place. The lower left pin is getting hard to turn. Everything looked fine on the x-ray. Actually, Dr. Kelly said we are about where we need to be on the adjustments. Maybe we won't have to do much adjusting at home. His face isn't coming out exactly the way he would like but like he said, at least it is coming out and will give his eyes more room and hopefully open his airway. He said if all goes good, we will go home Tuesday or Wednesday of next week. This place has been awesome to us as always, but we all are ready to go home. Isaiah loves all of the nurses coming in to play with him throughout the day. He is such a little flirt. One of the doctors actually brought him back a small hoola (sp) girl doll from Hawaii. Such a lucky boy to have so many people love him so much. Nicki went home today to clean a few houses and should be back around 5:00. I will go to work tomorrow and go home for a little bit on Saturday to move the cows to another field. We will let you know tomorrow how everything is going.

Tuesday, May 13, 2008 6:49 AM CDT

4:00 UPDATE
Isaiah is having a wonderful day. We just got done with a wagon ride and he rode on the ride on Tonka truck for awhile.

Hie fluid level is way down from his head. He doesn't seem to be leaking near as bad. Dr. Kelly came in and we are still just turning the bottom 2 screws. He wants to keep him on IV antibiotics for awhile longer. It looks like it will be the end of next week before we get to leave. THe time should go quickly. Timmy is working today and will not be here until later tomorrow evening so it is just Isaiah and myself! We have had a wonderful nurse today and that has helped the day go by! I will update tonight if anything changes if not it will be in the morning. He is resting right now so I was taking advantage of it to update.

So sorry I did not update yesterday. We have just been really busy keeping one little boy entertained! There is also not much to report. We waited all day to see Dr. Kelly and never saw him yesterday.

We are hoping to see Dr. Kelly today so we can get some questions answered. I have several for him. The CSF is still draining some but not enough that I feel they will do anything about it. Please be praying that he does not get an infection from this. As we get closer to going home we are also closer to coming off of the IV antibiotics. He is on some really strong ones right now. Isaiah is still having trouble with his feeds but we are assuming it is due to the antibiotics. He tends to throw up when they give two IV antibiotics back to back. They have rescheduled them.

Besides all of that Isaiah is doing wonderful. Never would I or anyone have imagined 3 weeks out he would be doing so good. He has only had 2 seizure episodes and no infections. He is really busy these days but happier than we have seen him in a long time. His balance also seems to be better. I don't know if it is the tubes or the fact that his eyes are back and there had been pressure. We aren't dealing with the angry temper tantrums we had been. He still is very very clear with what he wants but you can manage him better now. Love having that big smile with us all the time!

I will update when Dr. Kelly comes in to talk to us. He has surgeries today so if he doesn't come in before them it will be this afternoon. Praying that he lets us go home this week if he doesn't feel he needs IV antibiotics anymore.

Sunday, May 11, 2008 10:46 AM CDT

So sorry there was no update yesterday. Isaiah is doing fine. Actually on Friday I went back home to Bowling Green. I have a few houses I clean and went to go work on them. While I was there a wonderful friend had me a hair appointment set up. Thanks so much to the girls at the Polkadot Parlor for my haircut and time to relax (I hadn't had it cut in a year so it was time!). Then my husband talked me into staying the night at our house to get some rest and work on our house on Saturday. My friend Brooke stayed with me so I that I would actually stay. I got a lot done around our house, I have a feeling we will go home sooner than later and wanted to get it cleaned up just in case. I may be wrong but at least it is ready to go. Then I went to my mom and dads for a graduation party for my sister, she graduated from WKU with her human resource degree congrats Amanda we are so proud of you. So Isaiah and daddy had some good time just the two of them and I got soooooo much stuff done.

Isaiah's CSF is about the same. There has been a little drainage from the top screw now but not bad. Neurosurgery will come back in this week to evaluate him again. Please continue to pray for the skin to seal around the screws. If stuff is coming out germs can go in and that could be a real problem when he comes off IV antibiotics. He is in the best little humor. His smile is priceless and so peaceful. He is just so much happier now it seems. I really feel like there was added pressure since he does this every time before a big head surgery. The one problem he is having is holding his feeds down. HE tries and tries to vomit it all up. The top of his stomach is wrapped so he can only get very little up so that he won't aspirate but he sits and dry heaves. No fun for him. I think I am going to ask them to look into it more because it has been going on for 2 weeks now.

No news yet of when we will go home. The last we heard was still next week but Isaiah is doing really well. None of us can believe how few complications he has had. He has shocked us all with the amazing job he has done. I tell him all the time how strong and brave he is and he just smiles!!! Today we are just spending the day together and I am enjoying my boys on Mothers Day. I want to wish my mom a wonderful mothers day, she does so much for us and will never know how much we love and appreciate her! To all the wonderful mothers who read this page Happy Mothers Day and enjoy being a mom today. It is the most wonderful feeling in the world and wow what an honor to be their mom. Take time with them today and thank God for giving us such precious gifts to have in this world. No matter what your circumstance our children are such a gift and perfect in the way they were made no matter how that might be. I love being Isaiah's mom and couldn't be happier to have such a spunky little monkey.

Happy Mothers Day to all!

Friday, May 9, 2008 5:10 PM CDT

Not much new today. Isaiah has had another good day. We went for a wagon ride this morning around the unit and this afternoon, we were lucky enough to be Jenny's only patient so we were able to go back to the play room. Isaiah loves getting out of his room and going to see the nurses in the other pods. Dr. Fazilli (pulmonology) came by and said that all of the home vent settings would stay the same. Plastics still only wants us turning the bottom screws. Dr. Kelly will be back in Monday morning to decide how we turn them after that. Isaiah is still dry heaving alot after we feed him so tomorrow we are going to run his feeds over a longer period so that maybe he can tolerate them better. We will update tomorrow with how the day has gone.

Thursday, May 8, 2008 10:58 AM CDT

4:30 UPDATE
GOod news no surgery tomorrow. Please continue to pray for this for at any time they could take him if it gets worse. They are going to let him go through the weekend though. Still waiting on the eye docs.

We have had an amazing day. Isaiah is his only nurses patient so Jenny has taken us to the play room!!!! So wonderful to see my little fellow so happy and a nurse so willing to do whatever to make him happy.

Will update later.

This morning is going well. We are just sitting for another day turning his little pins. We are not sure yet if the shunt will be placed tomorrow or not. I heard maybe and another heard no so I am not sure. There is still fluid draining but it does appear to be leaking less all the time.

We should hear from eye, pulminology, and neuro today so I will update as the day goes on.

Wednesday, May 7, 2008 1:29 PM CDT

SOrry for not updating sooner.

Isaiah decided to stay up and play with Nurse Kayla last night. He went to sleep long enough to get Timmy and I out of here then he at 2:30 he got confused and thought the sun was up so he should be!!!!!

He has had a pretty good day. Trying to get him to nap. Dr. Tulipan was just in and said if we continue to see less and less drainage then he will not place the shunt Friday. Please be praying for this CSF to stop all together. How wonderful for him not to have to have it. If he needs it then thats what he needs but it would be great not to!

I will update when Dr. Kelly comes in for the day.

Nicki

Tuesday, May 6, 2008 9:01 AM CDT

10:30 update
The lumbar drain has been removed this morning. The plan is to place a permanent lumbar drain Friday morning. They wanted the temporary one out for a few days before placing the new one. If the drainage doesn't start again, we will reevaluate again. The attending neurosurgeon will be in later today and we will update more when we know something.

Isaiah had an amazing night. He slept well so he is rested!!!

Dr. Kelly has been in this morning. He had some time to talk (good thing because I like to :) and we were able to get a good plan from him. We are still only turning 2 screws. HE is happy with the orbits of the eyes. We are now in the process of getting the actual midface out. Isaiah seems so much happier right now. Dr. Kelly thinks just giving the brain more room and him not struggling with his eyes is what is making the difference, I agree. He is going to have the eye docs come by and take a look at him. He is thinking they are going to have to release his eyes because he only has little peep holes to look out of. THere is such a huge difference in them. Before they were pushing out so far and he had no troule with a range of vision, now he doesn't have near the range until they open them back up. He also talked about the lumbar shunt this morning. If he has to have it we are hoping that eye and neurosurgery will both be able to go in at the same time. Dr. Kelly says we are looking at about 2 more weeks in here. THis is week 2 so that is right on track. We are on Isaiah's time. Dr. Kelly said the main concerns with him are infection and Isaiah's bones growing everyday as they turn. Please be praying for Isaiah's bones. THe thought is that as they pull it forward everyday the bone will grow daily and then they will give it time to sit up. If this doesn't happen all would go back to the way it was before. As the Lord strengthens Isaiah may he also strengthen his bones. So that is where we are. Neuro will be in later and hopefully we will have even more of a plan.

I will update later this afternoon. Timmy and I are doing well and just being patient and passing the next few weeks by! We just pray the Lord grant us the strength for the day to take care of Isaiah as well as Isaiah to have strength for his healing. It is wonderful to serve an awesome God who provides so much. Have a wonderful day and I will update with the next report.

Monday, May 5, 2008 11:35 AM CDT

9:30 UPDATE:
Isaiah's day has been better. He seems to still have many moments of a lot of pain. They gae him the different medication tonight to change the screws and it went much better! We are only turning the two bottom ones at the moment in hopes to line his teeth up and bring his nose out.

Dr. Kelly and Dr. TUlipan are going to get together while in the OR and talk about what they think needs to be done with Isaiah. Around his screw is still really leaking. Hopefully by tomorrow afternoon I will know what their decision is after they talk!

He got to have something to drink tonight. He loves to drink out of the end of a straw and he had some apple juice. He really was asking for it and for more. I was really excited he was so into drinking. I am going to go to Target tomorrow and get him some of the cups he likes. I hope I can report that he is drinking like a Champ!!!

He is finally asleep and after last night I am headed there. TImmy worked a little overtime today at the fire department and was able to be here early so Isaiah and I had a nice nap together! Well I will go until in the morning. Pray for a peaceful night.

Isaiah had a rough night. He didn't sleep very much at all. Since they put the stitch in on Saturday he has been having a lot of pain when turning the screws. He had to have a half dose of morphin and we think maybe that caused him to want to have a party in his room all night!!! Today he doesn't feel well. He is border line trying to get a fever. This would not be a good thing this far out on the antibiotics he is on. Isaiah is on very strong antibiotics.

Neurosurgery is going to leave the drain in until Friday. They will then pull it out and let him go through the weekend to see how he is going to do with it out. THere is still drainage coming from the pin that hurts him so bad. After the weekend they will decide on the shunt based on what they see once the CSF isn't being drained.

Plastics has not been in yet. I will udpate when they round. Please pray for him to rest today. He really doesn't seem like he feels well at the moment.

Sunday, May 4, 2008 10:19 PM CDT

So sorry I haven't updated. I totally forgot that I had not done it this morning just to be honest.

Today has been a good day. He had the same nurse as yesterday and he really likes her, then the same one came back tonight and she is also wonderful. His respiratory therapist brought him a monkey today and I think really won his little heart!!!

His fluid levels are about the same. Still drainage from the one screw but getting a little better. Tomorrow should be the big day to see what to do. Isaiah has had 2 good naps today and is currently in the process of going to sleep at the moment. We have really been working today on trying to build strength in his legs and getting him to sit again. Hard with the spinal drain but just a very few little exercises. HOpefully when the drain comes out we can really start working on building strength in him. My mom is going to our house to get his walker and bean bag. We hope these two things will really start to build some strength.

Nothing new today just steps in the right direction of getting better. He seems so much happier today and in such less pain. We are actually going to try normal Tylenol tomorrow and only give loritab at screw turning time. I think he is ready for it.

I will update tomorrow when we start hearing news from the doctors. Things will pick back up now that the weekend is done.

Things to pray for: the doctors decision in the CSF fluid, his pain management.

Nicki

Saturday, May 3, 2008 10:10 AM CDT

So the site has been down for just a little while but now I can update!

Yesterday afternoon pretty much right after I updated Isaiah started back into seizure activity. They have raised his phenobarb dose at night time and will check his levels again in a few days. He is also taking the 3 day drug that helps him come out of them. We have to give this at home some times also. He is just very agitated today and doesn't really want you around him or even looking at him for all that matters. He just wants to watch the movies some of his friends sent for him to borrow and to be left alone. We try to leave him alone as much as possible because if not that will elevate his activity. Hopefully the drug will kick in and the levels will go up and this will be something that is once again under control. Typically his are well managed with medications which is a blessing in itself. So many children can never find the right mixture for them.

Plastics has been in this morning. We are still only turning three of the screws. His left eye isn't pulling out as much as his right so we are trying to give it a chance to catch up. They also went ahead this morning with another set of stitches. They are just really trying out get the place around the pin to heal up. He still has no drainage coming from the nose or trach. It looks like we are moving away from the possibility of another head surgery but the idea of the shunt is still being thrown around. It will all depend on what happens when the drain is pulled out. Hopefully by the middle of the week we will know something, if not by the end of the week we will. They are trying to get the drain to drain more but it only wants to do so much.

So those are the things going on for the day. Just keeping it as normal as possible for him around here. Before I sign off I have got to update with what Isaiah's new pass time is. Isaiah loves music and I mean he reallllllyyyyyy loves it. In the past few months he really likes the radio. When in the car he likes for you to flip through the stations and we listen to a little bit of everything. Well every time Taylor Swift (a country music artist) comes on he starts to dance and grin from ear to ear. One of his nurses has is as a ring tone and played it just after surgery and he enjoyed it.....so a few times a day we get on youtube and he just loves listening to her songs. It is the cutest thing in the world. There he sits with the laptop in his bed listening, smiling and just having a big time. He is so funny the way he knows her songs from all other songs. She does have a beautiful voice! Have no fear he is still getting in his kid songs and christian music also!!!! The problem with that is I will play the CD for him our church did an he gets made when his Uncle Drew's solo is over and we have to listen to uncle Drew over and over again....he just wont give the other songs a chance!

Well I will update tonight with how the day went. Nothing else to report just going to enjoy our day together before daddy goes back to work tomorrow.

Have a wonderful Saturday.

Friday, May 2, 2008 11:17 AM CDT

2:10 Update:
Sorry for the lack of an update we have been busy then Ann Kelly came and spent a few hours. She had lunch with me then had to go. This afternoon has been busy. He currently has his home trach in. The difference is it does not have a cuff. He is doing pretty well with that. His phenobarb level has been a little low, they are trying to make some decisions. He has his PJ's on today and seems to be feeling better. They are only doing his vital signs now every 4 hours instead of 2 so that means they think he is doing great. He does have to stay in the PCCU while he is here due to him being a home vent patient. The drain is still working slowly but surely! He still has CSF coming from his head but none from the trach or the nose.

He is still having some problems with his feeding also. He gets sick when the milk goes in. The loritab seems to be doing the trick for the pain so that is a wonderful thing. Besides that he is doing great. He is playing and recovering at a slow but steady pace. THings to pray for: CSF fluid, feedings and for him to start to get back to sitting and things to that nature. I will update tonight with how his afternoon went. Thanks for all the comments on my handsome little guy!!!

All is going good today. I will update in a little while when I have more time

Thursday, May 1, 2008 9:21 AM CDT

6:21 Update:
Yet another update!!!! So neurosurgery has been in and they are not going to tap the shunt. There is not enough CSF fluid withing the areas of the brain to get any fluid. He is very dry because it all comes out. So here is the new plan! If we can get the drainage to stop then we can pull the spinal drain. If it starts up again what they are talking about doing is putting in a shunt. Isaiah already has 1 shunt. It is a VP shunt which goes from the head and feeds down into the abdominal cavity. SO if they had to go with this one it would start at the base of the spine and wrap around and drain into the abdominal cavity. Hopefully it won't be needed but it would be an answer to later surgeries. So basically I hae mixed feelings.....totally putting this one into God's hands and not thinking about it. If it is what is needed and can keep him from having his head operated on again then so be it. THis means we hae a plan if it continues to drain and the drain doesn't help. It also means we have a plan if it stops and the drain is pulled and it starts again. All of the bases are covered. Ideally it would stop and be fine but as the reminded me he is a special case.....hmmmm I knew that :)

3:30 UPDATE:
SO today is going well. Ann Kelly has been here most of the day but has gone to go get Harrison now. I really don't think Isaiah understands why Harrison wasn't with her. He cried when she had to leave. She did take a couple pics of him, I have taken a few with my camera but I don't have a cord to upload them. I have placed a few pics frpm today under the view photos tab at the top. He really does look good and it shouldn't make anyone with a light tummy not feel well! You just see him from the front and plus I know several of your children look at his page with you and that way if you would rather them wait they don't just come up.

Dr. Tulipan (nerosurgeon) came in today. He wants to tap his shunt and maybe perform another CT. This should give more insight into the CSF problem. The fluid will pick up from the nose and screw then slow down then pick up. THis is much better than the constant drain. Well I will update again later tonight.

Good news we have a little bit of drainage coming from the drain!!!!! There is a lot of blood in it so it tends to want to clog the tubing. They flush it every so often so maybe that was the problem.

Dr. Kelly came in and we still turn do not turn one screw. He will reevaluate tomorrow. He explained what he will do if the drainage doesn't stop from the nose. Won't go into all of it but it would be very extensive and we just need to pray that doesn't happen. The main concern is the nose drainage.

I will update more later. For the first time he is off the vent.

Wednesday, April 30, 2008 10:42 AM CDT

9:20 UPDATE:
I know it seems like forever since I have updated. We have been busy with our little guy this afternoon and friends of our came to visit. We went to dinner with them and had a wonderful time....thanks Isaac and Julie for a wonderful evening! Tomorrow Ann Kelly will be here with me for some of the day and again on Friday. I am sure Isaiah will wonder where Harrison is.

Well I don't hae the news to report on the drain I wish I did. Isaiah still is having a lot of fluid leaking from the head, not as bad but still some. The drain doesn't seem to be putting out what they thought and helping the way they thought. Neurosurgery basically said we have until probably Monday. If it hasn't helped by then all of them will have to get together and decide how to go in and fix it. Storming through with prayers that this is not what happens. Please be praying that the drain fluid will pick up and the leaking will stop. It is basically like if you cut yourself. You have to stop bleeding before the skin heals, well the drainage has to stop before the dura can heal. Maybe oer night it will begin to pick up and in the next couple days. The fluid has been less from the nose so hopefully that is a good sign.

I think that is it. We have all had a pretty long day today so we will be headed to bed soon. Isaiah is out right now today has been the longest for him. Dr. Kelly is letting him put his head on a real pillow so he is sleeping good. We haven't been able to talk with Dr. Kelly in several days so hopefully I will see him tomorrow. I will update after morning rounds.

Specific prayers: pain management and fluid to stop from the head and into the drain.

12:00
They got the lumbar drain in fine. Hopefully this will solve the fluid problem. We are trying to get him situated and we'll update later today.

They have just taken Isaiah back to the OR. The people putting him to sleep were really nice and he was calm with them. Praying the curve in his back will not cause a problem. He had PT this morning and slept through the stretching. We have seen a few smiles this morning. That always helps with telling him bye!

Will update when it is done. Probably around 11:15 to 11:30.

Tuesday, April 29, 2008 7:03 AM CDT

10:08 UPDATE:
Well Dr. Kelly left and we didn't get to talk with him. We are turning all screws with the exception of one of them. Hopefully tomorrow we will get to see him.

The drain is still a go for in the morning. They will put a cath in his back and it will have small tubing which will drain into a reservoir. The hope is enough spinal fluid will go there and not out the head and it will give the lining of the brain time to heal. I need you to pray for this. We have approximately 7 days for this to happen. We were given plan B today if it doesn't and it would not be good. If this doesn't work they will have to open Isaiah's head back up and fix it. He can NOT continue to drain this fluid. So I ask you for the next 7 days to pray for healing of the dura and for the doctors to know what to do.

SO somewhere in between 9 and 10 he will go back to the OR. This will probably last about an hour by the time they look at him under x-ray and place it under x-ray then make sure it is in place. THe risk are very similar to an epidural with the added risk of bleeding. Isaiah is a tough case to put the drain in. His back is curved and he has a lot of scaring where they have done this before on different occasions. He doesn't feel the best today and didn't yesterday either. I am sure he his head is hurting and his whole body probably feels funny by this point. We are just trying to keep it quiet and familiar in here for him. I will update in the morning then I will update the page as soon as the doctor comes out. Again thanks for the overflow of support.

1:04 UPDATE:
SO here is the latest. We are waiting on Dr. Kelly to come in. He thinks part of Isaiah's head is going out quicker than others.....anyways he wants to tlak to us about the plan. No big deal it just means they will turn screws more or less in different spots. He should be up here anytime. We are waiting for lunch and everything until we see him. Isaiah will go to the OR tomorrow to have the neurosurgeon put the drain in his back. Radiology wouldn't do it as we suspected. It looks like around 8:00 in the morning will be the time. Won't know forsure until later in the afternoon. Daddy has gotten to hold his sweet boy today (yes I do share!!!). Hopefully he will feel like getting up once more before the day is out. Mommy would like her turn since we won't get to hold him for 5-7 days with the drain. I will update when Dr. Kelly comes.....good news for the day...it is free ice cream cone day at Ben and Jerrys down stairs!!!!! :)

One week behind us.

Neurosurgery came in this morning. They are going to try again for the drain. If a radiologist will do it today then that is what they will do if not the neurosurgeon will do it tomorrow. THe problem is that Isaiah's doctor is evidentally out of town and his partner is in a day long surgery today. So hopefully they will get this under control. The drain is the only way to do that.

I will udpate later in the morning when I know more.

Monday, April 28, 2008 8:47 AM CDT

10:25 UPDATE
I am in the room now. Things have gone fairly well tonight. So Dr. Madhu is on, thank you Lord, and is taking care of things. She just didn't think he looked well when she came on. I explained that his activity level was down today and he just seemed so tired. They have checked his sodium levels since the CSF fluid drainage can make that go down. They have checked his numbers to be sure there is no sign of infection. Couple were elevated but not enough to be concerned. His phenobarb level was down so he has gotten an IV dose which has knocked him out. He is sleepig really well right now.

The fluid just is draining so much. His little nose has a constant pool coming from it. The stitch seems to be helping the area for the moment but who knows by this time tomorrow if it will have the same effect. Or it could find a new place to escape from. His seizure activity was ery different today than normal. Something to watch and keep an eye on. So tomorrow should be a day of healing and watching CSF fluid. Timmy is coming back earlier tomorrow than originally planned. It rained a lot so his part time job won't need him, we are really excited he will be able to come straight here!!!! I will update tomorrow after rounds or if there is anything new in the morning.

4:30 Update:
Isaiah has had to have stitches in his head this afernoon. He did pretty well. He had his first seizure this afternoon. They are trying to make decisions on the spinal fluid tonight. Update more later.

SO they have rounded this morning. As far as an PCCU stand point we will stay the same. They will draw labs today to make sure all of his blood levels are where they need to be and they are all theraputic. THere was discussion over the CSF fluid. It had slacked off yesterday but today it seems to be picking back up. It is really coming from the trach which concerns me for infection. He is still smiling this morning. He had a good night, kind of sleeping and then waking for a little bit. TOday I am keeping the light on until normal nap time then on until bed time. Trying to get him back on his schedule. He obviouslly needs a little more sleep but not much.

Timmy is working today and then tomorrow so we don't get to see him until tomorrow night. A friend of mine, Erica Shultz, is coming to spend the day with me. My aunt should also be here as her little boy has an appointment here today, Levi has to have his helmet checked. So it looks like the same old plan today. Plastics and neurosurgery will come by today later and I will update then. We will see what they want to do then, who knows they could change the whole day. Please be praying for the CSF (spinal) fluid to stop. It is making his nose raw and around his trach where it drains also. It has to also cause a headache.

Will update with the next round of doctors.

Sunday, April 27, 2008 4:19 PM CDT

Everything is going well today. We is awake a little more every day. Seems to be aggitated easier today. He will sleep for a few minutes then wake up for a few minutes. Timmy and I hae both held him today. We are just both really tired today. Tonight is a bridal shower for my sister and I don't think I will be able to make it there, wish I could. Nothing else going on. Stable day with nothing changing. Still needing the vent during the day....he does well for periods of time without it then needs it again. He is never off more than a couple of minutes. The fluid was lower this morning but seems to be picking up this afternoon. Who knows. Well I will update tonight....just enjoying our Sunday afternoon with the three of us!

Saturday, April 26, 2008 6:58 AM CDT

9:10 Update:
So today has been much less eventful than yesterday. It is the weekend though!!! Isaiah has only had to have 1 dose of morphin today and has done well with the tylenol and loritab. He finally had a diaper today so maybe his feeding will go better now that he has some room. We are still having a problem with the spinal fluid. WHen anyone lifts him it comes running out. Not sure what will come of that. You have to change the dressing under his head every 2 hours because it is soaked. He has also had some skin grow up around one of the screws. Plastics will look at it in the morning and then Dr. Kelly will be here Monday morning. The screws were able to turn tonight, thanks Hope!!!! He does need morphine before we turn them due to him needing to be calm and where he acts like it hurts him. That is about all our day has consisted of. Isaiah did smile a few times today....what a sweet precious smile it was, ofcourse the first was for his grandad!

I can't explain how different he is beginning to look. For the first time in his life he is close to being able to close his eyes completely. Several know this but most do not....I have been incredibly nervous with how I would emotionally deal with the changes in my baby. It seems like they always want to change him and often it seems like you have to bond with a new look and remeber it is the same little boy. Isaiah was created perfect in His image and if we hadn't had to of we wouldn't have changed a thing. I am so thankful this change is going to be gradual. I was looking at the pic on his web page and thought he doesn't look like that but then I want to say thank you Lord or giving Dr. Kelly the knowledge to make things possible for my little guy. When the blonde curls come back and that glowing smile is back all the time it will make things easier. He is looking very handsome and I must say I am thrilled with the changes and the knowledge of what this will bring for him. I have debated on sharing pics. I haven't taken any but tomorrow I will talk with Timmy and we may have to post a pic of him. It is hard for us because we thought of him as perfect before and didn't want this surgery for a cosmetic reason but for a functional reason (and it could not be avoided). So sharing we don't want people to focus on he looks "better", (what is better anyways) because he has always been created in His image but that he will be able to function at a higher level. There may be a pic tomorrow or we may wait until he heals. Thanks for all your prayers and support. The attending informed us today these days are the easy days the hard ones will be in the next 3-4 weeks.

I just realized I hadn't updated last night. LIttle girl time with Brooke and I forgot before bed. So the screw turning just went ok. I had myself ready to go repeating in my head that I could do it. Well I got half way through it and he started to jerk a little in discomfort and the nurse had to do the rest of them, I just couldn't finish them. I did do one though..... Huge thank to his nurse Hope for being there when I really needed her, she did wonderful!

Isaiah is still having a lot of fluid drain from the head. If he sits one way to long then it all accumulates in the head and when you move him it will pour out. Needless to say this is a little problem. Hopefully over the weekend this will slow down and it will stop. If not I bet he will be in the OR early next week. The concern is if things are coming out then things can go back in.

His heart rate has been up a little last night. Doesn't seem as comfortable and when he wakes up he touches his head. We are guessing this is his way to say he is hurting. He has to have a headache to say the least. Well today will be slow as the weekends always are. I will update after rounds if there is anything new and if not tonight. TImmy will be back this afternoon. He is headed down to the farm to check on things for us. Need to get my shower now.

Nicki

Friday, April 25, 2008 6:52 AM CDT

5:30
THe drain wouldn't work. Trying another stitch. I will update later he is just really sleepy right now.

3:30 Update:
They have jsut made the decision to come in and put a spinal drain in Isaiah. Have had him in CT today and just informed us it needs to be done now. Doing it in the room. Please pray for him to rest comfortably through this and it will help the high amounts of fluid. Need to try again to get ahold of TImmy gotta go. Update when I can.

11:50 UPDATE:
So we have had a busy morning. Isaiah is minus one JP drain out of his head. He has a couple more stitches in his head, his screws have been turned and guess who gets to do it tonight. You got it mommy......please pray for a tough stomach for me this is something I never wanted to have to do. A little anxious but trying to remember a greater hand will guide my hand. Non the less pray for my unsteady tummy. Isaiah is minus one IV, 1 art line, and 1 cath. His port has been accessed, so he has had a very busy morning!!!! Well I am going to get off here. SOme friends of ours from the fire department are coming by to have lunch with me. Then my friend Brooke will be here tonight to stay the night with me. Update later this afternoon.

Here we go and starting day 3 post op. Isaiah had a very good night and slept very peacefully. THey are going to stop giving as much morphin and start giving more loritab(sp???). THey have never used this pain drug so that they would have it for this surgery with no tolerance to the medication. Tylenol is also scheduled. The swelling in the face looks better today. Not back to normal but his head looks like a 8-9 year old instead of a teen. The plastics resident came in this morning and said today is the day we will start the turning of the screws. SHe said she will show us today also....little does she know there is no us today just me and the us thing will have to wait until tomorrow when Timmy can be with me. My tummy won't hold that today. THere is question about the drain coming out. There has still been a lot of out put from it so it may stay in. I am at peace with it coming out and knowing it doesn't hurt....my grandmother had one when she went through her mouth cancer surgery and she said it didn't hurt. They may have to go in and stitch one spot in his head that is still really draining. Praying for him to sleep through that. He had a wonderful nurse last night so TImmy and I rested well knowing she was with him. Goals for today: to go to the bathroom, stop the fluid from the head, come off the morphin and swelling to go down. I will update once the doctors have made rounds.

Thursday, April 24, 2008 8:29 AM CDT

9:40 UPDATE
OK so I don't think one of the posting went up earlier. Around 5:30ish Isaiah had a spell with his oxygen. THat is what the little update is below this. All is well now just trying to keep his trach positioned so that he doesnt cut his air off. There is sooooo much swelling that his trach hits the back and it cuts his air off. His nurse today figured it out and the doctors confirmed it. THey are putting another pain med on board tonight just incase he needs it. All are really concerned about him getting in to much pain. We had a great visit with Dr. Huss toay and Dr. Madhu. So nice to have two doctors who care so much for him.....well around here it is hard to find someone that doesn't care about Isaiah!!! He was cute today responding with his little foot to people he knows. WHen Jennifer or Madhu or Dr. Huss would come in he would move his foot as to say HI!!! His uncle Chris and aunt Jamie came tonight and he did the same thing for them. Such a loving little fellow to not be feeling any better than he does. So he has only had one trick for the day and he seems to be comfortable. Thank you for all the support you guys are and have shown. Helps the time pass!!!! I will update in the morning. Timmy goes back to work tomorrow. He is trying to work so that when we get home he will have the time to take off. Me and the little guy can manage though!!!!

***X-Ray looks fine. THey think it is jsut the swell causing the problems.

4:20 UPDATE:
THe trach change went well. It actually had to happen twice due to lack of communication but it is all taken care of now. He has a cuffed 4.0 trach in. He usually has a 4.0 uncuffed but that will come later. He is on his own vent and his own vent settings so that is good. Getting meds only when he needs them . Swelling is really bad in the face right now. He looks like a round basketball. He is getting lots of TLC right now. He has a wonderful nurse right now and he is her only patient so he has lots of attention!!! He is waking up a little. He is atleast moving his leg and trying to make a few sounds. I actually just had to take a break because he was fighting them while they tried to suction. He was tryig to help them which is the first time he has been awake. Mommy's spunky monkey is trying to come back around!!!! I would say by the end of the weekend he will really trying to be waking up and letting them see his little personality. This morning he was trying to respond. Jennifer came in and he moved his foot for her. It was really sweet. He also responded to Dr. Huss. Well going to go. Next update will be before bed. Specific prayer: he will handle waking up ok with as little pain as possible.

9:00 UPDATE:
PCCU docs are done rounding. THey are taking him from his morphine drip and only giving him doses as needed. THey are keeping the adivan on board so that his seizures should stay down. THat should keep him a little sleepy acting which is good being the drip is being removed. They are giving meds to make him go to the restroom which should help his feeds. He hasn't been since Sunday which is probably why the feeds are building in his tummy. They are giving him lasix to help take some of the fluid off of him. Last night he required platletes and that was a lot of extra fluid. SO that is the plan. THey will take the ET tube out sometime soon. I would think before 2:00 or so but don't know that forsure. Today is getting off to a busy start for my little guy. Pray for pain as the drip is stopped. Will update shortly.

Dr. Kelly has already been in this morning. So here is the plan. Today the ET tube will come out, basically right now it is like he is intubated. THey will put in a normal trach and they will cuff it which means there can not be a leak around it. When he does well with this they will go back to the normal trach and we will be able to hear him around the trach! This may not make any sense to some but to some it will...all in all working towards trach coming out. The drain in his head (JP drain) will come out tomorrow as long as the fluid continues to slow down. They want the fluid at 30 and he is still at 100 so a little more time with that. They are also starting to take the medications from him. Dr. Kelly wants him to really start to wake up. There is still a lot of fluid coming from the hardware that is coming out of the head. If that does not calm then they will have to put in a spinal drain. Praying for that not to happen, hard to hold him then. THey are still giving him feeds but he is starting not to digest as well. THey have turned them off for now to see how he does. He has lots and lots of swelling right now. SHould peak today and start to slack off tonight.

Need to go. THey are rounding on him right now and need to see what they have to say. I will update here in a little while when I know what the plan is, or more of it.

Nicki

Wednesday, April 23, 2008 8:48 AM CDT

10:00 Update:
Well it is bedtime but I wanted to update you all. Nothing new really to report. Isaiah is stable and sleeping. He has the same nurse he did last night and we really like her and she is great with him. SUre does let a mommy rest easier. So Isaiah is having a lot of drainage from the sites where the brackets are coming out. He soaked the bed all the way down to his diaper. Praying for that to slow down....mommy only handles so much blood. Plans for tomorrow: to change his trach, start weaning meds, take out his cath and start waking him up some. These are plans and are always able to change. Thank you ahead of time for all of your support as we face day 2 post op. Isaiah is REALLY starting to swell.

TOnight has been good for TImmy and I. The chaplain for the fire department came by, thanks Damon. THen mom and dad came to take us to diner.....thanks guys. Needless to say company today has helped the time and I am sure tomorrow Isaiah will start keeping us busy. :)

Well we are going to bed tonight to try and get some much needed rest. Very tired tonight. I will update in the morning the same way I have today. I will start in the morning and give updates as doctors come in.

2:00 Update:
Dr. Kelly just came in. He wants to start trying to wean Isaiah from some of the meds so that he will wake up some. Not sure how we feel about this. Please just pray for the team here in the ICU so they will know what is best for Isaiah. He obviouslly can't stay sedated forever but we were hoping a little longer to keep him as comfortable as possible and the seizure activity down. I asked Dr. Kelly if he started to show signs of discomfort or seizures if they would slow down some and he said sure. He just wants to get him back on his normal trach and normal vent as soon as possible. My grandparents have been with us some today so that has been a wonderful break in the day, always nice to see them! I will give an update later tonight. Probably right before bed unless something else was to change.....no news is good news. Please pray for the weaning process....the real journey is about to begin.

11:00 Update:
Dr. TUlipan (neurosurgery) just came in and said he looks good. He is keeping a very close eye on his spinal fluid to be sure he doesn't have any to back up. You may remember that after every craniofacial Isaiah has had he has needed a spinal tap to drain all of the CSF fluid. Praying that will not be a problem but as Dr. Tulipan said we can take care of it when it does.

The doctors just made rounds. They are going to check with Dr. Kelly to be sure he is on the same plan as them but it looks like today will just be a day for everything to stay the same. They are hoping to start his feeds back today and get him on some of his regular meds. They are trying to keep IV access so they don't have to access his port. The problem with the port is it gives him more of a chance to have an extra place for infection. So today looks like it will be a day of Isaiah resting under some strong medications. He is on a morphin drip which should keep him comfortable. They are also giving IV doses of phenobarb and adivan (sp?) to keep the seizures under control. Today he should stay stable with all of the meds. The bleeding looks to be a little better. His nurse has already dressed around his brackets. They are coming out of the back of the head right behind the ears. In the front you can't see where they have them anchored. Not that I have looked a whole lot that is just what TImmy tells me!!!! He has a nurse today that he had when he was in here when he was 15 months old and she is really sweet to him. A nurse practicioner is on that we like and hopefully Dr. Madhu will be here at some point today. Nice to have familiar faces with him and patient ones.

I will update later when Dr. Kelly comes and makes his rounds. THanks for all of the encouragement. Today Timmy and I will get lots of reading done!

Until Dr. Kelly comes in........ Nicki

Tuesday, April 22, 2008 10:04 PM CDT

*****Morning Update:
We just left Isaiah for morning shift change. He has been stable through out the night. He had to have some calcium and potassium. Blood counts have been good. THere is concern with a lot of bleeding coming from the head in areas there shouldn't be that much bleeding. Plastics will take the bandages off but with the amount of bleeding I am sure they will have to go back on. Again doctors rounds will be around 10 and then Dr. Kelly will be in around lunch. I will update after doctor rounds then again after doctor Kelly. Just watch the times and updates will go like they did yesterday!!! Thanks to all.....can't wait to see that little smiling face again like what is at the top of this page.

I am exhausted but I wanted to give all a quick update. You have been so supportive today and I think you for that. So we have been in there with him and are now in the sleep room. They have him under with medications right now.

So he looks better than I thought he would. There is swelling and lots more to come in the days ahead. Today was a hard day and we are thrilled to put it behind us. The real challenge for Isaiah will be the days and weeks to come. Isaiah has a lot of pain and healing to endure. Please pray for this for him and for us as we watch him. To watch your three year old in pain is hard. He has ALOT of lines hooked to him at the moment. His head is completely wrapped in white cloth. I am assuming that in the morning they will take it off. Then we will have to deal with the sight of the metal bracket looking things. Still trying to figure all of this out. Lots of new things but lots of things that seem to be second nature to us.

They will call us in our room if anything changes. If that were to happen I will update. If not I will update in the morning after morning rounds. I want to say I am so glad I serve such an awesome God!!!!!

Nicki

Tuesday, April 22, 2008 8:57 AM CDT

6:05 Update:
Isaiah is out of surgery, well they are finishing him and we have talked to the doctor already. Dr. Kelly said this was a textbook operation.....yes Isaiah did something by the book. The reason for the rib was that there wasn't any bone at all around the eyes and they had to have something. He has incisions under both eyes, in the mouth, and prongs coming from the front and back of the head. We haven't seen him yet. He is still very concerned with bone growth in the skull but I will have to talk about that more later. So surgery was done sooner than they thought and Isaiah remained stable through the whole thing. Will update tonight after we see him.

3:30 UPDATE:
The nurse just called and needed consent to take rib for extra bone. We're not sure exactly what all is going on. Maybe Isaiah just needed extra bone for anchoring the hardware. We'll let you know when we find out something else.

2:30 UPDATE:
THey just called and said there was enough bone in the front to put the plates in. THat is really good news.

1:00 UPDATE:
Nurse came out and said Isaiah is still stable. Still going to be awhile lots for Dr. Kelly to do. Hanging in there just feel like my arms are a little empty without my little guy bucking aroung in them:)

11:00 UPDATE:
Just called to say all seems to be going as planned. Nothing new beyond that.

9:05 UPDATE:
THey just called and Dr. Tulipan (neurosurgeon) is in the process of making hte first cut. thought they would already have done that so it is officially on way. Update within 1-2 hours.

Its Nicki...

They have taken Isaiah. He left us at 7:40 and was happy walking with the nurse. She gave him her name tag so he was good. Dr. Kelly is just now getting started with him. Dr. Cofer has the tubes in his ears. The bronch was not able to be run but will be done around the end of June.

I will update everytime they call at the top of this message. Thanks for your prayers keep them coming....going to be a long day and has been a tough morning.

Monday, April 21, 2008 9:15 PM CDT

Hey Everyone. I'm on the phone with Nicki and they don't have internet right now. Isaiah's blood work came back fine. He should be great for tomorrow. He had a wonderful time at the zoo. He laughed the whole time at Rainforest Cafe. He got to set by the big gorilla that raises his arms. The meerkats were his favorite thing at the zoo. They came right up to him and put their claws on the glass. The giraffe came within 10 yards of him and kept shaking his head at him. Needless to say they have had a wonderful day.

They should take Isaiah from us about 7-7:30 from us in the morning. Nicki will update every hour or as she gets new information from the OR.

Please continue to pray for my precious brother, sister, and nephew. I know that we worship a mighty God and I know he has a good and perfect plan for Isaiah. Pray that we would rest on and trust our unchanging God. Thank you for your support of Nicki, Timmy, and Isaiah.

In Christ,
Amanda
Nicki's sister

Monday, April 21, 2008 11:52 AM CDT

This is Nicki's Friend Ann Kelly, Nicki wanted me to just post a short post of what they are up today. They went to see Dr. Huss and she said that his lungs sounded great and then they were off to see Dr. Kelley and he said that Isaiah looked good and everything was a go for tomorrow. Dr. Kelley went over the pros and cons of the surgery and all the risks that go with it but said everything looked good.

Then it was off to pre op for bloodwork and now they are on thier way to the zoo for an afternoon of fun and to keep thier minds off of what they have to face tomorrow. They are planning on going to Rainforest Cafe tonight which is another of Isaiah's favorite places to go. They are staying in a hotel tonight close to the hospital so they don't have to get up as early in the morning and rush to get there. Nicki is planning on updating tonight if she has internet access. If not there will be updates throughout the day tomorrow.

Please continue to lift this family up in prayer as they hand over Isaiah to Dr. Kelley tomorrow and that they will have a peace that Isaiah will be in good hands and God will be leading the medical team all day tomorrow.

Ann Kelly

Sunday, April 20, 2008 10:02 PM CDT

So things are good around here. We are packed and the van is loaded with all that can be loaded tonight. We have to be at the peditricians office tomorrow at 8 in the morning. She wants to just listen to his lungs and just be sure they sound good. I think they are fine. THen it is off to see Dr. Kelly at 9:00. After we see him we will take him for them to draw his blood. Then we should be done at the hospital. After we are done with all of that we will see if our hotel room is ready yet. If it is we will let Isaiah nap then head to the zoo. If not we will go to the zoo then bring him back and then go to eat. We are taking him to his favorite.....Rainforest Cafe. Can I say the child just loves the environment!!! Maybe they will sit us by the monkeys like they did last time. He loved it!

So I will try to update tomorrow night after all of our appointments. It looks like the hotel has access. Please know that on Tuesday I will update the web every time they call from the OR with an update. If I am unable for some reason I think one of my friends will be there that has the info to do it and can. It doesn't seem like it is already here. We are doing fine. Focusing on the moment we have before we have to go in and nothing more.

Until tomorrow night.....

Nicki

Wednesday, April 16, 2008 8:27 AM CDT

****Quick add on to update.....we have 9 lab/australian shepard mix puppies here at our house. NO we did not mean for our lab to have puppies she was actually in a pen when the neighbors dog came by. She will be fixed while we are gone to say the least :) If you live in our area and want a puppy or know of someone who does please let us know by the weekend....if not it looks like we will be the pick up truck in walmarts parking lot with a free puppy sign. Timmy says he has an Ellie May with to big of a heart!!! PLEASE call if you know of anyone...with the two breeds they will make wonderful pets!!! 270-542-6437

Happy Wednesday to all! Hard to believe it is already half way through the week and this time next week Isaiah will be one day post op.

So where do I start with the update. I could make this one really long but going to try to keep shorter....don't want you to get bored!!!! We had to make a Vanderbilt run with Isaiah on Monday. Late last week Isaiah started with an upset belly. I thought it was where he had been constipated and he was cleaning himself...he does this lots (when he is 16 he won't appreciate reading this:) Harrison came to visit and by the weekend his tummy was hurting also. Then his mommy started not feeling well. Isaiah is over it now and has been for a day and Harrison is on the down hill slope! The reason to go to Vandy is that early Monday morning say 3:00ish Isaiah got water in his lungs from his ventilator. Not sure how it happened but it did. So I called Dr. Huss as soon as the office opened and she thought best to see him that day. So Timmy comes to Louisville to get us then straight to Nashville then home. Good thing is it wasn't as bad as I was afraid of. He is on an antibiotic to keep him from getting pneumonia from it but if it weren't for the fact surgery was coming up she wouldn't have treated it. He is feeling good today. He slept lots yesterday but he was worn out from the weekend and Monday. Today he woke smiling like my normal little ray of sunshine that he is!!!

Even though the boys were sick they had a good weekend playing. Isaiah has sooooo much fun with Harrison and Harrison knows Isaiah so well he knows when to play and when to give him his time. Isaiah loves his friends. This weekend is his buddy Emma's 4th birthday party. Hard to believe she is already 4!!! She actually won't be 4 until the next weekend but Isaiah will be in the hospital so that called for an early party!!! He will get to visit with lots of friends that day. We can't wait! Then on Sunday Clay and Will are coming for the afternoon to play! Lots of other people we were going to try to sit up play dates with but times just haven't worked. We have the whole summer though when he gets home. A huge thanks to all of the moms of Isaiah's buddies who go out of their way to make things possible for Isaiah and their kids to have time to play.

Isaiah and his daddy had a big day yesterday. I had to clean a house and go get things for when we get home for surgery. Wanted to be sure we were stocked up on Motrin, Tylenol and dog food! Already stocked up on diapers and wipes over the weekend. Timmy and Isaiah went to the park and had a wonderful time together. Isaiah thinks his swing is not ok anymore so we take him 15 minutes down the road to a big boy swing and he really likes that! So him and daddy had a good time yesterday.

Approaching surgery my nerves are a little uneasy but Timmy and I are doing so much better this time. I guess we have had time to take in the fact that now matter what the outcome of this surgery Isaiah will be ok and better than before. We must move forward and have faith in our God to know he has never let us down and this is no different. My favorite poem is Footprint in the Sand and right now I know there is only one set of footprints as Timmy and I are being carried. For the time being we are just taking in every moment with our little boy and thanking God for the time we have together. Isn't that what we should all do anyways, syndrome or no syndrome.

I want to say a huge thanks for all that is being done for us. I can't begin to list them all but please know that nothing goes unnoticed. There is still so much good in the world and I try to share so people know of all of these things. To list a very few....free tickets for all of us who went to the aquarium, a check in the mail last week to help us through several weeks in the hospital, a year pass to the zoo, diner to Rainforest Cafe the night before, someone who has offered to mow our yard while we are in the hospital and the list goes on and on. Like I said these are just a few and I couldn't begin to list it all but wow isn't this world still full of people who just want to show love to one another. Then there is all of you who pray for my little boy so many times a day. Who pray for his doctors and us. I will never know all who have prayed and continue to lift us and think of us but we feel it in the peace we have. From the bottom of our hearts we want to say thank you for your incredible love for us no matter what expression you have shown. The stresses of our life are fewer because of all of you.

I promise to get up a new slide show in the next few days. I will probably not update until Sunday night as our next few days are pretty busy. It is actually now 10:30 and I started at 8:30 so it takes a little bit for me to get an update up when Isaiah is awake:) Have a blessed week and take time to spend with your family.

Nicki

Sunday, April 13, 2008 10:10 AM CDT

We are at Ann Kelly's house right now. We are staying until tomorrow night when Timmy comes to get us!

We had a really big week. Isaiah had lots of therapy this week and did very well with it. His cousin Nate came to stay a few days with his school system having a few days off. Then on Thursday night Harrison got there. Yesterday we left and came here with them. Just for a short period because we have to get things done for going to the hospital. Friday night Ann Kelly and I were able to go out for a little girl fun! Huge thanks to Sarah for keeping both boys! We had a good time......ended up at a going out of business sale to get Timmy and I a mattress. Ours was awful well to the point my back has been unbearable for several weeks now. Can't wait to try it out! We had a good girls night and Isaiah had fun with his play night!

This week is full of therapy then Levi (cousin) gets to stay a few days with us. This will be therapy in its own as Isaiah watches Levi do things. Next weekend he has a birhtday party for Emma then off to the hospital next Monday. The time has crept up on us. Trying not to get overwhelmed with the feelings of it coming up. I am feeling better about it this time it just doesn't seem like 6 weeks has passed and it is time alreay. Once again the biggest surgery Isaiah has ever faced is upon us. We found out this week his ENT is leaving Vanderbilt which is a huge blow with trach care stuff. Hopefully the next will be just as aggressive with getting the trach out after his surgery. Please be praying for ihs surgery day, doctors and for us as we prepare. I know you guys have been praying already and so many sweet messages this week.

Big news to share for Isaiah this morning. Isaiah has been really wanting water from a straw. He sees me drink and he ask for it with his signs. Well he will open his mouth and I drop it in like a little bird....its really cute. Well this morning he was sitting in a chair by Harrison and was wanting Harrisons cup. I got him one of his own and he put it up and started drinking!!!!! This is a huge step for Isaiah. So now this week he has learned to ride the fire truck, he rides Harrison's zebra and he is drinking some from a cup. So glad we have had this last month to develop and learn new things from our friends. Praying for this development to keep up as soon as possible when we get to the hospital.

Well I need to go and get ready for the morning. Have a wonderful weekend and I will have new pics up around the middle of the week. Still need to put a complete udpate up from our trip earlier in the month!!!!

Nicki

Friday, April 11, 2008 3:33 PM CDT

Only have a few minutes. I will update a little more tonight or tomorrow morning.

Jsut wanted to let all that may read know Isaiah's new trick. Harrison has been borrowing Isaiah's ride on fire truck. Well he brought it back this time. Isaiah kept trying to figure it out. I sit him on it and within a couple minutes off accross the room he went!!!!! Talking about one proud mommy and Ann Kelly. We cheered him on and I got the video camera out in time.

Will update more later. Just wanted to share a quick Isaiah story. He is getting so big and I am sooooo proud of him!

Nicki

Monday, April 7, 2008 8:29 PM CDT

I need to start with saying we have had an amazing day. I have one tired little boy but wow have we had fun today!!!!

This weekend was very busy. We got Allison on Thursday night and got to enjoy a wonderful meal with Donna, Allison and the three of us. Friday was crazy with errands that had to be run. Anywhere from having the oil changed to grocery shopping. Saturday night we went to my parents house to celebrate their birthdays with them. They are 10 days apart so we had a double party!! Sunday was a 95th birthday party for my great grandmother an hour and half out of town. Then it was time for Allison to leave. She was such a huge help and lots of fun to. We can't wait for her to come back some over the summer. She actually watched Isaiah while he napped on Saturday for Timmy and I to run to the barn and deworm my horses. Isaiah loves her bunches!!!

Then today..... we had to start with running to get dog food. Isaiah had a big nap. While he did that I got some yard work done. Then he went out with me while I finished. Before you knew it his physical therapist was here with her 3 girls. Boy did my little fellow have a good time. Susan and the girls stayed for nearly 3 hours. He had therapy and we played and played. We have 10 puppies who are 3 weeks old here so they played with them. We went to see the horses and got my old mare out for the kids to sit on. Isaiah didn't miss out on this either....Ms. Nancy is a little tall for him and he got a little nervous. He loved rubbing on her though. Then we had our normal Monday night crew over. Sammy and Lily were here to play with Isaiah! We ate and then went on a walk. Isaiah rode in his new red wagon with Lily. He was very good at sharing it. A huge thanks to my friend Kyla and Logans League for Isaiah's wagon. He thinks he is really big in it!!! Now he is sleeping and I mean really sleeping!!!! He is so tired but so enjoyed his day.

It is hard to believe we are back to being 2 weeks from tomorrow for a surgery date. April 22nd has come quickly without having a cancellation. So now it is back to preparing for that "day". Harder this time with the warmer weather and watching Isaiah enjoy it so and knowing he will be in the hospital so many weeks. But this is something he must face so we are going into it positive.

Well that is it for now. I will update at the end of the week. Harrison is coming for the end of the week and then we are going with him for a few days. Then we will be back home for next week.

Have a wonderful week.

Nicki

Wednesday, April 2, 2008 9:35 PM CDT

I want to apologize for not updating. A lot has gone on since Friday morning when I put the update. I went to go clean a few houses and was headed to my Grandmother Waltons house and got the call that she wasn't well. I stayed with her until 12:30 and left to get home so Timmy wold be able to go to work and she passed around 3:05. She was 94 and had a full wonderful life. So since then it has been non stop around here trying to find people to help with Isaiah. A huge thanks to my mom and dad, Luke and Becca Pearson and Timmy's brother for making it possible for me to be at my grandmothers visitation and funeral. Isaiah loved having time with everyone....not sure that he missed us at all. Now it is time for me to get my house in order and grocery shopping done! My moms best friends daughter will be here starting tomorrow so that will be helpful. I am ready to have a little fun!

Isaiah got a good report on Monday. Thank you Dr. Huss for getting him in earlier that day for me. His lungs sounded wonderful but his ear is really nasty. We are trying to get a plan for that ear. Last night he had a really hard night but he had several REALLY long days. Hopefully tonight the seizures and fever will stay away. That is it for Isaiah. He has had lots of play time and lots of visiting with people.

You know I am really glad he didn't have his surgery on March 4th now. With the lung issues he has had lately he wouldn't have done well. I wouldn't have been able to have spent the time with the Walton's that I have been able to. And we wouldn't have been able to have made some of the fun memories we have lately!! God does have perfect timing and shows that to us in the most amazing ways. All things are planned for us and we just have to trust in the way it is supposed to happen. I am glad I don't have to try and make things happen so perfectly.

In the next few days I will try to get pictures of our trip up. I will update again towards the end of the week. Happy belated birthday to my papaw who had a b-day Friday and my mom who had one yesterday....love you both so much. Thanks for all your prayers for Isaiah's pneumonia and for his upcoming surgery. Still hoping for a cancellation but know all will come in His time. Isaiah is just getting very frustrated. He wants the trach out and makes that very clear. I will update with all that later in the week.

Have a wonderful rest of the week.

Nicki

Friday, March 28, 2008 7:30 AM CDT

We are home and had an amazing time. I don't have a lot of time to type an update just wanted all to know that. We are already trying to plan a trip back for July!!!! I will update tonight with a complete slide show and all!!!

We will be going to the doctor monday afternoon for a check on his lungs and ears.

Have an amazing Friday,
Nicki

Sunday, March 23, 2008 10:54 PM CDT

Just wanted to give a quick update.

Isaiah is feeling sooooo much better. His color looks good, he sounds good and he is back to getting in trouble!!!! He really started feeling good on Saturday. We kept him home all day long on that day though. He had 2 birthday parties and an Easter party he was invited to. Timmy and I actually were able to get out for a little while on Saturday afternoon. Timmy's brother and his wife stayed with Isaiah for several hours Saturday afternoon. We went to visit at one of the birthday parties. It has been a long week to say the least and it was nice to have a little time. Thanks Chris and Jamie for watching him for us. We then fixed dinner for them and had a great time visiting.

Today Isaiah woke again feeling wonderful. Granted he still has stuff to cough up and things like that but boy does he feel better. Timmy worked today so I went to church with Isaiah. There was only one service and Isaiah was not going to have any part of sitting in an environment with sooooo many people. We last through part of the music. Well we lasted until my sister and my brother in law started singing. Isaiah grinned from ear to ear then was furious his aunt and uncle would not come and get him. You see in Isaiah's world he is always the center of attention when there is a guitar out or someone is singing. So we had to step out. I then let him surprise his daddy with a visit to say happy Easter. Then we went to my moms for lunch and to spend the afternoon. We had a wonderful day with family and celebrating the resurrection!!!

This week we will have a full week. Tomorrow Isaiah's cousin Nate is coming to play. Then on Tuesday we are going on a trip. We have been planning a trip with one of my friends and her two boys. His pediatrician said as long as he still was feeling better to go and have fun!!! So we are going to Chattanooga to the aquarium...staying in a hotel....then going to his favorite restaurant. Basically two days of fun for 3 little boys!!!! We can't wait! Then we will have a few days to rest and do therapy then off to the doctors office. His pediatrician has to check him around the end of the week. We are looking forward to our week and I just pray that Isaiah continues to do well.

That is about all going on with us. Praises for Isaiah's health. He is feeling so much better with a level heart rate. I can't tell you how much last Tuesday scared us....but we are putting it behind us and going on to live everyday to the fullest. Then we have the weekend that represents so much. Our Savior who died on the cross for our sins. We have every reason to live life to the fullest....to bring glory to Him. Happy Resurrection day to you all.

Nicki

********by the way GO WESTERN (WKU to all who watch the NCAA they are from our town and we have grown up supporting this team)!!!!!!!!!!!!!!!!

Friday, March 21, 2008 10:26 AM CDT

2:12 Firday afternoon
******Talked with the pediatrician and we are home for the afternoon! Isaiah is sleeping right now and feeling lots better. He has laughed and played this morning....nice to see him smile. Actually I asked him for a kiss one time and he rolled that little tongue up in his gums and rolled his eyes the best he could and looked at me as to say mom come on!!!! Silly boy. So on with the oral antibiotics and we will see her next Friday if he continues doing well. Thanks for your support. Hopefully my little fellow will continue to improve by the hour! Will update at the end of the weekend.

Isaiah is having wet diapers so that is a plus. Still a very upset stomach but at least he is still having wet diapers. He seems to be acting much better this morning. He gets tired very easily but who wouldn't with all this going on. His eyes look a lot better. I really think the IV dose he got helped him.

His pediatrician will be headed to work soon so I will call her in about an hour. Then we can make the decision on whether he needs another round today. He is active today so I am so happy about that.

Last night he was stable. Actually last night was the better night of the last three. A lot of that had to do with it was his third and final day of his emergency seizure drug. He is requiring a lot of oxygen but his heart rate did fine. When he woke this morning there was blood from the trach and other nasty stuff but he has to get all of that up.

I feel like he is feeling better. I will update here in a little bit on whether we are going to Nashville this afternoon or not.

Nicki

Friday, March 21, 2008 0:13 AM CDT

We are home. We got home around 8:00 after leaving at 11:00....long day.

Thanks to Ann Kelly for letting all of you know what is going on. He does have pneumonia along with pink eye and I am suspecting some type of stomach bug. Needless to say he doesn't feel well. Right now my sister in law, Jamie, is here with me so that I am not by myself. My mom was going to come but my dad has an infection in his stomach where his dialysis go and I didn't want her to leave him although he is doing better. Thanks to Jamie for making sure I wasn't alone to take care of him by myself. We are half way through the night and he is doing pretty good. Needing lots of O2 but his seizures seem to be under a little more control and his heart is going strong! His heart rate is just barely raised.

I am going to get off and have some girl time and get some rest. I will update around lunch tomorrow. Things to pray for: lungs to clear, eyes to get better, diarrhea not to dehydrate him, to stay out of the hospital!!! We may have to go back tomorrow for another IV dose of antibiotics but that will all depend on how he feels when he wakes in the morning. Timmy will be here in the morning and we will decided then. He had a good wet diaper at 10:00 so that is wonderful.

Thanks for all your support and for everyone who is helping right now. I am a little shaken after the other night which isn't like me. Thanks to friends and family who never let us down!!!

Nicki

Thursday, March 20, 2008 5:24 PM CDT

This is Ann Kelly, Nicki�s friend,

I just spoke to Jenny who is with Nicki and Isaiah at Vandy. Isaiah has pneumonia in his left lung and has aspirated in both above that. They have started him on an antibiotic and trying to get his fever down right now. They will be going home tonight and checking back with the doctors in the morning. Please pray for our little friend as the nighttime approaches and he seems to always get worse at night. Also pray for Tim and Nicki as they care for him.

Thursday, March 20, 2008 8:14 AM CDT

I only have a very little time this morning.

Isaiah's ear is doing better. THe ointment worked so it must have been as the pediatrician thought an allergic reaction to something.

Two nights ago Isaiah had a really bad night.....thanks Carol for talking to me until late!!! Timmy was holding him and he was having lots of seizures. His heart rate was 200+ or would go down to 180+(no none of these numbers are good) Then his heart rate dropped to 45 and stayed there for several minutes. We have never had that to happen and it was a little scary. Yesterday he did just ok. Temp from the night before wasn't as bad. Last night he started the heart rate stuff but it never got as bad as what it did the night before. Long story short it has been a little rocky around here. As soon as one of my friends can get her things done we are going on down to see Dr. Huss. Now I can't hold him without him screaming. Nothing makes him comfortable and he has multiple other symptoms.

We should be able to leave by 11:00 today so it will be much later in the afternoon before I update. Please pray she can find what is wrong with him. He is just awful this morning.

Nicki

Friday, March 14, 2008 10:06 PM CDT

Well today has been a little crazy. We have had an unexpected run to Nashville with Isaiah.

So my grandmother and I had a day planned for today. It all started the way it should have. Isaiah went to my sisters we went to breakfast did a couple other things and went back to get him. From there we should have gotten his haircut, come home for therapy, and gone to Walmart then to a couple funeral homes. Well when I dropped Isaiah off at my sisters I told her to keep an eye on his ear it seemed red and a little bit of a rash. Well 1 1/2 hours later I got back and it was worse. So I called his pediatrician and she said to bring him on down. The problem is we know there is fluid in that ear behind the ear drum and they just suctioned them on Tuesday. So I looked at mawmaw and she said she was ready to go with me. So off we head to Nashville. He was miserable in the back. You could tell his ear hurt, he was tired and his car seat really needs to be replaced. It seemed like we would never get there. We had to have gas, I had to stop to suction then to turn on the DVD and the list goes on. Did I mention his pediatrician is off this week.....so guess where we end up you guessed it her house. Have I ever mentioned I just love this woman!!!! We got there and the ear looked worse. It was red and hot to the touch along with this little rash. He was screaming....actually Dr. Huss's son informed her Isaiah was crying and she needed to help him....I just love kids! So she starts to examine the ear and what we think is wrong is that he is having some type of allergic reaction to something. It is just his ear though. No new laundry detergents nothing. So we are blaming it on the dog!!! He went outside yesterday and had a blast. When he was outside he played with the dog some so we are hoping that his big chocolate lab had something on her that aggravated him. I can't think of what else it would be. His ear drops are drops he has used before and nothing else is different. A mystery I guess but his daddy will like that we are blaming it on the dog....he just loves all of our dogs!!! Jokes aside this is really painful for him. He is crying a lot with it. Benadryl seems to help and Dr. Huss gave us some cream. I just pray in the morning after a couple doses of meds he will be better.

After we left her house he started bouncing off the walls. Benadryl does this to him! So I decided we would stop at Babies R Us and look at car seats. Isaiah has been in the same one since he was like 8 months old. The problem is Isaiah is in his a lot for long periods of time and just recently does he try to move around in it. Before he would sit in one spot. Well Isaiah's back has a curve to his spine and that much sitting he has literally worn the cushion down to where it will make a red spot on his back. We have been putting a blanket or something to soften it but I had enough on it today. So here my grandmother and I go off to look at car seats. Isaiah still needs a 5 point harness and will for some time. There are very few that go up to 65 pounds with a 5 point harness. Most stop at 40 which would give him 7 more pounds. So I found one and then realized it was just like Harrisons. I called Ann Kelly to see what she thought of his and get her opinion on the seat. So then I got the demo seat down and got Isaiah out of the cart to see if he liked it. Boy did he!!!! I strapped him in checking sizes.....room for growth all that stuff. Well I unstrapped him and the next thing I know he has both arms back through and he is trying to buckle himself back in. I told him he could get out of it and went to pick him up. He turned that little head as if to tell me no and pushed me away and then looked like he would cry. These expressions couldn't have said anymore "mommy I really like this one....it fits me great....can I please have it" So I got him back in the cart and got the box and loaded it. I told him there was his new seat and I am not kidding her turned around and kissed the box. He was so excited. I can not tell you how proud I was of him to be able to express so obviously how much he liked the new seat. It was an emotional moment to see him examining it in such detail and deciding he liked it. He made a choice and picked out his own car seat.....I just had to come up with coupons and a debit card!!!!! HMMMM people say that happens lots later in life!!! When we got to the car I put the box in the van and my grandmother had to turn him to show him what I was doing. He almost panicked thinking he lost it!!!

We are now home and safe. Our day didn't turn out like I had planned but once we got him comfortable we had a good day. My grandmother and I spent time together which is always to be cherished and Isaiah is home safe with a new seat!! Isaiah is finally asleep and I am getting ready to give him some more medicine. He got really fussy before bed but he was due for his medicine.

I will update at the beginning of the week with how his ear is doing. Have a wonderful weekend and enjoy the little things in life even if it is just making choices for yourself. It truly is a blessing to be able to do even those type of things.

Nicki

Wednesday, March 12, 2008 1:10 PM CDT

*****Noah has arrived!!!! He is a beautiful healthy little boy. I have update Logan's web page.....link at the bottom. Thanks for all of your thoughts and prayers for them they are so proud of him!!!!

Now for yesterdays update.....

We have been very busy with therapy sessions and appointments. Yesterday we had to be in Nashville at 8:30 and with the time change that really made things interesting. We picked my little sister up in Franklin and headed that way. He got his little ears suctioned. He once again stopped the cath up. The right ear has fluid behind the ear drum. The left ear just had lots of stuff in it. He didn't feel he needed to go into surgery before the next surgery but he did express this needed to be taken care of. So hopefully sooner than later new tubes will be placed. He seems happier today after having all of that stuff taken out.

He had physical therapy yesterday then today he has had 2 sessions of therapy. The time change has Isaiah all messed up. He thinks going to bed at 9:30 or later is what he should do then he has had to get up early for doctor appointments and therapy so he is really messed up! Yesterday he only had a 15 minute nap but today he had almost 2 hours so that was better!

So over the weekend we had 8 inches of snow. Well I had to take Isaiah out for just a little while. After 5 minutes I decided to bring him back in. Let me tell you he did not like it. He put his feet on the door to try to keep me from bringing him back in. It was nice to see him want something so bad though. He had his gloved hands all down in the snow was eating it and everything. It was amazing to watch him in the snow and know how much he enjoyed it. He is such a ham anyways!!!

That is about all that is going on for this week. Today is a really pretty day so I think we are going out to swing. The wind is very low and with a hood I think he will be fine. Yesterday we went out for just a few minutes and fed the peacock and saw the cows. I am really excited about the warmer weather and having some fun with my little guy. He loves outside and this summer I think we will probably do lots of it. Now that we can go we can go to the park to swing and slide. He loves both of those things!!!

We have not heard from Vandy this afternoon so that means no surgery this week. Maybe next week will bring a day. All I do know for certain is that we are going to enjoy all of our time up until then. Trying to focus hard on not worrying about tomorrow.

I want to end with asking all of you to pray for my friend Kyla (Logans mom). She called earlier to tell me they are starting her labor this afternoon. Please pray for a quick delivery. I know she must be oh so nervous right now but once she has little Noah in her arms that will all be better. I plan on going there as soon as Timmy gets home today.

We are going to enjoy the sunshine now!!!!

Nicki

Monday, March 10, 2008 1:39 PM CDT

We will have to wait until tomorrow to have his ears suctioned. Our appointment is at 8:30 so I should be able to update around lunch.

I have lots to update though. We had 8 inches of snow here which is a first in right at 10 years so Isaiah had fun over the weekend. Lets just say for the child who likes to eat nothing thought eating snow was wonderful!!! HMMMMM next time I will have to make some snow cream!

Big update coming tomorrow. We have been VERY busy with errands and things like that today. No news on a cancellation for this week. Keep praying!

Until Tomorrow,

Nicki

Thursday, March 6, 2008 8:23 PM CST

Sorry for the lack of an update but I did not talk to Dr. Kelly until this afternoon.

So here is where we are. I had a list of probably 6 questions for him and he was sweet enough to call and talk for about 10 minutes about them. He was very apologetic about getting sick. I reassured him we were very grateful for him to take Isaiah's best interest to heart. He is ok with doing the surgery on a cancellation date. I wanted to be sure he would be prepared and that wouldn't be to short of a time frame. The whole debate between April and June is no longer a debate. I got to thinking June would mean Isaiah would have to come into a whole new crew of residents who would care for him on the weekends. Also June/July would put us around Christmas getting the fixator taken out. Surgeons aren't on duty a lot around the holidays and we don't want to put ourselves in that spot. SOOOOOO that means the scheduled date is April 22nd but we are praying for a cancellation still. I talked to him about us wanting him to be home for my little sisters wedding. Dr. Kelly thinks this is very important. He has always been big on making sure Isaiah is home for family stuff and he seemed to think Isaiah ringing a bell to start the wedding was very important. I am glad he finds things like this important. He said he thought that unless Isaiah had major major problems he would be home in 6 1/2 weeks. Dr. Kelly is really hopeful we will get a cancellation date also. He seems ready to get this behind us also. The sooner we do this the sooner the fixator is out and the trach can be capped to see if he can be without it. The problem with figuring all of this out is that you have to look at the big picture. I apologized to Dr. Kelly for looking so far into everything and trying to plan it all but he told me he was really glad I had thought so much about it and it all made lots of sense.

I talked with Dr. Cofer's office. She is fine to come in on a cancellation if we need her to. His ears are really bad right now so I will be glad to have them done. We are actually going to try to take him in on Monday to have them suctioned and have his pediatrician take a look. This morning he just screamed with it. He has been in a great mode this afternoon though.

So that is the plan. I hope it made a little sense. Specific prayers: for a cancellation to happen so we can get the appointment, for Isaiah to stay well (and Dr. Kelly!!!), for us to be patient and for all involved in the surgery whenever it will be.

I will update on Monday after we take him to have his ear situation evaluated. I will update before then if there is a cancellation. I know it is hard not having a for sure date to pray for, or at least it is to us, but God knows the date we are praying for. Have a wonderful weekend. We have Ann Kelly and Harrison here right now. They go back tomorrow but it has been a wonderful break in such a weird week. Thanks to them for coming to make us laugh and smile. Speaking of laughing..... tonight I look over to see Harrison pouring Sprite in my tennis shoes, guess he thought I needed something to loosen me up a bit. I was on the floor laughing...Ann Kelly didn't think it was as funny!!!!!

Nicki

Tuesday, March 4, 2008 5:56 PM CST

Let me start with telling you how amazing all of you are. So many guestbook entries yesterday with prayers and thoughts then so many to support our day.

I'll start with yesterday. We got to go to the zoo for about an hour and half. The rain started moving in so we had to leave. Isaiah loved it for the time we were there. We then went to the Holiday Inn....checked in and let Isaiah play. Then we went to the Rainforest Cafe with Katy and her fiancee. Isaiah had an absolutely amazing afternoon. We got back to our room and my parents had the room next door so we visited for a long time. Sleeping was something we did little of last night. Isaiah slept well in between mommy and daddy but Timmy and I seemed to stare at each other all night. At 5:00 the alarm went off and up we go to start getting ready. At 5:10 I see a 615 area code number and that is when the day really began.

I heard Dr. Kelly's voice and knew something was wrong. He said he was sick with flu like symptoms but kind of viral chest stuff. He said he would do the surgery but was afraid Isaiah would catch it because the next few weeks he would be working so close with him. He told me if Isaiah were his child he would not perform the surgery. After grasping at straws that was all I needed to know. I hung up the phone and just didn't know what to do. For those that don't know my personality I have to have a plan for everything and want things to happen in a certain way. HMMMM did I have to come out of my shell. So here we go calling everyone that was supposed to come down...or those that we knew of. We have only had one call so far with someone there looking for us there.

So the obvious is that this wasn't in God's plan for Isaiah. Today wasn't the day. We are very accepting of that. It is just that this is such a let down....you get yourself so ready that you are just ready to get it done. Timmy describes it as a kick to the gut and that is what it truly feels like. We were ready to get this part of our life behind us and let Isaiah have a whole new start with some things. It has been hard for me all day....thanks Sherry for reminding me of my verse. Now the problem is when does Isaiah have surgery.

Here is the problem and please be praying for us to know what to do because we have no idea. We are at the top of the cancellation list which is what I pray will happen. Oh how I pray this is what is in His plan. We really need Isaiah to have surgery no later than the first of April. The thing is my little sister gets married June 7th and my other sister graduates college the middle of May. Then his 2 primary nurses will be gone the last few weeks of June for one of them getting married. The next available appointment is April 22 and I am afraid this is just to late. I really don't know if he would be out by then. We could wait until the first of July but that just seems so long away. Isaiah will be even older then and it will hurt him even that much more. I don't know what we are going to do. We thought March 4th was the day but it wasn't in the master plan for Isaiah. That we accept but now we pray for our Lord to guide us in the right decision. The other problem with July is that it will probably mean getting the halo taken out around the holidays and who wants to plan it where it will be then. I think I am going to call tomorrow and try to talk with Dr. Kelly. I just really need to ask a few questions. I am so thankful for all of the prayers everyone has said for him because whether he knows it or not our Lord and Savior lead him to the correct decision he made this morning. Dr. Kelly is a perfectionist and it was really hard for him to call I could tell. He was sick about it. I respect him for being the one to call and not having a resident call....he is just a special surgeon and him and Isaiah have been through a lot.

So please pray for us to know what to do. My heart literally hurts right now with the anxiety of not knowing what it right. I first and foremost want what is best for Isaiah and I know as long as this surgery is done by December that need will be met. He has to have it this year but the longer we wait the older he will be and the more he will remember.

We are putting his bags with his blankets that were made for him, all of the toys, cards, and money that was sent is also being put in the extra bedroom to wait for the big day. Thanks to all who have done all of these nice things. If we need to go we want to be ready. A huge thanks to friends from church for providing meals for the week and groceries to get us by on.....you guys never stop amazing me. For all of you who have prayed so hard for this keep praying. We don't have an exact date but we know it is soon. You guys have been wonderful to us with your online support. From the bottom of our hearts thank you.

This is really long and I just hope it makes sense. Isaiah is doing great just in the floor playing! I will update tomorrow with any new news I might have. Praying for a cancellation.

Nicki

Tuesday, March 4, 2008 5:17 AM CST

This is Nicki. We have some weird news. Dr. Kelly has the flu and no I am not kidding.

THe surgery is off......no words for what we are feeling right now.

Will update when we are back in Logan county.

Sunday, March 2, 2008 10:30 PM CST

OK life has been very busy! Taking a few minutes before heading to bed to update!!!

Well boy have we been busy. All of our days have been filled with activities and lots of time with family and friends. On Saturday Timmy and I did farm work then went out for the evening with friends. Today we actually had the house open for people to visit if they had called and wanted to. It was nice and relaxing for me and Timmy. At church this morning our pastor said a beautiful prayer for Isaiah. Overall our days have gone by fast but have been wonderful.

So this will probably be the last update before surgery. I will try to update sometime tomorrow but won't have connection to the Internet. We leave at 6:30 in the morning....first going to see Dr. Kelly then off to have blood work then off to meet with the anesthesia team. After that if it isn't raining yet we are going to the zoo, most likely we won't be able to go but we will see. Then tomorrow night we are headed to the Rainforest Cafe. Isaiah loves it there.....not for the food since he doesn't like eating but for the environment. When they have the storms he just laughs and loves to watch it. Then we are staying tomorrow night in Nashville. We have a room just blocks from the hospital. My parents are staying there with us. This will eliminate us from having to leave so early. For all wanting to know a time to start praying.....around 7:30 is when they should begin. First the ENT will put in new tubes and run a bronch to check his airways then the plastic surgeon will begin. As I said before the surgery is expected to last 10-12 hours. Isaiah will lose a lot of blood but has 8 units standing by.

Now for those wanting to know how we are. Isaiah is spunky as ever and sadly enough there is no way to explain what Tuesday holds for him. I wish we could explain it and he would understand that it is what has to be done and Mommy and Daddy are handing him over to help him. Please pray that somehow he will know this.....I just pray he knows how much we love him and how much we hate it he will be in sooooo much pain. Timmy and I are doing ok. Like I said before we have had a peace about this for some time but you can't help but to hurt inside and be a little anxious. Isaiah will be in the hands of the great physician and only through Him will this surgery be effective. We have prayed for the doctors and everyone with the surgery. Now we have to trust. Yes we pray that our will and God's will would be the same but we are excepting of whatever His will may be. It is so hard to think of my baby not looking the same ever again but he won't. That little face I love to rub will never again look the same. What we have to look forward to though are the amazing things that will happen for Isaiah after the surgery. As we leave tomorrow please pray for safe travel and for all of our family and friends to also have safe travel. The next few days will be very.....we are such weak people but my Lord and Savior will give me the strength needed for the day. I feel more than ever right now that He is carrying us through this. It will be hard to hand my baby over Tuesday morning and it will be such a long day but at the end of the day it will be ok.

Well I am rambling now but to be honest I can't keep my thoughts straight. I will update Tuesday morning once Isaiah is taken from us. Then they give updates every hour or so and there will be an update after each doctors update.

Thank you ahead of time for all of the words I know you will leave in the guestbook to help us through these next 4-6 weeks. Thanks for the love and support you show us. What an amazing network of friends you all are.

Until Tuesday,
Nicki

Tuesday, February 26, 2008 10:30 PM CST

Isaiah's first time to sit by himself in the snow. He liked it but couldn't stay out long. He has to stay well for next week and the wind is nasty here.

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What is this stuff mom and what do you have on my hands!!!!

Wow it is 10:30 and I am just updating....the day has flown by.

We started our morning with PT. Isaiah did somewhat well with it. He just seems a little grumpy in therapy these days. I often wonder if he feels he is a big boy and thinks he can do it on his own! HMMMMM don't know where he gets that from! His PT is very patient and did what she could. Tomorrow will hold 2 sessions of therapy and then off to have his picture taken.

I went over the fun things from the weekend but don't' think I mentioned the challenges we faced. This past weekend Isaiah had 2 really rough nights. One he was up most of the night and burning up with Fever. The next we was with the same fever. Then during the day he was fine and his normal silly self. He had more secretions and things but besides that was doing well. I was a little puzzled. By Sunday night he was doing better. For these reasons I was really looking forward to seeing the docs today. First we went to ENT to have his ears suctioned. Well he plugged the suction cath with all of the junk in his right ear. The left was much better but still needed some care. Next Tuesday he will get his new tubes and a whole new setup for his face so hopefully this will help. Then we went to pulmonology. I was a little concerned he would think his lungs were to junky. Well he said they sounded wonderful. He could tell where he was congested in his upper airway but was happy with him. I was so excited leaving the appointments. Two good reports exactly one week before surgery.

We then had Isaiah a real surprise. We went to his pediatricians house for him to play with her boys and have dinner with them. Boy did he have fun there. He truly loves Dr. Huss and was as happy as I have seen him in several days. Her boys are soooo cute and played with him so well. Then it was off home and guess what it was snowing! We did well until we got about 25 minutes from home then it was kind of crazy. Just a little slow and now it seems to be snowing More. Guess what that means for my little guy.......pictures in the morning!!!! I always want a few snow pictures every year and thought I had missed my chance but it looks like there may be a couple inches by in the morning.

Well I need to get some things around here done before I can get to bed. Just wanted to take a minute to celebrate 2 good reports and a wonderful afternoon with friends! We have one week and are living every day to the fullest. Clinging right now to one of my favorite verses and not worrying about tomorrow and staying focused on today! I will update on Friday with how things are going. I will say we are a little nervous and ask you pray us.

Hopefully tomorrow there will be new pics of Isaiah playing in the snow.

Nicki

Monday, February 25, 2008 9:54 AM CST

Well we had a big suprise this weekend. Ann Kelly and Harrison decided they were going to stay with us on Saturday when we went ot dinner with them. We were so excited!!!! We have had lots of fun. They go back today but it has been a good time for the boys to relax and play together. So glad the boys have had time together.

Isaiah had a huge suprise yesterday when he came home. His sidewalk had balloons lining it and several friends from church were here. Well you know how much Isaiah loves balloons!!!! He about lept from my arms.....honestly it was all I could do to hold on to him!!!! Then I get a box with all of your prayers in it. This has meant so much to us....I want to say thank you. We are going to take the folder with the prayers in it to the hospital to read some everyday. A huge thanks to friends from church and the Acteens for participating. You guys will never know how much this has meant to us.....your love and support for us in this time is amazing. Now Isaiah has balloons to enjoy all week....and we have prayers from you all to read. I can't believe everyone kept it a suprise....aren't you all good!!!

I am going to sign off now and will update tomorrow after the appointments.

Again thank you for showing such amazing love to us. There is a new slide show up from yesterday and weekend fun!!!

Nicki

Friday, February 22, 2008 10:33 PM CST

Now for the update and hopefully it won't delete this one!!!

Isaiah has had a very good week. His little temper has been showing a little this week. He has learned to throw really good temper tantrums. Then the next minute he is so loving and blowing kisses. When I describe his behavior for some reason people keep laughing and saying he is 3!!!!! Hmmmmmmm 10 more months. No seriously it doesn't bother me I am just thrilled to have normal three year old behavior although we are working on manners and how to be nice to people.

He has felt well all week but today has been a different story. He has done well all day with off and on asthma attacks. He started that last night. I am hoping he just got himself all worked up and he is going to work through this. He has a temp right now but it could be that he got himself worked up and he is having seizures and that is causing the fever. I don't know I am just praying for healing from all of this tomorrow. He can't get sick right now....to close to surgery.

He has had a good week. We went one day to my moms new work to have lunch with her and meet her new friends she works with. Today was another blood drive for Isaiah. One of the 4 giving for him was Harrison's dad so it was a good excuse to get a play date with Harrison. The boys played and played today and had a great time. Tomorrow Sarah comes to play with him then Harrison is coming back for just a little bit tomorrow evening on the way home. Timmy is out of town this weekend so pray for safe travel for him. Isaiah's Uncle Jeremy came down tonight to look at the puppies to decide on one and we all went out to eat. Isaiah had a lot of fun until his asthma hit him at the end.

This week we have 2 appointments on Tuesday. First to have his ears suctioned then to see his pulmonologist. I will update when we get home from that days adventure to see where we are at with things. Please pray for his asthma symptoms to calm and the treatments to make it goes as quickly as it came. I know you are praying for the surgery and thank you for that. I am going to go check my little fellow now.

Nicki

Monday, February 18, 2008 12:31 AM CST

New Slide show.

It lost my update.....will update in the morning.

Monday, February 18, 2008 12:31 AM CST

Isaiah is feeling so much better. His cough is almost gone. His secretions (stuff coming from the trach) can still be a little heavy at times and thick at other times. Hopefully this will all level off. This is his last day on the antibiotic so I am hoping it is all gone.

Next week he has an appointment with his pulmonologist and I am going to make an appointment for him to get his ears cleaned out. His left one has lots of white stuff coming out of it. I am sure he is fighting them being infected but like I said he is still on an antibiotic. I don't know if I mentioned before but hopefully this midface will help his little ears.

Well we are officially 2 weeks off from surgery. My how time is going so quickly. I am trying to stay in our normal routine and get things done but all I honestly want to do is snuggle up with him for the next two weeks. Obviously that is not possible so we will keep on getting things done and staying busy. I was looking at my calendar this morning and trying to find some open dates that some have asked me about and thought man we are booked!!!! Timmy has to leave town this weekend. Not really looking forward to that.....I was hoping for a weekend with just the three of us before surgery. The next weekend will be full of getting things ready. On that weekend....the weekend of the first Sarah (Isaiah's respite provider) is sweet enough to stay all day so we can get things on the farm ready for us to leave. Then we have a date night that night since we will be in the hospital for awhile and unable to get out much when we get back. So we are getting things together but I can't help but feel the walls are closing in a little.

On a funny note.....I think I forgot to mention that our little inside dog had puppies. The puppies are four weeks old and have to go to the basement to a pin today. They have learned they can get around the house. Well Isaiah does not like the puppies. He thought the lab puppies we had were great but the miniature Australian Shepard puppies no way!!! This morning he was getting in to all kinds of things and the next thing I knew 2 of the 3 puppies were in his lap. They are really small (they will be between 8-15 pounds or so grown) and you would have thought the world had come to an end. He was pushing them and trying to make them go away. They thought he was playing and that really made him mad. He has his own little personality and wants things to go the way he wants them. I was glad to see he had to get out of his comfort zone. He then went to his bug dump truck and started playing. I put the puppies up afraid of what the big wheels might have done if he got ahold of one!!!!!

Well I am going to sign off for now. Isaiah just went to sleep. He only sleeps for about 45 minutes to an hour now so I need to get my shower and walking done! Have a wonderful week and I will update around the end of the week.

Nicki

Wednesday, February 13, 2008 8:41 PM CST

Isaiah is feeling better. Sorry I haven't updated but Timmy has also been sick so it has been a little busy. Timmy is starting to feel better also.

Isaiah's infection seems to be better the best I can tell. His coughing is getting better and his temp is staying in the normal range. He is more active and wanting to do more. There for a few days laying in the floor was all he wanted to do. So glad my little fellow is feeling better.

Today we woke up to snow and schools being called off so he didn't have any therapy. Every year we have taken him out a little in the snow but we just didn't this morning. It was about 20 degrees and with him just being sick it wasn't worth it. I am not going to chance getting sicker for a few pictures although I would have loved to have had them. We have probably missed our chance. Anymore in KY it doesn't seem to snow like it used to. There was probably less than an inch but that is snow for us. Hopefully we will get more before March 4th and will be able to take him out in it. I would love to see his reaction to sitting in it. This is the first year he could sit in it and play! Hopefully more will come and he will be completely well.

That is about all that is going on around here. We have been busy with lots of different random type things. Friday night Isaiah get to spend the evening with his Uncle Drew and Aunt Amanda while mommy and daddy go on a Valentine's date. This will be the first time in a while that we have gotten to go out for the evening on a planned date!!!! Katy emailed today and it looks like Isaiah might get to go spend one evening with her. She misses him and I know he misses her so it would be good for him to spend a few hours with her before surgery. We are just trying to get time in with everyone and visit with some friends. We are 2 1/2 weeks away from surgery and it seems to be coming up on us.

Happy Valentines Day to everyone. We will have pics hopefully tomorrow with Isaiah and his valentine gift!!!

Have a wonderful rest of the week.

Nicki

Sunday, February 10, 2008 7:49 AM CST

Well it looks like we may have the answers we didn't have before. Isaiah's trach results came back that he had a trach infection. Sometimes Isaiah's trach cultures can be positive and nothing is wrong. This time all of the numbers are elevated and more than one thing is showing it. Hoping this is what caused the weird episode the other night. He has actually never had a bad trach infection so maybe his little body didn't know what to do with it.

He has been in a better humor lately. He is back to wanting to sit more (for the past few days he only wants to lay). Yesterday my mom came and sat with him for a few hours so Timmy and I could play around on the farm. He did pretty well for her. Last night him and daddy had a date night. I went to town with my mom and we shopped for a little bit. We had fun and I think my boys had fun with there night also! Today he seems to be really junky. I am hoping that the huge amount of secretions will go down some today. It seems like I can't keep him clear. He started his antibiotic last night so hopefully that will help some also. I think they are going to want to see him this week. We were hoping to go to his Uncle Drew's b-day party today but I don't think I will be able to go anywhere with his secretions being so aggressive.

I will update in a few more days. Now we have something to pray directly for so please pray for this infection. Trach infections can get really nasty and hopefully he has let us know about his early.

Nicki

Friday, February 8, 2008 1:48 PM CST

Well we have all had a little sleep!

So here is what happened last night. All day yesterday afternoon Isaiah was very aggitated. Around 5:00 I just noticed how cold he was. I put thick socks on him, warm PJ's even a blanket. By later in the evening his temp was hanging anywhere from 94.2 to 96 which is not normal. After several hours of this I called the pediatrician. Bless her soul she hung with us all night!!! She felt he needed to be seen in the emergency room immediately. My sister in law was going to go with us but Timmy decided to leave work and make the run. One of Isaiah's therapist came over to sit with him while I packed everything. I went ahead and packed incase we had to stay. Thanks Kellie for sitting with us until TImmy got home.

When we got there his temp was still only 96.0 after sitting in the carseat in a very warm van. They determined he was hypothermic and started putting him under warm blankets. My child who can not stand to be covered cuddled right in under the blankets. They performed about every test I can think of. So far everything has come back completely normal. His chest congestion is of a little concern but he is working that out. So around 6:00 this morning they decided we could go on home and just have to keep in contact with the pediatrician. I thought that was kind of funny being I am the mom calling her cell phone last night going what do I do!!! His temp has been staying stable. It is on his lower end of normal which is lower than most. I had no idea that a low temp could be as concerning as what it can be. We have never dealt with Isaiah's temp dropping out like that before.

Today he is just really tired. We all went to sleep a little after 8:00 when we got home but we went ahead and got up a little after 1 so he would want to sleep tonight. He doesn't want to sit up as much and stuff like that but hopefully that is all because he is tired. Thanks to all of you who lifted us in prayer as we traveled and continue as Isaiah's little body regulates everything. Maybe his little body just got confused I don't know. I just give thanks that he is doing better now.

I will update tonight or tomorrow with how he is feeling.

Nicki

Friday, February 8, 2008 8:02 AM CST

We are home after a very long night at the E.D. We will update later on today after we try to rest. Nicki and I have been up for 28 hours and Isaiah only slept 30 minutes last night. He is doing okay right now. More details later.
Tim

Thursday, February 7, 2008 9:55 PM CST

Hello, This is Nicki's Friend Ann Kelly.

Nicki just called to say that they are on their way to taking Isaiah to the Hospital. His body temperture has been low all day and they have not been able to get it above 94 or 95 degrees. His doctor wants him to come to the ED for some testing.

Nicki wanted me to let everyone know what is going on and she will update when they know somthing, please tuck this family in your prayers.

Ann Kelly

Monday, February 4, 2008 8:33 AM CST

Here we go starting another week!!! Wow its going to be another full one with therapy.

We had a good weekend. Saturday Isaiah and his Daddy had some special time with just the two of them. I went with my sisters and mom to look for my sister a wedding dress. Then all of them went to get their husbands or fiance and we all went out to eat. It was a lot of fun. They all came back here afterwards and we visited for awhile. Isaiah was sad when it was time for them to leave but by 9:30 it was way past his bed time.

Sunday we stayed home from church. A few kiddos have had RSV and we are trying to give that a chance to pass. That is the last thing Isaiah would need 4 weeks before surgery. Then I went to my friend Kyla's baby shower (Logan's mom). I was a wonderful time with old friends and to celebrate baby Noah! We are so glad Kyla and Brandon will have the opportunity to raise another child. Then it was home for the big game. My husband was beyond excited!!! By the end of the game I thought he was going to fall from his seat. He really wanted the giants to win. When the phone rang after the game we both laughed and knew it was my dad calling to celebrate with TImmy!!! Me hmmmm it just seems like a bunch of men running around a field but I do try to humor Timmy with at least sitting and watching! We did let Isaiah wear his NFL PJ's for the event!!!

So our weekend was a little busy. This week Isaiah gets to start with extra therapy. Not only will he have the schools coming out but he will also have another company to provide therapy. His old PT can come out through them as well as his new Speech Therapist. He will have a new OT but I think he will be fine. He love his new preschool teacher. She left his ABC song for him to listen to and he loves the song. He grins from ear to ear. This week we don't have appointments but will be watching his ear. He is really pulling at it. Hopefully he is just playing with it but we will see. We actually are appointment free until the end of the month. We are plenty busy without them!!!! I am actually trying to make sure things don't get to busy. I want to be able to enjoy my time with Isaiah and make sure him and TImmy have plenty of one on one.

We are getting a little nervous about March 4th. I think this is normal though. We have taken him to the 3rd floor and handed him over so many times but I just don't know how I will do it this time. I guess I need to not view it as handing him over but view it as someone else will cradle him under our Father's Hands. I think what bothers me so is the fact they will be changing the look of him so much. This will be the most dramatic change in his looks that we have ever seen. He will actually have a nose to breath out of and eye sockets for his precious brown eyes. His first surgery changed him a lot but this will be more. Timmy has taken off the Sunday before his surgery so we can all go to church together and then have time to spend with family and friends that afternoon. His pre-op is on the 3rd and hopefully it will be in the 60's that day. If so we are going to take Isaiah to the Nashville Zoo then that night take him to his favorite place to eat. Not that he eats but he loves the atmosphere of the Rainforest Cafe!!!!! We have only been there twice but he just laughs and claps. Trying to do things that day to make it Isaiah's day!!!!!

Well I thought I didn't have anything to say but there ended up being lots!!!! I will update at the end of the week.

Tuesday, January 29, 2008 7:39 PM CST

Well I would have updated before now but wasn't able to. In the winter months my fingers are really bad about busting open and 4 of my 5 on each hand have been bad for several days. Needless to say it hurt to bad to peck away on the keyboard!!!!

Isaiah is doing much better. He has had a wonderful day today. His chest seems to be clear and his is back to being his strong willed little self!!! He has such a personality and knows what he wants!!!!!

They got his blood levels back and they were in the normal range for his medications. His ears seem to be building some but hopefully not. Overall he is just doing wonderful!

This weekend Isaiah was able to have friends over for the night. His friend Emma stayed here on Saturday night and Clay and Will decided to join her. All were going to stay but Clay and Will decided to go home with their mommy. Maybe next time!!!! Emma stayed all night and seemed to really have fun. Then last night 2 other friends, Lily and Sammy, came over for several hours!! Isaiah loves having his friends and it is huge for his social skills. He is starting to get into a mine stage so having kids ranging from 9 months to 4 years is a good thing for him. He has to learn to play correctly.

That is about all going on in our lives right now. No doctors appointments just time to be together and enjoy each other before March arrives. Wow it will be here so quickly. We have lots of fun things planned. We have an overnighter planned with Clay and WIll again...with their mommy staying!!! We are going to Harrisons for a few nights later in the month. All kinds of things! I am being really careful right now with Isaiah. RSV is going around in our town right now so we aren't getting out unless we have to, like yesterday morning when I found we only had 2 diapers. Hummmm that was a must run to Wal-Mart kind of panic!!!! We are trying to be careful but enjoy the next 5 weeks, it will be precious time.

May all of you have a blessed week. I will update on Sunday night with all of our weekend adventures!!!

Nicki

Thursday, January 24, 2008 7:08 AM CST

Wow where has the week gone?!?!?!?

Well we had a day full of appointments yesterday. We left the house around 11:30 and got home around 8:30 last night. I had two appointments. First I had an ultrasound of my thyroid then I saw the doctor. Great news.....he has released me with my thyroid. He said the nodule isn't growing and it was just a big deal over nothing! We were excited. I hadn't been real worried about it but poor TImmy had been so it was a huge relief for him!!!

Then we went to have Isaiah's ears suctioned (or Timmy did while I was at my appointment....) There was nothing to suction, they were clear!!! The hole is still in the drum and acting as a natural tube. So hopefully they will stay that way. We will have to keep a close eye on them.....just from his history they usually do not stay this way. The nurse practitioner was going to email his ENT with the great news! So that was the good part of Isaiah's day. Then comes the other.... When we left home Isaiah started acting funny. Timmy and I both said we hoped he was just tired but oh no. By the time we got him to the pediatricians office for the blood draw (last appointment of the day) his chest felt awful. She listened and said he didn't sound good but it wasn't asthma stuff just junky in his lungs. He was getting it up just having a lot of nasty colors in the stuff he was getting up. It was obvious he didn't feel well. She gave him an antibiotic that treats things like walking pneumonia and stuff like that. Who knows what it is and we caught it REALLY early. Last night he felt really bad but this morning he seems to be feeling better. He has some Tylenol and antibiotic in him so he is good. His chest actually feels pretty good this morning.

After a long day we are home and have nothing going on today. I have to share a funny story. We are sitting in the pediatricians office and it is almost closing time for them so I am trying to answer questions and get Isaiah done so Dr. Huss doesn't have to stay all night. Well here we are she is listening to his chest and Timmy's stomach starts to growl. Like a little 5 year old he looks over at us and says I am just so hungry. Well Tara (Dr. Huss) feels sorry for him so she stands and pats him on the shoulder and says I'll be right back. Back she comes with juice and 2 treats. I was laughing so hard I could have fallen from my seat. Then she informs him she feels like a flight attendant! Then we were able to get back to Isaiah's latest problem at hand. For all of you wondering yes I feed my husband plenty....he had just missed out on an afternoon snack because we were back to back with appointments and thought he would starve!!!!! Isaiah and I told him we thought he just felt bad thinking he needed attention also!!!

Have a wonderful rest of the week. I will update in a few days with how Isaiah is feeling.

Nicki

Wednesday, January 16, 2008 2:49 PM CST

I forgot to update last night sorry.....

Yesterday went good at the doctors. We ended up with 2 appointments...ENT and neurology. Our first was with neurology. We talked some about medications and then about Isaiah's upcoming surgery. They are looking at some options on what they want to do to medicate him for seizures after the surgery. For some reason Isaiah tends to have higher seizure activity when he is under anesthesia. So they are looking at options with the worse case to have to make his phenobarb level (one of the meds he is on) go way up to where it would make him sleep for several days. My prayer is that they will know what needs to be done to keep them under control.

Next was ENT. Funny story for this. Dr. Cofer, whom has had him since the NICU, went to get the things they look in the ears with. Well Isaiah had on his speaker valve and told her bye bye. She looked at him again and he turned his head as to say no and said bye bye again. She laughed and told him he had to have his ears checked. He didn't like it but kissed her in the end! They then had to suction them and determined he needed new tubes. She is going to let him wait until his surgery. She will also run a bronch that day to make sure his airways look ok. They just run a tube down to take pictures and they are done. Basically 30 minutes worth of ENT stuff before plastics starts with him. We have to start trying to have them suctioned once a week. I am going to try to find an ENT here where we live that would do it on the weeks we are not at Vanderbilt. Then hopefully after the surgery this won't be necessary. She thinks that once the trach is removed his ears will get better. She is still hopeful that the trach will come out after all of the midface things are done.

Now for the big news I have been wanting to share...... Well Isaiah and I can now go somewhere all by ourselves!!!! For 17 months I have not been allowed to take him anywhere without having someone with me. Yesterday Dr. Cofer finally gave me the OK.....I ask her every time we see her!!! She feels that if his trach did come out I would have time to stop and handle it without anything happening to him. Now I have to make sure it is a day his secretions are lite and stuff but we finally have some freedom!!!!!! I am so excited....so all my friends who are stay at home moms better watch out your phone will probably start ringing soon!!! I do have to play it really safe with it being cold and flu season. We will pick our times of the day carefully and avoid sickness. I just feel so free to know I can run 12 minutes down the road to go get milk or eggs. When you can't do it you feel very limited....I think 17 months has been long enough!!!! Oh, Isaiah watch out when summer comes!!!!

That is all for now. Hope all of you have an amazing rest of the week. No more appointments until next Wed. We then see one of my doctors and have to get Isaiah's blood drawn and ears suctioned. I will update soon....and yes more pics are coming. THe web page I use keeps kicking me off.

Nicki

Monday, January 14, 2008 9:39 AM CST

Wow do we have lots to report. First I want everyone to know I am working on slideshows. There are probably 100 or better pics I am trying to go through and get uploaded then onto a slideshow!!! My computer is uploading as I speak and has been for several hours now!!!!

Well all I can say about Saturday is that it was a blast. Isaiah seemed to have such a wonderful time! All of his friends and family came to help him celebrate him being three. The kids were so cute. They would come in and tell him happy birthday and then go play. But then you would see them come back around every so often to check on him or say something to him! I was wonderful to watch them all just loving him. My cake ended up turning out. There were a few things I wish were different on it but it was fine. Ann Kelly and I worked hard on it....she was so funny. She mixed icing but refused to touch the cake as did TImmy. I told them if something happened to it then it would be easier on me if one of them did it but they both looked at me like I was crazy. The fun part was driving 40 minutes with it in my lap while my husband dodged every hole or bump in the roads!!!! His Tonka party went great. I just want to say a big thank you to his buddies and to there parents for making sure they were there. His aunt Amanda and uncle Drew even came to help and join in the fun! I am already thinking about next years party....it will for sure be at the same place and since he did so well with the crowd we can invite even a few more friends. There ended up being 14 or so kids! He got lots of nice gifts....lots of PJ's with buttons up the front for the hospital, shirts, and trucks!!!!

Well after Saturday my little sisters decided that no way could they not have a party with there nephew! My mom called to see if it would be OK to have one at her house after church....I said sure as long as you are doing it....I was done with the parties!!!! So mom did lunch yesterday and his aunt Jessie made him a cake!!! We had lots of fun there with everyone. He just loves everyone to sing Happy Birthday to him. We then had a wedding anniversary reception to attend. Happy anniversary Patsy and Danny!!! Then mommy had a wild idea....since we were by the Westbrook's dairy barn I thought Isaiah should get to go play with a bottle calve to top the day. Daddy thought it was way to muddy since it has been raining lots....well Tim Westbrook told Daddy he had new gravel put down so off we went!! I only have 1 picture.....daddy didn't know mommy wanted lots! Isaiah thought it was pretty cool until the calve started trying to eat his pants! They were ready for their bottle and were trying to eat anything they could! When I was a senior in high school I raised 2 calves that we got from this farm and actually still have them now as cows so this trip was a very special one for me. Thanks to the Westbrook's for letting Isaiah experience part of something his mommy and daddy love so much.

Today we are hanging low!!! Actually Isaiah's little cousin Levi is staying with us for a few days. His mommy is a twin to my aunt that is fighting breast cancer. So Levi's mom (Sharon) and my other aunt and her family have all gone on a ski trip before Karon has another surgery and begin chemo. We are thrilled to have and thrilled his parents are able to go with Karon's family to have some fun for a few days. Isaiah thinks Levi is great! Please be praying for Karon and this long road ahead of her. Her surgery is the 21st.

Well that is all for now. We have an appointment tomorrow so I will update tomorrow night with info on that. Hope all of you have a wonderful day and enjoy the pictures when they come up. It is actually 11:30 right now and I am still getting them uploaded and I have high speed Internet!!!

Nicki

Saturday, January 12, 2008 0:48 AM CST

Well Isaiah has had a great day.

His day started with playing with his buddy Harrison. Then after nap time and play time we decided to go to town to run around a little. A boy does need a balloon for his birthday you know. So we first stopped to get a haircut. His was getting long and I wanted it cut for his party for tomorrow! Then we went to a couple stores but not first without stopping to get him and Harrison a balloon. Boy has he loved his balloon today! One balloon makes him so happy! Then off to do some more things. One of Isaiah's favorite things is riding in a shopping cart trying to pull things off the shelve. Well since it was his day mommy didn't say no and just picked up behind him!!!

We then went to get quick bite to eat. Then we went to the fire department to see Daddy. He had to work but Mommy went and picked up cupcakes to take down there so everyone could help celebrate Isaiah's birthday!!! All of the guys wished him a Happy Birthday and played with him. They even found him and Harrison a fireman's hat to wear. I told Isaiah he was really special to have a party at a real fire station with real firefighters.....something lots of little boys dream of!!! Then we headed home. Well we have had a PJ party tonight. When we were at Target we found matching PJ's clearanced out for everyone. So yes me, Isaiah, Ann Kelly, and Harrison all having matching PJ's. There will be pictures to share I promise. THe boys thought it was great we were all laying in the bed playing and taking pictures together. Then Isaiah opened his gift from Harrison and off to bed for him!!!!

I think he has had a fun day. If it had been warmer we would have gone to the zoo but we made the best of it. Tomorrow will be his party with his friends. We can't wait. I just got done making a cake that looks like a big Tonka truck and I am getting ready to be off to bed!!! I think he will love his party tomorrow. I will have lots to share from it. And boy am I behind on the slide shows. Lots tomorrow I promise....Christmas, Florida, birthday!!!!!!

It is hard to believe my little guy is 3 today. The time has gone by quickly but I wouldn't trade a minute. Isaiah boy we love you so much.....you are mommy and daddy's big boy!!! Words can never tell you how you have changed our life for the good and what you have taught us about what truly matters in life. Who needs all of the worldly things......and do all of the little details really matter anyways!!!

Thank you to all of have signed and sent things. Wow he is one lucky little boy. I can't tell you how many times today I have put the phone up to his ear for people to tell him Happy Birthday. His grandpa even played the guitar for him while he was singing!!!! The calls started with his grandparents ended with his Uncle Drew and the list in between is huge!!!! Well mommy kind of got the last Happy Birthday since I got to tuck him in and whisper it into his ear!!!!

Thanks for making his day special,

Nicki

Tuesday, January 8, 2008 9:47 PM CST

We are home from a very long day. Today we saw the ENT Nurse Practitioner and his eye doctor.

The eye doctor did a very good check of Isaiah's eyes. His left eye is doing wonderful. His right eye is doing pretty good. Basically when he flashed a light in the eye and did different things Isaiah doesn't really respond with the right eye. He has always been able to alter eyes and which one he is using. He has decided his left eye is dominate. I very bluntly asked the doctor if he was blind in the right eye and he said he didn't think so. He feels that he is just using the left eye more. I am still a little concerned about the reaction the right eye was given but can't dwell on it. All we can do is pray he keeps sight in that eye. Dr. Donahue said he would see us in nine months!!!!!! (he made sure to remind me to call if I needed him sooner!)

Then we saw the nurse practitioner. Well he suctioned the ears and found that the right ear had its tube out. He also saw the hole in the ear drum that the pediatrician saw yesterday. He said the hole is due to the tube and the ear is naturally draining through it now. It may close up but we will just have to see. We see the ENT next Friday and she will make a decision. I would really like to try him for a month without tubes. Just to see if maybe his body tries to reject them and that is part of our problem. And the stuff that has been coming out of the ears that looks the same as what is coming from the nose is the same thing. I felt silly asking it but he said since the hole in the ear drum is there then that is what it is. Crazy huh!!!!

Overall that is our day. Isaiah's new respite provider (Sarah) went with us. She is training to be able to take care of him. His Katy has a job and won't be able to do all of the hours so Sarah will start with them. He will have to see Katy a little also! He is lucky to have yet another good provider coming on board. Sarah is also going to be a therapist but has several years until graduation so hopefully she will have several with us!!!

I will give an update on Friday......the big 3rd birthday. Thank you for all of the support in journal postings today. You guys are a great support as we prepare for what will take place in 6 weeks. Also a huge thank you to the guys Timmy works with. He sent out an email tonight needing blood donors and has had so many to respond being willing to give for him. To all that check this site....thanks for the help!!!

Until Friday!

Nicki

Monday, January 7, 2008 3:47 PM CST

We are home. We have actually been here for a little bit but my uncle came down so I have taken a few hours to get outside. Good thinking time.

Isaiah's appointment went fine. Not sure if it was the way we wanted it to go or not the way. We have a plan just the very last plan that no one wanted. Isaiah will go into surgery on March 4th first thing in the morning. This will more than likely be a 10-12 hour surgery and 6-8 units of blood will be needed. So yes this is a massive surgery. They were unable to develop a fixator for the outside of the head. Everything they came up with Dr. Kelly just wasn't happy with. He decided they weren't "good enough" or that they wouldn't work the way he wanted them to. He is very much so a perfectionist and he wasn't 100% satisfied with it.....but isn't that what we were praying for....him to know His plan. Anyways they made the decision to go with the old traditional fixators that are actually under the skin. If you have a light stomach skip the next little bit....basically they will use the old cut. They will then pull the eye sockets and build him an air way in the nose area. He will then put the fixator to stabilize the midface. Then he puts like pieces of metal in the temple area to stabilize and that is where the dreaded screws will be (the ones we have to turn). The problem with this one is you have to surgically remove it. So that means 4-6 months later when he is just about healed another cut in the same place and take it out. Then his eyes will swell shut again and the same pain from the first one. Yes this is better than not having a plan but a hard one to swallow. Risk are loosing his eye sight(from operating so close to the optic nerve), infection in the sinus area, infection in general, seizures, brain infection, bleeding and the list goes on.

So how are we with this. We are just glad to have a plan. I was hoping there would be a magical cure but this is the plan and I have to accept it. I have a strange calm to me about it though. I can't think a whole lot about it or I want to get sick to my stomach but I must say I don't have a headache and that is a miracle!!! Timmy and I know that this has to be done. Dr. Kelly said we could wait another year if we just weren't ready but that we couldn't wait any longer than that. We decided what is reasoning to put it off....nothing will change and he will only be older to remember it more. Dr. Kelly seemed very confident in his plan and I feel he knows best....he has the best physician ever guiding him. Basically we have 6 weeks to spend with our angel before he is once again forever changed.

I must share another story. Last night I just didn't feel like cooking nor did I feel like sleeping since I slept all of 2 hours. Well my favorite food is Mexican so Timmy decided we would go get it and make a family adventure to Walmart. We were waiting to pay and the men working told us ours had been paid for I just kind of looked at them. The couple behind us had paid for our meal. They were probably our age with a new baby. What a wonderful act of kindness they could have done for us. We needed that meal out because we just needed the distraction away from today and it was provided. If the people happen to be someone who checks this site we want to say thank you so much it meant more than you will know. I love to share stories that show there are still kind people in the world.

This is getting long. I will update more tomorrow. We have appointments tomorrow afternoon with ENT and his eye doctor. Thank you for your support and continued prayers.

****Yes Susan that was Isaiah in church!!!! He was really getting into the preaching yesterday :)

With thanks to all of you,

Nicki

Wednesday, January 2, 2008 9:42 AM CST

We are home and everything is getting back to normal.

We got home on the 30th. We left that morning and just stopped every few hours and tried to keep things as calm as possible. He had a few spells on the way home but nothing major. Since starting the emergency drug he has really turned around. It made him really sleepy but after it was over he is less agitated and functioning better than he has in several weeks. The seizures pushed his development back but we are working on regaining what he lost. He had therapy this morning and did pretty well with it. Overall he is trying to move back to being our old Isaiah.

On New Years Eve we had some friends over and had a wonderful time. Isaiah played as much as he felt like playing and went to bed around 9:30. He brought in the new year sound asleep!!!! His buddies played and played. They were so cute. When it was time and he wanted to play with them they were right there. When he needed his space they let him have it. It amazes me how kids just know and the ones that have grown up around him are just so accepting of it.

Next week we have several doctors appointments. Monday is the big one with Dr. Kelly. Please continue to pray for the decisions he will reach and for Timmy and I as we accept what he has to say. Tuesday we see his eye doctor. I am getting ready to try to get him into his ENT on one of those days and I want to get a blood draw on him so that they can check his blood levels (for the seizure meds). Then next Friday some little boy will turn 3 years old!!!! We have a big week next week!

I hope everyone has a wonderful 2008. As we look into 2008 it is scary but could be a huge year. With that said I am trying not to look into it to much. Living for today and not worrying about tomorrow. Today is a good day though!!!

Have a blessed day and if I don't update before Monday I will update the moment we get home (sometime in the afternoon). I may take the laptop to the hospital and update there.

Nicki

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