A Very Excited Christmas

Evan was so much fun Christmas morning! I didn't expect him not to be but, WOW, he was sooo excited. He woke up at 5:20 and came to our room and asked if he could get up and I said no, not yet, lay back down. Less than a minute later the light in the hall flips on and who is it you ask, my 43 yr. old brother. He poked his head in our room and said, "can we get up?" Of course Evan chimed in, can we, can we? I told Evan he had to go potty so Eric would have a chance to get the camera and Evan kept yelling while he was in there, "Munc, did Santa come, did he?" It was so cute! Munc (Evan's nickname for my brother, Uncle Michael) has spent Christmas with us the last few years so he can share in the excitement a little one brings and we love having him with us. I think next year there will be rules though - Munc can NOT wake up before at least 6:30. He always use to wake me up, I'm sure I should not expect anything but an early rise.

Update on my last post is that my lab work came back and I'm not anemic - actually my B12 levels are unusually high - normal 200-900, mine - 2000. Hmmm..... They are sending me to a neurologist to see if he has an idea why my feet are still numb. I'm doing fine though, it is just a bit aggervating. Also, Eric fell from a ladder at work yesterday and is quite sore - I joked with him that we will be hobbling into the new year!!! LOL.

The first two pic's of Evan right after he saw what Santa brought him - He loves his new race track and his Planet Heroes.

The second is of Evan opening his tackle box from Daddy. Eric LOVES to fish and is too excited that Evan also enjoyed doing this with him the past summer and that Evan had tackle box on his Christmas list.

By the time we got to my Mom's he was a pro and opened all of his presents before we had gotten our tissue out of our first bag. LOL.

Me & Christmas

Sorry for no photo last Friday, our visit with Santa didn't go so well. Evan did great, he was so excited, it was Santa, can you believe it? The little kid in front of us got down and left so it was Evan's turn and I nudged him and said okay, it's your turn buddy and he walked right up to get on Santa's lap and Santa put his hand out and said, "You'll have to wait, they are not ready to take your picture yet." HUH??? My response - "We are not here to get a picture we are here to see Santa." Santa then looked down at Evan and Evan began telling him that he had been good and that he was sorry for when he had been bad and then his list of requests. Santa never said anything, never attempted to pick Evan up or anything. I was so disappointed. We are going to a Christmas party tomorrow and my Papaw is going to show up in a Santa suit so hopefully he'll be nice ; ) of course Evan didn't notice that Santa was less than Mommy expected.
Now for the title of the post. Something with me & Christmas is off. It started back in my Jr. yr. of HS when on Christmas Eve I started having horrible pain in my bottom. By Christmas day I was unable to sit down. I made it through and my parents took me to immediate care early the day after Christmas where I was rushed into immediate surgery for a polinidle cyst. Then the Christmas Evan was born we had a huge ice storm that shut down the town that Eric & I live in just outside of Louisville. We left Evan at my parents and drove the long and slow drive home to get our Christmas presents and check on the house. On the way back I began having a headache and wrote it off to driving so long in an ice storm. By Christmas morning I knew something was wrong, I was having such a hard time focusing and the room seemed to be slightly moving. The symptoms kept intensifying until I went to the Dr. a few days later and was diagnosed with Virtigo. I was out of commission as far as driving or being alone with Evan and put on disability for 2 months at which time it went away. Now this Christmas. On Monday after arriving at work I kept complaining about how cold it was. My feet felt like they were freezing - like in an ice bucket. When I got home I couldn't wait to take my socks and shoes off and wrap them in a heated blanket. When I got my shoes off I realized that to the touch my feet felt warm but my feet also didn't feel the touch. Yep, my feet have been numb/asleep since Monday! I went to the Dr. today and was told that looking back on my records I have always been borderline anemic - well not anymore - I crossed the line. They gave me a big B12 shot and took lots of blood work and warned me that the shot could be a weekly thing. They said some people get feeling back immediately after their B12 shot - so far I haven't. After telling my folks I found out I have 2 Aunts and 1 Cousins w/ pernicious anemia and that is hereditary. Good Grief.

FFF - Evan's visit with Santa

With Eric working so many hours it became a habit this summer to snuggle in my bed with Evan and read books and we always ended up falling asleep. Eric would move Evan into his bed whenever he got home. When things started to slow down a bit for Eric and he was home at bedtime he started going to Evan's room and reading to him but, he always fell asleep before Evan and ended up sleeping most of the night with him. Mind you, that before Eric's change in schedule this summer Evan has been happily sleeping in his own bed alone with no trouble. When Eric wakes up sometime around 2 or 3am he gets up and comes to our bed and in no time we hear Evan's little feet coming down the hall to our room. We have spent many many nights lately with the 3 of us snuggled side by side. My back has been hurting so badly that I told Eric we really need to try to get him sleeping again in his bed and the last two night he has, all night!
This Morning I told Evan that after lunch I would take him to see Santa. A few minutes later Evan said "Mommy, you be Santa"
M - "Okay, I'm Santa"
E - "Santa, do you remember me, it's Evan"
M - "of course I remember you"
E - "I slept in my bed the whole night last night"
M - "good for you, maybe there will be an extra gift in your stocking"
E - "Thanks for forgiving me when I'm bad too"
This followed with his gift request. I was cracking up. I'll post a picture of him with Santa tonight for FFF.

It's the Holiday Season

Last night was so precious! Evan had his very first Christmas play at his preschool - they were so cute. His class sang 4 songs - Away in a Manger, Go Tell it on the Mountain, Open the eyes of my Heart Lord and We Wish you a Merry Christmas. Evan had proclaimed that he would NOT be doing any motions but, he surprised us and did them all. I'll be uploading pictures tonight so, you will be seeing for yourself that my little man was so cute last night! I'm so excited to be given the gift of this child and sharing in these moments with him.
Our little Sarah has been released from the hospital and is resting at home - well somewhat - has her days and nights completely mixed up her Mama says.
Maddie still needs our prayers. Her parents said that she is a candidate for transplant now and that when asked the Dr.'s said the best time for Maddie to receive a heart is today. Please pray.

The first picture is of Evan and one of his Brave Heart friends that he also gets to go to school with, Caleb.

The Second picture is of Evan and he new school friend, Blake. You remember me posting earlier that Evan had a very rough first few weeks of school. Another Mom whose son is in Evan's class and whom I also work with but did not really know became such a God send to us during this. I was able to get to know this sweet lady and her adorable little Blake and they agreed to wait for us every morning in the parking lot and let Evan & Blake walk in together. This did just the trick and made Evan feel much better about school. Thank you Lisa & Blake!!!

Urgent Prayer

I know I promised an update from my big 3-0 birthday getaway but, that will have to wait as I'm coming to you with more important things.
Please pray for Maddie she is once again on ECMO after a major turnaround from almost being discharged to go home Thanksgiving. Please Lord help Maddie's lungs to be free of the casts and not return - help her Fontan circuit to not be the cause of these problems.
Our youngest Brave Heart member - Sarah, is 5 months old and will be undergoing her 2nd OHS for HLHS tomorrow. She had a cath. today to get things ready and as far as I know it is a go.

Thanksgiving & makeup FFF

I've meant to post several times lately but life just seems to keep me so busy! I got a night out alone with some of my girlfriends last Friday to celebrate my 30th B-day at The Melting Pot . I had so much fun and laughed so hard.... we definately need a few more nights out like that a year!!! To all of you that made it I Love You and thank you for keeping me sane and making me smile. To those of you who didn't - pblthhh.... ; P ahahahahaha.... My family gave me a little party on Saturday and I went to the Ceasar's Casino for the first time (probably the last) several people I know love to go but, that just isn't my thing. Eric is taking me away this weekend just the two of us, he has planned everything himself and I can't wait and I'm surprised I haven't A.) figured it out yet or B.) Eric hasn't slipped and told me yet. He told me today that it was a Holiday Inn with a view of White Castles - he thinks he is so funny. I'll have to update next week and let you all know.

Tomorrow is Thanksgiving and I'm so thankful for all he blessings in my life. I pray that all of you have a wonderful day.

I wanted to share (before I forget - gosh I'm just 30 but my mind is shot) with all of you some of the sayings Evan has been saying. He makes me laugh so hard sometimes - it really makes discipline hard ; )

In the middle of ALL adult conversations - Essuze me please - I'm trying to talk (and then he has to think of something to say)

Mommy are you zhausted (exhausted)

I've got an idea - usually followed by something really fun for Evan and not so much fun for us

Me - Evan did you have a good day at school

Evan - I didn't get time out but, I'm sure glad this day is over!!!

Me - what did you do?

Evan - played : ))))

He was at my parents the other day and he asked my dad this "Papaw, we can go hunting, fishing or climb the apple tree, it's your decision Papaw, you can think about it." Papaw didn't want to do anything and was quiet a while when Evan said, "Papaw are you still thinking about it, what is your decision."

He can be such a smarty and asked me the other day on the way to time out if I wanted time out - his time was doubled. He can't help himself. He knows when he is in trouble and should shut his little mouth but, he is my child and he just HAS to add something on his way out.

See below promised pic of Evan's chin which is all better now. Also a few pictures from Evan's last swimming lesson at the local Y - his teacher said he was doing so well he could go down the big kids slide - he LOVED it! Lastly a pic of Evan and his bud Lucas watching Frosty the Snowman today as Mommy has been off all week and we've enjoyed lots of play dates with our friends.

FFF & Cardio checkup

We had a cardio checkup yesterday, it has been six months since our last one and Evan had asked several times when we were going to see his Dr. McOmber! We are so blessed to have such a wonderful and caring cardio to care for our Evan, he feels so special there with him & his nurses. There is nothing we value more than feeling comfortable and at peace knowing that your childs doctor is without a doubt looking at your child as a person, not another patient. The nurses there even walk with our heartwalk team every year - they are wonderful. So.... Dr. says that Evan is looking great - he did a great echo and explained to Evan what he was looking at and answered all his "why?" questions. He said that we will do another Ventilation Profusion Scan and 24 hr. holter in March which will be 1 year since the last scan. We will continue to do this every year to keep an eye on the left PA that was stented Apr. 06 - eventually they say he will need a valve and conduit to replace his current valve and left PA so we are just going to keep a good watch and put it off as long as possible. We also were able to discontinue Digoxin for the time being so, Evan will be med free for a while. We thought the night was just going wonderful then, at bathtime Evan fell getting out of the tub and gashed his chin open - I about died when Eric came running out of the bathroom with him. We ran to the immediate care which was to close in 10 minutes and they were able to glue it shut with steri strips and avoid stiches. This weeks FFF is of Evan and his beloved Dr. McOmber. Next weeks will be of Evan and his steri strips - oiy - this boy keeps me on my toes!

Evan's Mendaversary & Hubby's Birthday (FFF)

Today is Evan's 3rd "mend"aversary since his open heart surgery. I always try to spend some time this day with him doing something he really wants to do and we also usually deliver goodies and cards to his cardiologist. Its hard to put into words the way I feel each year as this day passes - the sadness of remembering what he went through - the gratefulness that he came through it - the anxiety of wondering when/if he will have to go through it again - thankfulness for the time God has given us together - thankful for the Doctors and Nurses that have and continue to care for him. So many different emotions. The favorite pictures today are of him after his first cardiologist appointment and one I had made a few weeks ago.


























Today is also hubby's 34th birthday. I think I've told this before but, I'll tell it again. Gearing up for Evan's surgery - being the OCD person I am, I had to plan. There were so many things out of my control so I went a little overboard on the things I could control - cleaning, packing, sorting, doing things a certain time, perfection. I also was engulfed with the need for knowledge about what was going on searched and asked questions to anyone and everyone I thought could help - I also probably drove his doctors crazy and had given my cell phone as the contact number for all the doctors. I was sitting at work one Wednesday afternoon and my cell rang and it was the head nurse from the cardiologist saying that the surgeon was going on a 2 week vacation and that he had a cancellation and could fit Evan in before he left in TWO DAYS - that Friday morning. I just started crying and crying and couldn't stop - what was this lady thinking calling a person that was preparing for this surgery and telling them they could do it in 2 days - all I kept saying to her was no, no we can't - I need to wash his favorite clothes and get his favorite toys together and clean my house and.... She said it's okay - I just wanted you to have the option we can schedule it when he gets back. I hung up and left work - ran to get Evan and just held him wondering how I would ever prepare for this. The nurse got smart and changed the contact number to Eric's cell phone and when they called to reschedule they called him. So, Eric called me and said well, we have a surgery date... I ran through the list... Is it on Tuesday or Wednesday so we will be at the hospital during the week and have the best care, is he first case, can this nurse be here that day, did you ask these questions..... He calmly said, yes yes yes to all the questions and said okay, do you want to hear it (pause) It's October 26th. WHAT?!?!?!? That's your birthday!!!! To which he replied, It's okay, it will be the best birthday present ever. And it was.

Church

Have I said that I love Fall? Well, I'm sure I have but, where is it. We have a few good days and then today - high of 83?? My little country boy - I'm definately a city girl - my husband is a country boy - Evan - he woke up at 8:00 and in his cutest Bluegrass accent said, "Daddy, lets go get some crickets and wax worms and go fishing - Mommy, I'm going to bring you home some good fish." Um, who is going to cook this fish??? So here I am with a morning to myself and I feel lost. Usually we would be in church but to be honest here we are having a really hard time with that. I have been a member of the same church my entire life - I met Eric there 10 years ago - married there 7 years ago - lots of memories. About 7 years ago a lot of changes happened and I really believed that those things that began to bother me would pass and I should continue to hang in there. Evan was born and under the direction of his Dr. we steered clear of church and places there would be lots of kids. Evan had his surgery at 9 months old and we had probably only been to church 5 times - so weird for people who were in church 3 times a week and also attended local seminary. During our quarantine we were hurt by the lack of support and then after surgery we returned and felt so out of place. I loved Evan's Sunday School class and it was so good for him so we continued to go for that reason. Now, we never go.... I need to be uplifted but how??? I'm not feeling it at my lifelong membership church - so I guess I need to go elsewhere. Our house is on the market and I keep saying we are going to go back after we move so we can find somewhere close to our new home but, things are moving slowly so that could be a while. Have I just become really picky? Is it me - my attitude that I'm not feeling it? I want a place where people can be real, no pretending. That I feel shouldn't be so hard to find. I'm thinking the search better begin soon.

I missed Favorite Foto Friday but, here they are, We had boo at the zoo this week and I think I mentioned in the last post that Evan wanted to be a skeleton and we found one we like at Pottery Barn but it was $50 - check the link - how did I do? I made it for $12.

http://www.potterybarnkids.com/content/features/halloween/stylehouse.cfm?cm_src=bil_spookyhalloween_f3v2&cm_type_type=flash

Fall is here! Favorite Foto Friday

I'm so happy that finally it feels like fall here in the Ohio valley. We are packing the first fall like weather weekend full. Evan begins swimming lessons at the local YMCA with his buddies Sat. morning and then our town is having its annual Arts and Crafts festival. Sunday we are going to Huber's Orchard and Winery -http://www.huberwinery.com/content_display.php?id=1 - with some friends to get pumpkins and sip cider. Sunday night we are going to Boo at the Zoo and Evan is soooo excited. I fell in love with the skeleton costume at Pottery Barn but it was $49.99 and well, I just would not pay that so, I made it for $11.00! It turned out so good - I'll post those pic's next Friday.

Our house hasn't sold yet but, there have been a few showings so, at least we have started the process. I'm really praying that things work out to where I'll be in a new home in time to celebrate my 30th birthday - if so everyone is invited for margaritas!!!

Evan is LOVING school - I'm so glad he adjusted to this. This week was Fire Prevention week and the local fire dept. came and gave them safety tips and let them get on the truck and gave them hats. Evan has been schooling us all week on what we should do if there is a fire - he's so cute. He also recognized his name in a group of names and wrote it for the first time this week.

Continue to pray for Maddie - she is really looking better and better.

Our little Brave Heart Sarah was admitted to the hospital last Sat. w/ low sats but, they improved and are still looking at surgery before Christmas.

Hope everyone is enjoying Fall!

Favorite Foto Friday

I'm going back to some oldies for my favorite pic's today.

This was taken while napping - he was only a few weeks old. What I would give for him to be this small again. I'm so thankful for everything God has brought him through and I wish I would have relied on my faith more when Evan was this small!
























Evan's favorite time was bath time and pre-repair he would turn so blue and get so cold and it didn't help that his little bathtub was blue so we were constantly saying "is he okay, is it just me, check his nailbeds" - oh I should have just enjoyed that little face instead of worrying so much!





















This is true Evan style - I was getting ready to leave him at my Mom's while I worked and this was his favorite position in his highchair!

Maddie is still having a very hard time - please keep praying for her and her family.
Our Brave Heart Logan was re-admitted because his chest tube came out but, x-ray showed it wasn't needed and he went right back home!
Also, if you read my blog but not Brayden's please visit there as his family is requesting signatures on this amendment to help bring their boy's home from Guatamala.
http://www.petitiononline.com/foafoa1/petition.html

Praising the Lord and joining in Friday's Fav. Pic

I'm rejoicing with so many families tonight in the work the Lord has done in so many of our Team Brave Heart families and friends. God is good and has been so evident in the miracles that have taken place the past few weeks.

First I'll start with my own precious Brave Heart and say that after a much needed vacation Evan started back to pre-school on Monday and although he cried when being dropped off they called and said he was having a wonderful day and then Wed. he ran in and waved bye to me and said, "Mommy, I won't cry today, Bye." Let's pray this continues but I'll give praises for this week.

Logan as I stated before, just shy of two weeks from having his Fontan is home and doing well.

Sarah has been given a few more months to grow before having her second open heart for HLHS. Sarah is our newest member and a gorgeous little girl.

Logan's mommy sent out an urgent message for prayer the day after Logan's Fontan and it was for a fellow HLHS buddy, Maddie. I have never met Maddie or her family but any friend of Logan's mommy is a friend of mine and anyone sending out plea's for prayer for their heart kid is definately got my attention. I began reading Maddie's blog and crying and praying for this family and felt compelled to start updating here, trying to reach as many of you as I can to pray for Maddie. As of last night, she had defeated all odds and came off ECMO and

was holding her own. Praise God!

I'm joining the bandwagon with favorite picture Friday. This is one from our vacation and it really is a true picture of Evan - my little beach bum.

Prayers for Maddie and Answered Prayers for Logan & Sarah

From Logan's Mommy this morning:
All things are possible with God!!Logan is going home today!
Just shy of 2 weeks from Logan's Fontan & he is going home.

Our youngest Brave Heart member, Sarah, who has HLHS had a cath. yesterday with a Stent placed in her atrial septum. She was released this morning with Dr.'s saying this has given them some time to put surgery off until Dec.

Maddie's webpage says that she has been put on CPS - a petite version of ECMO. She is going to have to be opened back up and have her right lung repaired. The surgery is impossible while on CPS so, the Dr.'s are going to move the breathing tube into her good lung and if she can support herself they will beging weaning her from the vent. today. She also is having some kidney issues. The last sentence from their post yesterday says exactly what the family needs from us, Prayer.:

We are getting close to desperation. Please pray for a supernaturally strong left lung and for functioning kidneys. Maddie is alert and aware and wants to live. Please Lord hear our cries, in Jesus. Amen.

Prayer for Logan, Maddie & Sarah

From Logan's Mommy:


Logan is doing well. He has had a pneumothorax for the past 2 days, caused by the air leak. Today they decided they would have to put in another chest tube. They converted the room into a mini OR. After several attempts, they came out and said the procedure went well, but apparently sometime between 11a and 2p the lung came back up. So no extra chest tube for now. We still have the air leak, so the pneumo could reoccur @ any time, we are hoping the leak will seal off soon. Aside from that, they are pleased w/his progress. Although frustrated, we are extremely thankful that we aren't dealing w/worse.


Sarah is one of our newest members and has HLHS because of lowering sats her Dr.'s bumped up her cath. which she is having today.


Sweet Sarah


Maddie's parents are updated her webpage daily - see link to the right. It seems they will be trying to come off ECMO tomorrow.

Please continue to pray for our "Brave Heart" family and their heart friends.

For some reason Slide.com is not giving an option to post to blogger anymore so here is the link to our slideshow from vacation. Enjoy!

http://www.slide.com/r/BkPyV_DK1D8NFxdeftvtQHgXSAoc96sM?view=large

Update on Logan

We returned from our vacation this morning around 1:00am and I'm sitting at work - I'm sure looking like a zombie. We had a wonderful time and 6 days went by way to fast. I'll post a slide show tonight when I get back home.

Logan is in step down and doing well however one of his close friends Maddie needs our prayers. These are the updates I have received from Logan's Mommy.
Maddie's website:
http://www.madelinelester.com/Current/Current.htm


Last Sunday 9/16:
Be joyful in hope, patient in affliction, faithful in prayer-Romans 12:12
The past few days have been difficult for Logan. The good news is his new cardiopulmonary circuit is doing well. We extubated quickly on Thursday, weaned off drips on Friday, and rested rather comfortably. Saturday they removed his intracardiac lines, pacer wires, and transitioned from Heparin to Lovenox & Coumadin (blood thinners). They also stopped his Fentanyl(pain med) drip. He suddenly began vomiting that has lasted into today. He is also having excruciating belly pain. They have yet to determine the cause, 2 belly films and a CT later. They initially suspected he was constipated, then possibly kidney stones. All of these have been ruled out, the CT showed fluid in the abdomen. It could be gas, they really don't know. The plan is to see how he does overnight and repeat a CT tomorrow w/ contrast if this doesn't resolve. He also lost both I.V's, and arterial line. They replaced both I.V's ,and opted to forgo the arterial line. The negative side of that means he will require numerous sticks for blood draws. He became dehydrated with all the vomiting, so he's back on his I.V fluids.He is on clear liquids but is still not tolerating them. He is also receiving breathing treatments, to help break up some of the chest congestion. I was able to hold him yesterday, but due to the vomiting and belly pain he couldn't get comfortable. He has held his arms out for me to hold him today, but everytime we move him he begins heaving. I hope this resolves quickly because both of us are in need of a little snuggle time. Brother and Sister have visited the past 2 days. They take turns holding Logan's hands. ! Prayer of the Night-Please ask God to guide the dr's to find a cause & solution for Logan's vomiting.God Bless

Monday 9/17:
Our dear sweet Madeline needs your prayers! As most of you know, she underwent the Fontan 9 weeks ago. Over the weekend she developed an aggressive bacterial infection. With her immune system severely compromised she was unable to fight this. She was placed on the heart/hung bypass machine(ECMO). Because of the infection, she is not a candidate for a transplant. Please pray for a miracle for she and her family.I have attached Dave's emergency prayer request. Please forward to your family & friends!
The bacterial infection almost took our Maddie away from us last night. To the point, she is now on a heart-lung bypass machine, which can keep her alive for about ten days. We are currently holed up in a room next to hers in the ICU waiting for any news. I cannot provide a picture sad enough to express our sorrow and fear at this moment. Please pray for a miracle, that god would spare her life. We can’t believe this is happening.

Wednesday 9/19:
Because you are precious to me, and because I love you and give you honor, do not be afraid I am with you.-Psalms 43
The surgeon and cardiologist are both pleased and cautious of Logan's progress. We were transferred out of the PICU on Monday afternoon. This was met w/mixed emotions. Happy because we are one step closer to home, and sad because we trust our PICU nurses above all others. Logan is no longer vomiting & wretching. He also finally pooped which seemed to be the cause of his belly pain. Your prayers and a dulcolax suppository did the trick. Unfortunately he still has a chest tube leak. The surgeon feels this will eventually seal on its own.They attempted to take him of suction for 2 hours today, a chest x-ray revealed it was too soon. What this means is, until the leak seals, we can't go home. His biggest source of discomfort right now is his incision & chest tube sites are itching. We finally received an order for IV Benadryl around midnight, but this gave him little relief. He may have slept a total of 2 hours. Neither one of us are fond of daily 4am wagon rides for a chest x-ray, followed by labs & Lovenox injections. Then, by the time you fall asleep, its time for rounds. My heart received a hug yesterday when he gave me a BIG smile. This was the first since before surgery. Praise God for the little things. We continue to be frightened for Madeline and her family, please add she and her family to your prayers. Logan's evening prayer request: 1. The itching to stop 2.The leak to seal. 3. Sleep, Sleep, and More sleep. God Bless!

So if your reading please pray for Madeline and Logan.

Love for Logan

This is the message I got from Logan's Mommy last night:
Friends & Family, as most of you know Logan underwent his 3rd Open Heart Surgery ( The Fontan) today. Logan came back from surgery around 4pm. He came back with 3 chest tubes, many drips, and on the ventilator. The 1st 2hrs were a little rocky , in typical Logan style. A repeat Echo calmed our fears. He was extubated(breathing tube pulled) around 7 pm. He reminded everyone that he's the boss, by holding his breath and passing out, but with a little O2 he recovered on his own. Prayer of the Day-Comfort , and Coughing for Logan !! Praise God for the incredible Dr.'s, OR & PICU staff!!God Bless.

School and tears

Okay - yesterday I meant to post a link to a wonderful commemorative piece they played on the local radio in honor of 9/11 - you have to listen to this - I haven't heard anything like it:

http://www.brocksgifts.com/silentnight911.html

I feel horrible I haven't updated but I'll post later why. Alyssa is doing wonderful and I saw her myself last Friday walking and smiling - doing just great.

Our other little Brave Heart, Logan, is having his surgery tomorrow - the Fontan. Logan and his family are a testimony to me and Team Brave Hearts are praying today during pre-op and will be contunuing in prayer until Logan is home and on the mend. I'll post and let everyone know how this strong and beautiful little boy is doing.

On the home front we have been insanely busy - we put our house on the market and began looking for a new home closer to our parents and to Evan's school. Know anyone that wants to move to KY???

We are also going on vacation with our whole family to Myrtle Beach and we are really looking forward to some time with them and away from work.

Evan started pre-school a couple of weeks ago and honestly I don't know if we are going to continue. He is having such a hard time - originally he did okay - cried during naptime - but for someone that had always either been with me or my Mom I thought that was pretty good. It has continually gotten worse. On Monday when Mom picked him up she called me and said he had black circles around his eyes and said that he cried most of the day. The teacher said it was for no reason and that one of the kids caused him a baby and he continued to cry. That is NOT like Evan - I figured I would be getting calls from school saying because of Evan's "rough and rowdy" nature he had pushed someone or something on that nature NOT that he has been crying all day. This is SO hard. I thought this was going to be such a good thing, we had researched and found a school close to my Mom - Christian - small - loving. I really do like the school, I'm just amazed that it seems Evan does not. Monday I had a long talk with him about why he is crying and all he ever says is that "Mommy I missed you and I needed you." He never tells me anything else. So, today I decided not to make a big deal about it just say - "Good Morning Evan - lets get ready for school." We did our morning routine and got in the car and headed to school - about half way there I looked in the mirror and Evan's bottom lip was quivering and I asked if he way okay, the tears started rolling and he said, "Mommy, I'm trying to be real strong but, I can't, I miss you too much." AHHHHHHHHHH - then my tears started and believe me that this morning was really, really hard. I hated leaving him crying - in fact I almost didn't - I called my Mom and asked her to pick him up before naptime and promised him Mamaw would be there soon. The teacher called me about a half hour later and said that she asked him to help her glue some stuff and he cheered up after a while - we'll see. Any advice???

Continue to Pray

A few of Team Brave Heart Mama's, including myself, went and visited Alyssa's family last night. Alyssa was very uncomfortable and having some blood pressure issues so we visited with her Mama a few seconds to let her know we are praying.
This is the update from this morning:
"Alyssa has had a few set backs in the last 12 hours or so. Her GI system is having a tough time getting started again and causing her considerable pain. She has been screaming a lot with very little sleep and it has been really difficult for Mom and Dad. They still aren't allowed to hold her yet and are having a really hard time comforting her. The doctors have re-inserted a tube to clear out her stomach and have restarted her IV blood pressure medicine. They have increased her pain medication and gave her a sedative last night. She finally was able to get a couple of hours of rest. "

Updates

I'm getting ready to go visit Alyssa's family myself but I did receive a message from another team member:
Yesterday afternoon-
"She had closed heart surgery (went through her side) and was not on the heart-lung by-pass machine. She was off the vent before her parents saw her in the PICU! Alyssa is recovering quickly....keep the prayers coming."
This morning-
"Let me start by saying Alyssa is the most amazing little girl I have ever known. Just hours after surgery the doctors had Alyssa sitting up in bed and talking. She was saying "all done" but I'm sure those words were music to her parents ears! Alyssa had a little rasp when breathing so the doctors did a chest x-ray and it came out clear. They did a breathing treatment this morning and hopefully this will clear up her lungs and airway. The doctors also took Alyssa off her Oxygen tube and started changing her Blood Pressure medicine. They want to try to give Alyssa some liquids today to see how her digestive system reacts."
I'll update more tomorrow.

Please Pray

I know the walk was very emotional for all of our families but, especially for Alyssa and Logan's. Alyssa is undergoing her first open heart surgery as I type in the wonderful hands of the nurses and Dr.'s at Kosair Childrens Hopsital. Alyssa's Mommy and Daddy were so strong and came yesterday to walk in Alyssa's honor. We are praying for you Alyssa.

Also, Logan's family was in attendence - Logan is a HLHS survivor as will be undergoing his Fontan in just 2 short weeks.

Heart Walk After Party 2007

Thanks to Shanna & Dan for opening your homes to the Team Brave Hearts crew for an after party. As you can see from the pictures, we had a blast. It was beautiful to sit back and see these children who have overcome and are still overcoming so many obstacles in their little lives to just be able to be kids and have fun - it brought tears to my eyes.

Kentuckiana Heart Walk 2007

The Walk was amazing!!! We have alway's been included in the Louisville Friends & Family team's and on Fri. night the president of AHA called and said that because of how much work we had done, we were going to be recognized as a company team and had our own spot at the beginning as a top walker team!!! Usually company teams are ranked and then Friends & Family teams are ranked - weren't we surprised to be the #1 Friends & Family team and the #5 Company team (out of some major corporations) raising an amazing $20,000.00 - WOW! Goes to show that everyone can make a difference - we started out as 3 families and have grown to 16. We were also asked to go live on the news with Angie Glotzbach (a heart survivor herself) on WAVE3 Louisville and quoted in the Courier Journal http://www.courier-journal.com/apps/pbcs.dll/article?AID=2007708260624 - getting awesome opportunities to raise awareness in so many ways.

Team Brave Hearts Kentuckiana AHA Heartwalk 2007

All of you that keep up with Evan's blog have been touched by CHD's in some way, either by Evan or your own child so, I wanted to post a link to his donation page for the American Heart Association's Kentuckiana 2007 Heartwalk. This is our 3rd walk and we will be walking again this year with other CHD families under "Team Brave Hearts". Our main goal in participating in this walk is to raise awareness of CHD's and funds for much needed research. If anyone would like to donate, his personal donation page link is: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=215841&lis=1&kntae215841=07A614B828344CA5959CA8FE623F5775&supId=136764053

1st Day of Pre-School

Camping Trip

T-Ball

Pictures

This has been such a week. We went camping on Nolin Lake for the weekend and had a blast with Eric's brother and sister in law. We came home Sun. and got things ready for Evan's first day of pre-school. Evan told me his belly hurt before bedtime and woke up about 10:30 and started vomiting and continued every hour for the rest of the night and started with the poo's Mon. morning so he missed his first day of school. I did about 10 loads of laundry Mon. and took Evan to the Dr. to confirm he had a 24 hr. virus. We rested most of Tue. and Evan's yuckiness stopped but he started running a 101.6 fever which also went away later on Tue. Evan's Dr. said as long as his yuckiness stopped and his fever was gone that he wasn't contagious so Evan got to start school on Wed. but, I'm not sure that was the best idea. They said he had lots of fun, was well behaved and a good helper but that at naptime he said his belly hurt and that he needed his Mommy to tell her he loved her, awwwhhhh. My Mom picked him up from school and they said he had been crying - she said he was pitiful. We had bank night for the heart walk on Sat. last night and last I heard we were less than $2000.00 away from out $20,000.00 goal - GO TEAM BRAVE HEARTS!!! We woke up this morning to hear there was a horrible accident on I-65 and that we would need to take alternate routes into town - turned our usual 1/2 hr. drive to 1 1/2 hrs. and then about a mile from my Mom's Evan said he needed to go to the potty and didn't make it. I walk into my Mom's and she is on the couch sick - ARGH - I can't handle much more of this. I'm at work just to catch up for an hour or two and then going to get him to go back home. Enjoy our summer and school pic's.

Brave Hearts Golf Scramble 2007

All I can say about Team Brave Hearts Golf Scramble 2007 for AHA is - WOW. We had a wonderful turnout of 80+ golfers despite the heat and raised over $5000.00 for the American Heart Association. It was a lot of work but so rewarding and our team is growing by leaps and bounds - we are a force to be reckoned with here in Kentuckiana. I'm amazed and blessed by the support we have received from our families, friends and our community. The walk is in two weeks. We also have a movie that was played during the scramble inside the clubhouse that got a lot of recognition from our local AHA president and I'll be posting it soon so, come back and prepared to be touched.

August = Busy

We have been having lots of fun and staying insanely busy. Evan started Wee T-Ball back in June with 3 of his best friends. They are so cute and it's been wonderful spending time with our friends every Saturday watching our boy's act crazy together on the field. This has really thrown me for a loop however since I work full-time and Saturday was my cleaning day and then Sunday was family/church day - now we are gone most of the day Saturday b/c after the game of course everyone has to go have lunch and then it's nap time. My house show's that we have been busy this summer - it makes Sunday such a busy day but, I wouldn't trade this time for anything - not even a clean house. Work has been busy as well - 2nd Qtr. presentations and meetings - it's our 100 year anniversary and we have been doing lots of fun stuff to celebrate. Eric has been working 70 hour weeks on top of all of this, making me feel sometimes like a single mom. I hate it for him, feel like he is missing so much and feeling a little overwhelmed myself but, this should pass soon - he is in heating/air and this is their busiest season. August does not slow down for us - AHA Dance Benefit, AHA Golf Scramble, AHA Heart Walk, camping trip, Evan starts pre-school & ending with a much needed Myrtle Beach vacation. Blogger is being mean and won't let me download my slide show so I'll leave you with a few pic's and try again later.

Some New Pic's

Nothing much going on here. We are have had our first meeting and kickoff party for the 2007 Kentuckiana Heart Walk. I'm so excited and need to get to work - the walk is going to be a whole month sooner than it usually is - so I have less time than I think. Here are some pictures from our meeting and unsuccessful group picture - boy, were the kids not having it that day. Also some pic's from the AHA kickoff at the Louisville Zoo.

Team Brave Hearts 2007

Lucas, Evan, Caleb,

Benjamin, Alyssa and Logan

Look at Evan, Caleb and Logan - they are fed up.

So we tried the cute sliding board group picture

this group picture was just not happening -

you can tell from a previous post that our golf scramble flyer ended up being done with a collage of individual pictures - LOL.

Friends for Life!!! Guests of Honor at the AHA 2007 Kentuckiana Heart Walk Zoo kickoff party.

Having lots of fun at the zoo.

More Pic's

Daddy and Evan feeding the Lorikeet's at the zoo.

Evan saying ahh sweetie to the Lorikeet.

Our ending ride on the zoo train. AHA had their kickoff party at the zoo b/c that is the winning prize this year - family season passes!

Prayers today for baby Elijah

Baby Elijah is having open heart surgery today - send up some prayers for him and his family - most of us unfortunately know how hard it is to hand over your little one.
http://www.babyporta.blogspot.com/

Cute little sayings

Eric and I had a very relaxing and pampering weekend in Brown Co. and I highly recommened The Manor at Tabor Hill to anyone that would be there visiting. It was beautiful weather, we could not have picked a better weekend. I did okay during the day but, once Eric went to sleep I really started missing Evan and other than enjoying alone time with Eric this weekend taught me that I'm a very lucky person to have been chosen to be Evan's Mommy and that although he is a rowdy and loud 3 year old that I need to treasure all of this and slow down a bit and remember these moments with him. I called and checked on him Sat. night and my Mom asked if he wanted to talk to me, he said no but that it was getting dark and that he was ready to go home, kept telling my Mom that it's dark out and I'm supposed to be home when it's dark in my bed. He started to cry and that made me sad... Mom said that when they went to bed she told him that we let him come stay with her because my Dad was out of town and that she would have been lonely and Evan said, "Awwhhh... Mamaw, that's what friends are for." She said he snuggled in and went to sleep after that, isn't that sweet...

Brown County IN. and Golf Scramble planning

Well, for the first time since Evan's birth, Eric and I are going away for the weekend just the two of us celebrating our 7th anniversary. We have chosen Manor at Tabor Hill Bed & Breakfast in Brown Co. Indiana - http://www.manorattaborhill.com/guestrooms.shtml - the master suite with in room massages for both of us and champagne before bed and a 4 course breakfast the next morning. I'm looking forward to some alone time and just slowing down a bit. There is lots of shopping to be done in Brown County and outlet malls on the way home so, I'll have to be careful to not go overboard. My parents will be entertaining Evan for the weekend and he will probably not even notice Mommy and Daddy are gone - I for one will definately miss him - hence the reason Mommy and Daddy have never left him overnight before now. I hoping although I will miss him that I will be able to enjoy this weekend away and also hope this is just what Eric and I need to re-connect.

Tomorrow AHA is hosting a kick-off party at the Louisville Zoo for top-walkers from 2006 and our 'Team Brave Hearts' will be in attendance. Evan is so looking forward to seeing the animals and playing in their new water park with his heart buddies. We are just starting to get things moving for our 2nd annual 'Team Brave Hearts' Golf Scramble which will be held at Glenmary Country Club on Aug. 12th. I have attached the flyer we are putting up for that. I'm so excited about our team this year and how many CHD families have joined us - this is such an amazing group to be a part of.

Cath. Results

I'm going to try to explain Monday's cath. results in the best way I know how - I'm still a little unsure myself and have a meeting with Evan's cardio today to get a better understanding. Evan was a real trooper even though he realized the minute we pulled into the parking garage where we were and was a very brave little boy the whole day. Once sedated the cardio came out and told us that today could be just exploratory, that even though the Vent. Perfusion Scan showed that the pressures were off between the left and right lung that they wouldn't know until they got in there what was really going on. They came out about 2 hours later and called us in the discussion room - aka the room that makes me feel like I could run screaming - and said that there were no benefits to doing another stent right now - that the pressures were really the same as they were post-stent last April and that the right pulmonary artery was narrowed now as well but that was actually helping push blood flow through the very narrowed left pulmonary artery. Then the blow - Evan will require another open heart surgery to place a conduit. I was totally stunned and have lived in a nice little world of cath. procedures only since he was 9 months old. I said I understood what he was saying but really I'm not sure - I believe that his valve is leaking more and both right and left pulmonary arteries are narrowed which makes the conduit necessary to replace them and the valve. His cardio did say that Evan is in excellent shape right now and they hope to put this off for as long as they can - even mentioning 10 yrs. If they could wait this long it is possible that only 1 surgery would be needed and they could place an adult size conduit and valve in - all in Evan's timing I suppose. They did start him back on Digoxin. He urged me to treat Evan as a normal child. We will continue our appt.'s with the cardio and then once a year do a Vent. Perfusion Scan and a cath. to see how things are going. Evan woke up from the cath. in recovery and the nurses came out and said he woke up and said, "My name is Evan, I'm 3 and I want my Mommy and Daddy" and continued to try to get up and walk out. They said they had to keep the popsicles coming to keep him still. He's not said a word about it since we left the hospital and is already back to his normal self. Me - I'm struggling with the thought of having to go through this again but am wondering if I'm ever going to learn the lesson of "Cast all your cares upon him, lay all of your burdens down at his feet and anytime I don't know what to do, cast all my cares upon him."

Date for the cath

We just got the call from Evan's Dr. and the cath. will be on May 25th. That is the day Eric and I would have left on our cruise had I not cancelled it - weird huh - instead of the Bahamas we'll be in Kosair's ICU.

ARGH.... the Dr. just called and b/c of scheduling the cath. has been changed to Monday, April 30th.

Rough Draft of AHA Poster

They sent us a copy of the rough draft of the poster they are going to use from the photo shoot last week. Evan is second from left and I couldn't help but laugh when I opened up the attachment - it's hard to take a good picture of one 3 yr. old, besides four. They did good.
We are getting ready for the 2nd Annual AHA Team Brave Hearts Golf Scramble and the planning is just beginning. The scramble will be on August 12th and the walk is on August 25th. The next few months will be very busy but, I find great fulfillment in being a part of this wonderful team and for the lifelong friendships we have made. More to come on that.
No word from Dr. McOmber as to when Dr. Recto's team will be available for the cath. - I'm sure we will hear soon. Sometimes the waiting is hard but sometimes getting a date is hard too - if that makes sense. The unknown is stressful but, when there is a date there is always worry to fill the spot. I've always been an extremely anxious person (probably an understatement) and for the 1st time in my life I'm seeking help to get ahold of that. I'm trying really hard.... I do NOT want to waste life away worrying. It's really hard for me. Maybe I'll go into more details at a later date but, just say a prayer for me.

Update from Dr. McOmber

We heard from Dr. McOmber on Monday and unfortunately he believes it is time to do another balloon angioplasty to expand the stent. He is contacting Dr. Recto, who did the stent implementation last April to see when he has an opening - this took over 2 months last time so, probably sometime this summer. Although this is not the news we were hoping for we are grateful that this can be done and Dr. McOmber said that he doesn't see any reason that they won't be able to fix this in the cath. lab the same as last time. I'll update when we have a date. I think most of you heart parents know that although I'm grateful and know that things could be worse, my heart is still breaking at what our Little Braveheart has to endure.

Also, American Heart Association called yesterday and they want our heartwalk "Team Brave Hearts" to be in a photo shoot next Thursday for their banners, posters and website! I'm so excited - I'll post the pic's when I get them!

Promised Pic's - Evan's 3rd B-Day

Some of my favorites