Cardio appt. news and UofL game benefiting Team Brave Hearts pics

We had our monthly cardio appt. yesterday and unfortunately the pressure in Evan's left pulmonary artery has gone over the mark - requiring intervention. We should be getting a call today with a heart cath. date. Following the heart cath. Evan will be presented to the heart board the following Monday and we should have a date for surgery the next day. Our hopes are this can be done in time that Evan is given enough of a recovery period to return to school with all the other kiddos in August. Evan of course understands all of this and had a good talk with is beloved cardio. His main concern was that he didn't want versed before the cath. Our cardio agreed that Evan would do fine without it so he and his Dr. made a plan to walk together into the cath lab and Evan will put the mask on himself. This made Evan feel much better. We told him the mask has a sleepy gas and he will fall asleep and Dr. M will take a tiny camera (I held up the post of the earring I was taking out and said - this size) and use a remote to guide it up to his heart to take pictures and then take the camera out and take the mask off and you will wake up and we will go home. Of course his response is... and then they will show the pictures to Dr. Austin and then I'll have to have surgery. I told him that, that is a possibility but reminded him of how awesome he did before. We talked for an hour at least... questions... answers... questions... answers... His need for security and stability are always so strong and he was only comforted when we were side by side talking or just being together. He slept well and the first words out of his mouth this morning were, "so it's just a cath right?" I'm praying he is having a good routine day at school. Teacher says he is doing fine.
A couple of weeks ago our support group, Team Brave Hearts, held a fundraising event at a UofL baseball event. It was an awesome day. Our Brave Heart kids got to come out on the field and our oldest Brave Heart read our mission statement. Evan got to throw the first pitch! After the 4th inning we had our Brave Hearts stand on top of the dug out holding signs that read THANK YOU while our oldest Brave Heart read a piece about our beloved surgeon, cardios and staff as they were brought on the field. It was a wonderful way for us to say thank you. UofL donated all food and drink monies that day to Team Brave Hearts - Thank you UofL for your awesome support. We have recently joined forces with Kosair Childrens Hospital Foundation and have an agreement to raise $100,000 to help build a Heart Patient only ICU. We are excited at the door opening to Kosair and our plans to help other families traveling the same path as ours. Enjoy the pictures of this awesome day.











Team Brave Hearts take the field




First Pitch




Receiving Baseballs (which Evan asked his surgeon to sign - how sweet)




Holding Thank You sign for the surgeon and cardiac team to see as they were entering the field to be recognized



Our Beloved Surgeon




Evan's favorite cardio nurses




Surgeon and a few of our Brave Heart kids (isn't it sweet that Evan & Alex are holding hands?)

Kindergarten Graduation Program

Evan's teacher and her assistant did a wonderful Kindergarten end of year program with lots of songs and poems and reciting. Evan was so proud to show off all he had learned with his friends to us and Mamaw and Papaw. Each kid got to go out into the crowd and pick someone to come up and do a song with them - A Tootie Tah Tah. Evan loved having me up there - especially the part "bottoms up, tongue out."











Bottoms out...




Awesome teachers! What a wonderful year!



Proud Mamaw and Papaw




Proud Parents!

Photo Shoot AHA & UofL Coach Strong

I feel so lucky and blessed to have such a strong network of heart friends locally and online. When myself and the other 2 first families met and started talking about making a support group called Team Brave Hearts I had no idea where it would take us and how much we would be able to accomplish together. When we met we wanted something to do... a way to connect and raise awareness. We started walking every year in our local American Heart Association Heart Walk and we grew and grew. Those walks definately have filled my heart with pride - walking with so many people wearing our shirts and everyone asking - who is Team Brave Hearts??? Our kids have been chosen (for the 2nd time) to be a part of the posters AHA puts around town promoting the walk. They are with the Univeristy of Louisville's new football coach - Coach Strong. The posters are suppose to say something like - The Strong family stands Strong for Kids with Heart Defects. It was such a neat experience and Evan just LOVED the coach. See below some of the pictures I took from the side lines.

UofL Baseball Game

This invite has gone out to friends and family but I wanted to post it here as well. I'm so excited about this event!

I wanted to invite all of my friends and family to a FREE UofL baseball game, featuring our very own Brave Hearts. One of the kids are going to throw out the first pitch and we are going to recognize our surgeon and cardiologists. We also receive proceeds from food and drink sales and most importantly we are getting the word out about Congenital Heart Defects. We have recently redirected our fundraising efforts to concentrate on Kosair Children's Hospital. Specifically, we are raising money to help support heart families and to build a separate ICU for heart patients.

Come out and support Kosair Children's Hospital, U of L baseball, Team Brave Hearts and the many devoted pediatric heart specialists.

C stands for Cath and not Cancer

I'm tired... I feel like I say that all the time but really, I am tired. I love my life - being a Mommy, working, running to Tae Kwon Do and baseball games. GO CUBS!

I've been sick pretty much since I started taking the full dose of Avonex a little over a month ago but, not as bad as I was warned so, I feel lucky. I had a horrible case of strep throat and then as soon as I quit the meds I came down with it again. I went to the Dr. and the strep was positive they also sent me for an xray as they were concerened with pnuemonia. The xray came back showing I did have it so I started antibiotics for it as well. It was recommened for a follow up xray in 10 days so I went for that. That was on the same day as Evan's cardio appt. It was decided there that we would have a cath. as soon at baseball season is over and surgery to follow unless a miracle happens in the cath lab. So looking at cath. in mid June and surgery in July. Sigh... I hate it. But he is my amazing little boy and I am the luckiest person to get to be his Mommy. By the way - he rides his bike now with no help whatsoever without training wheels & has his hair cut really really short (nickname chick magnet at school). So... we go to the baseball game and I cry with my best heart mama friends about the plans for cath and surgery. The next morning I'm up getting lunches and everything ready for the day and my phone rings. It was my Dr. and they want me to come in right now if I'm able to do a CT Scan. If you know me at all you know that isn't good enough for me so I begin to ask questions. What did they see? They saw no change so it must not be pneumonia with all the antibiotics you've been on. What are they checking for? For what it is. What do they think it could be? Oh.... umm.... it could be a subacute infection, or this or that or... cancer. I hungup and sat down in our spare bedroom on the other side of the house in fear I would wake Evan up and cried and cried and cried. This is the 2nd time since Christmas that my lymph nodes and other reasons have pointed Dr.'s to check for cancer. I was scared. I want to be okay, I have to be okay. But... who has cancer that didn't want to be okay? I was a mess that day. It was the latest I've ever dropped Evan off at school as I didn't want to wake him and him question my tear streaked face. He had enough to deal with just hearing he was having a cath the day before. My appointment was that afternoon and my parents were at my Dad's heart dr. appointment so between calling Eric, talking for a long time on the phone with my brother and a friend meeting me at Kohl's for some therapy shopping, I made it to time for my appointment. God put an angel in my path at the CT Scan. Like I said, I was a mess. The tech also had MS and was so comforting during the scan. It was a Friday and the scan wouldn't be read until Monday and she calmed me to be okay with that. However, that night my Dr. did call and it had been read. She said there were lymph nodes in my lungs that were calcified and that they were setting me up with a lung specialist - first thing Mon. morning. Again... I want to know what they are checking for and she said that it could be histoplasmosis, sarcoidosis, or something else and that they could not rule out cancer at that point. I went to the lung specialist and looking at the xrays and CT Scan he said he did not see any signs that lead him to believe it was cancer or sarcoidosis and that it looked like a classic histoplasmosis case - which by the way will go away on its own. I am following up in 6 months to make sure that things have stayed the same and no new places or the ones that are there haven't grown. I was relieved that he felt so confident but... my anxious self is still dealing with letting it go and not worrying. I have a problem... I admit that. I'm filled with anxiety and I'm constantly praying - talking myself down from a breakdown - giving it to God over and over again. For some reason I keep taking it back on myself but, again it is a constant battle raging within me. My MS is acting up - I'm not sleeping, I'm tired, my muscles ache. I'm sure it's stress.
So... that is the reason for my abscense. Oh... and work. The last year has been very rough on our group - unlike ever before. We thought things had calmed down but of all weeks, this week things are starting up again. Big changes. I fear more to come than we already know. That's just my anxious self talking again though. (I hate that I'm usually right!)

I'll leave you with a picture of Evan in our creek. We had a tremendous amount of rain last weekend and Evan (once the creek had gone down the next day) begged to put his boots on and fish for bull sharks!


Oh and another of his eyelashes when he fell asleep leaning against me. Aren't they beautiful?


Evan & Munc celebrating Munc's birthday.

Spring Break

I'm going ahead and posting this with pictures although its 2 weeks overdo... I'll post again in a few days with an update.
It's Spring Break here! I didn't get the whole week but we have some fun things planned for the next 2 days I did get off work. An update from last post - I did not make it through that big weekend! Later that night after I posted I started running a fever and thought I was dying the next morning. Was in bed all day with 103 temp and finally crawled to the car to the immediate care late Sat. with a dx of strep throat. I got meds and called my SIL who came over and covered the party pretty much for me. Thanks Melynda!!! Easter was fun and busy. I loved being with our families. We are so blessed. My Dad is doing well... stubborn but, well. This is quick because I'm trying to get my few days off started but wanted to update. Enjoy the pics of Evan and his friends coloring Easter eggs at our house. Also I'm going to try to download these messages Evan is always saving on my phone. Hope you can hear them.

OK... I tried several times to load the video with Evan talking but... I just can't get it to work and now it's 2 weeks later and I still haven't posted... It's not a video just voice recording from my phone - any ideas on how to download it to post here? It's too cute not to share.

Thankful

I've been so emotional and so thankful for my relationship with God to be there when I cry out to him. On Monday, the 15th I got a call at work that my Dad was having chest pain and was being taken to the local ER. My Mom told me to stay at work - that she would call when they got there. I remembered that they were running an errand for me and wanted to call her back to let her know that I would take care of it, not to worry. When I called she said she felt my Dad was worse than he had let on and that I should come. At the ER his blood enzymes were elevated so they admitted him and scheduled a stress test that was cancelled and a cath that was done the next day. The cath revealed 5 blockages. Open heart surgery was done on Fri., the 19th where a triple bypass was successful. Something cool - Evan's surgeon trained my Dad's surgeon. You would think after all I've seen with Evan this would be cake but... it's hard to see your Dad on the vent, restrained and confused. He is doing awesome - in true Dad fashion he went out to pick flowers yesterday - 6 days post op. He is driving my Mom crazy - my brother and I too. But, we wouldn't want it any other way.
Say a prayer for me and this weekend - after reading some of Kathy's post I don't think it's so bad after all.
I'm picking Evan up from school today
going to my parents to cut my Dad's hair and borrow some crystal
stopping at Kohls on the way home for David's 60th bday present
picking up the house
eating dinner
taking shot
tomorrow - get up and clean big time
Evan's batting practice
grocery big time
Evan's Tae Kwon Do exhibition
David's 60th bday party
Sun. - getting house decorated
preparing and setting up dinner
Eric's Mom and Dad's 50th wedding anniversary celebration AT MY HOUSE!!!

Cardio Update, MS Update, Bikes and a New Neice

Spring is finally starting to bring us some sunshine! I'm so glad the snow is gone. Although... I did see on the forecast there is still a slight chance for it. I hope not. Last weekend was beautiful here - it felt so wonderful to sit on the porch and let Evan play outside. He is getting better and better riding his bike without training wheels. He did learn how to stop without just falling over ; )




We had a cardio appointment last Thur. I say it all the time but, we are so blessed with a wonderful cardiologist. Dr. M said Evan doesn't play by the rules and has his own ideas for his rollercoaster ride. There were no changes at all. Dr. M expected it to change and had planned a cath for Spring break but, that was CANCELLED! I know it's coming, surgery too, but I'm happy he is doing so well it can wait. We will go back next month and see what he has to say. For now... we had 6 yr old machine pitch baseball tryouts this past week! We will soon hear about the team and hope he and his buddies make it together again this year. Also, Evan has Orange belt testing for Tae Kwon Do this Sat. He is so serious. He just loves it! I'm so proud of him, the head guy came up to me last week and said, "Are you Evan's Mom? I just wanted to tell you he is one bright kid, seriously." I told Evan he said that and Evan just beamed. School is still going awesome for him too. He achieved above average on almost all levels of his testing and the teacher said the one he received average on they hadn't even covered the material for that yet. BTW I can't wait until it's short weather... I can't find pants to fit Evan for anything - 6 is too small - even 6x but, 7 is too big. Sigh.
As for me, I'm doing okay. After lots of red tape through insurance, drug company, copay assistance program and specialty pharmacy, I've finally started the shots for my MS treatment. I started Avonex 3 weeks ago. My dr. has me on a 1/4 dose increase over 4 weeks to the full dose. This past Friday I took 3/4 dose. The needle is huge and is quite intimidating - 1 1/4" and 23 gauge. I was surprised at how little it hurt though. A nurse came to our house and trained me on how to give it to myself and I'm doing good with that. I'm following all the hints and helpful advice I was given... lots of water day before and day of shot day, eat a good dinner, lay out shot for 3-4 hrs. before shot time, take Tylenol PM right at shot time, ice pack leg for 5 min., give shot and go to bed. I'm taking it every Fri. night at bedtime. I've been warned of the side effects that happen to 90%+ of people - they are flu like symptoms for up to 4 months after starting the shots. The few people I know personally that take the shots had severe chills about 3 hours after shot time. The first shot I had a slight headache - I'm not sure it was shot related though as I was so scared I probably gave myself the headache and I also set the alarm and took an extra dose of Tylenol PM (I won't do that again.) The second dose I had no reaction at all. This last week I did wake up very cold about 3 hours after the shot but was able to go back to sleep and felt fine Sat. morning. The nurse said I won't know for sure until I'm taking a full dose but, I'm hoping that I'm in the 10% that does fine.
We welcomed a new neice to my sister in laws family this past week! Evan is quite smitten with Taylor. She had some trouble breathing the morning she was born and was moved into the NICU. I had told Evan that he might not be able to go to TKD practice that night if we were needed at the hospital. He said, "oh... if they need us to follow the ambulance to Kosair, we should do that and I'll tell my Dr.'s and nurses." So sweet... She ended up not needing to be transferred and is doing fine. Evan was so excited to get to go see her and sat right next to me while I held her talking to her. He even asked if he could hold her! When Eric held her she started to cry and Evan had just gotten up, he came right back and said, "I think she likes me!" When we were leaving a nurse came in to take her to the nursery to be weighed and Evan looked at me and said, "Mom, we don't even know her - should we follow her?" Congratulations Megan and Joey - Welcome baby Taylor!

Cardio Update

I'm sick of snow. I don't remember a winter when we have had so much snow here. The kids are going to be going to school all summer. They are already reporting another good storm this weekend. Please hurry Spring...
Last Tue. night Evan woke up running a temperature and complaining of his ear. By complaining I mean screaming "my ear, my ear" over and over. Poor thing. He finally calmed down and sat up in bed and watched TV. I got an appointment for him the next morning and of course he fell back asleep just when it was time to get him up to get ready. This is his first ear infection since he was 3 months old. We missed 2 full nights of sleep. Thankfully the medicine kicked in and he is all better now, just 2 days of meds left. Funny story about the medicine... The Dr. came in and looked him over and said, "Evan, you have an ear infection... I wonder what kind of medicine I should prescribe you." Evan responded with, "well, I know what your not going to give me and that's liquids. I vomit liquids and I need a shot or a pill and I like the plastic pills best." When we got home and I opened his medicine bottle and pulled out this huge 500mg Augmentin pills I thought he would change his mind but nope... he was so happy it wasn't liquid. Crazy kid.
Last Thur. we had a cardio appointment. This was our first since November so I was anxious to get back and see what our cardio had to say. After his echo he told us that there is just no way to know what exactly is going on with that left pulmonary artery without doing a cath. They can tell that the artery is narrowed with the echo but not why. The valve is doing great, no leaks. He thinks they should do a cath. to find out why the artery is narrowed. He believes Evan's body has caused it. He does believe the surgery will need to be done again soon and probably this Summer. We are going back in Mar. and will probably schedule a cath. for Spring break. At this point his heart was not enlarged so it seems to be handling this well. Evan's lpa has always been small and been the main reason for cath's/surgery. If Evan's body *causes* it narrow I asked wouldn't it just continue on a new one. The response was if that was why then yes but if they were able to put a really big one in and it narrowed a little bit and he didn't grow a lot it would be good enough. Evan had a huge growth spurt after this last surgery. Like 10lbs. and 2 inches in 6 months. The hopes were and would be again if the surgery was redone, that the artery would last until adulthood where they could do it one last time. In the mean time Evan is doing just fine so, we'll see in March what they say.




This was after the first snow looking out off our deck.




Evan and his snowman.

Evan turns 6!

My baby turned 6 this past weekend! On Friday night we were watching movies and he crawled up in my lap and told me that he was going to miss being 5. I told him I was going to miss him being 5 but that I bet 6 was going to be awesome! We had some scare that the party would be snowed out and I threatened my closest friends that snow or no snow they better put in 4WD and be there! This party was paid for! We ended up lucking out of the big snow but several friends got stomach bugs and didn't make it : (
It was great fun for those that did though! Seriously, I think this was one of his funnest parties yet. I had it at the Tae Kwon Do place he goes to and MAN... they did everything. You know how those - we do all the work - parties usually are. The ones were you are running around ordering pizza and serving and getting more drinks. This was NOTHING like that. They asked Evan what he wanted his party and cake theme to be and of course he said Star Wars. We paid the party fee - which was less than his other parties - and that was it. We showed up and the cake was there - just like Evan had ordered. The instructors played over an hour of fun games with the kids. The adults had to learn some moves too! Kids broke boards and became Tae Kwon Do experts. They moved us into the other room and served us all pizza and drinks and then cake. When the party was over they came to me and asked which car was ours and loaded it with presents, cake and left over pizza. Wow... that was easy! Evan had a great day!
We have gotten quite a bit of snow the past few weeks. Enough of it if you ask me. GO AWAY! Spring come with all your pretty flower and sunshine. We are expected to be dumped on again tonight. Evan wants snow cream so bring it on but, after that please stop.
Enjoy snow and birthday pictures.




Evan's friends breaking boards!




Learning some moves




Evan being a black belt on his teacher




Jolly happy souls!

Some Thoughtful Moments

Twice this week in the car Evan has had some really thoughtful moments. I wanted to capture them here because I knew I would forget exactly what he said. Earlier this week we were headed home and Evan asked how many days it was to his birthday. I replied that it was 10 days away. He then said that we hadn't been to see Dr. M lately and that he missed him. I told him we would be going again just a few days after his birthday. He said that going there was not like going to the Dr. but like going to see friends. (Awwwhhh...) I told him that I was glad he felt that way. Then he said... "Mommy... Dr. McOmber is my hero." I told him that if he felt that way that the next time we were there he should tell him that. He went on to say "I don't want anyone else touching my heart other than Dr. McOmber - you know... him and Dr. Austin - they kinda saved my life." By now I'm glad he can't see my face as tears are welling up and I choke out... "your right buddy, they did." And he was done and started talking all about his day. Believe me... he talks your ear off. He tells me in detail everyday when I pick him up about everything. He is so funny. And sweet.
So... today, we are getting in the car to go to school and he is talking about one of his close friends Lucas because he is pretty sick the past day or so and knew that meant no weekend play time for them. Lucas' family adopted our Jameson a year and a half ago. Evan said that he doesn't really like babies but that Jameson has always been sweet and that he has always loved baby Jameson... just like a brother. He went on saying how some friends are family and some friends are friends and was naming the ones he calls family. By now we had gotten to school and he had climbed into the front seat so I could drop him off in the car rider line. He continues to talk about our friends and is just rubbing my arm. So sweet in thought about the people we call family. Again... I hugged him tight and gave him kisses (which he still loves and allows me to do even in the car rider line) and out the door he went. These thoughtful moments I'll cherish forever.




Pillow Fighting



Time for Rest!

Yellow Belt

Evan tested and was awarded his yellow belt in Tae Kwon Do this past weekend! He was so proud! He is really loving TKD. I had been taking him to lessons but I started a water aerobics class on TKD nights so Eric has been taking Evan. I have wanted to do something like that forever but I always feel so guilty going after work somewhere when I have already been gone all day. So, it's nice that Evan is busy with TKD while I'm doing that.
We had some snow. Enough to go sledding on! We went sledding everyday when we got home for 20 minutes or so. I should clarify that Eric and Evan went sledding and that Mommy stood from her bedroom window by the hent vent taking pictures! It pays off to have a big hill for a backyard on days like those.





My Dad turned 68 this past week. We are blessed to have him with us still. He was electrocuted 11 years ago with 15,000 volts at his job. I swear he has nine lives. He frustrates me to death but boy do I love him. Evan loves his Papaw!




My work moved locations after 11 years. I work at a big shipping company and we have several locations all over the city. I have been fortunate to work at one of the smaller more office like facilities for a long time. It was very convienant to run in and out. I'm at the airport now and there is lots of security getting in and tram rides to my office. The office itself isn't bad at all - just getting here that is a pain! I'm sure going to miss my old office...
I haven't started my Avonex (betaferon for MS) shots yet. I'm still working through insurance and pharmacy red tape. Once I do begin I will take the shot once a week on Friday evenings. Until my body adjust I'm warned that I could feel flu like symptoms for the first several months. I'm not looking forward to that. I keep telling everyone I'm going to be healthier than ever now that I know I have MS. I will start the shots, I've started water aerobics twice a week, I have lots of walking into my new office, I can't run out to lunch anymore, etc. etc. LOL.

Happy New Year!

That is what my neurologist said late Thursday after one of our many phone calls. I just laughed and said, "Happy New Year to you too!" My spinal tap came back as another confirmation that I have MS. I have now had every test you can possibly have and they have all come back positive for MS. Thankfully most of the tests are back and they have tested negative for everything else, so it is just MS I'm dealing with. The neuro suggest immediate treatement with an interferon drug to slow the progress. I have a telephone conference with him today and I'm sure we will be setting up an appointment to get this started. My husband is not looking forward to giving me an intramuscular injection once a week but, I'm not looking forward to getting one either.
I have gone through all emotions hearing this news. I think I'm at - let's just deal with it - at this point. I was so angry last Wed. and just wanted to throw all the material in the garbage and not answer the neuro's phone calls. I wanted to stay home and in bed, leave me alone. A friend called and tried to get me up and going - thank God for good friends. I declined and stayed in bed all day. Eric and I have both been off for the holidays and I'm thankful. He has done all the running for me and that helped me be able to rest. I have been so physically tired of dealing with this. My mind goes and goes but my body feels tired. My friend called again New Years Eve and told me we were coming over and we were going to have fun! We had an awesome time and it was so good for me to draw me out of my funk. She had gotten a new game called Quelf and it was hilarious to see my friend running around the kitchen trying to get us to guess that she was a cowboy riding an ostrich on a beach and her husband was a beached whale. I have video of me having to spend the entire evening speaking like an evangelical preacher. We went outside with the kiddos and banged pots and pans and threw confetti to ring in the new year. My Mom and my brother took me to see the Broadway show this past Sun. of my favorite movie, White Christmas and that was so much fun! So bring on 2010!

Christmas 2009

It's hard to believe Christmas is over and gone and 2010 is just days away. We had a blessed Christmas with family and friends. I Love Christmas - always makes our house look bare when we take down the tree and Christmas village. I told Eric that I think our house is made for Christmas... I just love it in the evening with the tree and village glowing. Evan wanted 2 things from Santa - a pogo stick and an air hockey table. Originally I had found a smaller air hockey table at Target but after attending a little boy's birthday party who had a mega daddy air hockey table Evan let us know that was the kind he wanted. Luckily Santa got a crazy deal and pulled through. Santa sent Evan an email video this year and that made Evan's eyes almost pop out of his head. Christmas morning Santa sent Evan on a Scavenger hunt to find his air hockey table and that was right up Evan's alley. My favorite gifts are the Shark floor steam cleaner and waterpik shower head. I love a clean house and a long shower! This year there was something new in Louisville to do at Christmas - http://www.louisvillemegacavern.com/pages/lights-under-louisville.php. We were excited and headed out with our BFF's. Two hours and $20 later I'm just glad we had friends with us so we can at least say we had a nice visit! Santa came through our neighborhood this year thanks to our local fire dept. That was AWESOME! I was so glad we were home and Evan even had some friends here so they got to share in that excitement too! We took Evan caroling for the first time this year. We went to a few nursing homes and the joy on the older peoples faces was priceless and Evan was a good sport and I believe felt good about the joy he was giving them. When saying prayers Christmas Eve Evan added "Happy Birthday Jesus." That made me smile... I hope we are never too busy to remember the real reason for the season. I've enjoyed Christmas and Evan's excitement. It's been a wonderful time and I'm sad to see it end.

I've dreaded tomorrow for a week now. Christmas ending meant the last of my test were a few days away. I've undergone most of the test already from the neuro and from the results of them he has confirmed a diagnosis of MS. The first meeting with the neuro did not raise many concerns and I was pretty sure nothing would come of the symptoms I've had the last few years. When the MRI came back with 11 lesions on my brain I cried for days. I'm mostly worried about not wanting to change (I know.) I want to be the Mom I am today still tomorrow and although I realize that more than likely I will be, I'm scared. I went through an electrical study and visual test a few weeks ago and they too came back abnormal too. These results haven't changed the way I feel (pretty normal) but hearing that diagnosis has definately been stressful. Guess what? Stress causes outbreaks of MS symptoms so that has been fun too... I'm stressed because I find out I have MS so I cause my legs to go numb because stress causes MS episodes. My symptoms started the Dec. after Evan was born with vertigo and then in 2007 and 2008 a period of leg numbness and some eye things that weren't explainable. I also started getting very very hot the last few years (early menopause?). Lately I've started having trouble getting up with my legs and bottoms of my feet hurting the first few seconds until I get moving. Come to find out all of these are MS symptoms. I go for my final test tomorrow. I'm dreading it. I'm having a spinal tap to confirm the diagnosis and to rule anything else out. Pray for me and for my neuro to know what medicine I need to slow the progression. I feel like I know lots about hearts (I don't but I feel like I do sometimes) but I'm clueless about MS so I have lots to learn.

Mommy needing your prayers...

There has been some surprising events that have taken place since my last post. I had promised some picture updates but, everytime I come here to post I can't think so I logoff. So instead of avoiding the blog because I don't know what to say, I'll just go ahead and say it. For the past several years I have experienced some health issues that could either be symptoms of their own little things or when all put together symptoms of something larger. Because of some family history and the urging of my family Dr. to take care of myself I scheduled an appointment with a neuro. Although there wasn't much fear that something would come back they went ahead and did some test to make sure. The test did come back with something and to confirm the diagnosis more test are needed. Since my insurance changes in Jan. (not for the better) we are trying to get all of these test done this month. These test start tomorrow and aren't going to be fun. Say a prayer for me...

Evan is clueless to my own medical issues right now and I plan to keep it that way. He just started Tae Kwon Do and LOVES it! Man are those practices loud... I hear "AY YAH" in my sleep.

We are all decorated for Christmas and Evan is very excited. Does anyone else have elf magic in their families traditions? A girl at work is doing this with her little girl and it seems so cute. I keep debating if Evan should ask for an Elf to visit us...
http://www.elf-magic.com/

Jump Rope for Heart

I'm going to have to break up this post into a few posts so as to keep them a little shorter! I've had the last week off and that did not equal extra blog time but I had a great week off with my little guy. I have pictures to share with each post - I promise!

The Friday before school was off for Thanksgiving break, Evan's school participated in Jump Rope for Heart. Evan brought home the little flyer that asked kids to jump for other kids whose hearts aren't perfect. The flyer asked you who you were jumping for, I just smiled and wrote in - "myself". AHA had the same little website set up as they do for the Heart Walk to raise money. Since I felt like I had just asked all family and friends to donate for the walk I didn't send emails out like crazy and just told grandparents and of course Munc. On Evan's website I put the same picture and story as I did for the walk to make it easy. One of Evan's heart buddies is also a school buddy and his Mom had set his little webpage up the same way. We talked about how awesome it was they were doing Jump Rope for Heart and that we should let the boys wear their heart walk Team Brave Hearts shirts the day they jumped. I was in the carpool line the next day and the vp came up to the car and asked that I pull into a parking place. She had a smile on her face so I figured my angel had done no wrong! I pulled in and the PE teacher came walking with Evan. They said they had heard Evan had had heart surgery (gasp - heard about it - you better have read that book I wrote when I registered him, LOL) and would I have a little something they could read to the school and show them Jump Rope for Heart helps kids just like them - kids even in their own school. I said of course... told them we had worked with AHA for the last 5 years and that Caleb was also a heart kid and they are on a team called Team Brave Hearts and they have little shirts that say I'm a Survivor... yada yada yada. They were thrilled we were willing to participate and Evan and Caleb were excited to be introduced to the school as Heart Heroes. Caleb's Mom and I worked together and made a flyer with some of their picture on it and a kid version story of their walk with heart defects. Caleb's Mom and I came to the Pep Rally with cameras and camcorder ready and proud smiles on our faces. The pep rally began with Jump Rope for Heart hoorays. The PE teacher was called up and said she wanted to share a story and read the flyer and then told the kids that these 2 Heart Heroes were Falcon students and they began to cheer. Evan and Caleb stood up and walked to the front with their little arms linked. We stood with tears streaming at how awesome it was that our school would recognize them in such a way. Evan and Caleb said that they got "big applause." I think they both felt very special! Isn't that awesome?!? Enjoy the picture of the Falcon Heart Heroes.

Cardio Appointment Update

Evan had a cardio appointment yesterday. I love that Evan loves to go there. He pictures it more going to visit friends than going to the Dr. That speaks for just how awesome our Dr. and his staff are. While doing the echo Dr. McOmber and Evan just talked and laughed trading Disney stories as he went the week after us. When he was done Evan asked Dr. McOmber if everything was great and he told him that the straw wasn't great - Evan asked him if it was broken and he told him absolutely not and that no cath was needed - Evan gave a big waahoo to this. Dr. McOmber told us that there has been no change since June. Since the pressures changed so quickly from April to June he expected them to continue to get worse and that isn't happening. We expected to be scheduled for a cath. on Christmas break but Dr. said that since there isn't a need for something to be done right now he didn't think it was time for a cath. He said that Evan's heart looks great, the donor valve isn't leaking one bit and his heart isn't enlarged. This pesky left pulmonary artery is always going to give us fits I guess. So we were told to have a wonderful holiday season and we could come back in Feb.! He did reassure us that if he thought Evan was going to need a cath in early 2010 he would go ahead now while he was on break but that, he didn't think that would happen. Evan has now gone 1 whole year without a cath, surgery or even a vent scan!

Have to share something funny that happened this morning. Last Fri. I went Christmas shopping and got some great deals. I put all the stuff in the very back of our Explorer and told Eric to make sure to move it to the basement and hide it when he got home. Eric has been working 16 hr. days and hasn't been home to move the stuff. I can't move it because Evan is always with me. That leads me to this morning...When I get into the car rider line at school, Evan always unbuckles and gets into the front passenger seat. Today when we got there he unbuckled but stayed in the back seat bouncing around and then I heard,
Evan - "OOOOHHHH, MOM - I SEE BENDAROOS!!!"
Thankfully his little friends birthday is Sat. and that is what we got him. I said, "Evan, get up here now, those are for Lucas."
Evan - "OOOHH MOMMY, I think I saw something big and it was black and red was it something Micky Mouse? You know I had Bendaroos on my list too... I really want Bendaroos - you didn't forget did you?"
Mommy - "I didn't forget but don't look back there anymore. There are things for you from Mommy and Daddy for Christmas. If you see them I will have to take them back."
Evan starts crying - "Mommy... I think I did see Pixos... please don't take it back."
Mommy - "Don't look again and I won't take anything back."
Evan - "Well then can you tell me if I saw Pixos and what else is back there? If you tell me I will tell you what I'm getting you for Christmas."
Mommy - "I don't want to know what I'm getting for Christmas and no I'm not telling you."
Evan - "Okay... I can't wait for Christmas. I've only been bad a few times for for the most part I've been really good."

The rest of the time he talked all about Santa and was so excited. I hate that he saw his gift but hopefully he isn't sure and it was so cute!

Enjoy a pic from Disney of my brother and Evan.