I thought May was bad............

At the beginning of May when I looked at the calender I thought...."Oh this is going to be one crazy month" I think this weekend I just topped it.

Friday morning I got Katie off to school, fed Jack and Maddie breakfast, dropped Jack off and Linda's (Katie's godmother) and headed up the highway for the 70+ mile trip to Maddie's specialist. About 2/3 of the way there I smelled sour fruit. I turned around and Maddie had just vomited her entire breakfast in the car seat.

The ride to the specialist from my house is on a two lane country road with almost no side road to pull over (farm country). It is a beautiful ride and usually look forward to it but today is not one of them. When I finally got to the Children's Hospital parking lot I cleaned her up; changed her clothes, wiped her face and hands, wiped out the care seat all the usual suspects in a car vomiting. Luckily, most of it went down the front of her and not in the car seat itself.

When we get into the office for the appointment Maddie is all smiles and ready to show everyone who's boss. When I told the nurse I needed to strip Maddie and put a clean diaper on her she looked at me and said that is not how we weigh the children here. I explained to her that is how the pediatrician and nutritionist weighs her and that is how we need her weighed today. Before I could explain what had been happening to Maddie and why we need the weight done the same as the others she tells me again that is not how we weigh the children here.

After what I had already experienced this morning I just looked at her and said if you would like I can call the pediatrician and make them insist you weigh her the same as the others or you can take my word for it. At this point I took my phone out and proceeded to start dialing. Irritated she said we have to go in a room first then come back out. As I took Maddie's clothes off and she saw the faded scar she never said another word. She was also very nice to us. What kills me is that if she would had looked in the chart before she assumed I was just being difficult all of that could have been avoided.

When I put Maddie on the baby scale I closed my eyes......................as I opened one of them I saw 22.00. I just threw my arms up in the air and said, "YES!!!" Thank you for all of you who are praying for her still.

In case you were wondering unless Maddie shows signs of struggling to breathe for any reason she can stay off ALL the meds.

So, I head back home and have to get my stuff to my friends house as we are having a garage sale Saturday morning. So here I am all three kids at my friends house trying to get everything ready for the garage sale. I must be a gluten for punishment.

All the sudden Jack is screaming..........you know the scream as soon as you hear it you better come running. Jack was scratched by my friends cat who has feline aids. I take Jack in the bathroom my friend is on the phone to the vet. Feline aids is not like regular aids and can not be passed from feline to human. However, other things can be and he should see a doctor. Not sure what to do I look at Jack's arm and it is swelling and looks odd and is really red.

I drop Katie and Maddie off to Phil and Jack, my friend and myself head to the Urgent Care. I was reminded by my mother that Jack is also allergic to cats. Because we no longer have the cats, Jack takes a daily medicine for the allergy and has never had a problem with her cat I kind of forgot about it.

Thankfully the Urgent Care was practically empty we were able to get in and see a doctor fairly quickly. Jack will be fine. Because of the redness to his arm he was treated for cat scratch fever (yes there really is such a thing) and we left. I dropped Jack off to Phil and have to get back to my friends because we are now really behind.

We get everything done get something to eat and I finally crash at about 1 am. I set my alarm for 4:30am so I could get a shower and be ready to greet people at 7am. Needless to say the shower helped.

Did I mentioned I agreed to volunteer at the hospital for four hours Saturday too. So my mom comes and helps out at the garage sale so I can leave at 12:00 to be at the hospital by one to volunteer. This event I volunteered for is called "Heart of a Champion". It is a day where upcoming 10th, 11th and 12th graders get a review (like a physical) but their heart is also checked via an echo. It is a huge event and free to the athlete. I haven't heard a total yet but it was probably close to 1700 students.

So for 4+ hours I stood at the very end of the review to find out what color paper each female athlete received before they could exit the building and recorded it. Sounds pretty boring but it wasn't I met Thomas Davis from the Carolina Panthers, chatted with some of the nurses who cared for Maddie after surgery, made new connections to help the hospital out further. Over all it was a good afternoon. I left the hospital about 5:40pm

But my day was not over. I still had to go back to my friends house, get my unsold stuff and then get home. I walked in the door about 7:30pm. I was so exhausted by the time I ate dinner and visited with the kids and put them to bed I couldn't sleep. I think I finally died about 11:45pm. Thankfully the kids slept till 7:30.

I was so grateful Phil took care of the kids during this busy time and they were all in one piece once I finally got to hang out with them. However my house was in desperate need of some TLC. I worked on it some after breakfast but by lunchtime I was exhausted again. After lunch I made all of the kids "rest" including Mommy. Yes I successfully had all three kids napping at the same time and took a nap too. In case you were wondering Phil had to do a little work for a friend and was gone until about 5pm today.

Feeling much better after nap time I finished up the house, started dinner on the grill, kids got showers and currently every one in the house is sleeping but me and it isn't even 10pm yet.

I think I will get a little ice cream before I head off to bed.

Hoping to have a quiet week.

TTFN~

Trek to the Children's Hospital

Friday we are headed to the pediatric pulmonologist to find out about Madelynn's trial run. Back in February when Madelynn had a check up the doctor decided to let Madelynn take two more weeks of breathing treatments and then told us to stop them. So as of the last week of February she has not had a breathing treatment.

Phil and I talked about it and always thought she would be ok with out the treatments but you just never know. There are times when I can look at Madelynn and tell you something is really wrong. Being her mom I just knew. Other times I hoped for things for her and hoped them so long and so hard that when they didn't come true I felt I had failed her in some way.

I believe that tomorrow's visit will just be a confirmation that for now we can just go on and live a normal life of a family of six (don't forget Cami). Over the last few weeks that realization is starting to sink in. I am still cautious with germs and who we are around but in some cases I feel like a RECOVERED heart family. Madelynn's biggest hurdles after her heart surgery was not her heart it was all the other things that went wrong.

Some days my mind wanders about all the possibilities of what could go wrong. You see with the heart anything can go wrong and everything can go right. Right now were are at the everything can go right. Since I discovered about two weeks ago that Madelynn lost a pound in less than 5 days she has started eating. Right after Camp LuCK she really started to put some food down and asking for food. Which are all good signs. We will get a weight tomorrow and I can't wait to see what it is. My hope is for a small victory. I would be happy just to see that she put that pound back on and ecstatic if she weighed more 21lbs 6oz.

Sometimes I worry when I see her running, playing, jumping, giggling that I will forget what to look for in case something goes wrong. I also hear stories of children that only lived for 5, 6 or 10 years and then they are gone. To me that is like some kind of cruel joke. Your children are supposed to live beyond you and bury you. Parents are not supposed to bury their children. I just worry the way her aorta is designed it will not be able to withstand her growing and adult body.

You see I have said before that Madelynn's CHD is a very common one. It is so common in fact that it is not usually repaired with open heart surgery. It is done with a less invasive surgery through he armpit. There are also diagrams of her defect that when the repair is done the surgeon just checks the box as to which one the child had. Madelynn's surgeon had to draw a picture of her aorta and there is no way to know if the design of her aorta will be able to withstand her adult body because it needed an "extended" repair.

Although I have been told sometimes it is a very dangerous thing............all we can do is Hope. Hope that she is able to live a normal life. Hope that this journey in a few years will all be a memory. Hope that if her heart can not withstand her growing body that by the time it needs some type of repair the tools and knowledge are available to save her. Hope that she will live life to the fullest. Hope that she will not squander this second chance. Hope that whatever the reason she was chosen to be on this earth that one day I understand why. Hope just because sometimes it is the only thing that gives us peace.

So today I will laugh, smile and play with Madelynn, I will cheer Kaitlynn as she finishes kindergarten next week and I will help Jack understand "Why" and not just because Mommy said so.

It will be a busy weekend I will post results of the visit sometime this weekend.

TTFN~

Goodbye May......I need a nap.

The month of May has been quite exhausting......cheerleading competition, trip to Newport News, Camp LuCK, and this past weekend Phil's parents came to visit. For many reasons I am looking forward to going to work Tuesday. Mostly, I think, is just to get back to normal everyday life. We did have a nice visit with his parents and I was......the best way I can tell is.... very proud of Phil. I can't go into great detail about it, but he reminded me this weekend why I agreed to marry back in 97.

Due to the fact it was to rain most of the weekend, I mowed the grass Friday and I was so glad I did. Between the rain and the hose being left on overnight the back yard needed an ark.....badly. We found a sitter for the kids, Thanks Heather, and went to dinner, Saturday. I have to say that is the most I have ever laughed with Phil and his parents. It was a great dinner. The kids, Phil and his parents went to the bookstore Sunday and had a ball. They came home with their new books and spent the afternoon reading them.

I did promise the kids I would take them to the park or schoolyard to play so before today was a total washout....literally....I took them up to the school to play on the playground. Did I mention Madelynn likes to swing, Kaitlynn likes the monkey bars, Jack just runs back and forth between the slides and swings. Suddenly we heard big rolls of thunder and decided it was best to go home. It rained small children, cats and dogs, you name it it fell out of the sky today. I was really glad we went this morning.

Before we left the schoolyard to avoid the rain I did get some pictures.

If nothing else I hope everyone was able to just enjoy their families this weekend. To those service men and women that could not be with their families this weekend......from our family to your we THANK YOU very much.

TTFN~

New World Record

I am sure it isn't really but I could have sworn I set the record for the longest projectile of a liquid this evening. We are about to have some house guests and we were in need of our monthly grocery shopping. Except for bread, eggs and milk I try to only go to the grocery store once a month.

My theory is if we run out we didn't need it or it can wait till the next shopping trip. It is an exhausting trip to BJ's stocking up and then trying to manipulate the pantry to make it all fit. I was moving things around and a very large jar of spaghetti sauce committed food-cide from the top shelf. It hit the floor like a bullet and about scared the pee out of me.

Standing on a stool the plastic jar didn't break but it hit the ground with such force it shattered the lid right off. This wasn't just any jar it was a GINORMOUS jar from the bulk food store. It was all over the floor, walls, doors, appliances, half way across the room in the kitchen sink and easily 25 feet away on the wall. Talk about some powerful sauce. I was SO MAD!!!

I had not eaten much today and was hungry, had not seen the kids all day and wanted to hang out with them, and still had half my groceries to put away after I cleaned up the sauce. I felt like I was on one of those science shows testing projectile objects. The best part was when Phil walked in the door and I told him what happened.

He looked at me and said, ''How did you manage to make such a mess in the kitchen and not get one drop on you?"

There was no answer it was just one of those strange phenomenon, I guess.

So what did I learn today?

I know how to launch a full jar of spaghetti sauce at least 25 feet.....wanna see???

Happy Middle of the week!

TTFN~

1st Annual Camp LuCK 2010

Shown below are just a few of my personal photos from Camp LuCK. It is not a typo it is to represent Levin Cardiac Kids (LCK). We had the glorious pleasure of taking all of our children to Camp Cherokee in Kings Mountain for the weekend for the first ever Camp LuCK for heart kids, siblings and parents.

The whole experience was Great!! We stayed in a cabin and the kids depending on their age were able to do all the regular camp experience fun. We made new friends and bonded with existing friends. It is a weekend I will treasure forever. We did crafts, stories, hiking, songs and tons of good food.

There are a few people that deserve a huge THANK YOU Jay "Bird" Thompson, Kim Jackson and Dr. Rene Herlong for undertaking this wonderful family time. There were "retired" camp counselors that came back just for this event. Some of them travelled as many as seven hours one way just to make sure we had a great time and they did not disappoint. Our children may have special hearts. However, those that made this weekend special have HUGE hearts.

Probably the best story of the weekend was the first five minutes we arrived. From turning off the highway into the campground it was a drive that took you deep inside. As we parked and started to walk to the mess hall and common area Kaitlynn started crying, really crying. I asked her what was wrong. "Mommy I don't want to sleep in the trees with the animals I want to go home."

It took a lot of reassuring in between the giggling and the tour of our cabin to prove to her that we were sleeping indoors and she would be safe. Once she acclimated herself to the campground she was bringing me frogs, looking for crickets and spiders all with her cow flashlight that moos every time you turn it on.

What a wonderful family time we had. Some moments were a little stressful as the kids are still pretty young. But we had fun and will be in line to sign up next year.

Enjoy the photos.

TTFN~

A sister's bond can never be broken..............

Well this morning I woke up at our last day at Camp LuCK and have so many stories to share about it. However, I want to go through my pictures first before sharing our camping adventure.

With all that said, I have another story that must be shared. It is a memory I never want to forget. So not that long ago I was in the doctor's office with Kaitlynn and Madelynn. They were each there for very different reasons but ended with a similar result: The dreaded SHOT.

Something I have never done with my children is lie to them about anything to do with the doctor's office, most importantly I have never told them something wouldn't hurt when I knew darn well it would.

But Kaitlynn and Madelynn are two very different creatures. Madelynn knew when she saw the shot, it was for her and she started crying and saying, "No, Mommy!" I wanted to cry. She has been through so much and I just wish I could take some of her pain away. Instead, I just have to watch it happen because it is in her best interest to keep her healthy.

They had to confirm Kaitlynn's weight to do her shot so they left and came back with Kaitlynn's about 10 minutes after Madelynn got hers. When the nurse walked in Madelynn recognized what it was, looked at the nurse and said, "NO, NO, NO!" I quickly assured Madelynn and told her the shot was not for her. I asked her to sit in a chair and wait while Kaitlynn received her shot.

When it comes to shots Kaitlynn is a screamer. It usually takes three people to hold Kaitlynn down to give her a shot and you can hear her through the entire office. Trying to calm her I promised her ice cream after dinner if she took her shot. It still took two of us to hold her down. Madelynn had felt the shots before but never seen anybody else get them before. She never flinched from that chair (I didn't know she could sit so still) and I have never seen her eyes so big before.

All I could think of was, "Great now that she has seen Kaitlynn scream as if she were in a horror flick she will never take another shot again."

But I was wrong.

As Kaitlynn got down from the exam table and I helped her put her pants back on Madelynn very quietly removed herself from the chair she was sitting and walked up to Kaitlynn and said, "Here Katie, Here Katie."

When I looked down Madelynn was giving Kaitlynn her hand, she wanted to hold her hand and walk her out of the doctor's office. So as we walked down the hall to the treasure box of toys they held hands and helped each other pick out a toy from the treasure box and then walked hand and hand to the elevator.

It is one of those moments I won't have captured in a photo but I will never forget.

TTFN~