Jack just makes me laugh.......

I have so many thoughts running around in my head it has been hard to get it together. Hopefully I can start the new year with lots to share. There has been one story that just makes me laugh every time I tell it.

We were at my friend's house (Katie's godmother) for Christmas day. This has been a tradition for a long time. On years that we have travelled for Christmas I missed being there Christmas day. She even makes stocking for the kids at her house too.

Jack was going through the stuff in his stocking and squealed with excitement at the new toothbrush and his very own toothpaste. I wish kids today would get excited about the simple things like that. The best part was when he came running up to me because it was an electric toothbrush.

His comment was, "Look Mommy I now have a buzzy toothbrush just like you."

Jack loves brushing his teeth with his "buzzy" toothbrush.

Sometimes I wish life was that simple.

Wishing everyone a very Joyous New Year and only good things in 2010.

TTFN~

The new addition

We were not expecting or should I say I was not expecting to add anything or anyone to our household at this time. We have so many things we are trying to accomplish to make like simplier and this was not it. However, Phil journeyed to the animal shelter and voila! we now have a dog.

Her name is Cami as you can tell by her color. We can only guess she is about 3-4 months old. She is very playful and partially potty trained. She is doing well being locked in the kitchen during the day and loves running in the backyard. She and the kids are getting well aquainted and I am very excited for them. They are truly enjoying there Christmas present.

This Christmas season was not what I expected at all and Christmas isn't even here yet. But below is a picture of our new addition.

The Sanger Clinic

One of the things that has always impressed me during this "Heart Journey" we have travelled is all of the Doctors and Staff directly associated with the Cardiologists Office. They do some amazing things and truly ALWAYS only have the child's best interests at heart. Some of these doctors have sat hours in a Patient's Room during that critical time after surgery, are very supportive of Levine Cardiac Kids events and are interested in the child throughout life not just while they are in the hospital.

The Levine Cardiac Kids (LCK) have lots of events throughout the year and I regularly see the doctors attending and supporting these events. At this years LCK Chistmas Party there was an opportunity for Madelynn to have her picture taken. This photo taken will hang in the The Sanger Clinic. I was so excited about how well the photo turned out I just had to share.

Needless to say I will be ordering a small package of this photo. Enjoy!!!

A Candymaker's Witness

A Candymaker in Indiana wanted to make a candy that would be a witness, so he made the Christmas Candy Cane. He incorporated several symbols for the birth, ministry and death of Jesus Christ.

He began with a stick of pure white, hard candy. White to symbolize the Virgin Birth and the sinless nature of Jesus, and hard to symbolize the Solid Rock, the foundation of the Church, and firmness of the promise of God.

The candymaker made the candy in the form of a "J" to represent the precious name of Jesus. who came to earth to be our Savior. It could also represent the staff of the "Good Shepard" with which He reached down into the ditches of the world to lift out fallen lambs who, like all sheep, have gone astray.

Thinking that the candy was somewhat plain, the candymaker stained it with red stripes. He used three small stripes to show the stripes of the scourging Jesus received by which we are healed. The largest red stripe was for the blood shed by Christ on the cross so that we could have the promise of eternal life.

Unfortunately, the candy became know as the Candy Cane - a meaningless decoration seen at Christmastime. But the meaning is still there for those who "have eyes to see and ears to hear". I pray that this symbol will again be used to witness to the Wonder of Jesus Christ and His Great Love that came down at Christmas and remains the ultimate and dominate force in the universe today.

TTFN~

Long weekend.....

We all know that from Friday at 5pm through Sunday evening about 10pm is the same amount of hours every weekend. However, depending on how much you try to cram into that time period can be incredibly exhausting.

After having the crazy week of the roller skating, LCK Christmas party, Katie's Birthday and Christmas Party with my new co-workers I was not inclined to go anywhere Sunday. I even took a nap with Jack Sunday afternoon. Not to mention I worked everyday last week training at a new job and finishing up an old one. Just pure insanity.

I have included some pictures of certain events. I still have photos of Katie's birthday I still have to collect from other cameras. But enjoy what I did have.


TTFN~

Happy Birthday Kaitlynn!!!!!!!

Daddy calls you Punkin, Mommy calls you Boo-bear, you answered to Kaitlynn, KatieMay, and Katie
Today you are 6 years old, where has the time gone......I hope I haven't missed anything
You have been through so much in the last year and I have learned that at your young age you are so resilient
Teaching you and watching you succeed at reading was amazing, seeing the highest scores possible on your report card blew me away
I have had to put you and a lot of your needs aside the past year because of Madelynn and you still seem to thrive
We have had some fun things planned for you this week in an effort to make up for last year
I love you for your patience, helpfulness, love for others and that beautiful smile that just makes my day
Can't wait to pick you up and smother you with hugs and kisses
Hope you have a Wonderful Day!

XOXOXOXOXOXO
TTFN~

Exit stage left.............

After 9+ years of service at my current job I will be walking out of the building one final time Friday afternoon. I have accepted a job at the church my parents belong to in their finance department. This will be a great new journey and a true leap of faith on my behalf.

I knew one day we would turn down the road to better things with everything we have experienced with Madelynn. Never in my wildest dreams did I expect the change to happen so quickly or for things to fall into place as if they always belonged there. So needless to say I am absolutely thrilled to start this new journey.

However, I am very sad to be leaving my Plaza family. I won't be passing the contract sales department and hear, "cheese please" or "woo-hoo". There will be no walking up to say good morning to "Maw-Maw". I will miss seeing "Paw-Paw" in the morning and hearing stories about his grandson. I looked forward to calling Susan Monday morning and telling her some crazy story about something the kids did before I placed my order with her. The laughter was always the best medicine for whatever ailed you.

These were just a few of the things that helped make the ugliness of the world melt away and remind you that their really are good people in the world. These good people could always make you laugh even on some of my darkest days. I will miss them terribly.

Most of all I believe I will miss Bill Sr. He is a man with a heart of gold and someone who truly cares about his employees. Every day he expected 110% of you but he always came back and reminded you how much he appreciated you. Running a company is not easy and making tough decision is not for the weak. I truly appreciated the job for so many years. I hope my replacement sees the good man in him as they take over my duties.

Farewell Plaza Family.........

TTFN~

A blast from the past.....

As part of making Katie's birthday better this year I promised it would be a week to remember since last year was so messed up. Katie had won a gift certificate from her elementary fund raiser. It was a night of free roller skating. I hid it from her until we were on our way there.

Phil and I had not been on skates in almost 12 years. Then we had Katie who had never been on skates. It was pretty funny. I wish I had someone there to take some photos. Roller skating with Katie was like trying to hang on to a wet noodle while on roller skates. It was hilarious.

I had made arrangements for someone to watch Jack and Maddie so that Katie could have Mommy and Daddy all to herself for about 2 hours. As the night progressed Katie built more confidence and was doing better on the skates. Now if she could just stop taking Mommy of Daddy with her to the floor when she falls.

All in all it was a great way to start off celebrating her birthday. Even though she will be very tired in the morning and maybe a few unaccounted for new bruises. Technically, her birthday isn't officially till Friday. However a little extra fun every now and then never hurt

TTFN~

Madelynn's Heart 7

Last year at this time we were definitely in a different place. Maddie had been home from the hospital about two weeks and I was stressed to the max. She wasn't eating the way she should and what she did eat she was not keeping down. I was incredible worried. As part of her discharge agreement she needed to get a weight check every week.

We went in for her weight check and she had lost 9oz. To most people that is a steak dinner. To my daughter, it was a huge failure for her and me. The doctor was immediately called in and the hospital was called to admit her back in the hospital. The pediatrician said she needed a jump start to get her back on track and he wanted that done at the hospital under heavy supervision.

Because Maddie was stable I was allowed to drive her to the hospital. I went into overdrive packed some clothes and necessary items for the two of us made arrangements for the Katie and Jack and Phil met me at the hospital.

I was beside myself.....my child wasn't thriving, I was failing her. I was failing her so badly in fact that I had to drive her to the hospital myself. I cried all the way there and felt very diminished. I was not the right person for the job. I was really just drowning in self pity. As any daughter would do I called my mom and another close friend about my failure.

To me the worse part about it was that Katie's birthday was the next day. So again I was putting her on the back burner. The healthy child gets shafted again. So now not only did I fail my youngest in helping her get well, I failed my oldest by making Maddie more important that Katie's birthday. I really thought life would not get any lower.

Once we made it to the hospital and was informed of the plan of action to give her a jump I talked to my mom. I had already bought Katie's birthday present I just wasn't going to be there to help her celebrate. It was too dangerous during cold and flu season to have a party at the house. I felt as though I had reached the worst kind of failure.

Something that helped a little bit was that my mom came to the hospital to hang out with Maddie for a few hours. I drove home and had dinner with Phil, Katie, and Jack and we opened Katie's birthday presents. I had to leave to go back to the hospital but I was still given a few precious hours with my other two children and Maddie was not the center of attention. Thanks Mom

I have never felt this particular form of failure until that day I drove her back to the hospital. I had to tell my older daughter we have to celebrate her birthday a little late this year and that no one except Mommy, Daddy and Jack could be there to help celebrate. I promised we would make it up to her.

A few days later Maddie was discharged from the hospital again and we were sent home to work on getting her to eat again. And again I had failed my children even worse that before. Christmas day Maddie and I were back in the ER in the morning. So I missed Katie and Jack opening her presents from Santa and party of our Christmas day venture to Katie's god-parent's house. More crying on the way to the hospital.

This time I was mentally done for and could take no more and more crying in sued. We were contacted by a group who wanted to help in Maddie's recovery. We were going to get assigned a nutritionist and a physical therapist. The nutritionist for obvious reason. The physical therapist because Maddie had spent so much time in the hospital she was 5 months old and could not hold her head up. Because of the high medical expenses already incurred these services were free.

Today, Maddie is getting ready to finish up her physical therapy and we will still be under the supervision of the nutritionist. These stressful times I was hoping would soon be a memory now that we had some great new help. From the day Maddie's was discharged in November through the end of December was the darkest part of Maddie's recovery and wouldn't wish it on my worst enemy.

Her future looks very bright and I hope it stays that way.

TTFN~

Thanksgiving Weekend

Just in case you were wondering what we did Thanksgiving weekend..........see below.

TTFN~

Happy Thanksgiving.......

Happy Thanksgiving!!!

At this time last year there was such a rush of emotion at everything we had just experienced that the things I was thankful for just came pouring out. It has been a long year of blood, sweat and tears, mostly tears.

I am still Thankful and forever will be to Dr. Kendrick who saved Madelynn's life.

I am still Thankful to the relentless nursing staff at Levine Children's Hospital they are an amazing group of women and men.

I am still Thankful to our Parents for their unconditional Love and always being there.

Standing in a different place today with a new view...........

I am thankful for a new found patience

I am thankful for 20.015 pounds

I am thankful I have found an amazing strength and perseverance to trudge this path

I am thankful for little smiles even if they are at 5am

I am thankful that never, not even for a second did I travel this year alone..............

whether it be because of a prayer a stranger prayed, call a friend made, letter someone mailed, email someone sent, friends , family or a hug from my children someone was always there. I would have never made it this far.

So, Thank you to all of you have a Wonderful day!!!!

TTFN~

Daddy is working late

When Daddy is working late Mommy has to get creative. The other night I was taking turns letting the kids take pictures with my camera (Don't worry Grandpa I was really careful). Below is the results of the goofing around with letting Katie and Jack take pictures with Mommy's camera.

Enjoy......................

TTFN~

Thankfulness Bag Ingredients

Today was Katie's last day before Thanksgiving Break and she came home dressed as an Indian. About two weeks ago her teacher asked for me to send in a white t-shirt. The shirt she is wearing is the white shirt I sent in.



In Katie's back pack was a brown paper bag and she handed me a piece of paper and she recited the following from memory.

Thankfulness Bag Ingredients

*A rubber band - to keep our hearts tied together always

*A candy kiss - to say thank you for all your love

*A penny - to say thank you for sharing my thoughts and letting me know they are important to you

*A warm fuzzy -(small piece of fabric) - to make you feel good when you are sad, like you always do for me

*An adhesive bandage - to say thank you for all the times make my hurts feel better

*A facial tissue - to say thank you for all the times you dry my tears

*A piece of lifesavers candy - a circle to how that my love for you will never end

Who would have ever thought that a miscellaneous bag of stuff would make you stop, think and appreciate of everything you have right in front of you.

TTFN~

20.015

I can't believe I forgot to post about this...........Madelynn has been approved for Respiratory Syncytial Virus (RSV) shots, because of her collapsed lung and heart surgery last year. This is monthly shot she gets during the winter months to help to protect her from respiratory illnesses.

Each time Madelynn receives this shot she has to be weighed and the amount of the shot is based off of her current weight. Last Thursday when she received this shot and she weighed 20.015 lbs. I texted a few people with it that info but forgot to actually blog about it.

About two minutes after I sent the text my cell phone rings....it is Phil on the other end yelling "WHO-HOO.....its about time." We were very excited Madelynn had finally reached the 20lbs marker. It was such a long road to get here. I will probably wait a few weeks but she can officially be turned around in her care seat, which was more exciting.

TTFN~

Be the Match......

Not very often but yesterday I shocked Phil. I told him I needed a few minutes away from the kids to do my donor card. He stopped dead in his tracks............"donor card for what!!!"

I have decided to be a bone marrow donor.

Phil looked at me and said, "You know if you have to donate it really hurts right?"

I explained to him that there are actually two different ways that your marrow can be taken and yes one of them is very painful but one is not. The one that is not is more common practice.

What Phil doesn't know is that I tried to do this once before and I could not get to the be the match program at the hospital. So I contacted the hospital and asked them how I could still sign up. I went out to the be the match web page and signed up. I received my packet in the mail and within five minutes I was done.

There is nothing really spectacular about me, I am just an average white female, so I would be really shocked if I was contacted. But I can say I signed up and am on the list just in case. So you will see the Be the Match link down the side of my blog for anyone looking for more information on it.

TTFN~

The Friendly Village

As Thanksgiving Day is quickly approaching this year will be different than any other. I can count on one hand the amount of times in my entire life that I have not celebrated with my parents. This year will be one of those few years my parents will be at my sisters. However, so will my brother. Doing the math, my entire family will be together except for Phil and I and the kids.



The other day I was listening to the radio on my way to work. They were discussing what is the one thing that Thanksgiving would not be the same without. As strange as it sounds my mother's good dishes would be my answer.

They are part of every Thanksgiving and Christmas meal. I remember being told too many times to count ......"be careful those are my good dishes"......"don't break them"...... I remember being scared when one broke because of how special they are. I don't ever remember having a Thanksgiving or Christmas meal without them. I am sure it was the cook but food doesn't taste the same without them. Seeing the holiday tablecloth and all the place settings before we all dive in, it is a work of art.

So this year as I celebrate Thanksgiving with some friends I will be thinking of my family and looking down at my table and how much I miss seeing those dishes. I hope where ever you are for Thanksgiving you experience that one thing that your Thanksgiving just isn't the same without.

TTFN~

Farewell Lady Girl...........

Today was a really rough day. I came home from work and Jack found Lady on the floor not moving I thought she was dead. As I got closer I found she was still alive but something was seriously wrong. She could not move what you and I would consider waist down.

She had definitely had a seizure. She was stuck in a very bad position and could not move. I called the vet and they told me that they wanted $100.00 to look her over tell me she needed to be put down and actually put her down. Yikes!!!

I called the animal shelter and told them what happened. They were closing in 15 minutes. I left a message and they called me back. The very nice lady told me that she had an officer still out in the field and he could come by and get Lady and take her and put her down for me. I could no longer give Lady a good quality of life and we had 12 years with her.

So I carried her out to the truck, put her in and gave her a kiss goodbye.

There are not enough words to tell you how much I will miss her.

Phil was stuck finishing up at work so I would have had to do this by myself. I called my neighbors Mike and Amy and they literally came running across the street. Amy kept the kids busy while Mike and I waited for the county worker to show up. I let Katie and Jack give her a kiss good-bye and left them to play so they would not see her leave.

I am very grateful for the county worker having a heart and not allowing her to suffer overnight. She did not have to go out of her way to find the field worker to help us she could have just gone home. I am grateful to my neighbors who just came to help no questions asked.

Needless to say.....this afternoon just sucked and I am going to sleep it off. Tomorrow will be another day. A lonely day but another day.

TTFN~

What am I going to do with them????????

My mom once told me that when we were growing up we were never allowed to have snacks in the car. She said some days she could have really used the snacks to keep us entertained. However, after spending three hours cleaning out, vacuuming out, scrubbing the carpet and wiping the van down I understand why my dad did not want snacks in the car.

As many fruit loops as Maddie eats I think I swept up an equal amount. I found sucker sticks and wrappers. You name if the kids eat it I found a wrapper or residue of it in the van. By the end of my three hour discovery adventure, I had two of the 4 gallon trash bags full of junk, paper towels and Clorox wipes.

I have learned from Maddie's therapist that if I feed fruit loops through a pipe cleaner and twist it into a circle I accomplish two things. One this is good therapy for Maddie as far as her learning how to manipulate her mouth around the fruit loops she has to eat them off. Two, the only fruit loops that spill on to the floor are the ones that fall as she bites them off, less spillage. Needless to say the extra few minutes it takes me at the table to feed the cereal through the pipe cleaners, priceless.

Katie and Jack are another story. I have to be smarter then they are and some days this is no small task. They get suckers as prizes from the treasure box, I need to remember to confiscate them. Otherwise even if I tell them no as I am driving down the road I see from the rear view mirror eating that same sucker. When we are going to be gone for a few hours running errands I have to make sure they are well fed before we leave. If a snack is required I need to make sure it is one they really enjoy so that I only have to worry about what they did with the wrapper.

Something I have been pushing with Katie and Jack is making them take whatever they put in the car back out when we get home. If they refuse I threaten to throw it in the garbage. Yes they come back running back really fast if they think it is going in the garbage. Some days it just gets so exhausting, I feel like I am always threatening them with something to get them to cooperate.

Each day is different and I never know what they will dream up to test me. I was once accused of being too strict and militaristic with my children because we have no TV nights. We do reading, art or all play together. I have also discovered that Katie is one of the few kindergartners that can read. Don't get me wrong she is not reading novels, but the books she is sent home with, for homework, that is her grade level she can read.

Even better is that Katie is reading to Jack. Jack will sit next to us while we are working on the books. He is such a sponge. He is shouting out the answers before she does. Sometimes I have to tell him to be quiet because she gets upset. Even Maddie has gotten in the action. Earlier today I was reading to Katie and Jack. Maddie came up to me and started screaming until I pulled her up on my lap and read to her too.

I was pretty exhausted when I was finished with the van and really didn't want to read to them. I just wanted to veg out for a while. However, watching Katie read later tonight before bed was well worth taking the time to read to them earlier.

TTFN~

Madelynn's Heart 6

About 7 to 10 days prior to Thanksgiving last year things were just crazy. We were told that Madelynn would be moving to the 8th floor by the 12th of November. After talking to the doctors and seeing her at the hospital something was still wrong. She was having a really hard time eating and keeping the food down. I told the doctor's I didn't think she was ready to move to the 8th floor.

This was a very difficult decision for me. I so desperately wanted her to be moving up however I had an itch I just could not scratch. Something still wasn't quite right so the doctor's kept her in CVICU for two more days, just to be sure and monitor her eating. Since I stopped working thinking she was going to the eighth floor I just lived in the CVICU for two days.

The day I walked with Maddie and all of our belongings to the Progressive Care unit from CVICU was very bittersweet. We had developed relationships with the hospital staff. We were going to miss them but it was time. I was all smiles, it was like we were in a parade. Everyone in the hospital was waving at us and wishing us luck. But the rest of the world had no idea what we had just accomplished.

The rest of the world was going to work, school, the gym, sleeping in they had no idea what happens in these hospital walls. Think about it 16 days prior Madelynn had open heart surgery there was talk about her being in the hospital for 6 weeks. When in total she would only be in the hospital 21 days that is three weeks. Three days later from that move we were on our way home. I really had no idea how sick she still really was. Or should I say how badly her body had taken a beating and how long it would take her to recover.

Watching Maddie at the party we had (Friday October 30, 2009) to celebrate her recovery it was like I could finally exhale. She was so funny. Trying to talk to everyone and saying "Hi". Just a little social bug. As of her last weight check Maddie is still not 20 lbs. I was so disappointed. I so wanted her to be 20 lbs by the 1 year anniversary. But watching her at the party, my disappointment melted away and I just laughed and smiled at her.

I remember the day she was discharged. It was such a long day it took almost 8 hours to get her discharged and my body was just itching to leave. I wanted to get her out of the hospital so bad. Linda, Katie's god-mother, came to the hospital and sat with me all day while we waited for them to say...."see ya later......good luck...." Maddie even had a travel home outfit compliments of Grandma and Grandpa Bacho. I was just hoping once she was home she would start eating better and we would home free.

This was not what God had in mind and I was completely unprepared for what would happen over the next two weeks...............

TTFN

gleaming with pride, exhausted from tears

Before this day started I knew it was going to be exhausting and filled with emotion. We started the day with Kaitlynn and Jackson having to be at the dentist. Jackson is terrified of the dentist. In previous visits he has had to go to a private room. In our dentist, there is a giant room with eight beds and the techs and Dr's float from bed to bed taking care of everyone. It is a great process. But because Jackson has had such melt downs they put him in a private room.

Well not today. They put him in a bed right next to Kaitlynn and he could see everything that was happening to her. When it was his turn he started to cry. But after a few minutes of the techs calming his fears he did superb. So well in fact that the techs convinced him he could always have it done this way since it did not hurt. Everyone was praising him at how well he did he was just glowing. It was great to see him full of smiles.

The dentist told us the Jackson's teeth looked really good, NO CAVITIES. He does have a problem with his bite. However they are just going to monitor the bite until he loses his baby teeth, sometimes the permanent teeth will correct the bite all by itself. Kaitlynn's teeth were also excellent, NO CAVITIES. She had some plaque build up in some areas of her teeth. I just need to help her a little bit with her brushing.

I was so excited to be leaving the dentist. No bad reports and Jackson is slowly getting over his fear of the dentist. I really was so proud of him.

Well then I had to get Jackson to daycare and Kaitlynn to kindergarten and have Madelynn to the pediatrician all in about 40 minutes. Luckily I was smart enough to have Phil take the day off and spend the morning with Madelynn and he met me at the Dr's office with Madelynn. Her day was just plain heart breaking.

We get into the room and are talking to the Dr and we had big plans for Madelynn today. There is a new law that requires Dr's to take blood to check for lead levels in small children. We also needed Madelynn to be tested for allergies by blood test for obvious family reasons but also because the pulmonologist wants to change the way her treatment is administered and he wanted a type of allergy test run on that medicine. Unfortunately, the two blood samples had to be taken from her in two different ways. Oh yeah, four shots too.

So my poor angel was tortured today. They took two viles of blood from her arm, lots of screaming and big crocodile tears. Finished by a purple dinosaur band-aid. Next they pricked her finger and took blood from her finger, more screaming and tears, finished by a second purple dinosaur band-aid. Finally four shots, two in each leg, lots more screaming and tears followed by two more purple band-aids.

Madelynn was so pitiful by the time it was over, covered in purple dinosaur band-aids, Phil and I could barely stand it. Her face was bright red from screaming and I am sure she could barely see though all the tears. It has been a long time since she has had to go through something like this. It brought back some memories I just assume they stay as a memory.

It will come as no surprise that the 3 mile trek home from the doctor's office she was exhausted and sleeping. We decided to let her eat lunch after her nap. In case anyone is wondering she still is not 20 lbs yet. She was 19lbs 13.5oz. Yes I realize this is close and I am sure close enough to turn her around but I want her to be 20lbs and stay over 20lbs before I turn her car seat around. After everything we have been through what's a few more weeks.

Overall it was a bittersweet day. I was very excited for Kaitlynn to have a great dental visit and Jackson was just wonderful once he calmed down, I was very proud of him. As for Madelynn I was just glad it was over and she is now running around the house with Kaitlynn and Jackson trying to take off her clothes = she is feeling just fine.

Happy Weekend Eve!!

TTFN~

Peanut's artwork

In the daycare that Maddie goes to 3 times a week they are very big into the children's artwork and I might add very creative about it. If you look really close the bat's wings are Miss Madelynn's handprints and the bat's body is her footprint. Very cute right.....

I would have paid money to be a fly on the wall trying to roll paint on the kids feet and only getting orange paint on the the children's toes. Then after drying trying to control the children the put paint on their little hands and not getting it everywhere.

One of Madelynn's teachers is pregnant and everyday I see her she looks exhausted but she also looks like she has been attacked by one of the kids with whatever art project they are working on. I never understood how some things could be so messy until I thought about the time and patience it took to create this simple art.

It turned out so cute..............

TTFN~

Message for Grandma Bacho

What will I do with him?????????????

It had been a pretty stressful week and I was so glad to be going home Friday, almost an hour late. I called Pilbert and he was already at home working on dinner. I was so grateful because I had no idea what we would have. By the time I collected the three kids and walked in the door there were grilled steaks and a glass of wine on the table. The kids were so excited to see Phil and I was glad to have the family dinner to change the scenery.

Later, I cleaned up the kitchen and the dining room. I was simply too tired to finish cleaning up the living room. It looked like the kids had a huge party and there were toys everywhere. However I knew they would keep till the morning so I crawled up to bed.

At some point in the night Katie made her way to our bed. She is no longer having night time accidents however when she wakes up in the middle of the night to use the potty, mommy and daddy's bed is closer and cozier. So she buries herself between us and is fast asleep in seconds.

For some reason, I was under the impression that not only did Phil have to work today but that he had to be out the door at his usually 6am. I heard Jack and Phil talking as I was half asleep and knew Jack was ok and fell back asleep. Some time around 7:30 I was a little bit more conscience. Little did I know what Phil was already up too.

As mentioned in a previous post Jack likes to go wake Maddie up to keep him company when the rest of the world is completely unconscious. Jack has also been reprimanded because I will find him in Maddie's crib. Not that Jack would break the crib but I just didn't want him to think climbing in an out of Maddie's crib was okay, MOST importantly I didn't want Maddie to get any ideas.

So Jack in his creative mind found a way that he would not get in trouble from previous conversations we have had with him. Phil found Jack and Maddie in the guest room on the bed watching cartoons. This means that Jack helped Maddie climb out of the crib and brought her to the guest room, helped her climb on to the bed and turned the TV on so they could watch cartoons. He even turned the light on for her.

After my racing mind went through a small panic attack.........I have no idea how he got her out of bed or how her got her on the guest room bed and only by the grace of God did she not get hurt. I thought about Jack and his big heart.

He did not want to be alone and knew he could get Maddie to join his party. I am sure he tried to be very careful to get her out of bed. He is a great big brother. From the remnants of what was left on the guest room bed, he also tried to cover her up to be cozy and warm. Because every time he tries to come in our bed he tells me he wanted to be cozy and warm. Although, he should not have gotten her out of bed, she was completely unharmed and he just wanted to play.

I did talk to Jack about what he had done and told him that it was unsafe. He claimed to have understood and promised not to do it again. However, I just can't get over how he and her kind of bonded this morning just the two of them. I have no idea what time he woke up or woke her up or when he got her out of bed. The only thing I do know that is that he never wanted to harm her he just wanted a buddy to hang out with. Kind of sweet...........

I have a vision that Jack will have this big football player body build and Maddie will be short and petite and he will always be there to protect her. He will always be there to watch out for her and be her protector. Ever though he is pretty clumsy at it as a 4 year old I think he will figure it out. I just hope one day she appreciates what he tries to do for her.

TTFN~

Madelynn's Heart 5

Madelynn was in the CardioVascular Intensive Care Unit (CVICU) being cared for by some of the most amazing nurses and staff I have ever met. She seemed to be doing well and being naive and un-educated about what was really happening I had no idea what was about to happen. I could not sit at the hospital hour after hour so I convinced my employer to let me work part time until Madelynn was moved to Progressive Care.

The very first day of part time work Madelynn was moved to a different room in the CVICU. We knew this would happen but I was not prepared for the call I received. The nurse called me to tell me while they were moving her, her lung collapsed, she stopped breathing and they had to re-intubate her. She was now back on the ventilator. She was also diagnosed with strep-pnuemonia. My heart fell. I had about two hours left before I would head to the Hospital to see her.

The next few days were going to be very difficult for Madelynn and she was going to need to fight like she never had before. She was very sick. They told us until they had a true diagnosis they had to treat her with some hardcore drugs. Her poor body was withering away. She was losing weight quickly. Her body had gone through such a major ordeal with the change in blood flow that feeding her was going to be incredible slow.

This was another ordeal I was not prepared for. Madelynn was such a great eater prior to surgery. She had to re-learn how to eat. The nurses became some of her strongest advocates and told the doctors and staff what they believed she could handle and what she couldn't. Looking back on this part of her recovery this was harder for me to sit and watch than the day I waited for the surgery to be over. There were so many nights I slept in her hospital room and cried. Just praying and hoping she would be strong enough to survive.

One of things that helped get me through was the weekend of my mother's birthday. This was the weekend Madelynn was supposed to be baptized. Everyone already had their plane tickets so my brother and sister used their tickets and came in town anyway. Late one night while they were all here my parents, brother, sister, Phil and I all went to dinner. It was one of best nights I have ever had. We laughed so much and I really needed that.

There will be three more posts to this story but they will be over the next few weeks.

TTFN

Weekend Update

It is 9:30pm and everyone including Phil is in bed fast asleep. I am so glad this weekend is coming to a close. It really was a great weekend just busy. The party Friday night to celebrate the one year anniversary of Madelynn's heart surgery was a success.

We had a house full somewhere between 40-45 people including kids and almost no food left. Madelynn was so funny. I really thought she would be shy around all the people but she wasn't. She went with the flow walking around looking at people and saying 'HI!'. There were four children around her age and she was having a great time playing with them.

Saturday we had lots to do before trick or treating began. The kids were so excited. We talked to Jack's pre-school teacher whose husband works with Phil and daughter is one of Katie's best friends to come trick or treat with us. So while I passed out candy they all walked the neighborhood collecting candy. We did get some rain that put a damper on some of the evening but it never poured until much later. The kids came home with tons of candy. With what I had left we have either more candy or about the same as when the evening started. I have already posted the pic of Katie, Jack and Maddie in costume.

Then we have the fact that time changed this weekend. So by Saturday night I am ready to pass out. I am about to get up to bed when Katie comes down and asks if she can sleep in my bed. So I tell her to go up there and I will be there in a minute. I knew Jack would not understand the time change and that he would be up at his usual 6am awakening. Which I was not looking forward too.

What I was not prepared for was the CD BLASTING out of Katie's radio through the baby monitor and Katie was sleeping in our bed. And NO Maddie can not get out of the crib yet. It was 6:15. I stumble out of bed, eyes still closed, feeling my way to the girls room. Not only had Jack full blasted the radio he turned on the biggest brightest light in the room.

Imagine poor Maddie in her cozy bed covered in a blankets in perfect slumber awakened to the lights of Broadway and Life is a Highway roaring out of the radio. I know I would have had a few choice words for him. Phil really wanted to say them but I held him back. So now not only was Jack awake so was Maddie which means I now had to become conscience. I was not happy. By the time I finished Maddie's breathing treatment Katie was awake too so I took all three of them downstairs to eat breakfast.

Needless to say, I made sure they all took a nice long afternoon nap and yes I was able to slip one in there too. Chaos is always there it just shows itself in so many different forms.

By the way, GO IRISH!!!!

TTFN

Halloween

Happy Halloween!

Hugs and Kisses from:

Supergirl, Piglet and Optimus Prime

Madelynn's Heart 4

Have you ever seen the movie Finding Nemo?

There is a scene where a group of sea life living in a tank are trying to escape by mucking up the tank and the owner of the tank was to clean the tank and they could make there escape. The starfish wakes up and shouts..."Today's the day, today's the day, the sun is shining, the tank is clean"......the excitement of the day just just turned to dread.

This is the way I felt the morning I woke up in the hospital with Madelynn. It was a beautiful bright morning but I was in a not so happy place and I was going to have to sit in a waiting room for a six hour open heart on my child to take place.

My only saving grace was that I was not alone.........Phil, his mom, his sister, and my parents were all there. Something else in this waiting room was computers to surf the web. I first scanned the web about Madelynn's condition. I read as much as I could until it became too much. except for the bathroom I never left this room.

This was where we would get periodic updates during the surgery. The first one was that Madelynn was ready and the surgery was starting. The second one was to say that when they opened her up their were no surprises. Everything they had studied on her echo the night before was exactly what they found when they opened her up. The third was to tell us they were almost done.

By this point we were all a little stir crazy and the scene turned silly. Six of us were sitting in this cramped little area by choice and texted each other. My dad learned to text that day, my brother and sister from Ohio and Michigan joined in. It was a great comic relief. The next thing I knew the surgeon was standing in the entry way to this cramped little room.

Madelynn did great and there were no surprises. The surgeon was VERY excited at how well everything went. The next 48 hours would be crucial to see how her body reacts to the shock of the proper blood flow she has been without for a little over two months. We would be able to see her soon.

There was a feeling of relief that overcame the space we were in. I was ready to jump out of my skin. I just wanted to see my baby girl. I was so not ready for what I would see................

She was in this old school crib and she had tubes everywhere. She was on a ventilator, had a chest tube, wires hooked to her heart, an arterial line in one arm measuring her blood pressure, IV in the other hand and in her foot and her chest was cut completely open and was now covered in stitches. Her rib cage was split and wired back together. For the rest of her life she will set a metal detector off.

I was afraid to touch her. I just sat back and watched. If it wasn't for Phil I would have just sat there not eating just watching the monitors tick away. I was so afraid. I knew the doctor said the surgery went well but my baby was buried under all of these wire and tubes. Madelynn did suffer some mild complications over the next 24 hours and each time they were able to stabilizer her.

As we have come to the one year anniversary of this faithful day I have a different view. Madelynn has recovered very well. My hope is that one day this will just be a part of history. Her complications she suffered sometimes seemed endless. Each time I thought Lord I just can not do this anymore. I have cried more tears in one year then probably the other 36 years of my life.

However I am not sad anymore. I have a new perspective on life and I am happier then I have ever been. Tonight we will have a celebration in honor of Madelynn's journey. It is not just about Madelynn, it is a celebration for life and the road we travelled as a family. There are so many people we would have never made it without. We want to Thank them, let them see Madelynn today and make sure they realize however large or small the role we would have never made it without all of the help.

So tonight as we share a meal with our friends and family the hope is that we just have fun and laugh. These moments were sometimes non-existed in our journey and we would like to make up for a few of them. Attached is the photo I posted 24 hours after Madelynn's surgery and a current picture of Madelynn that I just know will make you smile, compliments of Grandpa Bacho.

Madelynn's Heart 3

.........."If I had the chance to go back again, take a different road bare a lighter load, tell an easy story, I would walk away with my yesterdays and would not trade what is broken for beauty only"..........



A year ago today my life changed forever. The day started out as any other day. I was up early for work and dropped all three kids off at day care. I worked till about noon. I had to leave Charlotte drive to Indian Trail pick up Madelynn and make it back to the Hospital uptown Charlotte by 2pm. Since the pediatrician visit on the 14th, I really was not expecting much at the cardiologist visit this afternoon.



Completely unphased we travelled through several parts of the cardiologist visit. They put stickers all over Madelynn's body and attached these nodes to take a reading, they checked her weight, blood pressure, length, oxygen level. Then they took us to an ultrasound room and did an echo on her heart. I still was completely oblivious to the fact that the amount of people that were observing was growing.



After the echo they took us back to the original room we started in. A few minutes later the pediatric cardiologist came in sat down and proceeded to talk. ....."your daughter has a coractation of the aorta she will have surgery on her heart in the morning. I am trying to get you a room at the hospital to get you/her admitted.......it should be a fairly simple procedure through her armpit"... The doctor needed to check on our room and left.



Phil and I were dumbfounded.



The doctor was not gone long enough and came back in the door. ......."I'm sorry there is more your daughter's coartation is much more severe than originally thought she will need what is called an extended repair...........she will have to have open heart surgery......we need to run more tests and I need to get you in that room at the hospital.....Please take your time call whomever you need to....you did nothing wrong nor was it your fault this happened she was born with it.....we will let you know when we are walking to the hospital.



The hospital was connected to the cardiologist office by way of a enclosed catwalk.



At this time Phil and I just hugged each other and cried. Our beautiful girl is in real trouble. I looked at Phil and said I am only going to be able to tell this story one time without crying. I called work first. Then I called my mom and broke down. Phil did the same.



I remember that walk from the doctors office to the hospital room I was numb.



Once in the hospital room the amount of people in Madelynn's hospital room kept growing. Madelynn's aorta was very unique. The Children's Hospital is also a teaching hospital so her very unique case drew some of the best doctor's in the business wanting to see it live.



Madelynn fought all through the tests and drugs they gave her and made for a long afternoon and evening. I should have known then what a fighter she would be. At one point they told us we need to do this extensive echo so we know exactly what we are looking at for surgery in the morning. Why don't you two go get something to eat and we can talk with you once the test is over and you have had something to eat.



We went to eat but I don't know what I ate or even if Phil and I said a word to each other during that meal. All I knew was that I wanted to get back to my baby. Sometime after we ate and made it back to the room my dad walked in. I was so glad he was there. I remember he looked at Madelynn and just stood back and let everyone work. He was so patient and just waited. I was still really glad he was there.



At this point I watched the surgeon make this drawing, I made a few notes on it.



After this pow-wow with the surgeon I talked to my dad, returned a few calls and made lots of calls to my best friend the nurse. She helped me keep my cool and soak everything in so I could be educated about the adventure that would begin in the morning.

Thinking back on this day.......I have no idea who picked Katie and Jack up from day care, fed them or put them to bed I just know it wasn't me. I don't know what time I went to bed or if I slept that night. I don't know what time my dad left or what time Phil's mom and sister showed up at our house.

I just know that after one year on this road I wouldn't trade any part of it for a simpler journey. Madelynn was gifted to us, God knew we were the best parents for the job and I was going to make sure this gift wasn't squandered.

June's swimming lesson

Today has been a crazy day. Sometimes in the chaos we miss things or accidentally overlook things. Today in my normal chaos in trying to do my standard of accomplishing too much in one day June almost drowned. She joined grandpa as an injured.

I was experimenting with a Mr. Clean Magic Eraser and quite shocked at the result. Maddie was following me around the house as I experimented. While this was going on I had home-made applesuce brewing on the top of the stove, a chicken roasting in the oven, Katie and Jack were working on some school work. Basically I was all over the downstairs of the house. Suddenly I realized I had gone most of the day without going to the bathroom and I had to go RIGHT NOW. As I lifted the toilet seat this is what I found.

Meet June. She is a character from Disney's Little Einstien's and Maddie dropped her in the toilet. She is about the size of a Fisher-Price Little People. So now before I could go I had to run to the kitchen and find something to fish June out before I turned her yellow. See June under normal circumstances.

A couple days ago Phil got a call from a woman who claimed her toilet was backing up. When Phil got to the house he forwarned the woman that it was very possible that one of her boys flushed a toy down the toilet. She was aboslutely positive that that DID NOT happen. That was until Phil handed her a toy ball he pulled from the toilet. She was speechless.

I am usually very conscience about the bathrooms, the kids and who is in the vicinity of one in the house. Not sure how I missed that one today. Needless to say, June has been sanitized and returned to the rocket with the rest of the Little Einstiens. All is right in the world again.

Have a great weekend!

TTFN

should be exhausted....

My day started at 6am...it was my day off. I took Katie and Jack to school and rushed home to get Maddie her breakfast before the therapist showed up. Therapy went well. I am sure that at review in January we will discontinue services. We also had a meeting with the nutritionist. Maddie weighed 19.4 lbs. This is four more ounces than last week. Woohoo!!! The nutritionist was pleased as she sees constant improvement even if it is slow.

After those meetings were over I started the laundry, repaired the microwave (thanks Mike), carved a pumpkin, cleaned the kitchen, uncluttered my bedroom and got rid of some junk, picked up Katie and Jack from school, stopped at the store, made dinner, and am currently waiting for the dryer so I can put the last load of laundry in the dryer, before I go to bed.

Days like these are good in the fact that I feel like I have accomplished a lot since I can only work three days a week. But I think now I am starting to wind down so I can go to bed. I have found lots of things to do since I am not working. I feel more creative and would have never come up with some of my ideas if I was swamped with everyday life.

I still really want to go back to work full time but I don't know if that is in the cards for me. Not really sure what God has in store for us. We have been truly blessed and showed time and time again God will take care of it all. It is giving it all to God that is the hardest part. I still have a problem with that some days and consistently reminded to back off and let him handle it.

So all though I have been up for 17hours and should be exhausted today was a day where I feel a little bit more complete and we'll see what tomorrow brings.

TTFN

Weekend event

As I watched this weekends weather report come to life I was so disappointed. We had planned to take the kids to the mountains to an apple orchard and let them pick their own apples and have a picnic lunch and come home. However, the morning weather in the mountains was 37 degrees before wind chill and raining.

So about 8pm Saturday night I searched for something closer where it would be warmer and nicer weather. I found an apple orchard that was closed to picking but had a pumpkin patch and hay ride. So off we went. We picked up Grandma Bacho to have extra hands and drove to Moorseville. It was a nice farm, in the spring we can go back and pick strawberries.

So we took the wagon ride, met the farm dog Lady, met all the pigs, lambs, calves and other farm animals that were born this year, picked a pumpkin, picked some turnip greens, grabbed some fresh apples and to home we went. We left about 11am and by 3:30pm we were home. Considering for NC today was really cold almost record breaking it turned out to be a good day.

quick note................

Two weeks ago today I took Madelynn to the pulmunologist and I was really frustrated at the results of the visit. For the past few days Madelynn has been really coughing badly. This morning she coughed up some junk so I took her to the doctor. They are just increasing her breathing treatments for a few days to help her get over this little viral hump.

The best part of the visit is that she gained a half a pound which means she is now 19lbs!!!!!!!!
One more to go and she can have her car seat turned around.

Thank God the girl loves pasta!!!

TTFN~

Madelynn's Heart 2

A year ago today was the day we thought that we would get some answers.

We went to the pediatrician for just a two month check up at least that's what it was when I made the appointment in September of 08. However the day before, the Urgent Care Doctor sent the x-ray to the pediatrician and it changed our appointment.

Madelynn has a boot-shaped heart. What does that mean?? The pediatrician did not what to speak out of turn until the cardiologist got a good look at her heart. He told us not to worry if Madelynn had a serious heart condition she would display other symptoms. She was not displaying ANY of these other symptoms.

So again I left another doctor with almost no answers but with more than I knew the day before. That evening I spent researching through the Internet all of the terms I heard the doctor say. I felt a little better because the doctor was right. Madelynn truly did not display any of the symptoms for a child with a boot-shaped heart.

We had an appointment for October 29Th 2008 to see the cardiologist. So again we were in another waiting game this one was a little bit longer, about 15 days.

There was still something that we had not done. Other than each other Phil and I had not told ANYONE. We needed to tell our parents and other family members. My parents were visiting my sister. I did not want to call and put a damper on that visit and I truly did not know that much as it was.

So sometime over the 15 day waiting period I sent out an email that included the most important people we wanted to tell. I know it sounds cold to send this type of announcement in an email. However, this was the best way I could properly tell everyone the same story, not leave anything out or exhaust myself from crying or telling the same story over and over again.

I was trying to stay positive as I have older children to worry about. The more I talked about it I knew I would just cry and I didn't have the energy for that right know. The days I carried it around without telling anyone made it a dream just unreal at this point. I watched Madelynn like a hawk but saw nothing. Just normal everyday baby stuff.

Things were so normal in fact that we were not ready for journey we were about to undertake.

Or were we??

TTFN

Mother's

This evening I watched six children both mourn the loss of their mother but also celebrate her life. As I watched the children talk about the life they had with their mother, it was amazing. Even talking about times they got in trouble or weekly rituals they hated made them laugh. The treasured memories that are burned in their minds forever. This was a great mother, just knowing her for almost 10 years changed part of my life forever.

But I also have the luxury of a remarkable mother. On the important stuff she is never wrong. Her unconditional love is amazing, her sense of humor will keep you in stitches and her grace the way she goes through life is beautiful. Sometimes it may not seem like it but I wouldn't trade even a minuscule of time with her for anything.

Then I know way too many people who have had to bury their mother at way too young an age. Their whole world shattered. Unsure how to live life without her. No more Sunday lunches, no more early morning calls to help get the day started, no more Saturday shopping ventures, no more chats over coffee, all of those special moments that you only shared with mom, gone. Trying to continue that special time without her just isn't the same and trying to fill that space with something else can be so painful.

So here is what I don't understand.............In my life time I have heard children say I hate you to their mother or worse call them names. This is the woman who carried you for 9 months, rocked you into slumber while operating an maybe 3-4 hours of sleep herself, the bible even says Honor thy father and thy mother. I know people who spending time with their mother is simply too much trouble.

Currently, I have a friend who has been caring for her mother for about two years. Her mother has Alzheimer's and it makes some days very stressful and difficult. In recent days, her mother is very hateful and mean to her. Her mother is ill and she is just trying to give her the best care possible and it is really taking a toll on her. In about a month or so her mother will go to a home that will better care for her medical needs. Sometimes I get calls from her and she is really frustrated and she can't wait for her to be at the home. This is a new facility that is being built they are just waiting for it to be open.

I ask her you don't really mean that. Then I say one of these days she will be gone and your heart will have a hole that will never be filled again. You will miss her when she is gone. At this point there is a BIG sigh in the conversation. I get some type of response like yes I know. It is kind of like I replenished her because I reminded her life will not always be like this and cherish what little time you have left.

Mother's are a precious gift and never not even for a second be taken for granted.

I love you mom~Chelsea

TTFN

Madelynn's Heart 1

Today is the beginning of a series of anniversaries. This is the day that everything about my life changed forever.

As we reach another anniversary, I will tell you about that day.

First thing in the morning I took Madelynn to the Urgent Care for a really bad cough. An x-ray was taken to make sure there was no fluid in her lungs. There was not. However, the Urgent Care Doctor was uncomfortable with what her saw and wanted a second opinion. He sent us home and said he would call after he received the second opinion.

I was sitting on the couch and the phone rang...............

I was told that Madelynn's heart was abnormally shaped and that she needed to see a pediatric cardiologist. The Urgent Care doctor told us that we needed to call the pediatrician as soon as possible and to call him Monday morning. As the Doctor spoke tears streamed down my face faster and faster.

By this time, Phil did not know what the doctor had said but he knew I was upset. Kaitlynn and Jackson saw me crying and rushed to my side. "Mommy, Mommy.....what's wrong!!!" I took a deep breath and told Katie and Jack this..............

Do you know what the shape of a heart is.....and I traced the shape of a heart where Kaitlynn;'s heart is? Yes Mommy. Well Madelynn's heart is not shaped like yours. They think she has a very special heart. In a few days we are going to see how special her heart is.

At that moment in time I have no idea where those words came from. My mouth was moving but I should not have been able to actually speak those words so my other children would not be afraid. Kaitlynn seemed okay with that and she and Jack went back to play. Phil calmed me down and told me not to worry until we knew something concrete. However, my racing mind got the best of me. I tried to remember some of the key words the doctor had said and started surfing the web. This was a bad idea.

There were way too many possibilities and my heart couldn't handle most of them. So I cried myself to sleep and would have to wait until we saw the pediatrician. Madelynn already had an appointment for shots in two days. So I just had to wait 48 hours. Easier said than done.

As this journey progressed, I would soon find out that this Urgent Care doctor, Dr. Alfred Kendrick, saved her life.

TTFN

Good-Bye Mama Kay

The last 5 days have been pretty busy but also very sad. Due to some complications my friend from work has fallen into a coma and is beyond recovery. Her children are all coming together this weekend to say a final farewell and turn all of the machines off Monday. See previous post here. I have cried a lot over the last 36 hours and today at work realized how much I will miss my friend.

My hope is that her family finds peace in her passing and I know in my heart God is waiting for her with open arms. Her husband passed away about 25 years ago, I am sure he is waiting for her. Good-bye Mama Kay I will miss our morning chats.

TTFN

Just some new photos

About a week or so ago I realized I needed to clean out my camera memory card. Over the last two months I have been taking pictures but did not edit them or clean them off the memory card. When Phil and I renovated our Master bed and bath about three years ago we did it in shades of browns. The top half of the wall is a color called antique lace and the bottom half is coffee.


If you ask me the top half looks like the color of of an aged doily, while the bottom half looks like I smeared a Hershey bar on the wall separated by a white chair rail. When the room was finished I decided to decorate the walls with only photos of the kids. These will be the additions to the walls.

So here is Katie.....

Then we have Jack......

Last but definitely not least we have Maddie.......

Not sure what I will do with this one???........ Daddy and Maddie sharing a Froot Loop....

TTFN................

Cheerleading

Back in May we went to Katie's Pre-School Graduation. On the back of the program it lists all of the graduates and what they want to be when they grow up. Of all things......Katie said Cheerleader. When Katie cut and donated her hair her only disappointment was that she couldn't put her hair in a ponytail like a cheerleader. Needless to say Phil and I got the point.

Over the first few weeks of elementary school as a parent you are always inundated with tons of events and activities for you and/or your child to participate in. We decided that when the cheerleader flyer came home that we would let her participate. Today was the first class. The parents are only allowed to be in the first class and the last class. It is too distracting to the girls.

For Katie she was very excited about the class. We figured since she was missing her old classmates and school maybe this would be a good thing for her to make even more new friends. We learned a few days before class that Katie's best friend in pre-school is also in the cheerleader class. So for Katie right now life is good.


Katie and her Friend........
Showing off her new moves........

Learning good stretching exercises......
With all of the adjustments Katie has been going through I think this will be something fun for her. The class goes until January so it will be awhile before I have new photos of her as a cheerleader.

TTFN

not what I was hoping for..............

Today started out bad because we woke up late..........Phil was to be leaving at 6am and I should have been showered and waking the kids for school. Instead, Phil woke up at 6am woke me up. I jumped in the shower and her comes Jack. Miraculously enough at 7:15 I was out the door to drop Katie off at school, Jack off to pre-school, stop back home to get Maddie a good breakfast and off to the pulmonologist.

It is almost 75 miles round trip to see this doctor so I wanted to make sure half way there she wouldn't start screaming for food. I was really hoping for good news today. The breathing treatments are the last part of Maddie's recovery. She still gets one treatment a day. We had an x-ray done Tuesday so the doctor could see if there was a change.

As the doctor talked my heart sank. In six months, there was no additional recovery to Maddie's diaphragm paralysis, in a month she has gained no weight and she could be on the breathing treatments for years. After I stopped sulking I started thinking like a responsible parent and asking questions. So yes all of these things are not good news but here is a little bit more information.

Her diaphragm could still recover over time...if it doesn't she could still have a pretty normal life the way it is. She would be better off if it recovered more. She could change her breathing treatments to an inhaler. It would be more convenient for us to change to an inhaler. I decided I would wait til she was older before we made that decision. There is also a slim chance we would take her off the treatments altogether to see if she could handle it. My thinking was maybe after cold and flu season.

Has not gained even an ounce. That was definitely not what I was looking for today but she has not lost any weight. In the last two weeks Maddie has gone to ALL table food and all drinks out of a sippy cup. No more bottles. She also is sleeping on a cot at daycare. State law requires all children a year and older to sleep on a cot. For those of you who have been around Maddie she doesn't walk ........SHE RUNS everywhere. She is afraid she will miss something when Jack and Katie are around and she hates not being in the same room with me. So she is eating just not enough to gain weight only enough to maintain her weight.

This is okay for now. In about two weeks I am hoping she will show signs of increased eating and slowly the weight will stick around. She eats well at daycare and most days pretty good at home. I just need to sit down and develop a high calorie diet for her she will like. I still meet with the nutritionist once a month and she and I will be speaking soon.

When the doctor said it might be years before she has another chest x-ray, I wanted to cry. It means my child is not getting completely well and may not ever get completely well. Yes she could still have a normal life but she is not completely well. I just felt defeated. I had so much hope going into this appointment today and I left totally deflated and angry. To see Maddie you would have not idea the journey we have walked, some days crawled and other days sat motionless. It is just so frustrating to hear she has no change.

The drive to the other children's hospital today, there is no direct highway route. We travel a two lane back road through the country. I actually love this drive and is usually pretty peaceful in the morning. On the way home, my mind was racing and I was angry. I had become so comfortable with seeing her and feeling like normal in a way I feel like I have let her down. So over the next few days I will create a new game plan and become very defensive about her again and the people she is around. It is the only way I can protect her and help her. I hate being knocked down we didn't deserve it.

Hoping for better days.....................TTFN

Hard lesson learned.....

Over the last several months Jack has been playing with a little boy that is not a good influence. This little boy is teaching him to be aggressive and foul language. We will just call this little boy John (yes I changed his name). It has gotten so bad that John has been pulled out of the classroom some days more than he is in the classroom. To be honest I was quite relieved because Jack is much better behaved when not with John.

When Jack and John moved into the pre-kindergarten room together I was hoping a new room, new teachers, a fresh start and Jack would be better behaved. Something weird happened though. Everyday when I picked Jack up John would come running over and touch Jack. He would hold his hand and not want to let go. I used to think it was kind of creepy. It made me feel like this little boy had some type of hold on Jack. I asked Jack to make new friends.

I really wanted Jack to separate himself from John. His teachers even said they have no problem with him when he is separated from John. Somehow the two of them always manage to find each other and end up playing together. I talked to the director about it. She said she observed the two of them playing and they were interacting well, she was really impressed.

So I kind of left it alone but I truly did not like it because I didn't like the way it made Jack act. Jack would bring the aggressive behavior home against Katie and Maddie and it really bothered me.

That is until Friday............

One other side note is that over time I have figured out that John's family was having problems. Really bad problems, his situation at home was sad.

So Friday I go into Jack's classroom to pick him up. Jack did not want to go home because the class was watching a movie. I told him that we had to get home so we could have dinner with Daddy before he had to go to the doctor. Phil had his sleep test Friday night.

John was sitting in the classroom watching the movie too but separate from the rest of the class. He heard what I said to Jack and asked me, "What does Jack's Daddy do".

I told him the his daddy was coming home from work to have dinner with us. John pipes up and says, "I don't see my Daddy".

At that moment it hit me I was teaching my son the wrong thing....................

What I should have done is teach my son that it is okay to play with John but it is not okay to say bad words or be mean to other people. Instead I was teaching my son to abandon a little boy who's parents separated and John was not allowed to see his Daddy. The reason John was trying to hold Jack's hand was that he did not want Jack to leave. Jack is one of the constants in John's life that makes part of his horrible life normal.

At that very moment in the classroom I wanted to take John home with me and let him have fun with Jack. I wanted him to sit and one of our crazy family dinners and just see what it is like. Things may be chaotic at my house but my children know that their Daddy loves them and would rather be at any family dinner then not with them.

When I thought I was protecting Jack I was in fact making a little boys miserable life even more miserable. I should have been teaching Jack how to love him. Instead, I was teaching Jack the easy way out by ignoring John and also abandoning him. It made me cry because I feel like I failed my son. The funny part about the whole thing is that my son disobeyed me and still plays with John everyday.

There was one point a few weeks ago that I was hoping Jack and John would go to different kindergartens so that Jack could show his true potential and not be influenced by the negative things that John's family has taught him. There is now a part of me that thinks if the two of them ended up in the same school it wouldn't be so bad. I think in a way Jack would protect him and always be his friend.

We try so hard to do what is best for our children. Sometimes the best decisions come from listening to our children. Their innocent view of life makes all the complications just melt away and the right answer is staring you in the face.

I feel like such a horrible mother for not seeing it. I am just glad Jack showed me before it was too late and I made a rash decision. Now I just need to figure out how to teach Jack it is OK to play with John but not everything he does is OK. Hopefully over time Jack will figure it out too.


TTFN