fun with dissolvable puffs

Recently I moved my computer from our bonus room upstairs to a corner in our Living Room. It has worked out really well. I have found a children's education web page that they can play games on. They are learning to work the mouse and click and chase moving objects. It is fun to watch them.

While this was going on I strapped Maddie in the booster seat in the kitchen with me so I could do the dishes. I was giving her some of her puff snacks to eat to keep her busy. Her tray to her booster seat was dirty so I strapped her in and would put 5 or 6 puff between her legs so she could pick them up and feed herself. It was working out well until................

These particular puffs will dissolve upon contact with saliva in your mouth or the will stick to your fingers if your fingers are wet. So I would load a few dishes, look at Maddie, load a few dishes, look at Maddie............

This is what I would see her doing. By the time she would get down to her last puff her fingers would be so wet the puffs would stick to her fingers. It is kind of like one of those pointers with the magnet on the end. Her wet finger would barely touch the puff and it was stuck there till she made it to her mouth.

This went on for maybe twenty minutes until I saw this..................................................

The more puffs she ate the wetter everything got, her fingers, her seat her legs. As she is learning to eat she slobbers a lot. The puffs were sticking to her thighs and she was trying to get them off to eat them. (Yes, she was completely strapped in and I was never more than two feet from her).

Once I finished the dishes I took her out of the booster seat to go in the living room and found about 5 of these puffs stuck to her butt. Children are funny creatures and watching how they investigate their world some times makes me laugh.

Wishing you many laughs.....

TTFN

green beans and cornbread stuffing

Tuesday was a ridiculous day and I am very glad it is over. I had spent two hours on the phone trying to get our money back from Maddie's medical claims. I finally saw some light at the end of the tunnel. Been getting ready for this coming weekend too.

Maddie is getting Baptized Saturday at noon. I am very excited about this for lots of reasons. However the one that comes to mind first is that we had Maddie scheduled to be baptized November 8th 2008. We called and postponed it because she was in the hospital. So we are finally moving on to make that happen.

After spending the morning like a chicken with my head cut off, I decided to roast one. I roasted a chicken stuffed with cornbread dressing with a side of green beans. It has quickly become a favorite in our house. The kids gobbled it up like they haven't eaten in days. The best part about dinner was that I watched Ms. Madelynn literally shovel green beans and cornbread stuffing in her mouth. I just stopped to watch her.

When I met with the nutritionist last week she said I could start introducing table food to her. Never in my wildest dreams would I have thought she would do so well. To most people that is no big deal, for me Tuesday that was HUGE!!

TTFN

The Edge of the Cliff

"When God leads you to the edge of the cliff, trust Him fully and let go. Only 1 of 2 things will happen, either He'll catch you when you fall, or He'll teach you how to fly!"

I believe He pushed us to the edge when we were told that there was a problem with Madelynn's heart. I believe we slipped and fell off the day we walked across the bridge from the cardiologist office to the children's hospital. I believe He caught and carried us while Madelynn was in the hospital. I believe everyday she gets better and stronger we are learning to fly.

My best friend called me Monday in the middle of the day. She works thirds at a hospital so it was very odd she called me to begin with. I could not answer because I was tied up at work. I worried because her father lives with her, she cares for him. I usually hear from her once a week about dinner time when she is on her way to work. When I finally got back with her she just wanted to chat. I was so relieved.

We have been friends for almost 25 years, she and her husband are Jack's god-parents. I do not know what I would do without her. She doesn't know it but she was one of the people in my life that helped carry me while Madelynn was in the hospital. I called her all the time because she is a nurse. The day Madelynn was admitted in the hospital I think I talked to her 6 times in about 5 hours. She was so calm and kept it together just asking me questions about what was going on.

Talking to her helped make it real for me that it was not a dream. Explaining things to her helped the things the doctors told me sink in and stay there instead of everything being a big blur. Even when they told us Madelynn should not be alive. She was there. Even 500 miles away, she was there.

Because the days get easier, sometimes I remember things that have happened back then but I don't remember ever thanking some people. I would hope in life that I would never have to return that kind of favor. However, we all know that somewhere down the road, I will. I hope that I can keep it together for her they way she did for me. Most of all I hope she knows my life will never be the same because of her. I love her to pieces.

Thanks for EVERYTHING Girly!!

TTFN

for those of you wondering.....

Here lately I have been getting a lot of people wondering how Maddie is doing these days. We all get tied up in our own lives that we forget about others. Not on purpose but it happens. So a little update on Maddie......................

She is about 16 and a half pounds. In 5 months she has gained about 6 pounds which is great, especially considering she was sick for about 2 weeks in May. Even the slightest cold still gets her way down. Until her immune system can really get strong just a cold will slow her down. We have been in contact with her pulmonologist as soon as she became ill.

He went after it at 110%. Upped her breathing treatments, treated her with a 2nd antibiotic. She was eating well but not great during that time. Now that she is better she is eating great. When Maddie is really ill she has to eat at least 500 calories to maintain and can do that for just a few days. Our everyday goal is to get her to eat 750 calories.

Since she has been feeling better she is eating 800 to 950 calories everyday. She is still gaining only average weight for a child her age though, because she is so active. If they had an olympic sport for infant commando crawling she would be the Gold Medalist. In the last 10 days she has started crawling on her hands and knees. Which is HUGE!!!

She is even pulling herself up to stand, hanging on to the couch or pack n play and walking along the sides. For the average child this is actually slightly behind. For a child who had open heart surgery a little less than eight months ago and who 5 months ago still could not hold her head up, it is AMAZING.

Because Maddie spent a total of 24 days in the hospital during the last 3 days of October, most November and a few days in December, she was behind the eight ball to start. I was so worried about her then. The physical therapy she has once a week is doing amazing things. We still meet with the nutritionist once a month. As far as her doctors are concern we are down to seeing them each one more time this year and then it will be once or twice a year.

Now that we really feel like we are on the other side of the hill we are going down really fast I need to fill my time with something else. I have checked into becoming a regular volunteer at the children's hospital. It is really a long process one because they only want people who are willing to make the commitment and make sure they should be around children. You have to go to a meeting just to get an application to apply.

I found out Wednesday that they had an application meeting last Thursday night. I could not work it out with Phil on such short notice. So hopefully in about 3 weeks they will have another one. I really want to give back to those at the hospital who really helped us out and educated us as we were going through it.

The point to all of this is, if you met Maddie today you would have no idea what she has been through except for the fact that she is still a little thin but gaining every day. She really is doing well. Thanks to all of those who still ask.

TTFN

Happy Father's Day Pilbert

Quick update

It has been a very busy week and at the last minute we decided to get together with some family. The next several weeks are going to be very busy this weekend was as good as any......Phil's brother Jon, his wife Dixie and daughter Emily came for a visit.

We were very excited to have them. It has been several years since they have come down to see us an the house. We usually saw them in Indiana (where they live) or in DC. It was a short visit and they will be leaving tomorrow but it was very nice to have them. Dixie and I realized we had a lot more in common than we ever thought and it was fun.

Hopefully as things get better economically we be able to see them more. For now a short visit was as good as any. Hope to see them again soon.

On a side note, yes I updated the blog itself with some new photos. I also realized in following other peoples blog I never included a photo of our oldest child Lady. We have had her since March of 1998. Yes she is 11 years old. I adopted her for Phil for his birthday. Lady was actually the first birthday present I ever gave him. She is a mutt, but she has the Shepard body, chow tongue and under coat, Rottweiler markings on her face and to this day still chews like a lab. Just thought she should be included too.

TTFN

been meaning to....

I have been meaning to post this since he got it last week. We have had a lot of difficulty with Jack's behavior and every day is a new challenge. I have been down many roads getting help for him. I have been talking to someone who I believe can help us.

However last week. Jack earned this. I almost fell out. His teachers were very excited to give it to him. The could not tell me enough nice things about him in everything he did that day. It made me feel better. It also reminded me not to give up and that he can be good when he wants too. I just have to make him want to.

Now if I could just bottle that little boy that was in the classroom impersonating my son that day life would be good.....lol.

Don't to forget the little things.

TTFN

by 1:30 Tuesday

This day has been really unreal so far. I was awaken by Katie and Jack about 7:30 this morning. I had so much to do today I really wanted to be up by 6:30. Most of you know that due to the economy and Maddie's recovery I only work 3 days a week right now. Today is supposed to be a day off. So at 7:30 this am I woke up and looked in on Maddie the room was still dark from the curtains. I saw what looked like blood and I panicked.

When I turned the light on it was poo lots and lots of poo. Maddie's diaper had leaked poo and she was sleeping in it. I had 30 minutes to get her changed, fed, Katie and Jack dressed and off to pre-school so they could eat breakfast with their friends. We were a few minutes late but they had not reached their room to serve their breakfast yet. As I walked in Jack's classroom they were making his plate. WHEW!!! we made it.

So I get home and have 30 minutes before the first appointment shows up. We have some assistance with Maddie's recovery and Jack's behavior issues that all of these people come to the house. Jack's case worker showed up at 9 and we talked about him and I fed Maddie 2nd breakfast. We really like her and feel she is going to be able to help him. She will observe him in pre-school next.

When the case worker left I had 15 minutes to make sure Katie and Maddie's room was clean and vacuumed before the PT showed up. Lucky for me Katie had been keeping her room clean. About 5 minutes after I put the vacuum away she showed. What I did not know was that the case worker who oversees the therapist came to observe too. We talked about Maddie's recovery and how just 6 months ago Maddie could not hold her head up. Today she showed the therapist she could sit, crawl, stand.

They were all very excited for her. We even talked that instead of Maddie aging out at three she will probably age out of physical therapy at 18 months old because she is recovering so well. After PT I changed rooms again because it was time for Maddie to eat and the nutritionist was due in about 15 mins. So Maddie was weighed and measured. She only gained a few ounces but a gain is a gain, I'll take it.

The nutritionist was thrilled to see her. She said that you would have never known she had open heart surgery 8 months ago. She said looking at her today she would not need her to come out anymore. With her history and erring on the side of caution in another two months she will probably make the visits every 3 months for a year and then maybe age her out early too.

So by 12:45 all of this was complete and I had to strip beds. Maddie had her pooping disaster, Jack just needed fresh sheets and Katie accidentally wet the bed last night. So I put a load of bedding in the washer and I jumped on the computer while Maddie slept. I have had a full day and am ready to go to bed.

However it is only 1:30 and I still have worry about the rest of the day.

Hope your day is not as chaotic as mine. TTFN

school closing

I found out this week that my elementary school back home officially closed due to economic reasons. The link I have attached tells the story from the local paper. The teacher that comments in the story was my 3rd and 5th grade teacher. She was one of my favorites. http://toledoblade.com/apps/pbcs.dll/article?AID=/20090506/NEIGHBORS02/905050345

I started thinking about all the things that made that time in my life so great. In my old neighbor hood, I lived 3 houses from the school and so close to the church I could sit on the front porch and tell you who was walking into church and what they were wearing.

I loved when it snowed really hard and school was closed because you could go the "bowl" and go sledding. If you waited long enough the school yard would be plowed and you could go play in the snow banks. I lived so close to all of this I could hear my mom yell for me from the back porch.

I loved right before school was to open for the year sneaking in the school and meeting the teachers as they were preparing their rooms for the new year. I would help dig out the new books and help set up the classrooms.

I loved playing softball and was quite good at it at one time. I would go down to the playground and watch the boys play baseball or what they called "lob". Sometimes when they were short players I would be the designated pitcher. No one wanted a girl on their team so I just pitched for both sides.

I remember playing on the school fire escape and getting caught by my parents because you saw it from my home. There were windows on the back of the school that were pretty low to the ground you could climb up and sit in the ledges. I spent a lot of summer afternoons sitting in the window ledges.

Every Friday we walked from school to church as a class and would have to go to mass. When it was a special event or Holiday coming we would have to go to music practice on Thursday afternoons at the church. The church was pretty big and I loved walking in this big empty church because the silence was deafening. The sun would be beaming in through the stain glass windows. God was just waiting for you to come and visit.

The church will remain open. There is so much history there. My grandmother met her second husband there and they were married there. My parents were married there and I was married there. Even though Phil and I met and live in NC, we married in Toledo because I wanted to get married where my parents did. With Phil's family living in Indiana it was easier for them to come to Toledo than to come to Charlotte.

Probably my greatest memory was on Saturday nights. About 6:30 on Saturday night I would still be playing outside, especially in the summer. Like clock work my Great Uncle or his future wife my Great Aunt would bring my great grandmother to church. She only lived about 4-5 blocks away from us. I would be dirty and sweaty from playing outside all day but she always accept a hug and a kiss on her way into church. Some Saturdays I would go and sit with her at mass. We would whisper and giggle before it started. I miss her.

There are so many memories most of them good, it is sad to know that part of your own personal history closed too. It was a part of life that helped mold you into what you are today it's just gone. Hopefully, the new venture that is being created is a step in the right direction.

Finding the energy

What a day.......Tuesdays are a day off for me so I just kind of let the day start whenever. Because Jack is not a late sleeper I can always rely on him to get me up no later than 7am. So this morning he decided it would be 6:30. After Maddie was fed, changed and breathing treatment done, I had to convince Katie and Jack it really was Tuesday and they needed to get ready for school.

After everyone was fed breakfast including Maddie's "second breakfast" off to school Katie and Jack went. Maddie and I made a few short errands post office and pharmacy. We couldn't be gone long because the physical therapist would be at the house by 10am. Waiting for the therapist to show up I had a brain storm (Phil hates these). I decided to take some leftover paint from a previous project and give a mantel shelf a face lift.

After therapy and while the first coat of paint was drying, we left for more errands. We went to the doctor's office for a weight check. We have gotten out of the habit of going and should not have. Until Maddie is 20 lbs I will still worry about her weight. Today she was 16lbs 3.5oz. I was hoping for just a little bit more. However it is a gain and she really is thriving and more mobile than ever. So, I will take the gain and move on.

I had to make a few calls this morning to find Maddie's breathing treatment med. The generic version is like gold right now and until June 30th free generics. I had to call three pharmacy branches to find the med. So after the doctor's office we went to go pick it up. When we got home and had lunch I put another coat on the mantel shelf. Then I got really ambitious and changed Katie and Maddie's room around. Or should I say back the way I like it. Katie way really excited.

After picking up Katie and Jack, making dinner getting the kids their showers. I needed to find something to do. I know as if I had not done enough already. However Katie is having difficulty staying dry over night. I have been staying up till midnight and walking her to the bathroom and again at 5am when Phil gets up. It is helping her stay dry and I have less laundry to do.

Tonight I decided to look through the kids baby books and figure out what I needed to do to update them. Katie is just missing a few items updated pictures, stories about her graduation and hair donation. Things that have occurred in the last six months. To my surprise I realized I had not put a single thing in Maddie's book about her surgery.

This event will take a few pages. I want her to know about it all for many reasons. Health reasons to know her medical history, it was quite an event in itself. This means something else too. It means that I need to relive it. I need to make her a time line and share with her everything that happened.

I think the little details are what was important because it showed me what a strong will she has. This will help her later in life. Even as an infant she showed me what she wanted and didn't want. I just had to be smart enough to read the signs and be her voice. I am not even sure how to begin. I also want to do it creatively, might be therapeutic.

Lately, I have been getting the feeling that August and September are going to be chaotic. I might get to go back to work full time? Phil may come back out of the field? Katie starts kindergarten, Maddie will celebrate her first birthday and in October will celebrate the anniversary of her heart surgery.

Our life is going to change again soon and I hope for the better. We have survived so far. I don't want to ever look back on this time and feel I wasted days. I want to get the most of them while I have them. Most days I always find the energy to get it all done. They say what doesn't kill you makes you stronger I guess that is why some of my friends call me She-Ra.

Headed off to take care of Katie and finally get to bed, 5am comes early.

TTFN

The beach trip part 3

I have posted losts of photos from the trip. This has been a really busy week but I wanted to share these. I did not share most of the wedding photos because they were not mine to share. Franka posted them on her face book page.

Enjoy the photos!!!

TTFN

The beach part 3

Beach Trip part 2

As our beach trip began we were all so excited to get there. However, with a 3 and 5 year old constantly needing to use the restroom it seemed like it took forever. One of the stops even Madelynn was getting antsy. So Daddy took her out to feel the grass between her toes. Can you tell she enjoyed it??

I love these photos.

TTFN

Treasured Moments

As I was driving home from work today there are a few precious moments that I get to be by myself. At 3:00 in the afternoon when I am on my way home, most people aren't getting off yet. So the trip that takes me 45 minutes in the morning only takes about 20 minutes in the afternoon.

In my 20 minute drive today, I was listening to a radio show that was talking about treasured moments. Some small little lapse of time that you wouldn't trade for the world but you will remember forever. Some people talked about there last days with their parents, kids going off to school, etc. Just that one time that stops your clock and you savor that moment because you would hate that you missed it.

My treasured moment with Kaitlynn, most recent one anyway was out haircuts. In five and a half years Kaitlynn has only had her haircut twice (4 times if you count her personal trim jobs, lol). I was on my 3rd donation. But for Kaitlynn it was a big deal. We spent the afternoon surfing the web and she told me exactly what she wanted. When I found it, it was like she won the lottery. The day of the haircut we went to the salon I always take the kids. They have a side room for the parents. So I did not see the cut on her till the final product. She was beautiful. At that point I no longer had 3 children 5 and under, I had a blossoming girl who was ready to take on the world.

As for Jackson sometimes it seems that treasured moments are hard to come by. There has been a period where not too long ago I felt like all I did was tell him no. It was very frustrating for both him and me. Some days I want to just cry myself to sleep because I felt like I was losing control and he would hate me. Those of you who know Jack, he loves to dance. He might even acquire the nickname "snake hips" (that's another story).

I was trying to put laundry away and was listening to a NCIS episode in the process. We watch the show even in re-runs that Jack knows the theme music and yells N C I S every time. During a marathon day, an episode was just starting, I was trying to put laundry away and he was dancing all in the way. Instead of yelling at him to get out of the way, I found myself spend the few precious second the theme lasts at the start of the show dancing with him in my bedroom. When the music was over and the commercial came on he moved out the way without being asked and went on his merry way. He always makes me laugh even when I shouldn't.

As for Miss Madelynn, there are so many choosing one is hard. She was in the CVICU and it was 4 days after her surgery. I really had not left the hospital in 5 days. Phil and I had agreed. She was not our only child and we promised to have a Sunday family dinner with Kaitlynn and Jackson. I was finding it incredibly hard to leave. How did I know that she would be okay without me?

At this point in her recovery, there was a nurse in her room sitting at her bedside 24/7. So the nurse knew I was struggling with leaving my baby girl with strangers. Phil had already gone to start dinner and he was going to try and work the next day. Madelynn still had several tubes in her and other lines coming out of her. All I could do was rub her foot and stare into those big blue eyes at the time.

The nurse asked if I was okay and if I had any questions. I asked her how was I supposed to leave her, I couldn't break a promise to my other children, but how could I leave my baby. The nurse said something I will never forget, 'would you like to hold her' I almost fainted. It took her about 10 mins to set it up but all the wires were still attached and I was able to sit in a rocking chair and rock her to sleep. I think for the first 5 mins I cried, finally being able to hold her after 5 days. Even though I am completely tone deaf, I sang to her and just watched her sleep.

I don't even know how long it was that I held her but it doesn't matter. It is one of my best treasured moments. Whatever it is, I hope everyone has a treasured moment in life even if it is just one. Seven months ago yesterday Madelynn had her surgery and she has come a long way. It is a journey, I never thought I was strong enough to travel, I would never wish on anyone, but I believe she has made me a better person because of it.

TTFN