History

Sunday, October 16, 2011 8:56 PM CDT

Hello Everyone!
I know it's been a very long time since I updated Maddie's site - once again I apologize!

This Tuesday (10/18) will mark Maddie's 3rd anniversary of her passing. I can't beleive it's been 3 years! We miss her very much but we certainly feel her presence. On our way to church this morning we saw over a dozen eagles... One flew right over us very slowly as we drove down the road. We continued to see groups of 3-4 in trees and finally a field of eagles both mature and young - it was an incredible site but so many I lost count!

We had a beautiful service for Maddie and released balloons at Maddie's grave site with our families. Lily was so excited to send her balloon to Maddie in heaven. Lily always talks about Maddie and how she is in heaven. She loves her very much!

Lily keeps us very busy but we absolutely love it! She is kind, very smart and full of life! As you can see she looks so much like Maddie I honestly beleive she is two little girls in one. Her personality is bigger than her and so much more...

Have a great week!

Love,
Steve, Darla & Lily

Sunday, May 15, 2011 10:31 PM CDT

Hello Everyone!

I am so sorry I haven't updated Maddie's web page in months... I have no excuses other than I misplaced the CD's of Maddie's photos but at last we found them and I couldn't be happier!

Steve, Lily and I are very busy but never to too busy to see our signs from Maddie. We continue to see our eagles and a few cardinals. One sign I had recently will always stand out as one of the most memorible ones...

THe night of our Easter (Saturday night) Lily was very sick so we stayed home from church while Steve was removing water from a basement of a customer's house. It was after 11:00 PM, I was holding Lily in my arms, she was having a difficult night due to a high fever. I looked down at Lily at the same time Steve was coming up from the basement, I saw Maddie's face and hair.. Steve saw Maddie's profile and face too. I had this overwhelming presence of Maddie with us at that moment. It's so hard to describe, but at that very second Maddie let us know she was here with us and watching over her little sister Lily. It was an amazing experience!

Lily is two now and she's certainly keeping Steve and I on our toes - she is one busy little girl! She knows her A,B,C's can count to 20 and we're working on our colors along with potty training... she is doing great.

I promise it won't take me 4 months to update Maddie's page again.

Have a great week!

Love,
Steve, Darla and Lily

Monday, January 10, 2011 7:38 AM CST

Happy Birthday Maddie! Maddie will turn 7 years old tomorrow. We celebrated yesterday at church by sharing cup cakes with the Sunday School class and releasing a pink balloon after church. I can't believe she is 7 years old already. We saw 2 eagles yesterday on our way to church, one in a tree right next to the road. She just looked at us as we slowed down to say "hi".

We hope you had a wonderful Christmas and Happy New Year! We had a wonderful time celebrating the holidays with family and friends. Grandma Tess came back with us after Christmas and spent a week at our house. I think she was beat and ready to go home, Lily had her running non-stop from the moment she got up. My mom turned 80 years old this past month but she can keep up with Lily and plays with her all day. She even watched Lily's favorite Elmo movie everyday...several times a day! Lily doesn't seem to believe grandma when grandma tells her she's "semi-old" and can't get up as fast as her, Lily just laughs and pulls her around to the next thing. It's too funny!

Happy New Year!

Love,
Steve, Darla and Lily

Sunday, December 19, 2010 9:34 PM CST

It's hard to believe Christmas is here and 2010 is coming to an end. I can't believe how fast this year has gone. Lily will be two in February and she is certainly starting to show her independence...

We have certainly seen several signs of Maddie over the past several months but more then usual this month. We had an eagle in our tree the end of November on one particular bad day for Steve. Steve came back from putting Zach down, he was twelve years old and having a very difficult time getting around, his hearing was failing along with his eye sight. Steve drove up the driveway and the eagle was in the tree right next to our house. When he got out of the truck and started to walk towards the house the eagle flew out of the tree and right over Steve - he was very happy to see Maddie. It was as if she was telling him everything is okay - Zach is with her now.

Yesterday was a very good day for Maddie sightings. On my way to church for our Sunday School Christmas Program rehersal I was listening to Christmas carols on the radio and thinking of Maddie. I was getting a little teary-eyed listening to one of my favorite Christmas songs just then a very large eagle flew up from the side of the road right next to me - she was amazing! I saw two more eagles on muy way after this one.

Today Steve, Lily and I were driving to church and actually pulled around to look at her in a tree. The photos above are from today she was as beautiful as always. I definitely feel Maddie around me this time of year - when I need her the most!

Lily is getting pretty excited for Christmas. She helped me decorate the tree and she loves to look at the lights on the tree. She points to the tree and says "lights... lights" and then stands there to admire the beauty of them reflecting off the tinsel. It's going to be a very fun holiday for her.

May you have a very Merry Christmas and Happy New Year!

Love,
Steve, Darla and Lily

Sunday, November 21, 2010 8:59 PM CST

Hello... sorry for the delay with the updates. It's been crazy busy for the three of us but that's no excuse!

Some of you know Steve left Andersen Corporation in August. Although this was a very difficult decision for Steve to make it was the right thing to do for him. Since then he has been researching starting a franchise called Advantaclean which is an emergency clean up company along with mold removal and duct cleaning. We are very excited to begin this new endeavor but it certainly doesn't come without concern as well. Steve has always wanted to be his own boss and this is the perfect opportunity to do just that. Steve will be flying to Charlotte next week to start his training and become certified to do the work. He can't wait to start working again! I'll miss the fact that he has been doing all the work around the house!

We are extremely blessed to have such supportive family and friends who have all wished us the best during this time!
We have many things to be THANKFUL for this year! As one door closed another one opened and we couldn't be happier...

Happy Thanksgiving to everyone may you have a safe and happy holiday.

Love,
Steve, Darla and Lily

Sunday, October 17, 2010 7:52 PM CDT

Maddie's two year memorial service was beautiful today... The day started with us seeing an eagle in a tree on the side of the road. Steve stopped so we could talk to Maddie and tell her how much we miss her. The eagle watched us watch her. It was amazing!

Fr. Chris made Maddie's service so special but it was extra speial by including the prayer her cousin Nadia Fall wrote for Maddie on her birthday this year. I did include the prayer at that time but I'm sharing it again with you - it's too wonderful not to.

Maddie's Prayer:

Thank you God for Madeline Fall, for making her
smile contagious, for putting an angel on earth,
and for seeing and spending time with her.

Thank you for watching her grow, for listening to her
voice in song and praise, and for seeing her smile.

Thank you for letting us play with her curly hair,for
playing with her, and for making Steve and Darla
ovejoyed.

Thank you for making her special, making her eyes
sparkle, and for giving Lily in memory.

Thank you God for her grace and beauty... Amen

We love and miss our angel so much!

Love,
Steve, Darla and Lily

Monday, October 11, 2010 6:52 AM CDT

It's been another crazy busy time for us so haven't been updating Maddie's page as I should be.

We had a great time at Tony and Brenda's annual hayride a couple of weeks ago. There were lots of kids for Lily to run around with but of course she loved hanging out with her cousins, Nadia, Ellie and Ava. Last weekend we had a wedding dance Saturda night. Lily was dancing and showing her moves to another little girl about the same age. I think her favorite part was dancing with her daddy...

This weekend grandma Tessie is coming for a visit and for Maddie's 2 year memorial service on Sunday. I can't beleive it's been 2 years (10/18)!!!! I have no idea where the time has gone. We say our prayers in Maddie's room everynight, Lily loves to touch Maddie's pictures and blow her kisses when we say good night. She says "night night Maddie" and smiles. It's so sweet to watch Lily react to seeing pictures of Maddie or hearing us say her name.

Yesterday on our way to church we saw two eagles. One was in a tree right next to the road, I made Steve stop and take photos of her. On our way home we saw another eagle soaring above us next to the road. I can't tell you how much I LOVE seeing Maddie's signs that she is indeed with us each and every moment.

This weekend will be a tough one but knowing Maddie is in a better place definitely helps us get through the sad times.

Love,
Steve, Darla and Lily

Sunday, September 19, 2010 9:24 PM CDT

The end of summer is upon us and we're gearing up for cooler weather. We had our annual Harvest Festival at church today - the cabbage rolls were once again out of this world! Lily had a great time at the Fish Pond and received lots of fun games and toys. Aunt Denise and Uncle Dan spent the afternoon with us as they always do.

I've been thinking of Maddie more and more lately as we grow closer to her two year anniversary. On my way up to church yesterday I was thinking of her and just at that time an eagle flew up out of a field next to me. On our way to church this morning I was thinking of how at the exact moment I was missing Maddie the eagle appeared. Just as I was thinking about this and smiling another eagle landed on the top of a pine tree at the moment I took the exist ramp and passed the tree. I smiled and said "hi" to Maddie, Lily was in the back seat and said "hi Maddie" as well we were both smiling and giggling.

Lily loves to go to Maddie's gravesite when we're at church. She likes to sit or stand in front and then she'll kiss Maddie's headstone. Steve and I get a kick out of how she says Maddie and smiles. Today I was talking about Maddie to someone while holding Lily. Lily said "Maddie" and pointed out to the cemetery. She definitely knows her sister...

Have a great week!

Love,
Steve, Darla and Lily

Sunday, August 15, 2010 4:42 PM CDT

Again - I am so sorry for the delay with Maddie's updates. We've had major issues with our internet and now cable so I haven't been able to update as usual.

Where has the summer gone? Boy it's hard to believe it's mid August and summer is coming to an end. We'll be taking Lily to the Minnesota Fair in two weeks or so - wow!

We've been busy but not really sure what we've done... It just seems that the days, weeks, months are flying by but not a lot to say of what we've been doing. We will be heading to the cabin for the Labor Day weekend with the Fall family which I'm looking forward to.

Maddie's garden has seen better days... I'm sorry to report the deer have been feasting on Maddie's flowers the past two weeks and it is in poor shape. Most of the flowers have been chewed down to nothing or they just ate the flowers so the only thing left are the green stalks. We have a momma with twins that have been around our house all summer but recently decided to feast on Maddie's garden. Believe me I was not happy to see this progression but I'm sure Maddie doesn't mind that they are enjoying themselves.

Have a great week!

Love,
Steve, Darla and Lily

Monday, July 12, 2010 10:28 AM CDT

Sorry I haven't updated Maddie's web page for awhile. Our wireless connection has not been working so I couldn't update it.

We've been having a great summer although we haven't done a lot we always seem to be busy. We took Lily to Fun Fest Friday night in New Richmond. We met up with grandma and grandpa Fall, Dennis & Laurie and the girls and Brian and Cheryl. Lily LOVED the car ride with her cousins, she was very mad at us when we walked away. I ended up taking her again because she was throwing a bit of a hissy fit. Lily also loved the horses on the carousel!

We were standing in our church parking lot yesterday talking and an eagle fly over us very low but proceeded to soar above us getting higher and higher. Of course by the time I got my phone out to snap a picture she was a bit higher, hopefully you see it's an eagle. We all said "Hi" to Maddie.

Have a great week!

Love,
Steve, Darla and Lily

Sunday, June 20, 2010 9:30 PM CDT

Happy Father's Day to all the dads, grandfathers and god-fathers out there. I sure hope you had a great day! We had a wonderful day with the Fall side of the family then a great time this evening grilling out. I think Steve had a great day.

We've been busy the past two weeks but we had an incredible time in Lodi, WI last weekend celebrating my mom's 80th birthday party with my side of the family. True to form the Lindner's had one heck of a good time at my cousin's place. Lily loved running around and dancing in the pretty barn. We can't wait to go back.

Maddie's garden is growing and blooming at different times, it is beautiful. It is wonderful to see how it changes week by week and the colors that pop. Right now there are purple flowers and some white ones that are about to pop next.

Have a great week.

Love,
Steve, Darla and Lily

Sunday, June 6, 2010 8:51 PM CDT

We had a fun filled weekend but also brought back so many memories of Madeline. It was Robert's Good Neighbor Days a festival we took Maddie to many times. Maddie liked the carousel rides and I know she loved the parade on Tony's wagon.

This year of course was very different. Lily, like her big sister loved the carousel and the parade. I took Lily on the carousel first and put her on the horse. She liked it until the ride picked up in speed then she didn't want to be on the horse anymore, so I held her in my arms but she wanted to have her hands on the horse. Steve took her next and sat on the bench I took Maddie on the last several years. She really liked it when daddy took her.

Today we got to ride on Tony's wagon in the parade. The weather was a little cooler but it was great. Lily really liked the fact that she got to ride on the big ride and everyone was watching us. Lily smiled and waved to people but she did get a little tired of doing it pretty quickly.

Afterwards, we went to Tony and Brenda's house for a gathering. Lily loves to play with all the toy tractors and other toys they have. Lily was very good for not having a nap, she couldn't sit still for anything. She crashed when we got home tonight.

I thought of Maddie more this weekend just because this weekend was so special for us. I'm sure she was looking down on us and smiling at her little sister following in her footsteps...

We are getting very excited for next weekend. My side of the family is getting together to celebrate my mom and her twin sister's 80th birthday party. The party is next Saturday, we'll be heading to the Madison area Friday. The party is at one of my cousin's summer house which used to be an old tabacco farm with the original house and barns. Yes, there will be a barn dance! I'm looking forward to seeing my aunts and uncles and cousins.

Have a great week!

Love,
Steve, Darla and Lily

Thursday, May 20, 2010 7:27 AM CDT

Spring is in the air for sure... More like summer this week! It�s the perfect week to plant flowers and add a couple of plants and ornamental items to Maddie's garden.

Grandma Tessie is here this week for a visit. I bought my flowers Tuesday night and she planted them in my planters yesterday. What a pleasant surprise to come home from work and have all my flowers planted! They are beautiful and I love how flowers just add so much color everywhere. Now if she could only come back every week to water and dead-head.

Grandma is having a wonderful time with Lily! Lily is constantly on the go and into everything, she doesn't rest for a moment. Lily likes to be outside and in the dirt, she takes after her daddy and grandma. I on the other hand would prefer she liked the malls better... :) We've enjoyed having grandma here but her visits are always too short!

Maddie's gravesite is looking lovely as well. The phlox that Steve planted last summer are beautiful, they're pink with white accents. I will be adding a planter soon with more flowers for Maddie to enjoy.

One peculiar thing that happened within the last week or so... One of the angels at Maddie's grave site fell over in the dirt and the LEFT hand broke off at the elbow. Fr. Chris and Michelle happened to be out for their nightly walk and noticed the angle down and when Michelle picked it up to put it upright she noticed the arm had broke off. Could it have been just an accident? Perhaps it's Maddie's way of making the angel just like her. I chose to believe the latter.

Have a great week.

Love,
Steve, Darla and Lily

Sunday, May 9, 2010 7:13 PM CDT

Happy Mother's Day to mothers, grandmothers and godmothers!
I certainly had a special day and I hope you did too.

Steve, Lily and I traveled to Marshfield this weekend to celebrate the day with Grandma Tessie. Grandma sure enjoyed spending time with Lily. Lily is walking now, she's one busy little girl walking from room to room and getting into everything but Steve and I love it!

Lily loves to walk into Maddie's room and blow kisses at her pictures. She smiles and giggles when she does this, it's so cute! She also likes to play in Maddie's room and hide under her bed. Lily can do this because Maddie's bed is higher off the floor so it's the best hidding place...

Have a great week.

Love,
Steve, Darla and Lily

Sunday, April 18, 2010 8:02 PM CDT

Spring is here and we are taking advantage of the wonderful weather we've had. We have been going for walks and a few wagon rides with Lily. She loves to be outside.

After our walks we always take a stroll through Maddie's garden to check out what is popping up. There are lots of green sprouts occuring which is exciting to see and we can't wait unitl it is in bloom. We'll be adding a stone stating "Maddie's Garden" this spring which will add a nice touch to an already beautiful garden.

I've been seeing eagles but not on our way to church. Now I'm seeing them on my way home from work when I am thinking of Maddie. A couple of weeks ago I saw 3 in one day. Two of them were flying together and I saw another one by itself. I tear up when ever I see one and I always tell Maddie how much I miss her and love her. I thank her for being there when I need her most.

Have a great week!

Love,
Steve, Darla & Lily

Sunday, April 4, 2010 8:36 PM CDT

Happy Easter! We had a wonderful Easter celebration with Lily. As many of you know our Orthodox Easter starts at 11:30 PM and goes until 2:00 AM. Lily was a trooper and yes was awake for the whole service and our breakfast afterwards at JoAnn and Neil's house. We got home at 5:00 AM. Lily was taking it all in...

Today we had the Fall family over for lunch. Lily slept until 11:00 and took a 4 hour nap this afternoon after playing outside for awhile with her cousins. It was a great day!

Spring is here and we are looking forward to watching Maddie's garden bloom. We are anxious to see what it looks like early in the season since we planted particular flowers later in the season. It's going to be beautiful!

Have a great week.

Love,
Steve, Darla and Lily

Sunday, March 28, 2010 9:08 PM CDT

We are a week away from Easter! We are excited to share this special religious holiday with Lily. We've been teaching Lily about Jesus and the fact that Maddie is with him in heaven. She smiles when we say both their names!

Steve, Lily and I saw 2 eagles today. The first one was on our way to church, it was soaring over the road and field close to church. We stopped so we could take a photo and to say hi. The second one was on our way home from church. It was sitting in a tree, unfortunately my cell phone was dying so I did not get a good photo. We stopped to watch the eagle for a bit.

Grandma Tessie will be spending some time with us this week. I know she can't wait to see Lily and Lily loves to be showered with kisses by her grandma. We'll have a great time decorating eggs and preparing for Easter.

We're getting excited for warmer weather as well. We can't wait to go for walks, wagon rides and bike rides this spring. Lily loves her wagon rides!

Have a great week!

Sunday, March 14, 2010 7:59 PM CDT

Last weekend Steve, Lily and I met up with some of the Fall family members in the Dells. We had a great time just like we did 2 years ago with Maddie.

We stayed at one of the larger hotels with a water and theme park. Lily had a great time with her cousins in the water. Lily loves the water, she likes to splash and kick her legs. She went swimming with daddy in the big pool and played in the wading pool.

We went to the same restuarant we did with Maddie, it was just as much fun. There is something about eating a great meal wearing a paper moose hat surrounded by friends that makes it more fun! The shopping at the outlet mall was fabulous too! We can't wait to go back next year.

Lily and I went to Marshfield this weekend to visit grandma Tessie. She lovs having Lily there - me too I guess... Lily is starting to take some steps by herself but she didn't perform for grandma and me. Of course when we got home and she saw daddy she did take a few steps for me. It shouldn't be long now before she is walking on her own.

Have a great week!

Love,
Steve, Darla and Lily

Wednesday, March 3, 2010 9:20 PM CST

It is with great sadness that I tell you Madeline has another grandpa in heaven with her. Grandpa Bob (my step-father) passed away peacefully last Friday. Bob went just the way he wanted, at home in his chair. It was much sooner then we anticipated but the fact that he did not suffer is very comforting.

The wake and funeral were lovely. I don't know of anyone else who loved and respected this country more then Bob. He was truly a wonderful person. I will miss his gruff voice, his stories of when he was growing up, the war (WWII)and the updates he loved to share regarding his own grandchildren and great-grandchildren. He will be missed greatly.

This past weekend brought back so many memories of Maddie and how we don't know how long we have with our loved ones. Life is so precious. Make sure you tell the people closest to you how much they mean to you! Don't wait until tomorrow...

Love,
Steve, Darla and Lily

Sunday, February 14, 2010 7:32 PM CST

Happy Valentine�s Day! Happy Birthday to daddy too. It�s been a fun day celebrating both celebrations.

Lily had two wonderful birthday celebrations as well. She received lots of adorable outfits and toys to play with. She�s been a little under the weather but some of that has to do with teething. She is getting 3 more teeth for a total of 9. She can be bit crabby at times and perfectly happy the next.

We are going to the Dell�s in 3 weeks with the Fall family. I think Lily is going to have a great time just as Maddie did. I�m sure Lily will enjoy splashing in the water, she loves her bath time and splashing around. Hopefully, she will leave some water in the pool for the other children! The girl can splash!!!

Have a great week!

Love,
Steve, Darla and Lily

Sunday, January 24, 2010 8:43 PM CST

Steve and Lily were hit with a stomach flu last weekend so they've been recovering this week. It hit Lily pretty hard she is still not quite back to herself yet. She is not eating or drinking a lot. Hopefully she will bounce back this week.

We are heading to Marshfield this weekend to celebrate Lily and her cousin Hanna's birthdays. The party will be a fun time and I'm sure Lily will be spoiled by her aunts. They certainly love to shop for her just as they did for Maddie.

Have a great week!

Love,
Steve, Darla and Lily

Sunday, January 10, 2010 4:45 PM CST

Happy 6th birthday Maddie! She turns 6 years old tomorrow (1/11). We celebrated her birthday today with the Sunday school class and family.

Auntie Brenda made adorable cupcakes for the birthday party(do you think I took of picture of them?). The kids loved them and so did Lily, she was covered in frosting and so was I. I guess Maddie's cupcake was a practice run for Lily's 1 year birthday coming up in a few weeks. Thank you Brenda for making the cupcakes and party so special.

After church several of us went out to Maddie's grave stire to let off the balloons. It was very cold so we didn't take Lily out of the car but we released the balloons and wished Maddie a Happy Birthday!

During Sunday school today Maddie's 9 year old cousin Nadia wrote a prayer to God thanking him for Maddie. It's too precious not to share. Nadia, thank you so much for your beautiful prayer...

Thank you God for Madeline Fall, for making her smile contagious, for putting an angel on earth, and for seeing and spending time with her.

Thank you for watching her grow, for listening to her voice in song and praise, and for seeing her smile.

Thank you for letting us play with her curly hair, for playing with her, and for making Steve and Darla overjoyed.

Thank you for making her special, making her eyes sparkle, and for giving Lily in memory.

Thank you God for her grace and beauty... Amen.

This is my new favorite prayer!

Love,
Steve, Darla and Lily

Sunday, January 3, 2010 7:42 PM CST

Happy New Year! I have no idea where this past year went, it flew by. We of course have been busy with Lily but certainly will never forget our angel Madeline.

Next week Monday is Maddie's 6th birthday. We will celebrate by letting off ballons at her grave site and sharing cupcakes with the Sunday school kids. We had a birthday party for her last year and the kids had a good time.

We hope the new year brings you joy and happiness throughout the year!

Love,
Steve, Darla and Lily

Sunday, December 20, 2009 7:52 PM CST

Today was our Christmas program at church. The kids did a fabulous job saying their lines and performing the skit. I couldn't help but think of Madeline and her role as an angel in '06 & '07. I know I mentioned this before but when I brought Madeline out in '06 in her stroller wearing her angel costume there wasn't a dry eye in the church. I remember that day as if it where yesterday.

Today was an emotional day too. Maddie was only able to participate in two Christmas programs which made me sad but also happy we have those incredible memories. After the program the teachers and students of the Holy Trinity Sunday School class gave Steve, Lily and I a beautiful ornament in Memory of Madeline. Along with the ornament they wrote a wonderful card sharing with us how much Madeline meant to them and everyone who met her. The ornament is now hanging on our tree.

Then Steve and I were pleasantly surprised at how Maddie�s grave site is decorated for the holiday season. Maddie's Uncle Dennis, Aunt Laurie and cousins, Nadia, Eliana and Ava provided the beautiful tree which is absolutely adorable. Maddie's friend Emily provided the festive flowers on the right hand side. If you recall Emily decorates her site according to the season. THANK YOU ALL SO MUCH - we love it!!!!!

To top off the day - when we got home from church I was sitting in the chair with Lily looking out the window. I was reflecting on the day when two or three cardinals flew into the tree I happen to be looking at. Simply amazing!

Yesterday Lily and I went to visit Sister Jane. We had a great time catching up, it's been a very long time since we've seen each other. Lily received a very cute kitty cat from Sr. Jane because she felt bad Lily didn't get the chance to know Thompson. Lily really likes the kitty and of course we named him Thompson too.

Sister Jane gave me some photos of eagles she received from a friend earlier this year. Apparently one day in April near Minocqua, WI eagles came in all at once, there were so many you couldn't count them. I tried to take a photo of the photos to post for you but they got a little blurry. Sr. Jane said Maddie was very busy that day�
We can't wait to go back and visit Sr. Jane real soon! Thank you again for Lily's kitty.

Have a wonderful holiday - Merry Christmas!

Love,
Steve, Darla and Lily

Sunday, December 13, 2009 9:49 PM CST

We celebrated Christmas with my side of the family this weekend. We had a wonderful time and Lily was spoiled by her grandparents, aunts and uncles. She received lots of toys and adorable outfits. Lily played with all the toys when we got home. She is exhausted from all the excitement this weekend.

My sister Denise and I will be shopping for the gifts to donate to Children's Hospital this week. We have a wonderful time picking out all the gifts for the kids and delivering them to the hospital. We know there are so many children who spend Christmas in the hospital with only a couple gifts so hopefully we make their holiday a little brighter. The gifts are donated by my family in Memory of Madeline in lieu of buying gifts for each other. Madeline certainly would want the children to be happy, singing and playing as much as they can.

I continue to see eagles, now I am waiting to see the cardinals... I truly believe Maddie is watching over us and knows when we need her the most.

We hope you have a very Merry Christmas!

Love,
Steve, Darla and Lily

Sunday, December 6, 2009 9:18 PM CST

Well Christmas is right around the corner...

We went to Tony and Brenda's cabin to cut down our tree and spent the afternoon with family and friends. We have fond memories of doing this with Maddie, she always seemed to enjoy being outside around the fire.

As many of you remember two years ago I went on a mission trip to an orphanage in Guatemala with our church. A group went again this year in November and spoke about it at church today. We had many fund raisers at church over the past several months and a special one on Maddie's anniversary. The group presented the money raised at Maddie's memorial brunch to the nun who runs the orphanage. Mother Yvonne told the children at the orphanage that Maddie died. They were sad to hear about Maddie, they remember me telling them about her two years ago. One boy, Miguel, was so moved upon hearing the news he drew a picture for Steve and I. Fr. Chris presented it to us today (photo above). Madeline's picture is now on the bulletin board at their new monastery, the money raised at her memorial will be used to purchase items for the church.

These children are simply amazing... They have all the reason in the world to be sad but they are the happiest children. They open up their hearts and welcome you in. You can't help but get attached to them I certainly did. I still think of the three little girls I became so close to. It was an emotional presentation seeing all those beautiful happy faces!

Have a great week!

Love,
Steve, Darla and Lily

Monday, November 23, 2009 9:48 AM CST

The photos tell the story this week. This occurrence happened twice while Lily and I were on our way to church yesterday. As far as I know there were two different eagles.

I normally hate driving to church this particular Sunday because there are so many hunters in the fields. I am usually more cautious for that reason but in each instance I slowed down even more. The first time I saw the eagle I slowed down while it "playfully" flew around dipping lower and lower each time. Just ahead on the road was a group of hunters off to the side which I didn't notice until I got over the hill.

The second time the eagle was flying just over the road and again getting lower and lower. I pulled over to take photos of it with my cell phone. I sat there for a good 3-5 minutes just watching Maddie and talking to her. When she landed on the hay bale she stared at me as if she was really listening to me. It was simply amazing!

HAPPY THANKSGIVING! We hope you have a wonderful and safe holiday.

Love,
Steve, Darla and Lily

Sunday, November 15, 2009 7:26 PM CST

October has come and gone... It will be a tough month to get through from now on. We received so many kind cards and messages from our wonderful family and friends during this month. We THANK YOU so much.

The holiday season is approaching quickly, this too will be a tough time for us. We miss our little angel so much but we are constantly reminded our precious Madeline is here with us.

A couple of weeks ago I was driving to work, it just happen to be a very foggy morning so traffic was moving pretty slow as I came into St. Paul. I was thinking of Maddie and started to tear up when just at that moment an eagle flew over me, but it was so foggy I couldn't see that it was an eagle at first. The eagle flew very low over a small pond next to the road, the white tail fanning out (no it did not grab a fish, it was just flying over the water where there wasn't any fog). I smiled but lost it in the fog. The eagle flew into a tree next to the road, I saw it again when I drove by. It was as if Maddie was responding to my saddness but due to the weather had to be creative how she was going to let me know she was there. It certainly worked. For the rest of my compute I thought of all the good times we had with Maddie.

Have a great week!

Love,

Steve, Darla and Lily

Sunday, November 1, 2009 6:32 PM CST

Happy Halloween! We had our annual Halloween parade and party yesterday. The parade was cooler and the party had a lot less people in attendance but fun as usual.

Now that Halloween is over it's hard to believe how quickly the holiday season is approaching us. It will be here before we know it. This year will be exciting and interesting to see how Lily reacts to everything but it's also sad knowing Madeline isn't with us.

We miss our little angel so much!

Love,
Steve, Darla and Lily

Sunday, October 18, 2009 6:25 PM CDT

Madeline passed away one year ago today.� We had a beautiful memorial service at church this morning surrounded by family and friends.� Fr. Chris made the service even more special by composing several special hymns honoring Maddie.� Here are just a few verses.�

As eagles gathered to the Body of Christ we celebrate your memory, O Madeline Grace joining with you before the Alter of the Lord For you soar as an eagle before the heavenly Throneand before His Throne we gather on earthtogether singing praises with the angels and saintsO blessed child pray unto God for us.�

Though you suffered in the body, O blessed child Madeline Grace In your body you taught us to worship God in spirit and truthWith the stars of light your right hand glorifies the SaviorAnd your left hand praises Him together with the sunFrom your lips you fashion songs of perfect praiseAnd your hair celebrates the presence of the angels.

After the memorial service we all went out to Maddie's grave site to release balloons in her honor.� My sister Denise spoke first then I thanked everyone for their love and support during the 4-1/2 years Madeline was with us and especially over the past year since she passed away. Steve, Lily and I are so blessed to have such wonderful family and friends.

We released the balloons at the same time and watched them being carried away by the wind.� It was a great way to celebrate Maddie and her life with us. She loved having children around her, today she had everyone around her.�

Steve and I saw an eagle on the way up to church and on our way out to Maddie's grave site there was a young eagle soaring over the field right next to the cemetery.� I definitely felt Maddie with me today.�

It has been a sad day but knowing Maddie is doing everything she couldn't do here makes it easier to cope with our loss. I know she is having fun running, skipping, singing and riding a bike.�

I want to say a special THANK YOU to Fr. Chris for making Maddie's one year memorial so special! I'll cherish the songs forever.

Love,Steve, Darla and Lily�

Sunday, September 27, 2009 11:05 PM CDT

We are getting closer to marking the one year anniversary of Maddie's passing. It is so hard to beleive it's been a year. During this past year we've been busy with our little (okay not so little) bundle of joy, Lily, but not a moment goes by that I don't think of our angel, Madeline. She will always be in my heart and on my mind. Her constant reminders make sure of that...

Grandma Tessie and Aunt Diane were up this weekend to attend the hayride at Tony and Brenda's. We had a great time and enjoyed catching up with lots of friends. A lot of people were sad to hear about Maddie and couldn't believe how much Lily looks like her big sister. I smile when people tell me this, it's the cheeks!

There will be a special one year service at church on October 18th to honor Madeline's passing. I know it will be as precious and moving as her funeral and 40 day service. Fr. Chris has a way of making everything for Madeline so special.

Have a great week!

Love,
Steve, Darla and Lily

Sunday, September 13, 2009 11:10 PM CDT

This week (18th) marks 11 months since Maddie passed away. I honestly can't believe how fast this year has gone. We miss our little angel so much. She is constantly on our minds and in our hearts.

We had a very nice holiday weekend at the cabin with everyone, the weather was wonderful. There were lots of family and friends, we had a great time sitting by the fire and talking. We even stayed up very late two of the nights which we haven't done in a long time.

We also enjoyed our time at the fair with aunt Nessie and uncle Dan. We took Lily on the carousel, she loved being on the horse going around and around. I think she liked it as much as Maddie did.

Now that summer is coming to and end we are gearing up for the fall festivties around the corner. It's our Fall Festival at church next weekend and Tony & Brenda's hayride in two weeks. Maddie always loved the hayride with all the kids around her. Although she didn't participate in any of the games she liked to watch the kids have fun.

Hope your summer was as fun filled as ours.

Have a great week.

Love,
Steve, Darla and Lily

Monday, August 31, 2009 10:08 PM CDT

WOW - Where did this summer go? It's hard to believe Labor Day is next week. Fall is in the air and its fair season.

We have fond memories of taking Madeline to the fair. It was a bit crowded for Maddie and the noises often startled her but she loved to go on the carrousel, she liked the lights and music. We will continue this tradition with Lily. We plan on going to the fair on Thursday with Uncle Dan and Aunt Denise too. It should be fun to see how Lily reacts to it all. I�m sure she will want to get out of the stroller and be carried so she can see everything. She loves to watch people and be a part of it all.

Maddie�s garden is coming along nicely especially this past week with the rain. Of course we have a lot to plant yet but the plants we do have are blooming. I do have to chase a doe with two fawns out of Maddie�s garden almost every morning but I don�t think she minds having them in there. The fawns are usually chasing each other around the hydrangea plants in the back. I would be pretty upset at them if they weren�t so darn cute playing. They usually just stop and look at me when I�m scolding them for being in Maddie�s garden but they don�t leave. So far they haven�t destroyed the plants.

Steve, Lily and I will be heading up to the Fall�s cabin this weekend to be with the family. It should be a fun weekend just hanging out and relaxing. Last year we ended up coming home the first night we were there. Maddie had a major allergic reaction to something in the cabin and couldn�t breathe. We took her out to the car with the air running to try to get her to breathe better but we ended up driving home that night. Maddie was much better by the time we got home around 2:00 AM. We did sleep in the rest of the day.

It�s hard to imagine school starting without Maddie. Even though she had a difficult time at school last year I know she liked being with the kids and doing the activities. It was the start of school last year when we noticed Madeline starting to become more and more tired and sleeping so much. Looking back at videos at this time we see how exhausted and worn out she had become.

This next month is going to be extremely difficult with Maddie�s one year anniversary approaching. Not a moment goes by that I don�t think of her and how much I miss her. She is such a precious angel and I love her so much. Madeline has given me the strength to get through the days, weeks and months since she passed away. This year has gone by so quickly I just can�t believe it.

Love,
Steve, Darla and Lily

Sunday, August 16, 2009 10:14 PM CDT

We had a wonderful time on vacation this past week. Deb and Larry arrived safely last Sunday. We enjoyed a few days in Hudson before we traveled to Marshfield to spend time with my side of the family.

We had a fabulous joy ride on a pontoon on Thursday. I don't think we were on the lake more then 15 minutes before we saw the first of many eagles. I tried to take some photos of them but it was such a bright beautiful day it was difficult to focus when they were flying around.

Steve and I attended a wedding on the Fall side on Saturday while my side attended a family reunion with Lily. Yes, Lily stayed behind with grandma & grandpa her aunts & uncles and cousins. I was sad to leave her behind but knew I was leaving her in very capable hands. I made buttons of Maddie for my family to wear at the reunion. It is one of my favorite photos of Maddie and wanted her to be remembered as well.

I received hourly updates and numerous photos of Lily starting shortly after we left on Friday until Deb and Larry dropped her off this afternoon. I missed her dearly but was very happy to hear how well she did with everyone.

Tuesday marks the ten month anniversary of Maddie's death. She is certainly providing us with plenty of signs she is always with us. Not just the eagles but I've seen cardinals in our back yard as well. Shortly after Steve and I left on Friday a cardinal showed up in my mom's yard. I think Maddie was just letting everyone know she too was looking after Lily.

We owe a special THANK YOU to my mom, Debbie & Larry, Diane & Jim, Denise & Dan and Keith & Kris for taking such great care of Lily this past weekend. We can't thank you enough.

Have a great week.

Love,
Steve, Darla and Lily

Sunday, August 2, 2009 10:49 PM CDT

It's hard to believe it's August already. Where did the summer go? We are very excited to have Deb and Larry visit us from Seattle the week of 8/10. We are taking a week vacation that week but we'll miss our family reunion on my mom's side due to a wedding on the Fall side.

Our last Lindner family reunion was '07. Maddie was a trooper the whole day. I actually forgot a key piece to Maddie's feeding pump at home and didn't realize it until we got to Marshfield Friday night before the reunion. I ended up calling a medical supply company to rent a different feeing pump. I met one of the employees at the office after 11:00 that night to pick it up. I thanked her over and over again for helping me out, she had to drive over 30 miles to get to the office. Let's just say I never forgot the charger again.

We saw a mature eagle and young eagle this past Saturday, they were flying pretty close to Steve, Lily and I. Madeline continues to be with us as we go on with our lives. Not a moment passes that I don't think of her, her signs let us know she is constantly watching over us.

Have a great week.

Love,
Steve, Darla and Lily

Sunday, July 19, 2009 9:04 PM CDT

Yesterday (18th) marked the nine month anniversary of Madeline's passing.

I was driving to church yesterday with Lily to pick up Steve for a family reunion on Steve's moms side. I happen to be thinking of Maddie and the Saturday in October she passed away. I was having a moment, just then I looked to the right side of the road. There was an eagle soaring over a field right next to the road. There was Maddie letting me know she was with us. As sad as I am not having her physically with me, I know she is always with me.

This past week I was holding Lily after I fed her. I was once again thinking of Madeline as I constantly do. A cardinal flew in a tree and sat on a branch in the back yard. I just smiled and thanked Maddie for visiting us.

We can't believe Madeline has been gone for 9 months. We haven't changed a thing in her room since she passed away. I have the photos from her wake and funeral on her bed. We still put her night light on and I say my prayers next to her bed every night. I kiss her photos and say good morning to her before I leave the house for the day. I've been doing this since we lost her.

Lily likes to spend time on Maddie's bed. Steve and I take her in Maddie's room to look at the pictures and talk about her big sister. She usually reaches for the pictures as she jabbers and smiles. We know Maddie likes this too.

Have a great week!

Love,
Steve, Darla and Lily

Sunday, July 5, 2009 5:06 PM CDT

Happy 4th of July! I hope it was a fun and safe one for you and your family.

We went to the Fall's cabin yesterday and stayed the night. We were hoping to go up Madeline Island this year but with the holiday falling on a Saurday traffic would have been horrible getting back today. Hopefully we will make it next year.

We have such wonderful memories of spending 5 days on Madeline Island with Maddie last 4th of July. She did wonderful for being away from her routine and off her schedule a bit. She loved being at the beach the two days we went, we was so happy to be with everyone.

Have a great week.

Love,
Steve, Darla and Lily.

Sunday, June 21, 2009 7:54 PM CDT

Happy Father's Day to all the dads, grandfathers and god-fathers out there. We had a wonderful day celebrating with daddy.

We went to church then to lunch with Steve's parents. We saw an eagle on our way to the restaurant so we pulled over to take a picture. We said hi to Maddie and thanked her for letting us know she was with us. I know it doesn't look like one in the photo but it is a bald eagle sitting in a dead tree in a field.

On our way home we stopped at a garden sale to get more flowers for Maddie's garden. Her garden is coming along nicely but we have a ways to go before we have all the trees, shrubs and flowers designed to go in it. We are picking up flowers here and there when we are out and about.

Have a great week.

Love,
Steve, Darla and Lily

Sunday, June 14, 2009 11:13 PM CDT

This Thursday (6/18) marks the 8th month anniversary of Maddie's passing. We miss her so much.

This weekend was a special one for us. We celebrated Walter and Sharon's (Steve's parents) 50th wedding anniversary on Saturday with a party in Clear Lake. It was a beautiful day and we had a great time. Today they had a blessing after the service to mark this special milestone in life. It was a wonderful day as well.

After church I went out to visit Maddie's grave. Melissa, Emily's (Maddie's best friend)mom, told me they put flowers at Maddie's grave. She told me Emily painted a scene of Maddie and Emily fishing in a boat. Melissa said Emily told her about the picture she painted. She painted Maddie catching a big fish and herself as only having a worm on her line. Emily told her mom, Maddie is really good at fishing, she likes to fish.

This brought tears to my eyes listening to the story. Grandpa Porky, loved to fish. I can just see Maddie and her grandpa sitting in a boat fishing having a wonderful time together. I'm sure they are catching lots of fish too.

Have a great week.

Love,
Steve, Darla and Lily

Sunday, May 31, 2009 8:25 PM CDT

We planted Maddie's tree from my co-workers on Friday. We had a wonderful time, the afternoon was great. Maddie's tree looks beautiful and it's the focal point of her garden.

Steve and I bought a few other plants to plant in her garden but it will take awhile to fill it in. We will add several more plants through out the summer. I am also adding whimsical garden decorations to add character too. Maddie's garden is coming together nicely.

Steve, Lily and I want to thank everyone from Fluid who joined us on Friday, you made the tree planting ceremony so special. We will remember this day for many years as we watch her tree grow.

Love,
Steve, Darla & Lily

Sunday, May 17, 2009 4:30 PM CDT

Maddie will be gone 7 months tomorrow (5/18). Maddie's headstone was placed this week Tuesday. Steve, Lily and I saw it Monday night. When I walked into the room I had a big smile on my face with tears streaming down at the same time. I couldn't believe how beautiful it was, it's exactly how we wanted it to look.

The verse on Maddie's handprints says "You are my sunshine...". The company we went through had someone etch the words to look like a child wrote it, it looks adorable.

As many of you know, you are my sunshine was Maddie's favorite song. I sang it to her all the time especially when she was in the hospital. I would rock with her patting her little butt. After Maddie had her barium episode at Gillette, they transferred her to Fairview University to be closer to her surgeons in '05, the entire nursing staff sang that song as the transport team wheeled her to the ambulance. It was an amazing scene led by one of my favorite nurses off all time � Ruth aka Sarge (or at least that's what Denise and I called her).

Yesterday Steve was up at church mowing the lawn with his dad and brother. Steve said he saw an eagle over the cemetery, I think Maddie was letting him know how much she likes her monument. We hope everyone who visits Maddie's site will smile through the tears when you see it.

Love,
Steve, Darla and Lily

Sunday, May 10, 2009 6:42 PM CDT

Happy Mother's Day to all the mothers, grandmothers and godmothers out there. We celebrated Mother's Day with my side of the family. Today was a wonderful day with Lily and my family but I miss Madeline so much.

Madeline's monument is going to be placed at her grave site on Tuesday. The gentleman I have been working with called us on Saturday to let us know when it would be done. He asked me if a marker or something was on her site so they would know it was Maddie's. I told him they juste needed to look for the site with the beautiful flowers, sun shine garden stake, easter eggs and whatever else was placed this weekend. Maddie does get lots of presents left for her.

We are filling Maddie's garden with shrubs and a couple of trees right now. Steve and I need to get the perennials as well. Last fall my co-workers gave us a certificate for a tree to plant in Maddie's garden. Along with the gift my co-workers wanted to make the planting of the tree a special event. We will be planting the tree the end of May with my co-workers joining us for the afternoon. It will be a very special time for us.

Have a great week.

Love,
Steve, Darla & Lily

Sunday, May 10, 2009 6:42 PM CDT

Happy Mother's Day to all the mothers, grandmothers and godmothers out there. We celebrated Mother's Day with my side of the family. Today was a wonderful day with Lily and my family but I miss Madeline so much.

Madeline's monument is going to be placed at her grave site on Tuesday. The gentleman I have been working with called us on Saturday to let us know when it would be done. He asked me if a marker or something was on her site so they would know it was Maddie's. I told him they juste needed to look for the site with the beautiful flowers, sun shine garden stake, easter eggs and whatever else was placed this weekend. Maddie does get lots of presents left for her.

We are filling Maddie's garden with shrubs and a couple of trees right now. Steve and I need to get the perennials as well. Last fall my co-workers gave us a certificate for a tree to plant in Maddie's garden. Along with the gift my co-workers wanted to make the planting of the tree a special event. We will be planting the tree the end of May with my co-workers joining us for the afternoon. It will be a very special day for us.

Have a great week.

Love,
Steve, Darla & Lily

Sunday, May 3, 2009 12:22 AM CDT

Lily is 3 months old today. We can't beleive how fast time is going by. Maddie will be gone 7 months in 2 weeks, it doesn't seem possible.

We picked out Maddie's monument to be placed at her grave site over a month ago. It will be completed by the end of this month or so they say. We went through a couple of changes but know we ended up with the perfect one for Miss Madeline.

I'm sure you have noticed the flowers in the few photos of Maddie's gave site I have posted. The flowers are done by Maddie's best friend, Emily, from church. Emily is 5 years old too and told her mom she wanted to leave flowers for Maddie in heaven. Emily and her mom make the arrangements for the different seasons. Emily paints the pots as well with fitting decorations for the season. This months happens to be spring flowers, eggs and of course a Easter bunny. Emily really misses Maddie too.

A couple of years ago we met with a landscape specialist regarding doing a layout for our yard and to come up with a design we wanted for Maddie's garden. Well it's been 2 years and we haven't finished Maddie's garden. We will finish it this year so we can begin to enjoy all the beautiful flowers in her beautiful garden. Maddie's tree is not in her garden but will be a focal point in our yard as well. We have lots of work to do...

Have a great week!

Love,
Steve, Darla and Lily

Sunday, April 19, 2009 1:31 PM CDT

Yesterday marked the 6th month of Madeline's death. It was also Holy Saturday for us. Steve, Lily and I released a pink balloon at Maddie's grave site in the morning. We miss her so much!

Maddie only made it to one of our Easter services in her short life. The other years she was either sick so we didn't take her or she was in the hospital. We are thankful she made it to one, our Easter service is absolutely beautiful.

Lily slept most of the Easter service but woke up a few times when Fr. Chris shouts "Christ is Risen" and we respond with the same enthusiasm. Steve ended up taking Lily downstairs so she could remain sleeping. Lily has been sleeping through the night most of this week, we want to keep her on schedule.

We can't help but wonder how Maddie would have been around Lily. Lily is becoming more vocal, Maddie loved to make noises and have you respond back to her. Steve and I believe they would have been chatting all day long.

Have a great week!

Love,
Steve, Darla and Lily

Sunday, April 5, 2009 6:39 PM CDT

Lily is 2 months old already. She is growing like a weed and is developing a personality too. She smiles, coos and likes to suck on her fists. She still hates tummy time!

I've been sick with strep this past week so Lily and I have not done anything this week. In fact Grandma and Grandpa Fall came over two days to take care of Lily while I was at the clinic two different days. The medication I received the first time I went made me so sick Steve had to take me back the 2nd day to get something else which is working - I feel tons better.

We went to church today but I didn't see any eagles. Of course it was rather difficult to see them with the snow. Although I didn't my sign from Maddie the trees were beautiful with the coating of snow.

We will be traveling to Marshfield this coming weekend to spend Easter with Grandma Tessie and Grandpa Bob. Our Orthodox Easter is the following weekend which we will spend with the Fall family. My mom continues to recover from her bypass surgery and is feeling great. I knwo she is anxious to see Lily again and of course Steve and I too.

Have a great Easter and safe travels!

Love,
Steve, Darla and Lily

Monday, March 23, 2009 12:24 AM CDT

Maddie's little sister Lily was baptized yesterday. Maddie made her presence known by sending us her usual sign -eagles. Steve and I saw two eagles on our way to church they were sitting in trees by the road.

The baptismal service was beautiful and Lily did great! After church when everyone had left a few family members went to Maddie's grave site to visit her. When Steve and I were leaving the church parking lot an eagle was soaring over the church and cemetery. Steve and I smiled and thanked Maddie for being with us on Lily's special day.

Grandma Tessie is recovery very well, she went home from the hospital yesterday. We missed her at the baptism but we will be traveling to Marshfield soon to see her and show her the video of the baptism. Our little angel was certainly watching over her grandma this week!

Love,
Steve, Darla and Lily

Sunday, March 15, 2009 9:45 PM CDT

UPDATE: 3/18 - The doctor moved up my mom's surgery from Wednesday to Tuesday. Grandma's double bypass surgery went very well and she is doing great. I was able to talk to her before I headed back home. She was alert and talking away just like she does. We pray she has a speedy recovery.

This week Wednesday (3/18) marks the 5th month Maddie has been gone.

We unfortunately received some bad news about Grandma Tessie early Saturday morning. She was admitted in the hospital with chest pains. Steve, Lily and I went to my hometown, Marshfield WI, Saturday afternoon to see her. The surgeon decided not to do the bypass surgery this weekend and will do it on Wednesday.

Needless to say I said lots of prayers to Madeline to watch over her grandma. During our 2.5 hr. drive yesterday to Marshfield I saw 6 eagles soaring close to us on the highway. When we were at the hospital I had to excuse myself from my moms room to pump. I asked a nurse if there was a quite place to do this she took me to a conference/break room. When I pulled up a chair to the counter to start pumping a lady bug flew onto the counter right next to me. It stayed there the whole time I was there. I smiled and thanked Maddie for being there with me and her grandma.

I will be going back home to be with my mom for her surgery, I know Maddie will be right there with us.

Love,
Steve, Darla and Lily

Sunday, March 1, 2009 6:25 PM CST

Steve and I are settling into a routine with Lily. She will be a month old on Tuesday - where did the month go? Lily is over 9 lbs. now.

Both Steve and I catch ourselves calling Lily, Maddie. I used to sing to Maddie all the time. I made up songs using her name. She loved to hear her name. I find myself singing those songs to Lily but I have to remember to say Lily - Maddie just comes out so naturally.

It's been difficult to respond to people who ask if Lily is my first child. I always say no, my second, she has an older sister named Madeline. Most people comment on how they bet Madeline loves her little sister and loves to help out. I smile and agree with them. I have had to tell some people that Madeline is watching over and taking care of Lily from heaven. When I tell them about Maddie they too agree she is watching over us.

Love,
Steve, Darla & Lily

Wednesday, February 18, 2009 7:45 PM CST

Maddie has been gone for four months today. Not a day goes by that I don't think about her and how much I miss her. As Sister Jane wrote in her entry last week, I just have to say Madeline's name and she is there...

Our life with Lily has just begun and I'm already telling Lily about her big sister Maddie and how she is watching over her. Sometimes when I'm holding Lily her eyes get real big and she appears to be looking over my shoulder at someone. It's hard to explain but I can't help but wonder if Maddie is right there with her.

Have a great week.

Love,
Steve, Darla and Lily

Wednesday, February 18, 2009 7:45 PM CST

Sunday, February 8, 2009 1:00 PM CST

Madeline's little sister arrived!!!!

Lily Ann Fall arrived on 2/3/09 @ 11:37 AM weighing in at 7 lbs. 4-3/4 oz., 20-1/2" long. Lily was very anxious to make her grand entrance into the world on Tuesday. She was born a half hour after they broke my water, even before the epidural took effect - ouch!

We are all doing great! We are home just enjoying our precious new bundle of joy. We couldn't have asked for a better birth (well maybe having the epidural would have been better) and knowing Lily is doing so well we are so very blessed.

I had photos of Maddie with us in the birth room so I could focus on her to keep me calm. Everything happened so quickly I definitely wasn't calm but at least it was fast. I believe Maddie was watching over us during it all.

We were discharged from the hospital on Thursday. During the ride home I said a little prayer and asked Maddie to show me a sign she was with us. When we drove over the bridge into Hudson I saw two eagles sitting in a tree...

Thank you for the cards and gifts we have received from family and friends. We know a lot of people were thinking and praying for us on Tuesday, we appreciate all the love and support.

I won't be putting many photos of Lily on Maddie's web page going forward - it is after all for Madeline. Our precious angel is watching over the three of us now.

Love,
Steve, Darla and Lily

Sunday, February 1, 2009 8:38 PM CST

Well no Lily yet... We are scheduled to be induced on Tuesday (2/3). My due date isn't until 2/7 but I really want my doctor to deliver Lily so we scheduled to be induced on Tuesday when she is on call at the hospital.

Madeline has been making her presence known even though we haven't been to church the past two weeks. We are not traveling more then an hour from the hospital at this point. This past Monday I asked Maddie for a sign such as a cardinal. About fifteen minutes later two cardinals flew by the window. On Wednesday I asked Maddie for another sign. Not even five minutes later a cardinal flew into a tree that was in front of the window I was looking out. I just smiled and thanked Maddie for being here with us.

I'm taking a couple of photos of Maddie to the hospital with me. Looking at photos of her always makes me happy and calm. I'm hoping to maintain this feeling during labor and delivery - photos and of course an epidural.

Please keep us in your thoughts and prayers this week with the birth of Lily.

Love,
Steve and Darla

Sunday, January 25, 2009 6:22 PM CST

Sorry about the photos the last couple of weeks. The photos were distorted due to the camera resolution being set too high. All the photos I will be using from now on should be normal size.

Friday was my last day at work, I'm now on maternity leave. Even though Lily is not due until 2/7 it was getting extremely difficult to move around by the afternoon. Lily likes to settle down low which causes a lot of pressure on my back making the commute home a real treat - NOT!

I have a doctors appointment on Tuesday, we will talk about inducing possibly next week. Due to all the added pressure I'm so uncomfortable in the evenings. I can't sleep more then 20 minutes and I have to roll over and so on. Lily is apparently very content just hanging out getting chubbier by the day.

Hopefully we won't have to wait much longer.

Love,
Steve and Darla

Sunday, January 18, 2009 6:22 PM CST

Today marks the three month anniversary of Maddie's passing. We miss our little angel tremendously. We take comfort in knowing she is very much around us and watching over us.

Steve and I are patiently waiting for Madeline's little sister, Lily to arrive. We have about three weeks to go before her due date but nobody seems to think she will wait that long. I am having contractions but nothing serious yet. We know Lily will arrive when she is good and ready.

In light of Lily's pending birth I thought I would share some pictures of Maddie when she was just one day old. I remember how happy we were to welcome Miss Madeline into our lives...

Love,
Steve & Darla

Sunday, January 18, 2009 6:22 PM CST

Sunday, January 11, 2009 4:39 PM CST

Happy Birthday Madeline! Madeline would have been 5 today. Maddie certainly showed us signs she was with us on her birthday.

When we arrived at church Laurie and Dennis told us an eagle was sitting in a tree just on the other side of church. Steve and I drove down the road when the eagle flew just next to the car. I put the window down and we said "Happy Birthday Maddie" out the window. The eagle was so close we couldn't believe it.

We brought cup cakes for Sunday School. We sang Happy Birthday to Maddie and then "Memory Eternal". The Sunday school students said Maddie was having a birthday party in heaven and it's probably a big one...

After coffee hour and when everyone left church Sharon, Walter, Steve and I went out to Maddie's grave site to release five balloons for her birthday. We sang Happy Birthday one more time then let go of the balloons. They took off soaring high into the sky up to heaven to Maddie.

On a our way to to the restaurant for lunch I saw an eagle take off out of a tree and start flying over a field. The eagle was flying parallel with the car (in the field) then turned and went righ over us. Steve and I smiled and said how amazing her signs are.

I thought I would share a poem with you that was enclosed in a gift we received from my aunt and uncle after Maddie passed away. This is has become one of my favorite poems...

When God Calls Little Children ~

When God calls little children to dwell with Him above,

We mortals sometimes question the wisdom of His love.

For no heartache compares with the death of one small child

Who does so much to make our world seem wonderful & mild.

Perhaps God tires of calling the aged to His fold,

So He picks a little rosebud before it can grow old.

God knows how much we need them, so He takes but a few

To make the land of heaven more beautiful to view.

Believing this is difficult, still, somehow we must try,

The saddest word mankind knows will always be �goodbye.�

So when a little child departs, we who are left behind

Must realize God loves children� Angels are hard to find.

Love,
Steve and Darla

Sunday, January 4, 2009 5:56 PM CST

The holidays were hard this year but knowing Madeline celebrated them in heaven made our sadness a little more bearable. We saw eagles and lady bugs throughout the season. In fact just today on our way home from church we saw three eagles, two together in a tree (Maddie and Grandpa Porky) and one soaring over us on 94 close to our house. Every time we see one we say "Hi Maddie" and smile.

A week from today is Maddie's birthday (1/11), she would have been 5. It's so hard to believe, where did the time go? It seems like just yesterday she was born and we were starting our life with our beautiful baby girl Madeline Grace. We definitely had our moments of ups and downs with Miss Madeline but she was such a fighter until the end when she was just too tired to fight anymore. We couldn't have been more proud and honored to be Maddie's parents.

Steve and I are very excited and anxious for the birth of our second daughter, Lily. According to our schedule Lily will arrive 5 weeks from now. We're due on February 7th but Lily is very crowded and I believe ready to kick her way out sooner then later. She certainly has been doing a number on me this past weekend...

Love,
Steve & Darla

Sunday, December 21, 2008 8:35 PM CST

We celebrated Christmas with the Merkel side of the family this weekend. This holiday season is so different without Maddie. We did go outside yesterday afternoon to sing around Maddie's tree. Some of us even went sleding down the driveway. It was a beautiful snowy afternoon.

This morning we were supposed to go to our church service and attend our Sunday School Christmas program afterwards. However, due to the frigid weather we stayed home with my family, we didn't want to take any chances of a car breaking down or getting into an accident.

At one point this morning my sister Diane walked by the front door and noticed a cardinal sitting on the front porch looking in the house. We went up to the door slowly so we would not frighten the bird but it did fly to another tree in the front. We all said it was Maddie joining us since we couldn't make it to church this morning. We actually saw several cardinals after the one in front in our backyard. I know it's another sign...

We wish you all a very Merry Christmas and a Happy New Year!

Love,
Steve & Darla

Sunday, December 14, 2008 4:46 PM CST

This week Thursday marks the two month anniversary of Maddie's passing. We are coping and adjusting to our life without Maddie. We miss her so much but the signs we see of her presence comfort us.

Steve and I decorated the Christmas tree yesterday, Steve also decorated the outside with lights. We received a pine tree for one of Maddie's funeral arrangements from Steve's Aunt and Uncle and their families. We planted it and call it "Maddie's tree". Steve put white lights on it yesterday. Although her tree is dwarfed by all the other trees in our yard, it is the most beautiful tree. It is so adorable with the lights and the ribbons on it.

Steve and I are preparing for Lily to come into our lives in 8 short weeks. Lily's room is ready, now we just have to make sure we're prepared to adjust our lives again...

Love,
Steve and Darla

Sunday, December 7, 2008 7:30 PM CST

We had a special service at church today for Madeline. In the Orthodox regelion we say prayers 40 days after someone passes. It was an extremely moving prayer service, similar to Maddie's funeral. Fr. Chris said so many amazing things about Maddie and even though she was only with us for a short time she made a difference. We all miss her so much.

The holiday season is upon us. Please remember if you have a little extra to give this year, please give to a Children's charity. The charities near and dear to our heart are Children's Hospital/St. Paul and Special Childrens Center/Hudson. Hopefully you can make a difference for someone...

Love,
Steve and Darla

Sunday, November 30, 2008 7:22 PM CST

Maddie's been gone for 6 weeks. We miss our little angel so much. We cherish our memeories of Madeline. This holiday season will be difficult but we know Maddie continues to be with us.

We had a very nice Thanksgiving with Dan and Denise, mom and Bob. Denise and Dan brought all the food and prepared it. Just as we sat down to eat and toast Madeline's life a little lady bug flew on one of the windows by the table. As you know Maddie has been letting her presence known through signs such as eagles. What I didn't mention was I've also seen lady bugs. I used to call Maddie my little love bug when she was a baby. The lady bug hung out by the window all day Thursday. We gave Thanks for yet another sign Madie is with us.
Thank you again Dan and Denise for a wonderful meal and day!

Steve and I will be heading to Tony and Brenda's cabin on Saturday to cut down our Christmas tree. We have fond memories of this particular weekend with Maddie. Tony always made sure she had a cozy place to sit when we sat around the fire. The last couple years Maddie and I spent more time in the cabin than by the fire due to it cold temperature outside. It would be too cold to feed her, her pump would freeze up.

Thank you for your continued love and support.

Love,
Steve and Darla

Sunday, November 16, 2008 5:38 PM CST

Maddie will be gone a month on Tuesday. We miss her so much but smile when we talk about our little angel being in heaven.

I had a dream this past week of Maddie. Maddie was riding a bike, smiling at me and giggling. Her eyes were bright blue and her hair was curly like when she was around 3. She was absolutely radiant. She fell off her bike but got back on and rode away. I asked her to come back but she just turned around, looked at me and smiled her big smile and continued pedaling. When I looked down at the ground, saddened at the fact that she was gone, I noticed a cigarette that was partly distinguished but still had a little smoke coming from it. Grandpa Porky used to smoke I guess that was my sign he is definitely with her teaching her to ride a bike.

Another sign I continue to witness she is around are eagles. I see them every week on our way up to church. Fr. Chris told us an eagle appeared the day Maddie past away and stayed for 5 days which was the day of Maddie�s funeral. I smile and thank her for letting me know she is finally free�

I thought I would enclose the letter Steve and wrote to Maddie which Fr. Chris read at Maddie�s funeral. The gospel today talked about suffering and how it eventually ends, Maddie�s suffering ended but ours has only begun. We know with time it will get better but that time can�t come soon enough�

Our Precious Madeline

You came into our lives and quickly became our little angel. We loved you so much the second we met you. We know you had many challenges to overcome, but you always faced them with your incredible strength. Although you were such a little peanut you had the willpower of the world. Your angels watched over you, but you too were our angel watching over us.

We know you are in a better place and free from seizures, medications, constant feedings and your routine. Now you are able to run around, play, sing and skip with Grandpa Porky. He was a wonderful father. We know he will be a fabulous Grandpa to you. He will take care of you now until we join you in the Kingdom of Heaven.

Our lives will never be the same without you. You left us so soon. We take comfort in knowing that you are where you belong. We are so sad you will not be with us any longer and we won�t be taking care of you anymore, especially our bedtime march. You were such an inspiration to us and everyone who knew your story. We don�t know how you chose us to be your parents, but we are so thankful you did. It was an honor being your parents and we couldn�t have been more proud of you. We treasured the moments we had with you. You will be missed terribly and you will never be forgotten!

We love you, sunshine

May your memory be eternal!

Mommy and Daddy

Monday, November 10, 2008 8:18 PM CST

Steve and I are truly blessed to have wonderful family and friends who have supported us during this difficult time. We appreciate your kind and thoughful words about our little angel.

We have so many wonderful memories of Maddie and turn to them when we have our moments. Steve and I are doing okay but we miss Madeline so much. Our house is very quiet and our routine is gone, this of course will change in 2-1/2 months when Maddie's little sister is born. Lily will grow up knowing who her big sister is.

Thank you again for your love and prayers.

Love,
Steve & Darla

Monday, November 10, 2008 8:18 PM CST

Steve and I are truly blessed to have wonderful family and friends who have supported us during this difficult time. We appreciate your kind and thoughful words about our little angel.�

We have so many wonderful memories of Maddie and turn to them when we have our moments.� Steve and I are doing okay but we miss Madeline so much.� Our house is very quiet and our routine is gone, this of course will change in 2-1/2 months when Maddie's little sister is born.� Lily will grow up knowing who her big sister is.�

Thank you again for your love and prayers.

Love,Steve & Darla

Sunday, November 2, 2008 8:00 PM CST

It's been two weeks since Maddie's passing. We continue to receive wonderful cards from so many people.

We are establishing the following Memorials in Maddie's honor;

-United Mitochondrial Disease Foundation

-Special Children's Center - Hudson, WI

-Our church's Sunday school fund and Disabilities Renovation project.

We will be donating the money we receive to these three charities accordingly.

We miss our little angel so much!

Love,
Steve and Darla

Sunday, October 26, 2008 7:33 PM CDT

We are so blessed to have such wonderful family and friends during this difficult time. Steve and I are overwhelmed with everyone's love and support. We have received so many beautiful cards with wonderful notes of encouragement enclosed. We also received many gorgeous floral arrangements from family, friends and co-workers. We can not THANK YOU enough!

Maddie's wake and funeral were beautiful. The service was incredible, our little country church was full. We know it was a haul for a lot of you to make. You have no idea how much we appreciate the fact that you did make the drive. Your presence made the day that more special to celebrate Maddie's life.

We are working on setting up a couple Memorials in Maddie's honor. We will post the information once we work out the details.

I plan to continue to update Maddie's web page with our favorite photos of Maddie. We have thousands of photos to share but I will probably not update it every Sunday as you have become accustomed to.

We miss our little angel so much but knowing she is in heaven doing everything she couldn't do here makes it a little easier. Steve and I smile when we think about her singing, dancing and eating all the crunch cones she possibly can...

Thank you again for your continued love and support.

Love,
Steve and Darla

Sunday, October 19, 2008 6:16 PM CDT

Our little angel is with her maker...

Madeline passed away yesterday morning in her bed. She had a bad cold but I think she was just tired and worn out from her disease to fight any more. We think she knew it was the right time for her to go.

We miss her terribly and can't beleive she is gone but we know she is in a better place. She is finally free from medication, therapy, seizures and yes, school. She is in heaven with her Grandpa Porky, holding his hand and skipping along.

We want to THANK YOU all for your prayers, love and support through the past 4-1/2 years. We know Madeline touched all of you in one way or another. She certainly made Steve and I better people and we were so proud to be her parents. She was one special little angel that will never be forgotten.

The wake will be held at Scheuermann-Hammer Funeral Home, 342 Fifth Street, Clear Lake, WI (715) 263-2125 on Tuesday 10/21 from 4:00 - 8:00 PM, with a prayer service at 7:00 PM.

Madeline's funeral will be at Holy Trinity Orthodox Church, 523 1st Street, Clayton, WI (715)948-2203 on Wednesday 10/22 at 11:00 AM.

Love,
Steve and Darla

Sunday, October 12, 2008 4:49 PM CDT

Maddie didn't have school this past Friday she was awake the whole day, she didn't even take a nap. She slept Monday, Tuesday and Wednesday at school and most of the day when she got home. Steve and I are meeting with her teacher and the district manager in two weeks to discuss our options for Maddie. I'm also making an appointment with Maddie's doctor to see if something else is going on with her.

Since Maddie is sleeping so much during the day she is starting to wake up earlier at night. Last night she was awake around 2:00 AM when Steve went in to give Maddie her meds she was cooing and chattering. She continued to do this the rest of the night. I guess I shouldn't complain since she isn't crying, she's just jabbering away in her room. I went to check on her around 4:00 AM since she hadn't fallen asleep. As soon as she saw me and heard me she started jabbering louder. I guess she was so excited to go to church she couldn't sleep. Of course when we got to church she started to doze off. She slept through most of the service, Sunday school and a Mother Daughter gathering we had after church. Hopefully she will get her days and nights back on track soon.

We're also hoping Auntie Diane is on the road to recovery soon. Diane has been in the hospital for a week, we hope you get better day by the day and get to go home soon. You are in our prayers.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, October 5, 2008 7:29 PM CDT

Same stuff different week...

Maddie continues to be sleepy, Steve and I will be meeting with Maddie's teacher and the reprentative of the district to discuss our options of what we can do. We're not sure if switching to the afternoon class will help or not. We should be having this meeting soon.

Madeline did not go in the pool yesterday for therapy. Instead the therapist worked with her on the equipment which seemed to help keep her engaged. She bounced on the ball and did a lot of stretching to try to open up her ribs. Maddie has been a little congested this week and the therapist said she was tight in her chest area. The work she did seemed to have helped a little. She also put Maddie under a infrared dome thing that is supposed to penetrate problem areas and help release tension. Maddie's therapist was hopeing it would help open up her sinuses.

Steve and I got to enjoy an evening out last night. We had a wedding reception to go to so Aunt Neesie watched Maddie for us. We had a great time catching up with friends we haven't seen for awhile. I laughed so hard all night I think the baby was getting a little mad at me for being so loud. Towards the end I was feeling some pretty strong kicks...

Thanks again Denise for watching Maddie- We really do appreciate it.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, September 28, 2008 6:18 PM CDT

Maddie's going to have a little sister...

As you know I had an ultra sound last Monday but the tech couldn't really tell what the baby was but she did detect an issue with one of the baby's kidneys. I had a level 2 follow up ultra sound on Friday with a different doctor. She agreed with my doctor that although the kidney is enlarged there is nothing to be concerned about. The doctor also mentioned the baby is doing great and growing perfectly. We are relieved to hear the kidney situation is not alarming and is very common. I will have many more ultra sounds to follow the progress of the baby. We believe Maddie is very excited about having a baby sister but she doesn't seem to really want to talk about it...

Maddie continues to be extremely sleepy at school. She is fine at home and on the bus but when she gets to school she either falls asleep or shuts her eyes most of the time. We think this is her way of shutting down due to the noise and too much activity around her. I left a voice mail for her teacher to discuss our options of what we can do but we just haven't connected yet. We were hoping she would get used to her new schedule but she doesn't appear to be doing that. Hopefully, we can work something out and Maddie will be enjoying school again soon.

We had a great time with grandma Tessie for a couple of days. Grandma went with us to Maddie's therapy session on Saturday. Maddie wasn't really reacting to much the therapist was doing with her so daddy got in the pool to help out. Maddie was a little more responsive but not like her usual self. Next week the therapist will spend some time in the pool and the balance of her time on the therapy equipment. She should react a little more to the other equipment.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, September 21, 2008 7:50 PM CDT

Maddie's had a pretty easy week. She didn't go to school last Monday because she was having trouble with her tummy. She did go Tuesday but ended up coming home early due to a huge blow-out at school. She spent most of the morning in the nurses office with three women trying to clean her up. Steve had to pick up Maddie and Heidi and take them home. Wednesday Lacey was sick so they didn't go. She doesn't have class on Thursdays. Friday she was awake for a little bit then zonked out the rest of the time.

Maddie had her first Saturday therapy session yesterday. Maddie had a new therapist who has never worked with her before. She said Maddie was loosening up nicely once she was in the water. Unfortunately Maddie didn't kick or splash or do much of anyting but take it all in. She was awake the whole time, hopefully she will do better this coming Saturday. I told the therapist Maddie loves music and asked if I could bring some of her cd's to see if she responds to the music and uses her legs more.

We had our Fall Festival at church today. Maddie did great, she was happy and content the whole time. The weather was perfect, we enjoyed sitting outside talking to family and friends. Maddie even got to spend some of her money from Grandma and Grandpa Fall at the fish pond. She got a book and some lip gloss - just what a girl needs.

I have my 20 week ultrasound tomorrow. Steve and I are hoping to find out what our next little peanut will be. If all goes well and we can determine what the sex is I will update Maddie's web page tomorrow after my appointment.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, September 21, 2008 7:50 PM CDT

9/22/08: Well the little peanut wants to remain a mystery. After being very active for the first part of the ultra sound the little one decided to curl up into the fetal position so the tech couldn't see what the baby is. We do know the baby has 10 fingers and 10 toes - yes both arms, hands and all the fingers. The baby is in the 59th percentile (size and weight) for it's age. My doctor was very happy with news since Maddie was so small when she was born. We will have another ultrasound soon.

Please keep those thoughts and prayers coming our way...

9/21/08: Maddie's had a pretty easy week. She didn't go to school last Monday because she was having trouble with her tummy. She did go Tuesday but ended up coming home early due to a huge blow-out at school. She spent most of the morning in the nurses office with three women trying to clean her up. Steve had to pick up Maddie and Heidi and take them home. Wednesday Lacey was sick so they didn't go. She doesn't have class on Thursdays. Friday she was awake for a little bit then zonked out the rest of the time.

Maddie had her first Saturday therapy session yesterday. Maddie had a new therapist who has never worked with her before. She said Maddie was loosening up nicely once she was in the water. Unfortunately Maddie didn't kick or splash or do much of anyting but take it all in. She was awake the whole time, hopefully she will do better this coming Saturday. I told the therapist Maddie loves music and asked if I could bring some of her cd's to see if she responds to the music and uses her legs more.

We had our Fall Festival at church today. Maddie did great, she was happy and content the whole time. The weather was perfect, we enjoyed sitting outside talking to family and friends. Maddie even got to spend some of her money from Grandma and Grandpa Fall at the fish pond. She got a book and some lip gloss - just what a girl needs. Aunt Denise and Uncle Dan joined us for dinner, it was a wonderful afternoon.

I have my 20 week ultrasound tomorrow. Steve and I are hoping to find out what our next little peanut will be. If all goes well and we can determine what the sex is I will update Maddie's web page tomorrow after my appointment.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, September 14, 2008 9:14 PM CDT

Maddie's week was the same as last week. She pretty much slept through school and the afternoon when she got home. She stayed awake the entire day on Friday, one day the past two weeks. Steve says she's just like her mommy...

Steve has a few projects to start this fall. The first big project is insulating the garagae and bonus room so it's warmer for Maddie this winter. Maddie and her aide have to be ready for the bus 10 minutes before the scheduled pick up time. Steve is going to insulate the rooms and turn on the heat just to keep it warmer then the outside temperature. Last year it was so cold a few of the days they stayed in the house until the bus started up the driveway. This winter should be much better.

We may also have to build a ramp on the outside of the house next to the garage. We're waiting to meet with a woman from the state to access the situation. We're hoping for a lift in the garage but it will probably have to be the ramp. Our concern with the ramp is it would be exposed to the elements and the safety of the ramp with snow and ice on it. We will meet with the woman this Friday to walk through the options.

Other than Maddie adjusting to her new schedule she has been doing great. She continues to be her cheerful happy self. Grandma Tessie will be coming up in two weeks for a visit. She hasn't seen Maddie since July. We can't wait!

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, September 14, 2008 9:08 PM CDT

Maddie'd week was the same as last week. She pretty much slept through school and the afternoon when she got home. She stayed awake the entire day on Friday, one day the past two weeks. Steve says she's just like her mommy...

Steve has a few projects to start this fall. The first big project is insulating the garagae and bonus room so it's warmer for Maddie this winter. Maddie and her aide have to be ready for the bus 10 minutes before the scheduled pick up time. Steve is going to insulate the rooms and turn on the heat just to keep it warmer then the outside temperature. Last year it was so cold a few of the days they stayed in the house until the bus started up the driveway. This winter should be much better.

We may also have to build a ramp on the outside of the house next to the garage. We're waiting to meet with a woman from the state to access the situation. We're hoping for a lift in the garage but it will probably have to be the ramp. Our concern with the ramp is it would be exposed to the elements and the safety of the ramp with snow and ice on it. We will meet with the woman this Friday to walk through the options.

Other than Maddie adjusting to her new schedule she has been doing great. She continues to be her cheerful happy self. Grandma Tessie will be coming up in two weeks for a visit. She hasn't seen Maddie since July. We can't wait!

Have a great week!

Love,
Steve, Darla and Maddie

Monday, September 8, 2008 8:10 PM CDT

Maddie has been sleeping through most of her time at school. We're hoping it's just the change of the season and her trying to acclimate to her new schedule. We're going to start putting her to bed earlier to see if that helps at all. Maddie started Sunday School at church on Sunday - she slept through that as well.

Maddie will start having therapy sessions on Saturdays at the Special Children's Center, she'll be going swimming. Nancy, one of her therapists,has been trying to get the schedule pulled together so she can be in the pool. We start in two weeks which should be fun for Maddie.

I had a doctors appointment today, all is going well. I'm 18-1/2 weeks along, I have an ultrasound in two weeks. I was hoping to have one today but my doctor really wants to wait until I'm 20 weeks when they can see so much more and take measurments. I can't wait - we're going to find out if Maddie will be getting a little sister or a little brother.

We are in the process of working through the county for a new van and other accessible features we need to modify our house for Maddie. It's a long process but we're working with a wonderful case worker who is really trying to help us. I am not lifting Maddie as much, Maddie's aides and Steve are moving her where ever she needs to go.

Have a great week!

Love,
Steve, Darla and Maddie

Monday, September 8, 2008 8:10 PM CDT

Tuesday, August 26, 2008 8:23 PM CDT

UPDATE 9/8: Sorry folks... I was having technical difficulty last night with our computer so I wasn't able to update photos or the web page for that matter. I will update Maddie's web page tonight.

UPDATE 9/3: Maddie had a great first day of school. She has six kids in her class, one of them being a little girl. She's not the only girl anymore. Maddie was very tired yesterdy, she got home from school around noon, fell asleep around 3:00 and slept the rest of the day and ALL night! She was one tired little peanut. Hopefully she will be better today. Pictures to follow!!!!

Maddie is ready for school to start next week. The back to school outfits are bought (yes Diane shopping is a hobby for me...) and ready to go along with a couple pair of new shoes. Wow I can't beleive it is here already.

Maddie went to school in the afternoon earlier this year. We have switched the schedule so she will be attending the morning class due to a smaller class. I'm not sure how Maddie will react to getting up, dressed and out the door by 8:15 (bus picks her up at that time). Maddie is up at 6 AM some days and sleeps until 9 AM other days. It all depends on how Miss Madeline is feeling that day. We all wish we could stay in bed some mornings... well Maddie does. School starts at 9:00 until 11:45 PM - this should be interesting.

Steve, Maddie and I will attend an Open House tomorrow night at Maddie's new school. We'll tour the school and see Maddie's classroom. Maddie's teacher has already called me to touch base and make sure I'm comfortable with everything that is happening. As I stated previously, Steve and I are not thrilled she is going to be attenidng a school with hundreds of students. We'll just have to wait and see how it all plays out.

This winter will be a true test. The school district promises they will contact me in the event of a cold and flu breakout in her class or school. They did this before so I am confident they will continue to do this. I have set some high expectations for the Administrator of the District. She certainly does not want the wrath of Darla Fall after her, especially a pregnant hormonal one at that!

We're hoping to get up to the cabin this weekend and spend some time with Steve's family. We have't been there for so long, we didn't make it all last summer.

Have a safe holiday weekend!

Love,
Steve, Darla and Maddie

Sunday, August 17, 2008 5:48 PM CDT

Maddie has had a great couple of weeks. She has been so content and happy. She does have a little cold but nothing she can't handle.

Maddie had a doctor�s appointment this past Wednesday. Maddie has developed Alopecia which is an autoimmune disease in which the body's immune system attacks itself, which in this case, are the hair follicles. We discovered Maddie had a small bald patch on the top of her head this past June. Dr. Chawla thought it could be Alopecia but wasn't certain and referred us to a Dermatologist. Maddie�s new doctor confirmed it was Alopecia, she also said it was the strangest case she has ever seen. Maddie�s spot is a perfect rectangle (1� long x �� wide). The typical spots are small round coin-size bare patches. The doctor was also happy to hear she doesn�t have any more spots and the spot she does have has not changed over the past two months. Although there is no cure for Alopecia there are some treatments we can try. We are going with a regimen of two weeks on two weeks off with a topical steroid. The doctor also said we could try Rogaine just on the one spot if we wanted to see if it would work.

My doctor�s appointment went well a couple of weeks ago. I got to listen to the heart beat, my doctor said the heart beat was very strong and right in the range it should be. My next appointment will be the second week of September. I�m not sure if I will have an ultrasound at that time or not. If it�s not at that appointment then it will be a week of so later but definitely before my next appointment.

Maddie has school registration and school pictures this week and we�ll attend an Open House next week. Maddie will be attending a brand new school which was built over the last year or so. I�m anxious to see the inside of the new building. Steve, Maddie and I drove by it earlier this summer and it looks really nice.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, August 3, 2008 8:07 PM CDT

Maddie's been a little more tired this week. She slept a lot during the day which she usually doesn't do. I 'm afraid she may be going through another growth spurt, she is getting longer and heavier. Even though she slept more during the day she still slept good at night - which is great for everyone.

My company closed early on Friday for our picnic. We spent the afternoon west of the cities at a wonderful park on the lake. Maddie slept the whole time we were there but at least she got to hang out with my co-worker's kids Ella and Mackanzie before they ran off to play. She had her face painted and a characture done all while she slept...

We celebrated Brian and Cheryl's 25th wedding anniversary today at Joanne and Neil's. It was a great day, unfortunately Maddie slept through all of it. She woke up just in time for the party to wrap up and the clean up to begin.

School is right around the corner but I haven't done anything I mentioned I had to do a few weeks ago. It's time to get the aide's schedules confirmed so it all works out when school begins.

Thank you all for your kind words about our wonderful news. I'll keep you posted as I get further along.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, July 27, 2008 7:07 PM CDT

It�s been a great week! Madeline has been doing well all week long. Maddie woke up Friday morning at 2:30 AM cooing and making her happy noises. She didn�t fall back to sleep until 10:00 AM. Of course she slept most of the day but was up and ready to go to Vacation Bible School at church Saturday morning. She had a wonderful time there too.

The theme for VBS this year was CELEBRATION. The kids got to make whirly wind things and T-shirts with a picture of what they like to celebrate. Maddie�s picture is one of her in front of church, she loves church! I wish you could see her in church, she usually makes her happy noises and smiles a lot. Maddie likes to hear the choir sing and usually adds her own twist to whatever song they happen to be singing at the moment. Maddie even chimes in every once in awhile when Fr. Chris is speaking or giving his sermon. Fr. Chris doesn�t mind, in fact he enjoys hearing her. We definitely know Maddie is in the HOUSE!!!

Steve, Maddie and I have some exciting news to share with all of you (hint- look at Maddie�s shirt). Yes, Maddie is going to be a big sister in February. I�m 12 weeks along and finally feeling better. Our families have known for about a month but we�re just starting to tell all our friends. I had my first doctor�s appointment when we were on vacation, so far so good. My next appointment is the beginning of August, hopefully I�ll have another ultra sound so we can see the progression of the pregnancy. We�re so excited and ask for you to keep us in your prayers.

It�s almost time for back to school shopping for Miss Madeline. She is growing out of her size 5�s and moving into 6�s. Maddie had a dress on last Sunday that was a little tight around the middle. Steve said �That�s okay Maddie we�re all having an issue with our middles�. I said Maddie and I are the only ones that have an excuse�

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, July 20, 2008 8:14 PM CDT

The Merkel family reunion was wonderful! It was so nice to see my aunts, uncles and cousins I haven't seen for so long. Maddie did great. She didn't mind having everyone talk to her and touch her. I think she actually liked all the attention.

After the party at the Park we were able to go out to my grandparents house and walk around. The current owners have kept the house the same for the most part except for updating it. My grandfather passed away before I was born and my grandmother moved from the house so I don't know the house at all except for in pictures. I vaguely remember driving by it when I was a little girl but it was great to be able to walk the grounds and see the buildings. My aunts and uncles were able to walk through the house, they were sharing stories about who did what to whom, it was priceless. I wish my dad could have enjoyed the day with us too.

It's time to get Maddie prepared for school. We have to work on the aides schedules and confirm the bus schedule. Steve and I drove by Maddie's new school when we were on vacation. We have mixed emotions about Maddie going to the new school, we want her to continue going to Special Children's Center. Unfortunately, they will no longer have a classroom at the Center so she has to to go to the new school. It's hard to believe school is right around the corner - where the heck did the summer go?

Have a great week!

Love,
Steve, Darla and Madeline

Wednesday, July 16, 2008 10:18 PM CDT

We had a wonderful vacation and a great rest of the week at home. We enjoyed our time together, hanging out and taking it easy. The week went way to fast but it was very relaxing.

We're going to Marshfield this weekend for the Merkel family reunion. I haven't seen my relatives on my dad's side of the family in over 10 years. I'm looking forward to seeing aunts, uncles and cousins I haven't seen for so long and of course introducing them to Maddie. It should be a great time.

Maddie got right back into her routine. Her therapists said she was a little tight but not bad for going several days without therapy. I'm sure she didn't appreciate jumping back into her routine but being the trooper she is she handled it well. We're all a little slower this week.

Have a great week!

Love,
Steve, Darla and Maddie

Wednesday, July 16, 2008 9:53 PM CDT

We had a wonderful vacation and a great rest of the week at home.� We enjoyed our time together, hanging out and taking it easy. The week went way to fast but it was very relaxing.� We're going to Marshfield this weekend for the Merkel family reunion. I haven't seen my relatives on my dad's side of the family in over 10 years. I'm looking forward to seeing aunts, uncles and cousins I haven't seen for so long and of course introducing them to Maddie.� It should be a great time.� Maddie got right back into her routine.� Her therapists said she was a little tight but not bad for going several days without therapy.� I'm sure she didn't appreciate jumping back into her routine but being the trooper she is she handled it well.� We're all a little slower this week.�� Have a great week!Love,Steve, Darla and Maddie

Tuesday, July 8, 2008 10:14 AM CDT

Our long weekend on Madeline Island was incredible! Maddie did fabulous, we couldn't have asked for a better vacation with her. We got up to the island Thursday afternoon and got back late yesterday afternoon. We didn't hear a peep out of her other than lots of smiles and coos for everyone.

We went to the beach two days. Maddie laid on her towel under the umbrella with tons of sunscreen on and she still managed to get a better tan then me. The weather was perfect the 5 days we were there but it was really nice being by the lake.

The anual 4th of the July party was huge this year with about 100 people in attendence. Maddie had a great time hanging out and watching mommy and daddy get beat at horsehoes. I actally did advance to the next round but missed moving on to the next level with my partner by the other team getting a ringer on their last throw. Oh well maybe next year. Of course there was way too much food but it was all so good! I'm still full from all the food...

This week Steve and I are off, we're doing things around the house and just taking it easy. I think Maddie will sleep a lot recovering from all the fresh air she had. She tends to sleep more when she's more active and we change her routine. This was definitely a change to her regular routine but she did so well we couldn't believe it.

I just want to thank Jake and Susan for letting us stay with them in the cabin - it was so nice. The whole weekend was perfect and we can't wait to go again!

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, June 29, 2008 9:49 PM CDT

Madeline had another good week overall. She retched a little more this weekend but we had a great time at Grandma and Grandpa's house. Grandma Tessie made up for lost time with all her kisses...

We're getting excited for our vacation to Madeline Island this week. It will be nice to get away for a few days and spend some time with family and friends. Steve and I were just talking about how we're going to have to haul a trailer too just to fit every thing we need for Madeline. It's going to be fun!

Maddie and her cousins had a great time dancing at a wedding dance last night. We went to Marshfield to attend my uncle's wedding dance with my side of the family. Maddie loved the music and all the dancing she did with Grandma, Hanna and Emily.

Have a wonderful and safe Holiday week!

Love,
Steve, Darla and Madeline

Sunday, June 15, 2008 10:24 PM CDT

Happy Father's Day to all the Dads, Grandpas and Godfathers out there.

Maddie had a better week although her retching had subsided it started up again today. Not sure what that's all about but she appears to be getting better. She is still on the antibiotics for another week, she should be getting better soon. The allergy results came back negative for most of the common reactions but dog dander. Maddie had a slight reaction to that. Zach was in the house this past winter but not like he used to be. Hopefully her allergies will not get any worse as she gets older. The plan is to continue her daily dose of Claritin.

Steve, Maddie and I are getting ready for a vacation over the 4th of July. We didn't get a chance to do anything last summer due to a large project I was working on at the time. This year we're planning on heading up to Madeline Island (no, she is not named after the Island)to spend some time with Jake and Susan at their cabin. It should be a lot of fun. Hopefully Maddie will continue to be healthy so we can enjoy our time away.

Steve and I are starting to research options for transportation for Maddie. She is getting bigger and of course heavier which makes it difficult for me to lift her in and out of our SUV. We have some time but we are looking into everything now. We will start with switching out her car seat which will buy us some time for awhile. We will eventually have to look at a new van with a lift/ ramp to get her in and out. For now - it's a new seat and good o' dad carring her in and out of the truck.

Have a great week!

Love,
Steve, Darla and Maddie

Monday, June 9, 2008 8:25 PM CDT

Well Maddie is sick again...

She started to get sick, or show us signs she was sick, on Friday. Maddie's retching got worse and continued throughout the weekend. Grandma Tessie and Grandpa Bob were here for a short visit but Maddie was not her usual cheerful self. I spoke to the pediatrician on call in the ER yesterday afternoon. He knows Maddie pretty well and based on the symptoms I described to him he agreed with me when I said I thought Maddie had a sinus infection. He said he was going to call in the prescription for a new antibiotic which I picked up yesterday afternoon and started right away.

I took Maddie in today to see her primary doctor to confirm the sinus infection and to order x-rays if she thought Maddie needed them. Her doctor concurred it was a sinus infection she also checked for a bladder infection which came back positive this evening. Dr. Chawla also thought she may have allergies. We have discussed the possibility of Maddie having allergies for years but we just haven't tested her for them. Now that she is four, it's a simple blood test. Dr. Chawla only tested her for environmental allergies, since Maddie doesn't get anything but formula it's virtually impossible for her to have food allergies.

We won't have the results back from the allergy test for several days but we started Maddie on a daily dose of Claritin today. The Claritin will hopefully help with some of the drainage Maddie is experiencing from the sinus infection and perhaps allergies.

We're hoping Maddie bounces back from these infections rather quickly. Even though the weather hasn't been the greatest for summer we can't wait to get Maddie out and about instead of stuck in the house due to all her retching.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, June 1, 2008 8:13 PM CDT

Maddie had an okay week. She was sleey and she started retching again this past weekend. Steve and I don't know why Maddie started to retch again but I'll talk to her doctor tomorrow.

Despite Maddie's sleepiness and recent retching outbursts we did enjoy a weekend at Robert's Good Neighbor Days. We didn't take Maddie on the carousel due to the rain Friday night but we were once again in the Parade today on Tony's wagon. She did great during the parade, we even brushed off her parade crown. The weather was perfect for a parade!

Maddie had a great time at the party for her last day of school. Maddie didn't get to go to class because Lacey was sick, Sandy filled in. Steve and I switched our schedules around so I could take her to be with the boys. Unfortunately, I had a crazy day dealing with an issue on a project, I had to excuse myself to respond to a couple e-mails. When I returned all the other boys left so I missed taking a class picture but Johnny was still around. Johnny was pretty close to Maddie, he is going to miss her. He came running up to her when he saw her.

Hopefully Maddie will have a better week and the retching will subside.

Have a great week!

Love,
Steve, Darla and Maddie

Monday, May 26, 2008 8:34 PM CDT

SHE'S BACK! Maddie had an awesome week! She stopped retching for the most part and she was awake during the day. Maddie has turned the corner.

Steve went fishing a few days this past week, it was just Maddie and me for three days. She did great which made it easier for me, seeing I was alone. The aides told me she cooed and smiled all day which she continued throughout the night. We had a great time together.

Maddie's last day of school is Wednesday. They are basically having a party and the parents are invited in the afternoon. I plan on attending, I hope to meet some of the other parents of the boys in her class. I'm sure Maddie will miss the boys and they will miss her.

We hope Maddie continues to feel better so we can enjoy the summer.

Have a great week!

Sunday, May 18, 2008 7:57 PM CDT

Maddie has had another rough week but I think we're finally turning the corner. She basically slept this past week away. I was on the phone everyday with Dr. Gilles' nurse trying to figure out we could do for Madeline. Maddie's blood work came back normal but her Lamictal level was a little high which was probably causing the sleepiness.

We adjusted the medication dosage and it appears to be helping. Maddie slept a lot yesterday but she has been awake most of the day, cooing and smiling. She was retching a lot this morning and afernoon but she is handling it so much better. We have been waiting for her to bounce back.

Maddie went to school on Wednesday but had a difficult time staying awake. One of Maddie's therapists called me to tell me how concerned they were with the way Maddie looked and her breathing was more labored. I told her to reposition her head to try to get her to breath a little better. I called Lacey later and Maddie was doing much better. She only has 4 days left of school, if she continues to do well she will be able to attend and finish the school year with her buddies.

Have a great week!

Love,
Steve, Darla and Madeline

Tuesday, May 13, 2008 10:59 PM CDT

Maddie has had a rough couple weeks. Steve took her back to the doctor last Friday because Maddie was so out of it last week. Between Dr. Chawla and Dr. Gilles' nurse they determined one of her seizure meds was a bit high. We lowered the doze but she is still sleeping all the time.

We ended up staying home this weekend and not traveling to Marshfield for Mother's Day. Maddie had a horrible Friday and Saturday night but Sunday she was starting to come around. We decided to venture over to Grandma and Grandpa Fall's house to spend some time with the Fall side. Maddie was very good and she even started to make her noises. Since Sunday she has been sleeping most of the time. I am taking her in tomorrow morning for a lab draw to see if there is someting else going on.

Maddie is still on antibiotics until next week. We're still giving her nebulizer treatments several times a day but she continues to sound congested. The pneumonia, sinus infection and croup have done a number on Miss Madeline. She has smiled a few times over the past three weeks but she certainly isn't herself.

Maddie did not go to school last week, she missed Monday too. She was supposed to go but Heidi had a family emergency so Sandy filled in, she'll go tomorrow. One of Maddie's therapist came to our house today, she brought a card from the boys in her class. They sure do miss her and we know she misses them. Before Maddie got sick, Steve and I would ask Maddie about the boys in her class, she would get a big smile on her face. It's almost as if she's embarrassed we're talking about her boyfriends - it's the cutest thing! She only has two weeks left so I want her to make the most of it.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, May 4, 2008 5:48 PM CDT

Maddie is home! We got home early Saturday afternoon and settled in. I truly believe Maddie knows she is home, she was making more of her little noises yeserday after we got home. She is still coughing and retching a lot but is doing much better. We're just so happy to have our little angel home.

We'll see how she does tomorrow morning to determine if she will go to school. She only has a little over weeks left so I don't want her to miss anymore but I don't want to get her too worn down either. She hasn't had therapy for a over a week and I can certainly tell. Her legs are very tight since she basically laid in bed for almost a week.

I will follow up with Maddie's doctor this week and give her an update of how she is doing.

Thank you again Aunt Neesie and Uncle Dan for the wonderful dinner last night!

Have a great week!

Love,
Steve, Darla and Maddie

Monday, April 28, 2008 10:01 PM CDT

UPDATE 5/2/08: Although Maddie had a better day then yesterday she is still coughing a lot and retching at times. The Resident and I spoke this morning about possibly going home today but shortly after that Maddie started coughing. We decided to stay put for another day and allow the nebulizer treatments to work a little more. We should be going home tomorrow.

Thanks again for your prayers and support.

UPDATE 5/1/08: Maddie has not been doing well today. She had another chest x-ray this afternoon due to low oxygen levels and a very wet cough she developed this morning. The spot of pneumonia on her right lung has grown just a little and she now has croup! They are going to start her on steroid nebulizers to see if we can get the inflammation in her esophagus down so she can breathe easier.

We did start her feeds at full strength today which she has been handling very well. Unfortunately, now that she has developed croup and the fact that the pneumonia has not cleared up as quickly as we thought, we may not be going home tomorrow as planned.

I'll keep you posted.

UPDATE 4/30/08: Along with pneumonia, Maddie has a nasty sinus infection. They did a CT scan yesterday which determined the infection. Maddie's white blood count and CRP numbers are coming back down to normal levels. We started her feeds this afternoon at half strength and half the rate it goes into Maddie, yes Neesie they decreased her IV fluids. She is responding very well to the antibiotics they started on Monday. We'll see how the feedings go but we're looking at maybe going home on Friday.

Thank you all for your love, support and prayers!

Original message on 4/28:

Maddie is in the hospital with pneumonia�

Madeline and I got sick shortly after Steve was sick two weeks ago. Maddie was home the next week from school and I missed one day of work. I�m not sure if that�s when she may have aspirated but somewhere along the line her cold worked itself into pneumonia.

We first saw signs of Maddie getting sick this past Friday. Heidi called me when they were at school to tell me Maddie was very lethargic and non-responsive. She had been sleeping all day, even her therapists couldn�t keep her awake. She started to retch around 4:00 PM really bad, she seemed to have gotten through it by the time Steve and I got home around 4:30. She slept really well and woke up Saturday in great spirits � cooing and smiling. Maddie started to retch again around 4:00 and continued to do so for several hours. Needless to say, Maddie and Steve stayed home and I went to our Easter service with Tony and Brenda. Maddie missed another Easter�

When I got home from our Easter service and breakfast at Joann and Neil�s it was around 5:00 AM. I checked on Maddie, she appeared to be moaning so I gave her Motrin to help with what seemed to be pain. I slept until about 10:00 while Steve took care of Maddie. She slept most of Sunday while we celebrated Easter with the Fall side of the family. She woke up around 3:00 but was retching again by 4:00 PM. The retching lasted for several hours. I was ready to take her to the ER but we decided to wait until the morning and call her doctor to make an appointment.

Maddie had a fever of 103 this morning, I gave her Motrin and called Steve to give him the update and tell him I�m taking her in. I got a hold of the doctor around 8:00, we were able to get an appointment at 11:00. I knew they were going to admit her once they took one look at her. She looked so run down and beat. She could hardly open her eyes she was so tired. I was so confident the doctor would I packed her bag for the hospital. Sure enough the doctor did his assessment of her and said �Maddie is very sick, I just don�t know why�. He ordered lab work and chest x-rays. We finally got up to her room around 1:30.

We got the results late this afternoon that she has two spots on her lungs, pneumonia. The lab results were pretty high as well, her body is working very hard to fight the infection so the doctors are not sure if there is something else going on along with pneumonia. They added another antibiotic to help fight the infection faster. Steve and I were shocked to hear it was pneumonia. They started the IV to give her body a break from her feeds and the retching. She is still retching but we�re hoping that will subside once we get the infection under control. She is finally resting peacefully, now I just hope I get some sleep as well.

I�ll update the web page as we learn more.

Love,
Steve, Darla and Madeline

Sunday, April 13, 2008 2:51 PM CDT

Miss Madeline continues to do great! She is doing well with her therapy and is engaging so much more with us. We're not quite sure if it's the special audio therapy she is doing or the fact that we are changing some of the meds. It could be the combination of both but whatever it is we LOVE it! We are so happy our little angel is doing so well. In fact her therapists are so impressed on how she is doing they're going to continue the audio therapy for another two weeks.

We went out Friday night to a restaurant that is becoming on of our favorites. They had an Irish group playing, Maddie really liked the music. She was cooing and smiling up until she had a very very messy diaper. Needless to say we ended our night a little earlier then we would have liked but we'll be back.

Steve is sick today with the flu. I hope Maddie and I don't catch it, it is one nasty bug. He started feeling sore and icky last night and has spent the whole day in bed. We'll see what this week brings for us, hopefully it's just one of those 24 hour bugs.

I think we are finally turning the corner and Spring will be here this week. We can finally get Maddie out for her walks. She will enjoy getting out in the fresh air - won't we all...

Have a great week!

Love,
Steve, Darla and Maddie

Wednesday, April 9, 2008 7:45 PM CDT

Maddie had another great week. She is more vocal and overall happier these days. I think her special therapy is working, she is so much more alert.

We are so happy Maddie continues to do well with the medication adjustments we are making. We will get a blood level next week to confirm the medication levels are good so we can remain increasing the one med and lowering the other. Maddie had a bigger seizure on Sunday but that was the only one we've seen in about 2 weeks. We are hoping we will keep them in check for the duration of the adjustments.

We are getting ready for our Easter, which is on 4/26. Steve and I plan to take Maddie to our Easter service, she'll probably sleep through it since it starts @ 11:30 PM and goes until about 3:00 AM. Steve and I will be very tired and Maddie will be well rested. It's all worth it, Easter is my favorite service, it is so beautiful.

Have a great week!

Love,
Steve, Darla and Madeline

Wednesday, April 2, 2008 9:34 PM CDT

Maddie is doing great. We are adjusting her seizure medications and she continues to do well. We are increasing one of them and decreasing the second one to eventually get her off of it. We have another week to go then we'll get blood levels to see how much of the medication remains in her blood stream and ultimately decreases the seizures. Our goal is to have Maddie on one seizure med instead of three.

Maddie got to go swimming today at school but Lacy forgot to take pictures. She was too busy watching Maddie kick and splash in the water. I'm hoping her therapist will stay on this schedule so she'll go swimming every Wednesday. One of her other therapist is doing an intensive audio therapy with Maddie. She listens to a certain CD for half an hour 2 times a day for two weeks. The music is supposed to help her reorganize her nervous system, we're hoping it will help her with her startle reflex. It will be interesting to see how it works.

We are so ready for spring! We can't wait to get out and go for our walks with Maddie. Lacey told me this morning she is so excited to take Maddie for walks in the stroller all day long, she loves to be outside. Maddie likes to go for walks as long as she is moving and can feel the breeze on her. They will have a blast this summer.

Hope you have a great week!

Love,
Steve, Darla and Madeline

Monday, March 24, 2008 9:02 PM CDT

Happy Easter! We had a wonderful weekend with the Merkel side. We spent Saturday afternoon and evening watching family slides and reminiscing about my dad. It's hard to believe he has been gone 25 years but he will always be in our thoughts and memories.

Maddie went back to school today. Heidi said she had a great day after the school break. She also said the boys were happy to see her again. This week they are talking about pets - can you guess what today was? I'm not sure who had more fun, Maddie or Heidi making the mask.

My meeting with Dr. Gilles went very well. She was very excited to see us and couldn't beleive how big Maddie is. We are going to optimize one of her medications and try to get her off at least one of her other seizure meds. We will take it very slow, we hope to be off the one in 6 weeks or sooner if she is doing well. Dr. Gilles believes Maddie is outgrowing her dose which is why she may have had a flurry of seizures. Maddie will need to get a blood draw in three weeks to see where her levels are and how the med we are increasing is holding her.

Have a great week.

Love,
Steve, Darla and Maddie

Tuesday, March 18, 2008 7:37 PM CDT

We had a blast at the Dells! Maddie was an absolute angel the whole time. I truly believe she had fun being away from home and her routine. She enjoyed spending time with her cousins, Nadia, Ellie and Ava, swimming, shopping and going out to dinner. Maddie's days are very structured so anytime we get the chance to mix it up for her - we try to.
We hope to do it again next year.

This week is Spring Break so she doesn't have school. She will probably miss the boys in her class but I think she likes the break from therapy as well.

Maddie's seizures seem to have gotten back under control. She hasn't had one of the big ones since last week, hopefully we'll just have to adjust her medication. I meet with Dr. Gilles on Thursday, we'll discuss eveything that's been going on.

We are looking forward to going to Marshfield this weekend for Easter. Although Steve and I don't celebrate our Orthodox Easter until the end of April we will celebrate the American Easter with my family. This Easter is particularily special, the 25th anniversary of my father's passing. Easter just happens to fall on the day my father fell asleep with the Lord. The weekend will be especially meaningful for this reason.

I hope you all have a wonderful Easter!

Love,
Steve, Darla and Madeline

Tuesday, March 11, 2008 8:34 PM CDT

We're going to the Dells with Dennis, Laurie and the girls. We are really looking forward to spending time with them and time away with Maddie.

Maddie has been having some great days at school. However, she has been spending more time in therapy rather than the classroom so she hasn't been hanging out with the boys. I think they are missing her being with them. Lately she has been getting back just as they are cleaning up and getting ready to end the day.

Maddie has been experiencing more seizures the last couple weeks. She's had several big seizures at school. Last week Lacey called me because she had one that lasted several minutes then continued to have jerks for about 20 minutes after the initial big one. I called Steve at work to run over to school to check out the situation. Of course, by the time Steve got there she was done. I'm working with Dr. Gilles' office to figure out what is going on. Maddie had a blood draw last Friday and we have a Doctors appointment with Dr. Gilles next week Thursday. Hopefully, we just need to adjust her seizure meds.

Steve, Maddie and I will be at the Dells next Sunday so I won't be updating the web page until next Wednesday.

Have a great week!

Love,
Steve, Darla and Maddie

Monday, March 3, 2008 9:28 PM CST

Maddie has met yet another milestone... she now has a big girl bed! Steve picked it up Friday night, we put it together in no time. Maddie loves it! She has so much more room, although she doesn't move much at all. It's so much easier getting her in and out of bed without lifting her over the side of the crib. Maddie has slimmed down but she's 40 pounds and is continuing to grow.

Maddie missed last week of school. Heidi was sick on Monday and Lacey was sick on Wednesday so neither one could accompany her to school. Friday was early release so there wasn't any PM Pre-school. Maddie attended today but I think she was worn out from all the excitement from the weekend she slept most of the afternoon at school.

Along with Maddie's new bed we also got her a large bean bag chair. The chair needs to be broken in, right now Maddie can only lay on it, it doesn't mold to her like it will. Steve and Maddie have hung out in it all weekend, it's a great chair to hang out and take a nap in as Steve says.

We are working on possibly taking Maddie to Wisconsin Dells in two weeks with Dennis and Laurie and the girls. They are going since it's Spring Break and we thought it might be fun to take Maddie as well. I need to work out my schedule but I think I can make it work. Steve and I have talked about taking Maddie there before but we never planned anything beyond that. I think she would really enjoy getting in the water. We wouldn't take her on any of the water slides, we would just hang out in the wading pool. I hope we can make it work.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, February 24, 2008 8:39 PM CST

Maddie and Hanna had a great birthday party this weekend. Unfortunately Aunt Kris and Emily were sick and were unable to make it. Maddie received wonderful gifts from everyone.

Maddie only went to school one day this week. Monday was a holiday and Wednesday we kept her home due to all the sick kids at school. She had a good day on Friday but she was pretty tired in the afternoon. Steve and I have noticed how much energy Maddie has when she comes home from school, she's usually so happy and excited on those days.

I met with Maddie's teacher, Kristin, Tuesday evening for Parent Teacher conferences. We didn't have a lot to talk about and it was fairly short. We discussed what they have been doing, how much the boys like her and the fact that they are still working on the therapy schedule to get her in the pool. Hopefully, they will have it pulled together very soon.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, February 17, 2008 5:07 PM CST

Maddie has a bit of cold but she is getting better. Her teacher actually called me on Friday to let us know the morning class had several kids out with the flu or went home with it. I told her Maddie will NOT be going to school since the teachers and therapists had been exposed to the kids who were sick.

Maddie had a great Valentine's day. She handed out Valentines to all her new friends and she received them as well. Lacey and Heidi tell me the boys really like Maddie, two in particular always want her to be with them. Kristen, the teacher, has to tell them several times a day that they have to take turns having Maddie by them. One of the boys really likes to sit next to her when they have circle time. We also celebrated Steve's birthday on Valentine's Day as well. Maddie even got to taste the frosting...

I have my first Parent Teacher Conference Tuesday night. Since Maddie just started school we won't have much to talk about. The meeting is more or less to make adjustments to the plan and goals for Maddie. Since Maddie is so developmently delayed we are constantly modifying her goals with her therapists. The therapists haven't had Maddie in the pool yet, that's one item I will be bringing up at the meeting.

Thank you Aunt Neesie for watching Maddie yesteray. Steve and I were able to attend the 5th or 6th Annual Fall Fishing Contest together. I wasn't going to go but Neesie agreed to watch Maddie so I could attend. Although the fish were not biting we all had a great time spending time with the Falls. Way to go Susan - she got the biggest one of the day. The only thing I caught (I guess you have to actually fish to catch anything) was heck for sitting in the heated ice house all day. Oh well theres always next year...

Have a great week everyone!

Love,
Steve, Darla and Madeline

Sunday, February 10, 2008 5:20 PM CST

Maddie had another good week at school. She is getting used to her new routine and I think she likes it. She had another awesome day on Wednesday. Lacey, her new aide who replaced Kristina (Kristina left in October) is really excited about going to school with Maddie. Lacey couldn't say enough about how Maddie smiled and cooed. Unfortunately, Heidi and Lacey are so busy with Maddie they don't really have time to take pictures.

Maddie is vocalizing more, she is using more noises to express herself. She has been doing this high pitch squeal when she's really happy. Steve and I are really enjoying Maddie's little personality coming out. Along with the squeals of happiness we also get tears of sadness for no apparent reason but she works through it. She loves to sit and chatter for hours on end.

We are looking forward to celebrating Maddie and Hanna's birthday with my side of the family in two weeks. We'll have the Merkel side at our house for the weekend. Maddie will be happy to celebrate her birthday again, she'll get to taste the frosting from yet another cake.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, February 3, 2008 5:38 PM CST

Maddie is in Pre-School! Her first day was actually Friday not Wednesday, school was closed on Wednesday due to the cold. Maddie did awesome her first day! She cooed and smiled most of the afternoon. Maddie is the only girl in her class, she's with 4 boys, she seemed to enjoy the attention. Heidi had a wonderful time as well, she's been looking forward to going to school with Maddie for the past year too...

Maddie will attend school on Monday, Wednesday and Fridays. She will be in the classroom for the circle lessons with her classmates then she will break off and go with her therapists for her therapy sessions. The Center was quite noisy on Friday but the noise level didn't appear to bother Maddie. She tends to startle and jump a lot when there is a loud noise but she did great on Friday. I really think she enjoyed herself, she was wired for the rest of the day. She didn't even take a nap the whole day. She was still going at 9:30 Friday night before we put her to bed.

We ordered Maddie's bed on Saturday, it should be here in 4 weeks. The store we ordered the bed through also has bean bag chairs. I'm sure you've seen she has one now but it's too small for her. The one we have is on loan through Special Children's Center, she has out grown it so we ordered a larger one that will last for awhile. I can't wait for her new bed to arrive - I think she's going to love it!

I hope Maddie continues to enjoy school like she did on Friday. I really think she loves being with the other kids and the chaos. Next week she should start swimming but I'm not sure what the schedule is.

Have a great week!

Love,
Steve, Darla and Madeline

Monday, January 21, 2008 7:46 AM CST

UPDATE 1/27/08: Maddie starts school on Wednesday! I can't believe it, our little peanut is starting a new chapter in her life. Sorry I don't have any new pictures - believe it or not we didn't take any pictures last week.

Believe me I will get plenty of pictures on Wednesday, I'll update Maddie's web page then.

1/21: Well our Packers aren't going to the Super Bowl - but we sure had a great season... Maddie, Steve and I cheered our little hearts out but in the end the Giants won.

Maddie had a great week. We are getting closer to having her go to school. Heidi and Lacey had to fill out applications to become State of Wisconsin school aides when they are with Maddie at school. Everything is falling into place so it shouldn't be much longer.

Steve and I are looking for a new bed for Maddie. She is growing out of her crib but we need to find a bed that is higher then the toddler beds that are out there. Steve was going to make one but we found what we need this past weekend. We want to look at a few more places but at least we know what we're looking for is out there. Maddie will have a new bed very soon.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, January 13, 2008 2:20 PM CST

Happy 4th Birthday Madeline! Maddie had a great birthday. We celebrated on Saturday with the Fall's. Maddie was in a good mood and had a wonderful time with her cousins. I can't believe she is 4, I have no idea where the time went...

Maddie will be going to school as soon as we get all the paper work pulled together for the aides. I met with the Hudson School District Administer this past Tuesday. The meeting went very well which was kind of surprising since we were at a stand still last August. I'm not sure what has changed since then but we're happy she will be starting soon. Maddie will be going to the Early Childhood Development classroom three days a week at the Special Children's Center. She'll be riding the bus with her aides, Heidi and Lacy. Along with school like activities Maddie will be receiving her therapy at the Center as well.

I'm very excited she will be going to the Center for her therapy. The therapists have been coming to our house for the past 4 years but they have so much more to offer her at the Center. She will have access to all their special therapy equipment including the swimming pool. Maddie hasn't been in the pool for over a year but I think she will really enjoy it like she used to. She kicks so much more she'll be doing circles around the therapist in no time...

We enjoyed watching the Packers win yesterday (sorry Deb and Larry). Hopefully we can continue our winning streak next week. GO PACKERS!

Have a great week!

Love,
Steve, Darla and Madeline

Monday, January 7, 2008 7:40 AM CST

Maddie has been doing great. She is over her little cold, mine is still hanging on but I'm feeling much better.

My meeting with the school District is tomorrow morning so nothing to report on that until next week.

Sorry this is so short but there really isn't much going on with us. We're just enjoying Maddie, she has been engaging so much more with us. She is looking more at us when we ask her to look at us, but she is still not consistant all the time. We'll take whatever we can get...

Have a great week!

Love,
Steve, Darla and Madeine

Tuesday, January 1, 2008 4:02 PM CST

Happy New Year! Unfortunately I am sick and Maddie has a touch of a cold as well so we didn't get to celebrate. But it was a wonderful year nonetheless and we have so much to look forward to in the new year.

We had a wonderful time Saturday celebrating the holidays with the Fall side of the family. Every year around this time we get together with all the Aunts, Uncles and cousins on Steve's side. It's a great time to catch up with everyone and spend some time with them. We had a fun packed day but I beleive this is where I got sick, I started to feel sick once we left the party. I've basically spent the last two days in bed getting plenty of rest but I still can't shake this thing. Maddie started sneezing Sunday and sounds pretty congested as well.

I will be working with the school district and the county once again to try to get Maddie into school. Hopefully, we'll be able to come to some agreement but it won't be easy. I really want Maddie to attend the Special Children's Center where her therapists are but the county/district wants her to attend a local elementary school where the nurse is. If you recall we've been going around and around for the past nine months, I finally just said Maddie wasn't going to attend. I said Maddie will stay home and the teacher can come to our house. Anyway we meet again next week.

I hope you all had a wonderful New Year's!

Love,
Steve, Darla and Maddie

Tuesday, December 25, 2007 5:23 PM CST

Merry Christmas! We hope you had a very Merry Christmas, we certainly did. Maddie was an absolute angel this whole weekend. Steve and I couldn't have asked for anything else, we received the gift of good health for Madeline so we could travel to be with family this Christmas.

This year the Merkel family decided to donate gifts to a couple charites instead of exchanging gifts as we normally do. What a wonderful feeling knowing we may have brightened a child's day that is in the hospital during this holdiday season. I believe this will become our new tradition, it truly is more meaningful to give then to receive during this time of the year. My heart goes out to one family in particular, may they cherish the time they have with their precious little angel, Jillian.

Maddie received lots of cute outfits, wonderful books and great toys from her Aunts and Uncles. Maddie smiled and cooed for everyone as if she were cheering with excitement each time I opened a gift for her. It was a heart warming Christmas Eve. I often thought of my three little angels in Guatemala, Delfina, Venessa and Adriana. I hope they had a very Merry Christmas as well.

This truly was one of our best Christmas' ever! May the meaning of this holiday season stay with you throughout this next year...

Have a great week!

Love,
Steve, Darla & Madeline

Sunday, December 16, 2007 8:01 PM CST

Maddie did very well in her Christmas Program today at church. Unfortunately, our pictures during the program didn't turn out so I won't be able to share those with you. Maddie was an angel again this year and was once again a big hit with our congregation and guests.

The Fall residence is not very Christmas like. Our tree is up but it's not even decorated! I can't beleive we're only a week away from Christmas and we don't even have our tree decorated, any Christmas decorations out or anything that resembles Christmas. I do have the wonderful cards we've received from our family and friends on the mantel and around the livingroom. This week the Christmas tree will be decorated!!!

We'll be traveling to Marshfield to celebrate Christmas Eve with the Merkel side. It's been awhile since we've been home, it'll be great to see everyone and spend some time with my family. We can't wait!

Sorry this is short but I do have to start putting the lights on the tree or I'll be saying the same thing next Sunday...

Have a great week.

Love,
Steve, Darla and Maddie

Sunday, December 9, 2007 5:55 PM CST

Madeline has been doing well. She's been staying healthy and quite content. She did have a few weeks were she was waking up very early but we adjusted her medication, she's been sleeping better since.

I'm behind on my decorating and Christmas shopping. We don't even have our tree up. The weather was too bad last weekend so we didn't go up to Tony and Brenda's to get out tree. Tony did cut one down for us, we just need to put it up. Once I get the tree up I'll be in the spirit and all ready for shopping.

I know I've said this before but it's worth mentioning again.

Tis the season - It is better to give then to receive... If you find you have some extra money this year please donate to a Children's charity. We have been so blessed that Madeline has been in great health this year. She was only in the hospital four times for a total of 25 days. Some of the children I saw in the hospital during the hospital stays spend months there. Many of these children are at the hospital alone without family members because the parents have other children at home as well. The money that is donated helps to buy toys and games and such for the children to play with.

If monetary donations are not an option maybe you could volunteer at the hospital. The volunteers are priceless! They walk through the units and offer to help with the children. Maddie has had several volunteers who read to her or held her while I've had to work on stuff for work at the hospital. The volunteers also play with the kids and just hang out with them. If you have some extra time and want to make a difference in a childs life please consider becoming a volunteer at a children's hospital. If you are interested let me know I'd be happy to give you the information.

I'm not sure if was my trip to Guatemala or what but I definitely feel more giving and charitable then I have ever felt! It's not about me... it's about what I can do to make a difference in someone else's life.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, November 25, 2007 9:52 PM CST

Hope you had a wonderful holiday! We sure did. We spent Thanksgiving with the Fall side. Grandma Tessie and Grandpa Bob spent the day with us on Friday before they went back on Saturday.

Maddie had a cold but she is doing much better now. I was sick when I came back from Guatemala and Sandy & Heidi were both sick that week as well. I think we�ve finally gotten over our colds. Sandy disinfected the whole house on Wednesday, she was tired of being sick.

I hope Maddie continues to stay healthy through the holiday season. We�ll be traveling to Marshfield for Christmas this year to spend it with the Merkel side. We also have the Christmas pageant at church Maddie will be getting ready for. I�m not sure what the play is or even what Maddie�s part is but we�ll find out this week. I still think about last year�s performance and how special that was.

I am excited for the holidays. We�re going to get our tree on Saturday at Tony and Brenda�s cabin. We always have so much fun cutting our tree down and spending the day around the camp fire. Last year was really cold but the cabin was cozy warm for Madeline. Now I just have to start my shopping�

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, November 18, 2007 9:56 PM CST

I'm back... I had an incredible trip to Guatemala and I would go back in a heart beat! I miss the children terribly but I'm also happy to be back with my family as well. I missed Madeline and Steve very much.

Madeline did very well while I was gone. At least Lynnae made me feel good one day I called to check in, she told me she thought Maddie missed me. Steve told me she did awesome the whole time. Maddie did cry when she heard my voice this past Tuesday before I got home. Steve said she was mad because she could hear me but couldn't see me. I scooped her up and gave her lots of hugs and kisses when I finally made it home. She started to coo and smile.

I spent most of my time in the nursery with the younger children. I became very close to two children in particular. Delfina, is a 10 month old little girl and Venessa is an 18 month old little girl. I also became very close to a little girl, Adriana who is 8. Since I don't speak spanish it was difficult to carry on a conversation with Adriana but the smiles and hugs mean the same in any language.

The orphanange is a very happy place for these children. They all seem so greatful to have us there and want to spend time with us. This particular week was a very special week, they blessed their new church. It was a huge celebration and the children were very involved in the ceremony. They were exhausted after the two day celebration so we got to spend more time than normal with them.

I know you are all waiting for pictures of Maddie but I have included a few pictures of my "other" 3 kids down in Guatemala as well. I really hope I can return next year. I know Steve would like to go too, we'll see what next year brings for us.

I hope you have safe travels this week if you are traveling for Thanksgiving. I am THANKFUL for my wonderful husband, my beautiful daughter and our extended family and friends - I'm extremely blessed and THANK GOD for everyone in my life!

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, November 4, 2007 11:17 PM CST

It's a little crazy at the Fall residents these days. Steve and I are extremely busy at work and now I'm leaving for a week.

I'm so excited for my trip to Guatemala but it's finally hitting me I'm going to be away from Madeline for a week! Of course I will miss Steve as well, but I've never been away from Madeline for more then a night. I know I'll be very busy at the orphanage but I can't believe the emotions I'm feeling about leaving my family. It started yesterday when I was at work, (I'm working my butt off before I leave)the sense of sadness and joy all at once. I'm sure I will be fine but I will not be able to call and check on Steve and Madeine without a pretty hefty cell phone bill.

Maddie had another great week. She was a little crabby on and off but did well for the most part. I pray she stays in great health and spirits while I'm gone. I know Steve does too...

I would like to thank everyone who made contributions to Hogar. I appreciate your support and the children will benefit greatly from your donation.

I will not update Maddie's webpage next week, but know I will be thinking of all of you and missing my peanut.

Love,
Steve, Darla and Madeline

Monday, October 29, 2007 0:02 AM CDT

We had a great weekend! We had our annual Halloween Party after the Halloween Parade through our neighborhood. The party ended up being a Surprise 40th Birthday party for me � boy was I surprised to see my family show up. Since I�ll be in Guatemala for my birthday, they decided to have the surprise now.

Maddie has been a little cranky this week but she did so well yesterday and last night at the party. I actually took her to the doctor on Thursday with a potential bladder infection but the test came back normal. Her doctor told me it could still grow a culture up to 72 hours after the initial test. Hopefully, it will not come back positive at any point.

We had another fun day at Tony and Brenda�s house today. They had a Halloween party with a hayride and pumpkin carving contest. Maddie was laying down trying to take a nap when they went on the hayride but she got to join in on the pumpkin carving. Well actually Steve did the carving this year � he did a great job. Unfortunately I didn�t get a picture of it.

My trip is right around the corner, I�m pulling all my last minute things together. I want to thank everyone who has made a donation � I greatly appreciate your support and so does Hogar!

Sorry this is so short but I�m worn out from this weekend.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, October 21, 2007 10:17 PM CDT

Maddie continues to do well. She's been having awesome days and nights! She is just so darn happy, Steve and I love it. She has been waking up earlier in the morning but she usually falls back to sleep fairly quickly.

I finally had Lasik surgery Friday morning. The recovery took a little longer then I expected but it's amazing how well I can see. I just can't believe I waited so long to do it. Steve had it done a few years ago, I guess I was too chicken to do it. We had planned for it a year ago but I had to cancel many appointments due to issues with Maddie. My trip to Guatemala was the final push. I didn't want to have to deal with glasses or contacts in the dark at the orphanage. They conserve energy by having lights out very early, the only way to get around is by flash light. That was all I needed to hear in order to make the appointment...

I am getting more and more excited for my trip. I have a lot to do and purchase before I leave but thankfully I got my shots out of the way. I do not recommend getting a lot of shots at one time, my arms were so sore on Wednesday I couldn't even hold Maddie. I had to take Motrin around the clock just to raise my arms and function the next day. It's been quite the week!

Just a reminder if you plan on making a donation to the orphanage we need to receive your check next week.

Checks can be made out to Holy Trinity Orthodox Church(523 1st Street, Clayton, WI 54004) with Hogar Orphanage designated in the memo.

Feel free to Google Hogar Rafael Ayau �the pictures are sure to get you�

Thank you for your generosity!

Have a great week!

Love,
Steve, Darla and Madeline

Tuesday, October 16, 2007 10:48 PM CDT

Maddie has been doing great! She's been so happy and cooing up a storm. It's amazing how well she does when she's feeling good. She loves to make noises. I hope we continue on this streak.

I'm getting ready for my trip to Guatemala. I'm having a little difficulty with the packing. I've never gone on a trip where I didn't pack at least four outfits per day I was going to be gone. This trip I am packing very little for me and the rest for the kids.

I have recruited and trained one of Steve's second cousins, Lynnae, to help Steve when I'm in Guatemala. Lynnae spent this past weekend with Maddie and I learning how to administer the medication and work the feeding pump. Lynnae did very well, she's a pro already!

Here is more information on the Hogar orphanage:

As some of you know I will be traveling to Guatemala in 3 weeks (11/6-11/13) with a group from my church. Our church adopted an orphanage several years ago which we make monetary donations to along with our time. I�m very excited I will be able to attend this year and spend a week with the children at the orphanage. I can't wait!

The orphanage is in the heart of Guatemala City. It is a refuge for over 100 children who range in age from newborn (dropped off in the middle of the night) to 18 years of age. Most of these children were abused by their parents or family members and they ran away or their families were too poor to raise them, they were left to live on the streets by themselves. My responsibility will be to take care of the babies in the nursery (I�m really looking forward to this) and spend quality time with the toddlers and older children playing soccer, swimming, reading and doing crafts (this should be interesting).

The name of the orphanage is called the Hogar Rafael Ayau which is run by nuns, Mother Ivonne is the director. She runs an extremely well organized and strict orphanage. With a budget of $35,000.00/month to run the orphanage she is always accepting donations. They are in the process of building a new and bigger orphanage so they can accept more children.

With the holidays coming up and an incredible worthy cause� I thought I would take this opportunity to ask if you would like make a contribution. We are asking that the checks be made out to our church so we can issue one check instead of bringing all the checks.

Checks can be made out to Holy Trinity Orthodox Church(523 1st Street, Clayton, WI 54004) with Hogar Orphanage designated in the memo.

Feel free to Google Hogar Rafael Ayau � the pictures are sure to get you�

Thank you for your generosity!

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, October 7, 2007 10:53 PM CDT

Maddie has another bladder infection but she is doing much better. She is on an antibiotic to treat it and we'll have to follow up with Dr. Chawla to confirm the infection has cleared next week.

Maddie has been smiling and cooing much more. She has even giggled a few times this past week. Steve and I are so happy, she is feeling and acting so much better. She has been more vocal and at times appears to be responding to Steve and I. Last Sunday she was smiling on command and cooing like she has never done before, she did the same thing today at church. Steve and I hope she continues to feel good, we're sure enjoying her sunny disposition.

I am really getting excited for my trip to Guatemala.

9/26:I thought I would take a moment to reach out to all of our family and friends who check Maddie's web page to tell you about a very special trip I will be making in November. I will be traveling to Guatemala with a group from church. Our church adapted an orphanage several years ago which we donate money to along with our time. I am very excited I will be able to attend the trip this year and spend a week with the children at the orphanage. I can't wait! The name of the orphanage is called the Hogar Rafael Ayau which is run by nuns with one in particular who's name is Mother Ivonne as the director. We will be bringing money donations along with gifts for the children. I will have one large suitcase I will be taking full of things just for the kids. If you would like to donate items I will be giving their web page next time (I can't seem to find it right now). If you would like to donate money you can write your check out to Holy Trinity Orthodox Church (523 1st Street, Clayton, WI 54004) with it designated to Hogar Orphanage in the memo. If you prefer you can mail the check to me and I will forward to the church. We will send one large check at the time of our trip. More information to follow...

Have a great week!

Love,
Steve, Darla and Maddie

Wednesday, September 26, 2007 10:50 PM CDT

Maddie has had a better week. I've been so busy with work I haven't had a chance to update Maddie's web page.

Maddie had a doctor's appointment last Friday. We found out she was have more tummy issues but this time it truely was the formula we switched back to. She was having 10-12 bm's a day that started last Wednesday and her seizures were increasing. We met with her primary and Dr. Gilles' nurse. Both of them agreed we need to get the tummy situation under control and the seizures should get better. Dr. Chawla said she thought Maddie's tummy wasn't breaking down the sugars in the formula we had switched back to. We switched her food back to the partially digested formula and sure enough things started to return back to normal in no time. She is happy again!

Grandma Tessie is here to spend time with Maddie and oh yeah spend some time with Steve and I. Thank goodness Maddie is having a great week - she is smiling and cooing like her old self.

I thought I would take a moment to reach out to all of our family and friends who check Maddie's web page to tell you about a very special trip I will be making in November. I will be traveling to Guatemala with a group from church. Our church adapted an orphanage several years ago which we donate money to along with our time. I am very excited I will be able to attend the trip this year and spend a week with the children at the orphanage. I can't wait! The name of the orphanage is called the Hogar Rafael Ayau which is run by nuns with one in particular who's name is Mother Ivonne as the director. We will be bringing money donations along with gifts for the children. I will have one large suitcase I will be taking full of things just for the kids. If you would like to donate items I will be giving their web page next time (I can't seem to find it right now). If you would like to donate money you can write your check out to Holy Trinity Orthodox Church (523 1st Street, Clayton, WI 54004) with it designated to Hogar Orphanage in the memo. If you prefer you can mail the check to me and I will forward to the church. We will send one large check at the time of our trip. More information to follow...

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, September 16, 2007 10:08 PM CDT

Although Maddie had a great week, we had a situation with her yesterday afternoon. Steve and I were at church helping out for our annual Fall Festival which was today. When we got home Heidi said Maddie was really wobbly all day. Steve and I observed her and determined we should call the Neurologist on call at Children's. Dr. Gilles called us back and told us to give her a dose of Diastat, which is her emergency med we use when she has a seizure longer than 3 minutes. Even though Maddie wasn't in one long seizure she was doing what they call "clustering". She had many small ones right after another.

The Diastat knocked her out, she slept through the night. Since we weren't sure what Maddie would be like when she woke up, Maddie and I stayed home today and didn't attend our church dinner. Maddie slept for almost 24 hours after that dose. Maddie continued to have a lot of cluster seizures this morning but she continued to sleep. It was very odd, just when I was going to give her another dose of the diastat the seizures stopped. She hasn't had one since around noon today. Maddie didn't wake up until around 4:00 this afternoon, she was pretty vocal when she did finally wake up. She was cooing away in her crib. She had over 100 smaller seizures between yesterday and this morning, which tends to be a bit much for her.

Hopefully it was just a fluke this past weekend and Maddie won't have any issues we need to deal with. Dr. Gilles is going to be gone this week but her nurse knows Maddie pretty well so we should be okay if we needed to do something.

We'll keep an eye on her this week and see what happens.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, September 9, 2007 9:54 PM CDT

Maddie is feeling much better. She's had a great week overall. She'll be done with the antibiotic on Tuesday so hopefully we won't have any more issues with the infection.

We're still working on the school situation. I found out last month that two of our aides have to go through training with the State's school nurse, until this happens she won't be going. It doesn't make any sense to me, our aides have to be trained on how to take care of Maddie in the school setting. Even though our aides are already trained how to take care of Maddie, because they are not RN's, they have to go through the District's training process. I'm sure this will take awhile so I'm not sure when Miss Madeline will be attending school.

Sorry this is so short but it's been a pretty good week and not much else to report.

Have a great week!

Love,
Steve, Darla and Madeline

Monday, September 3, 2007 8:27 PM CDT

Maddie is home! We brought her home Sunday afternoon. We could have brought her home Saturday but Maddie was getting more and more fussy as the day went on so we decided to keep her in the hospital one more day. We found out why she was getting so irritable, the nurses were not giving her the extra bump of Chloral Hydrate (sleepy med.)she needs at night. Maddie was going through withdrawls. Once we started that again she is calming down again.

She slept through the night, she woke up this morning with a dirty diaper but went right back to bed. She does need extra doses of Tylenol every four hours, she's still in a lot pain but hopefully she will be feeling better soon. We can't give her Motrin at all until the infection is gone. Motrin is passed through the kidney's, we don't want them to have to work harder then they already are fighting the infection. We have a follow up apppointment next week with her doctor.

Maddie will have to have a test done in a few weeks to determine if she has bladder reflux. Apparently any child under the age of 6 who develops a bladder infection that goes into the kidneys has to have this test done. It is done by a Radiologist, they will fill Maddie's bladder with contrast and watch it as it passes through. They will be able to see if Maddie has a bladder that refluxes back into the kidney's hense causing issues down the road. Maddie's doctor does not believe she has bladder reflux but she has to have the test regardless.

We are so happey to have our little peanut back home. Once again I am in awe of Miss Madeline. She was an incredibly sick little girl in excruciating pain but she still smiled for daddy one afternoon. We just can't beleive how much she can endure and she keeps on smiling...

Thank you all for your continued love and support.

Love,
Steve, Darla and Maddie

Sunday, August 26, 2007 7:11 PM CDT

UPDATE 8/30: Maddie is slowly improving. Her fever finally broke this morning. She had another ultrasound this morning, her kidneys are still infected but they haven't gotten any worse, this means we stopped the infection from spreading to the bloodstream.

Maddie's doctor is very pleased with how things are going. In fact she has told us what is going to happen and it does. Maddie's levels are coming down, her sodium and CRP (protein test) are improving as they should as she fights the infection. Just to share how sick our little girl is, the CRP level should be .1, Maddie's was around 29, about 300 percent higher than normal. This level has decreased to 22 today. Maddie is still very sick and she is working extremely hard to fight this nasty infection.

Maddie is a little puffy right now. Her doctor is running the IV at a higher rate than normal, they're trying to flush out her kidneys faster to clear them of the infection. She looked like a Mac truck hit her last night but she's lost some fluid today which has brought down a lot of the puffiness in her eyes.

Maddie was smiling more today, she finally opened her eyes which she hasn't done since Saturday. Daddy received lots of smiles and coos, she was sleeping by the time I got back to the hospital...

We'll be here until her counts get back to the normal ranges, she tolerates her feeds and we're comfortable the infection has cleared out of her system.

Thank you all for your love and support!

UPDATE 8/28: Maddie is in the hospital. Maddie woke up on Monday with a 102 degree temp., I called her doctor to get her in ASAP. Steve took her to the appointment, they ran more blood work and a urine sample. She has a bladder infection that has moved into a kidney infection more than likely. She is one sick little girl. Her doctor decided to admitt her in order to treat the nasty infection(s) with IV antibiotics versus regular one through her feeding tube.

Maddie has been sleeping since this weekend - she is wiped out from trying to fight off this infection. She is such a little trooper she has even given Steve and I a few coos here and there when we have comforted her. Her eyes remain shut while she does this.

I stayed at the hospital last night - she slept but she moaned throughout the night from the fever. She didn't even move when yet another nurse tried to get an IV at 2:30 AM. They have attempted at least 13 places and no one could get it. Maddie's veins are so buried due to dehydration from the fever. She will be bruised from head to toe tomorrow.

The plan was to take her to the PICU and have one of the doctors put a central line in her. However, they are very busy and were not able to get her in. The next option was to put it in surgically. We called in one other nurse, she was able to get it between her fingers, not the greatest place but it worked! She had a renal ultrasound this morning -we are waiting for the results regarding her kidneys.

The plan is to give her IV fluids to get her levels back to normal, IV antibiotics to treat the infections and see how she responds.

I will keep you posted.

8/26:Maddie's been sick this week. She started getting sick on Thursday, we thought it was just a little cold. We ended up in the ER with Maddie yesterday afternoon with a 105.2 degree temperature. I called the ER to talk to a nurse, she said to bring her in immediately. We gave her Tylenol around 4:00 and arrived at Children's around 4:30 PM. Maddie's fever had dropped to 103.5 degrees. She was extremely hot to the touch, sweating and very sleepy. When we got into the room which was right away (I definitely recommend calling ahead)we noticed she had a rash on her neck, feet and hand. Her forehead was really blotchy and she had red spots on her sides, one on her left and five on her right. The spots weren't large but I think we all thought the same thing... chicken pox.

The Resident who examined Maddie said she was going to order blood work and an urine culture. She said the spots did look suspicious but that her high fever was probably the cause for the rash and the spots. She wanted to see what her white blood count came back as. The blood work came back a little elevated but still within the normal range. She told us to continue giving her Motrin and Tylenol around the clock. When we were discharged about 4 hours later Maddie's temp was 101.8 degees.

We put Maddie to bed when we got home. She's basically been sleeping since last night. She still had a fever this morning, 102.8, so I gave her another dose of Tylenol. Maddie woke up around 3:30 PM for the first time today. She started to get really clammy and she started to sweat again. Steve put her back in her crib, she fell asleep until about 7:00 PM. Steve just checked on her and she still feels really warm, clammy and sweaty. I will call her doctor first thing in the morning to make an appointment to follow up with her primary.

We did have a fun day and a half with Deb and Larry before they left to go back to Seattle yesterday afternoon. We hope they had as much fun as we did during their stay with us! We miss you guys already!

We sure hope Maddie has a better week and shakes this bug she has. Even though she doesn't feel good she is such a little trooper through it all...

Have a great week!

Love,
Steve, Darla and Maddie

Tuesday, August 21, 2007 8:48 PM CDT

Fun was had by all this past weekend! Aunt Debbie and Uncle Larry arrived early Sunday morning (1:30 AM), much later then we expected but they eventually arrived.

We planned a surprise birthday party for Debbie early Sunday morning- she was very surprised! Maddie did great, she was a little angel all day. We had lots of fun and my entire family together for the celebration.

Maddie is still a little sleepy but we continue to work on her medication dose. I'm about to change it again but I held off a little bit so Maddie wouldn't be too crabby this weekend when Deb and Larry were here. I think the rainy weather has played a role in her sleepiness as well.

Maddie has been doing great in therapy, until today, she slept. One of her therapist brought Maddie a new pair of shorts for Maddie to wear for several hours a day. The shorts are supposed to help keep her legs straight so they don't flop to the sides as she always does due to her low tone. The shorts are spandex, they will keep her legs together and her hips loose. They aren't the most attractive shorts but they certainly work for her.

Steve and I had the last two days off, enjoying some time with Deb and Larry. We sure had a great time with them.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, August 12, 2007 9:27 PM CDT

We had a wonderful time at the Lindner family reunion. Maddie was an absolute angel at the reunion and on the way home.

We got to Marshfield around 8:30 PM (much later than we anticapted - I started packing way too late). Around 9:30 when grandma and I were putting Maddie to bed, I realized I forgot the charger for Maddie's feeding pump. Maddie feeds all night which meant the battery wasn't going to last long,we wouldn't have any way to feed her Saturday as well. I looked up a medical supply company in the phone book, called the first one listed, Apria Healthcare. I was very relieved that one, they answered the phone and two, we could get a pump from them that evening. I pick it up and had it running by 10:30! I was only about an hour behind on Maddie's feeding.

Maddie enjoyed all the attention she got from her aunts, uncles and cousins. Maddie was quite the hit with all my cousins as well. We get together every other year for this reunion so most of the them haven't seen her since '05. They couldn't believe how much she has grown and how good she did with all the noise. Maddie actually slept for about 2 hours in Aunt Tissy's arms but after that she was good to go. She even cooed a bit for the crowd.

We are looking forward to this weekend as well. Deb and Larry are coming for a visit. We only get to see them about once a year if we're lucky so we're really excited to see them. The guys will be golfing and the girls will be shopping - can't wait!

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, August 5, 2007 9:04 PM CDT

Maddie had a good week but I think she may be teething or going through a growth spurt. She was extremely tired and a bit lethargic this week. She does appear to be getting a tooth on her right hand side. Maddie's gums are so swollen from one of her seizure meds it's difficult to tell what's going on in there.

I took Maddie to get her hair trimmed yesterday, she did very well. She sat in her Kid Kart and let the girl cut her hair. The girl didn't actually cut it so much as trimmed and thinned it. Her hair was really thick on the sides so she took a little off every where and thinned the sides. It doesn't look any different but it's cooler for Maddie.

We are getting excited for my family reunion this coming weekend. We have the Lindner Family Reunion everyother year and it's so fun to see all my extended family on my mom's side. We can't stay the whole weekend, we will have to come back Saturday night for a baptism at church on Sunday. I have been asked to be godmother for a couple in our church, they had a little girl, Kaitland. I can't wait!

Maddie has a new aide joining the three we have now. Angie, our new aide, will split shift some days with Heidi, Kristina and Sandy. Maddie is much better now but when she was going through her rough time since March the aides decided to start doing half days since it was so difficult to handle Maddie for several hours at a time. The aides really like the split shift so they've kept them. I'm not sure how things will change once/if Maddie starts school.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, July 29, 2007 10:15 PM CDT

Maddie had another great week. We got out for bike rides and yesterday we spent some time at a tractor show with Uncle Tony and Aunt Brenda.

Unfortunately, I lost my purse with the camera in it. I am fortunate I didn't have a lot of money and I didn't have any identification in it, I simply had the camera to take great pictures of Maddie. I'm sad I lost the purse but more importantly the camera with hundreds of pictures of Maddie. I do down load the pictures once a week so I only lost about 6 or 7 from this last week.

I decided I would do a "best of" Maddie this week. These are a few of my favorite pictures of Maddie. I hope you enjoy them as much as I do...

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, July 22, 2007 9:03 PM CDT

Maddie had a great week! We had to increase her muscle spasm medication earlier in the week but I think we're at a good dose that will work for Maddie for awhile.

Maddie attended her first wedding yesterday. She did get a little cranky around 5:00 before we had dinner. We found out when we were giving her 6:00 meds that we missed giving her pain med at 2:00. Once we got back on track she was an angel again. I think she enjoyed dancing with mommy and daddy and Aunt Joey. Everyone was happy to see her and everyone commented how big she is getting.

Steve and I are hoping we will be able to get back to our bike rides and walks with Maddie. Believe me we have all missed getting out of the house and enjoying the summer. This week is suppose to be hot but hopfully cooler by the time we want to go out later in the evening.

We are in the process of looking for a couple more home health aides to train with Maddie. We haven't replaced Trisha's spot yet, and we would like to have at least one more person trained to work with Maddie to fill in when one of the other aides is off. I've been told we should have some candidates soon.

I have taken a month or so off from the school issue. However, it's time to get back to the phone calls and bugging the school administration for a plan of action with Maddie. The last time I spoke to my contact the early part of June she was going to send me their recommendations in writing but I never received it. I will continue to call until we have a resolution.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, July 15, 2007 9:37 PM CDT

We brought Maddie home late Friday afternoon. It is so nice to be home and back in to our routine. Maddie is doing much better, she still has a few moments but we're working on it. We will be able to work on her dosing of the pain meds at home. She is sleeping much better as well.

I'll be working with the pain management team and the rehabilition doctor we'll be working with for the muscle spasms. Maddie is still arching but it's not as much. I'm not sure if we'll ever get her to stop doing that since it's a learned behavior for her. It's her way of telling us she's in pain or she isn't happy with something at the moment. She definitely knows she gets a response when she arches. The doctors say it's her way of communicating she doesn't feel good. She has been trying to tell us for months but we just didn't pick up on the underlying pain issue until this last hospital stay.

Maddie has follow up doctors appointments for the next several weeks. I'm not sure if we'll find the source of the pain but they are sure she has muscle spasms and possibly joint pain. Her primary pediatrician mentioned doing a bone scan to see if it shows small stress fractures that would cause the amount of pain she is in. She said she would look into it if we didn't find anything else.

Maddie had another visit from her friend Sasha. Sasha came into her room, kissed me then jumped up on the chair her owner put by the bed. Sasha started to lick Maddie which she has never done before. Then Sasha attempted to jump onto the bed, something she has never done before either, her owner stopped her. He said Sasha could sense she was in more pain then all the other times she has been with Maddie. Sasha is trying to comfort Maddie the only way she knows how, kisses and laying next to her. I told him Sasha could get on the bed with Maddie but she was having one of those crying moments so we decided not to. Sasha is an incredible dog and is so good with all the sick kids.

We are so happy to have our little angel home. Please keep us in your thoughts and prayers, we're not through the pain issue yet.

Have a great week!

Love,
Steve, Darla & Madeline

Sunday, July 8, 2007 3:29 PM CDT

Maddie is back in the hospital. Steve and I brought her in Tuesday night through the ER. Maddie was extremely irritable, arching, screaming and kicking most of the day on Tuesday with Sandy and Kristina.

Maddie was admitted to the 4th Floor around 1:30 AM Wednesday morning. Steve and I got to sleep around 2:30, we got a few hours of sleep. Maddie had an another upper GI test early Wednesday morning which was pretty much the same as the one they did in May. The radiologist said it was normal for her. Once we were back in her room the doctor said they would keep her comfortable with morphine. Steve and I were able to enjoy a nice afternoon at Tony and Brenda's house.

We switched her formula again on Thursday to one that was 100igested so her GI track wouldn't have to do anything. It didn't seem to help - Maddie remained to be fussy. The doctors said they were going to look at the neurological side of things as well. They requested Dr. Gilles.

Friday was pretty much the same, Maddie was irritable, crying,kicking and arching. I scheduled Maddie to have her G-J tube switched out on Friday prior to the hospitalization. They did switch it out and they decided to do a CT scan as well. Both procedures went very well. Maddie loves the gas they give her for the procedure so she was feeling really good.

We met with Dr. Gilles for two and half hours late Friday afternoon. As you know we love Dr. Gilles, she really knows us so well. She suggested bring the "pain team" on board. She could see Maddie is and has been in pain for whatever reason. We have basically ruled out any issues with her GI track, we're working towards pain management with medication.

I'm not sure how long Maddie will be in the hospital but we're not leaving until we have the pain under control.

Have a great week.

Love,
Steve, Darla and Madeline

Sunday, July 1, 2007 10:15 PM CDT

Not much to update this week. Maddie continues to be uncomfortable with her feedings. I took her to the doctor again on Tuesday but he didn�t have any other options for us. He suggested doing a CT scan to see if something has changed with her brain that would affect her GI track. We didn�t schedule anything but I�m sure we�ll be doing this sometime soon.

Maddie has been sleeping a little better. We have to give her a bump of the chloral hydrate and benadryl during the night but it seems to be helping. The last few nights she�s been waking up around 5:00 AM which is a heck of a lot better than midnight and going back to bed at 5:00 or 6:00 AM like she was doing.

We haven�t been doing a lot of things we would like to do this summer just because Maddie has been so crabby and fussy it�s hard to take her anywhere. In fact we actually had to leave the doctor�s office on Friday because she started screaming and I couldn�t get her to settle down unless I held her upright. You can probably see how big she is getting, it�s difficult for me to hold her when she stretches and arches when she�s in so much pain. Maddie�s aide Sandy was with me, Maddie was not happy for most of the trip home from Minnetonka.

Hope you all have a happy and safe 4th of July.

Love,
Steve, Darla and Maddie

Sunday, June 24, 2007 8:00 PM CDT

Same story different week� Maddie�s tummy issues are getting worse again. We thought the new food was the answer, but after the last two weeks it doesn�t seem to be anymore.

This last week she was up every night around midnight until 4:00 or 5:00 AM, she�d finally fall asleep just in time for Steve and I to get ready to go to work. It�s been one heck of a week and weekend! We�re able to get Maddie to sleep with the choral hydrate we give her at 9:00 PM but she�s not able to stay asleep because her tummy starts to act up and causes her so much discomfort. She kicks and screams basically for hours on end. I�ve talked to her doctor, he recommended doubling the dose of the Mirlax in her formula but that hasn�t done anything but make her more upset, if that�s even possible. I will have to follow up with Maddie�s doctor again this week to see what else we can try.

Maddie had an appointment at Gillette on Friday. We met with a seating specialist to verify if we need to make a change to Maddie�s stroller. Maddie has really out grown the chair�s settings but we weren�t able to get in her in until now. The specialist didn�t think Maddie�s chair would last her much longer since she is basically at the maximum adjustment level for it. However, after measuring Maddie out of the chair and making a few simple modifications to the chair it seemed to fit her much better. The specialist is going to make Maddie a new seat for the chair so Maddie can�t arch so much in the chair like she does now. She definitely fits better in the chair.

I only hope we get to the bottom of Maddie�s tummy issues � Steve and I can�t take much more of her crabbiness�

Love,
Steve, Darla and Maddie

Sunday, June 17, 2007 7:01 PM CDT

HAPPY FATHER'S DAY all you dads, grandpas and godfathers! We've had a great day with the family.

Maddie had a little trouble this week with sleeping and her on going tummy issues. She didn't sleep very well Monday night. I finally got her to lay down with me around 3:30 AM and she fell alseep around 4:30. It felt like I had only slept about an hour before Steve came in to wake me up - oh wait that really did happen. It was a long day at work...

The rest of the week she had been getting up at least twice a night crying but we could usually get her back to sleep except for last night. It happened again, she woke up around 12:30 AM and continued to fuss until around 6:00 this morning when we finally brought her into bed with us, she fell asleep around 6:30. Steve and I got ready to go to church then I got her ready around 8:00 which is about the time we need to leave for church. I don't know how she can get so little sleep and still be pretty good overall.

We got home from church and breakfast with the Fall family around 2:30 this afternoon. Steve and I were beat, Maddie actually let us take a nap for almost 2 hours - believe me we neeeded it! Maddie didn't take a nap but she was quiet enough in her crib that we could sleep.

I hope this week is better then last for Miss Madeline, she is beginning to get a little crabby...

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, June 10, 2007 9:52 PM CDT

Maddie had another awesome week! However, she had another rough Saturday night. We just don�t understand what�s going on with her. She has been great all week and then wham � it�s the weekend and all heck breaks loose. She was up crying all night again, she woke up at 11:30 last night and we finally got her settled down around 6:00 this morning. I shut her feeding off at 3:00 which helped for about an hour and then she started crying again around 4:00 AM. She slept in until around 10:30 this morning.

Maddie had a good week with therapy as well but she only has two therapists this summer. Her school teacher will not be coming since its summer and her other therapist, Teresa, is taking the summer off. I was hoping the aides would be able to take Maddie to The Center so she could go swimming but I think we will have to plan something else since Teresa won�t be working with Maddie. I was looking forward to having Maddie in Summer school but since we didn�t get everything worked out with the district yet she will not be able to attend.

The heat has been a little much for Maddie, I was hoping we could take her out today but she was just too hot. Steve and I talked about taking her for a bike ride but neither one of us had the energy to do it today, we�ll have to get her out this week.

Maddie had a doctor�s appointment with her GI doctor on Friday. He said she looked really good and was pleased she was doing so well with the new formula. Maddie slept on the way to the appointment, during the appointment and half way home. When she woke up she was as happy as could be. Steve and I love to see her so content which makes these crying episodes so strange.

Have a great week!

Love,
Steve, Darla & Maddie

Sunday, June 3, 2007 9:31 PM CDT

Maddie had an awesome week but had a little trouble with her tummy again this weekend. Maddie�s trouble started Friday night that lasted until noon on Saturday. She was good in the afternoon but started fussing Saturday night until early this morning.

Maddie woke up around midnight and started crying out every 15 minutes or so whenever she had a wave of pain. I got up around 3:00 AM (Steve and I were taking turns) to take care of her and noticed how distended her tummy was. Her diaper was completely dry and her breathing was very distressed. I stopped her feeding immediately, we got her up to help ease some of the pressure on her tummy. We gave her a doze of Miralax which is like a laxative but not. Her tummy continued to churn, I couldn�t believe the noises it was making but worse then that was how it felt when I touched it. It felt like it was turning inside out. Steve and I debated if we should take her in to the Emergency Room again but we decided to wait it out with the medication. Maddie�s breathing returned to normal and she seemed to calm down once we held her. She finally fell asleep around 5:00 AM or so. We put her back in her crib a little before 6:00 AM. The medication kicked in around 7:00, she was much better after that. I started her feeding at noon, she woke up at 1:00, and she was very happy and content.

We were suppose to be in the Robert�s Good Neighbor Day�s parade again this year riding on Tony and Brenda�s wagon. We didn�t want to risk having her in the parade if she was going to be fussy so we opted not to go to the parade. As it turned out she was great in the afternoon until about 5:00 when she started to get fussy again. The parade ended at 2:30 so she would have been great! Oh well there is always next year. We had a great time at Tony and Brenda�s house this afternoon anyway.

Maddie and I had a great visit with Sister Jane yesterday at the Monastery. We met Sr. Jane about a year ago when I was taking Maddie to the chiropractor on a regular basis. She is a regular patient as well so we ran into each other on a couple occasions. Sr. Jane became very attached to Madeline from the get-go. Sr. Jane has had some medical challenges from birth and is an inspiration to us as well. We had a lovely time talking and getting to know each other better. We definitely will be back for more visits.

I will be talking to Maddie�s doctor again this week, I hope he can give us some other options to try for Madeline. It�s so hard to watch her go through these episodes of pain when they hit.

Have a great week!

Love,
Steve, Darla and Madeline

Monday, May 28, 2007 6:49 PM CDT

Maddie is doing much better. We had a rough Wednesday, Thursday and Friday with Maddie, she was basically crying all night and sleeping most of the day.

Steve was talking to Dr. Gilles and another GI doctor on Friday to try to get a plan pulled together for the weekend. The GI doctor prescribed a new formula which is partially digested already so Maddie's system wouldn't have to work so hard. Steve picked it up Friday night and by Saturday she was feeling much better. She started to coo and smile in the morning and was very content by the afternoon. We had the same experience on Sunday and today. Maddie still has some pain which comes and goes but for the most part I think switching her formula did the trick. I'll follow up with her GI doctor this week to make sure we are doing everything we can for Maddie.

Here is an update on the school situation. I called a meeting last week with the assistant district manager and the manager of the agency we go through to get our aides. I had scheduled it for this past Friday but since I was out of the office for three days I was unable to make the meeting myself. I called Barbara and Jeanie and asked them to keep the scheduled meeting and to meet without me. I told them I wanted them to come up with a resolution and a plan of action of what needs to happen for Maddie to attend school. They did have the meeting and they came up with some options for the next school year. I asked Jeanie and Barbara to put everyting in writing and I would like have all three of us sign it so we don't have to go through this again in September. I gave them a week to get the documents to me.

On a happier note - We had a wonderful relaxing weekend which is something we desperately needed. We spent the day with the Fall side of the family. Maddie was crabby for awhile but settled down after a bit. It was just nice to get out and see the family.

Hope you had a great weekend!

Love,
Steve, Darla and Madeline

Sunday, May 20, 2007 3:39 PM CDT

5/23 UPDATE: We are home. We got home last night but Maddie continues to have issues with her feedings. The tests all came back normal so they basically said there isn't anything mechanically wrong with the GI track. Maddie was fussy in the hospital as well so we decided we would rather have her at home in her own surroundings then having her getting more and more stressed out in the hospital environment.

We're running on empty at this point, I've basically had about 3 hours of sleep the last five days and it doesn't look like it's going to get any better. We're working with Dr. Gilles for some creative solutions since she is the one doctor we really love and she tends to think outside the box when it comes to treatment. I just wish we could pinpoint the issue and deal with it...

5/22 UPDATE: Maddie is still in the hospital and will be staying the night again. The doctor would like to do an Upper GI and if needed a scope test tomorrow to see what's going on inside of Maddie's track since the x-rays and ultrasound have come back normal.

Maddie has been fussy and irritable again since we started feeding her yesterday afternoon.

Maddie is in the hospital. Steve and I ended up in the ER this morning around 2:30 AM with Maddie screaming and crying most of the night. She was admitted to the floor around 6:30 AM. Steve and I are exhausted but Maddie is resting comfortably.

Maddie's tummy issues had gotten worse this week. I took her to the doctor on Friday but she was actually pretty good when we were there. The doctor thought it could be a problem with her stomach mobility and changed the dose to give it to Maddie everyday instead of on a as needed basis. We were there for about 45 minutes.

Yesterday was Maddie's worse day. SHe cried most of the day and arched. We were suppose to go to Seth's graduation party but I stayed home with Maddie and Steve went. Maddie continued to have a horrible night. She finally fell asleep around 9:00 but woke up screaming around 12:30 AM. Steve and I tried everything to calm her down but we couldn't. I stopped her feeding around 1:00 which seemed to help but not completely. We headed to Children's around 1:30 AM. After we got Maddie in the car she seemed to settle down but started crying again when I started the feeding.

Maddie has had several tests done already and all of them are coming back normal which is a good thing. We still don't know what's causing her so much pain but we have ruled out an obstruction, liver or pancreas issue, her feeding tube is in the correct location and all of her blood work is coming back normal. Yet again Maddie has stumped the doctors...

I'm heading back to the hospital to stay with her tonight. They will try to start the regular feedings tomorrow and see how she tolerates them. I hope we get to the bottom of what this is all about!

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, May 13, 2007 9:29 PM CDT

HAPPY MOTHER'S DAY to all mothers, grandmothers and godmothers. We had a wonderful day and a great weekend. I couldn't have asked for anything better.

Maddie has been having some difficulty with her tummy. She seems to be extremely uncomfortable at times and other times she is prefectly content. I will be calling her doctor to get her in this week if possible. We're just not sure what it is but it appears to be getting worse instead of better.

Maddie had a doctor appointment on Friday with a Orthopedic doctor. I mentioned this months ago, the appointment was scheduled back in February but I had to cancel and reschedule several times due to one thing or another. Anyway, we had the appointment and the doctor took an x-ray of her hips to check to see if they were alright. He said Maddie was perfect, her hips are perfect and so is her spine. Although you wouldn't think this would be true, but her low tone throughout her body actually helps her hips and spine stay aligned. Go figure!

No word from the school district this past week. They will hear from me tomorrow and the day after that and the day after that if I don't get a straight answer out of them soon.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, May 6, 2007 7:23 PM CDT

We are all getting used to Maddie's new hair cut. It does have a mind of it's own at times. Kristina, Sandy and Trisha are also learning to work with it. I'm liking it more and more as it is curling more and more since last week.

I spoke to the Assistant District Manager of the Hudson school district this week and basically told her I wanted to have an answer by the end of this week or I was taking the matter up with the State. She said she is working with the State and they are not sure what department is responsible for the situation. She said she feels like she is getting the run around from them as well. I gave her a deadline so I'm hoping they will step up to the plate.

We took Maddie out for another bike ride but she didn't have as much fun the second time as she did the first. We will just have to ease into it like everything else we have to do with Miss Madeline. We thought for sure she would enjoy the ride but it may have been too breezy the night we took her. We did put the plastic cover on for the second trip around the block but that didn't seem to help she was too upset already.

We are looking forward to heading to Marshfield this coming weekend. We haven't been home for a long time. We will be celebrating Mother's Day with grandma Tessie and the Merkel side of the family. It should be a lot of fun!

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, April 29, 2007 7:36 PM CDT

The hair cut experience was a disaster! We donated her hair to Locks of Love but the actual hair cut was much shorter than I thought it was going to be. The curls are gone but she still has a wave to her hair. I was extremely sad Wednesday night when we did it but I�ve moved on, it�s only hair and it will grow back. I only hope the curls come back as it grows out. One thing for certain she is definitely cooler, we had her outside a lot today and she wasn�t as warm as she would have been with her long hair.

We are still waiting for the school district to decide what to do. They are basically working it out among themselves. They haven�t reached a decision of who should be with Maddie during the time she is at The Center attending therapy in a school setting. Quite frankly I�ve had enough of it, I just want everyone to come to a decision and go with it.

We actually took Maddie for her first bike ride today. Steve and I were going to buy a Burley last year but decided we shouldn�t make the investment if it wasn�t going to work for Maddie. We borrowed our neighbors who don�t use it anymore since their youngest is now 7 and can ride a bike. Steve hooked it up to his bike and we put Maddie in. She fit pretty well but we had to add a few more blankets to make sure she was in nice and snug. Maddie actually really liked the ride. Steve said she was cooing when they went down a larger hill in our development, I think she liked the breeze. Anyway, I think we�ll be taking Maddie for bike rides the rest of the summer if she continues to like them as much as she did tonight.

As I stated earlier we had Maddie outside today while we made a few stops at nurseries to get ideas to add to our landscaping. We weren�t out very long but when we got home I went to change Maddie�s diaper, I noticed she had a tan already. You can see the marks on her feet from her sandals and a line on her legs from her shorts. I still can�t believe how quickly she tans, she doesn�t burn at all she just tans.

Have a good week!

Love,
Steve, Darla and Madeline

Sunday, April 22, 2007 7:59 PM CDT

Maddie had a much better week sleeping. I think we got her past waking up at 4:00 AM everyday but we�ll see how this week goes. She was more alert this week and her therapy sessions were much better as well.

I am still working on the school situation. Apparently, there is a difference according to the State and the District what the �School� session is categorized as. The State provides Maddie�s aides, who go wherever Maddie goes. However, since Maddie is three now and will be going to Pre-School that puts her in a different category which would be supported by the District. It all comes down to who will be with Maddie while she is at �school�. Maddie�s aides can go with her if its called therapy, but since its called school, where she receives therapy, it is treated differently. I have been working on this new snafu in terminology for two weeks and it doesn�t look like it�s going to be resolved any time soon. I�ve been calling my contact everyday trying to get to the bottom of it.
If I don�t get an answer this week, I will be calling the head of the District to voice my disappointment with the situation.

Maddie has been doing really well overall. She is squirmier these days. It�s difficult to hold her for any length of time without breaking into a sweat yourself. She has always squirmed by lifting her butt and arching. Ironically, she is extremely strong when she wants to do something you don�t want her to do. She can push herself so hard against you it feels like she is going to break your arm sometimes. By the end of the day yesterday I felt like I had been in a ten hour wrestling match with a three year old � she won. At one point I had to call Steve in from outside to take over, how pathetic is that?

One thing I�ve been dreading but knew the day would come sooner than later has arrived. Maddie needs to get her hair cut. You can not imagine how many comments I hear a day about her beautiful hair. I absolutely love it! Unfortunately, Maddie can not regulate her core body temperature very well and she gets extremely overheated very quickly which causes her to become fussy which causes her to become even warmer than she already is. We have been dealing with her body temperature since she was born but it is becoming more and more of an issue for her. I think it would help tremendously if we get her hair off of her neck. I am not looking forward to it but I think we have to do it to help Maddie. There is a salon in River Fall�s that donates the hair to Locks of Love, which is a great organization that helps children with cancer. They create wigs for kids who are going through treatment and have lost their own hair. I am extremely sad I have to cut her beautiful hair but it�s for the best.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, April 15, 2007 8:09 PM CDT

We received the green light from Maddie�s pediatrician to attend school. We are working on the schedule to cover the shift changes and I believe the school district has set up the schedule with the bus company to pick up Maddie. It�s all falling into place. It won�t be long and Maddie will be going to school.

Maddie�s cold is still kinda hanging on. She is good during the day but has a little more trouble with sneezing and coughing at night. She has gotten into this habit of waking up at 4:00 AM and not being able to fall back asleep. Steve and I take turns getting up but it�s making us more and more tired during the week. I�m hoping this little habit ends soon.

We had an enjoyable visit yesterday with my friend Lisa and her family from Dallas. Lisa and I used to work together and remain close friends. I also got to see another friend whom I haven�t seen in several years and his new baby as well. Lisa�s little girl, Alyssa, who is 2-1/2 loved Maddie and she especially liked her special stroller. She even said Maddie had a tail, she was referring to Maddie�s color coordinated wrapped extension. We had a wonderful time.

Today we attended a benefit for our sister-in-law Laurie�s brother, Barry. They had an incredible turn out and Steve and I went a little crazy with the silent auction and raffle prizes. Although the place was packed Maddie was content and very happy. The noise never got to her.

We hope Maddie�s health continues to improve so she can attend sooner rather than later.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, April 8, 2007 7:24 PM CDT

Happy Easter! It wasn�t the best one for us this year. All three of us are sick with a cold so needless to say Maddie and Steve stayed home last night while I attended our Easter Service and breakfast with the Fall family. We celebrated the day with the Fall side as well, Steve and Maddie are doing much better today.

Madeline had her post-op appointment on Wednesday. Dr. Malone was very pleased to see how well Madeline has recovered. She was also happy to hear that we returned her CPAP machine and her oximeter monitor. She is thrilled with how successful the surgery was for Maddie, another story for her records�

We are still working on the schedule for the aides to cover Maddie when she starts school. I have a meeting with the company Maddie�s aides come through this Friday to confirm they have everything covered. It wouldn�t normally be so difficult but with Heidi on maternity leave and two people splitting her shifts and their own shifts it gets extremely difficult to make sure all the hours are covered.

I�m hoping all of us get over this cold and we�re back to feeling good again in no time. Maddie hardly slept at all Friday night and didn�t sleep much yesterday. Steve and I have been running on little or no sleep the whole weekend, I hope Maddie can cut us a break and sleep tonight.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, April 1, 2007 6:48 PM CDT

Maddie had another great week. I think she is starting to come down with a cold today but she doesn�t seem to be bothered by the constant sneezing. She started the sneezing this morning at church and it�s gotten worse during the day. I�m hoping it doesn�t get any worse then just a little cold.

Grandma Tessie came for a short visit this weekend. Maddie was very content the days she was here, which makes the visit for grandma that much more enjoyable. She loves to hold and snuggle with Maddie, the aides don�t have much to do when grandma is doing all the holding but they don�t mind the break.

We met with a new doctor, a rehabilitation specialist from Gillette on Friday. We discussed the adjustments that need to be made to Maddie�s wheelchair which she has outgrown to some extent. We will meet with the rehabilitation team at Gillette so they can alter her chair to fit her better. They may also add adaptive pieces to the chair to help Maddie keep her knees together and her head mid-line instead of always to the right.

The doctor also discussed using alternative methods to help lower Maddie�s higher tone areas such as her hamstrings and her arms. Maddie has low tone in her trunk (head down to her abdomen) but she has high tone in her legs and arms which makes it difficult to dress or move Maddie when she doesn�t want to do something. Maddie�s strength that she does have it not the good kind it�s considered rigid or spastic and she postures to the right and tightens up. Steve and I will meet with the doctor again to discuss the options in greater detail.

Maddie�s therapists are gearing up for the end of the month when we should get the green light for Maddie to attend Pre-School. Since Maddie will be attending the afternoon class and the aides will be accompanying her to school we have to get the schedule worked out of who works on what days. I will talk to Maddie�s pediatrician this week to get the approval for Maddie to go, her therapists can wait! Steve and I are getting excited as well.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, March 25, 2007 9:11 PM CDT

Maddie�s equipment has left the building� We sent back the CPAP, the external alarm and the oximeter which we hardly ever used because the machine settings were set so low for Maddie that the alarm constantly went off. I certainly won�t miss them and I bet Aunt Kris, Aunt Diane and Aunt Denise won�t miss them either. They had to deal with those darn machines when they have stayed with Maddie a few times.

Maddie�s slowly getting back to normal. She still has a little problem sleeping a full night. She has been getting up a few times a night but usually falls asleep after a dose of Tylenol or Motrin. I think her tummy is still buggy her which is more apparent at night then during the day. She is more consolable during the day but we have been having a heck of a time at night this past week.

We are getting ready for a great spring, Maddie almost got to go for a walk today but it started to storm so no walk. I haven�t trained Kristina or Sandy how to take Maddie for a walk but I�m hoping I can give them a quick lesson so they can take her out this week, it�s supposed to be nice.

We�re also getting ready for Easter. We can�t wait to take Maddie to our Easter service again this year. Hey aunt Neesie do you want to join us this year? Have you recovered from last year yet? As you recall our Orthodox celebration is Saturday evening from 11:00 PM -3:00 AM. Maddie made it to 1:00 AM.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, March 18, 2007 8:37 PM CDT

Maddie is feeling better each day. She had a really good yesterday, back to her old happy self. She was smiling and cooing away. She was great today too.

I think we are over Maddie�s constipation bought as well. She isn�t arching and crying as much as she was doing last week. Maddie�s new aide, Sandy, who is taking Heidi�s place while she�s on maternity leave is a licensed massage therapist. Sandy has been massaging Maddie�s tummy along with her arms and legs and head to help make her more comfortable. It must be working because Maddie has been taking power naps, up to three hours this week. I�m just wondering when Steve and I are going to get to enjoy that perk...

Maddie�s therapy sessions were much better this week as well. She was able to concentrate on the exercises more then worrying about how much her tummy hurt. Her therapists are very happy to see how well she is doing and how much better she is breathing. They were very concerned how much Maddie was working to breath before the surgery. They too can�t believe the difference with her.

Steve and I are still not used to how quiet she is � I still have to watch her chest go up and down just to put my mind at ease. One of Maddie�s aides, Kristina, who watches her Friday nights said she had to check on her at least 20 times just to make sure she was breathing. She said it freaks her out that Maddie is such a silent sleeper now. She told me it was going to take awhile before she was comfortable with the �new� Maddie.

Maddie�s seizures have also changed since her surgery. She has gone days without having one and will have one or two other days. I�m not sure if it�s because she is on Tylenol with codeine or if it�s the fact that she can breathe and doesn�t have to panic that she can�t breathe? We are keeping a close eye on this situation.

I�m having our equipment supplier pick up the CPAP and the other machines she doesn�t need anymore. We�re so happy to get rid of all of them.

Maddie hasn�t been able to keep the pacifier in by herself as much this week but we will continue to work with her.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, March 11, 2007 6:49 PM CDT

Maddie came home Wednesday and has been doing great the rest of the week. She is a little crabby at times but that is to be expected. We were giving her Tylenol with codeine on an as needed basis throughout the day, but now she is getting just plain Tylenol every four hours. Maddie is a little constipated we think it�s from the codeine, we are hoping she will be back on track soon. She appears to be in pain at times and other times she is just fine.

Maddie will have follow up appointments with Dr. Malone and her regular doctor just to make sure everything is alright and her scars are healing correctly. She does seem to be handling everything very well. She has more secretions but she has been dealing with it remarkably. In fact if you look at the pictures you should be able to tell what she has been able to do since the surgery. We are extremely happy how much her breathing has improved since the surgery. She doesn�t need the CPAP anymore, her breathing is so silent I have to watch her chest go up and down to confirm she is indeed breathing. It�s amazing.

Thank you again for all of your thoughts and prayers. Our little angel never ceases to amaze us.

Have a great week.

Love,
Steve, Darla and Maddie

Sunday, March 4, 2007 8:23 PM CST

UPDATE 3/6: Maddie continues to do great - in fact she is doing tremendous! They are moving her from the PICU to "The Floor" this afternoon. Dr. Malone wants her to be monitored one more evening and if all goes well she may be home tomorrow!. Everyone is thrilled she is doing so well, we just can't believe it.

Thank you again for all the well wishes!

UPDATE 3/5: Maddie is out of surgery and recovery. The surgery went very well, but she's a little fussy right now. We are getting her settled in the PICU at the moment. She is breathing on her own, her heart rate and blood pressure are very good. We are hoping the tylenol they just gave her will help relax her so she'll take a little nap. Steve and I are happy she is doing so well. Grandma Sharon and Father Chris are with us as well.

Thank you for the prayers and continued support!

Tomorrow is the big day - Maddie's surgery. We are very anxious to have this procedure over with. I will be updating Maddie's webpage tomorrow after she is out of sugery and in the recovery stage. If all goes well we are hoping to have Maddie home Thursday or Friday.

We had a photographer to our house today to take some candid pictures of Maddie, Steve and I. We had a lot of fun just doing what we normally do with Maddie and then some. Maddie did great and I think she even captured a few smiles to boot. We should be getting the DVD with the pictures in a week or so. I can't wait!

Please keep the three of us in your prayers this week - we pray all goes well tomorrow and her recovery is speedy.

Love,
Steve, Darla and Madeline

Sunday, February 25, 2007 4:59 PM CST

Maddie�s had a great week. She did not have Strep which we were happy to get that result. I think she maybe had a bit of cold the week before, she had a much better week this past week. She was smiling and cooing again which we miss when we don�t see it.

Maddie�s school teacher worked with her this week. Kristina said she did a great job working with Kristin (teacher) and Teresa. Maddie worked out hard but then took a little nap towards the end of the session. Hopefully they will have another great session this week.

Our search for another aide has been slow. We met with someone last week but knew it wasn�t going to work after the first meeting. We were supposed to meet another young woman yesterday but she never showed � looks like it�s not going to work out with her either. We met someone today who should work out just fine if she decides to stay with us. The agency I go through to get the aides are on the phone with me it seems like every hour updating me who they have coming out next to meet us. I�ve been told we�ll have someone very soon�

This week Maddie has a pre-op appointment before the surgery next Monday. I�m getting a little nervous for the surgery but know she will do fine. Steve will be taking next week off to be with Maddie if she remains in the hospital longer than a couple of days. Hopefully if all goes well she�ll be home on Wednesday or Thursday and won�t have to stay any longer.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, February 18, 2007 8:13 PM CST

Maddie had a good week. She was extremely cranking in the morning but was much better in the afternoon and evening. I think Kristina has gotten the brunt of Maddie�s crabbiness because she gets her up in the morning when she arrives. Maddie likes to lie around and hang out � ease into her day. She doesn�t like to get up before she�s ready.

I am in the process of interviewing a new aide to cover Heidi�s maternity leave in April. Heidi is not sure how long she will be gone but she definitely wants to come back to Maddie. The new aide will split her time with Kristina and Trisha. Trisha only works a couple Saturdays a month because of college. She graduates this spring and will more than likely get a job right away � being a nurse. I hope we get to keep her even if she can only cover few times a month. We�re very fortunate to have the wonderful aides that we do, they are so good to Maddie and a part of our family.

I ended up getting strep this week and had Maddie tested on Friday. My culture actually came back negative Tuesday evening when I went to Urgent Care, but the clinic called me Thursday to tell me the 24-48 hour test came back positive after 30 some hours. I�m on an antibiotic and feel much better. Maddie�s test came back negative but the doctor who is her old doctor from Hudson Clinic wrote a prescription to cover her just incase she spiked a fever yesterday or today. She hasn�t changed since Friday so I didn�t have to fill it. Her old doctor was very happy to see her, he couldn�t believe how big she is and she was very good for him. He checked her ears which were clear and he checked her throat. He was in complete agreement with Maddie�s surgery, he said her tonsils are very large and irritated and they should come out.

Maddie�s school teacher contacted me Friday and we discussed when she would start coming to our house to work with Maddie. She will be coming on Thursdays and will more than likely come when Teresa her OT therapist is here. I think they will work very well together, it should be a great session. I told her about Maddie�s surgery in two weeks and based on Maddie�s history of recovery time she may start this week or she may wait until after the surgery.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, February 11, 2007 8:56 PM CST

The appointment with Maddie�s Ear Nose and Throat doctor went well on Wednesday. We have decided to go ahead with the surgery, it�s scheduled for March 5th. Steve and I are nervous about the surgery but we know it�s the best thing for her. Hopefully she will not get sick prior to the surgery so we won�t have to reschedule.

We had a great weekend celebrating Maddie and Hanna�s 3rd birthday with the Merkel side of the family. We were suppose to go to Marshfield but decided it would be better if the gang came to our house. The cousins had a great time playing with Maddie�s toys especially the guitar and the drums. The marching band was quiet delightful and Maddie loved to hear them play and laugh.

Maddie had a better week but was still a little crabby towards the end. She has completed the round of antibiotics so her tonsils have bothered her a bit more. I�m not sure if her doctor will prescribe another round or if Miss Madeline has to tough it out until the surgery. She was pretty miserable this morning before we got her ready for church. Thankfully, grandma and Aunt Diane were able to help out and hold her to settle her down.

Happy Valentine�s Day! And Happy Birthday to daddy too!

Have a great week.

Love,
Steve, Darla and Madeline

Sunday, February 4, 2007 7:39 PM CST

Madeline had a better week overall. She was still a little crabby but she slept much better which helped her during the wake hours. We meet with Dr. Malone on Wednesday to discuss our options for Maddie�s swollen tonsils.

Maddie had some special guest this weekend. Aunt Tissy, Aunt Diane, Aunt Neesie, Grandma Tessie and Cousin Emily came up this weekend to take care of her. Steve and I were able to get away yesterday for a fun filled day with his cousins and their families. We were suppose to go ice fishing but due to the weather we canceled that outing and decided to go bowling. We had a blast! I must admit I�m very sore today, I�m not really sure what muscle groups I was using yesterday but they are not happy with me today. Steve and I stayed at a hotel and came home this afternoon. We had a great time but of course I missed Maddie and couldn�t wait to see her when we got home. She did great with the aunts, grandma and Emily � they had a fun time as well.

We�ll be celebrating Maddie and Hanna�s 3rd birthday this coming weekend. I�m not sure if we�re traveling to Marshfield or if the gang is coming up here. We�ll see what
kind of week she has. I�m hoping she has a good one � Heidi and Kristina are getting a little tired of Miss crabby pants�

Another shout out to Uncle Dan and Aunt Neesie � Hope their team wins - Go Bears!

Have a great week.

Love,
Steve, Darla and Maddie

Sunday, January 28, 2007 6:32 PM CST

Maddie ended the week developing an ear infection, almost a double ear infection. Her right ear was infected and her left was starting to show signs of an infection. I think we caught it early enough and got her on antibiotics before her left ear became a full blown infection. I believe this is why she was so crabby this week as well.

She had a horrible day on Tuesday which was the day after she completed her dose of the steroids, she was crying most of the day and nothing was helping to console her. I called and spoke to her pediatrician�s nurse asking what I could do. Her doctor would only prescribe the steroid for two more days until I could get Maddie into see her Ear, Nose and Throat doctor. I was able to get Maddie in to see her on Thursday. Dr. Malone was not happy to see us, she saw the x-rays of Maddie�s throat from last week and was very disappointed with what she saw on them. The appointment started out with the discussion of the adenoids growing back. She said it was highly unlikely they would have but this is Maddie we�re talking about so anything is possible. She was also discouraged to see the size of Maddie�s tonsils and what they are doing for Maddie respiratory wise. She started by checking in Maddie�s ears and discovering she had one ear for sure almost both ears infected, her nose was red and irritated as well but she didn�t say it was an infection at all. She checked her throat and couldn�t believe how big her tonsils were. You know it has to be bad when an Ear, Nose and Throat doctor says �Oh my gosh��

Dr. Malone used a scope to look down Maddie�s nose so she could take a better look at the actual adenoids, tonsils and throat area. She was pleased to see her adenoids had NOT grown back as seen on the x-ray, she said it must have been the way she was crying and holding her head back that made it appear the adenoids had grown back. I was very happy to hear this news, however, the fact that her tonsils are so big is yet another issue we have to deal with. Dr. Malone prescribed two weeks worth of antibiotics to clear up the ear infection and anything else that may have been with her sinuses. She wants to see us in two weeks to see how Maddie is doing and discuss what we can do about her tonsils. Madeline�s metabolic doctor needs to talk to Dr. Malone about the issue of surgery and if it�s even an option for Madeline at this point.

My meeting with the Hudson School District went very well this past week. They are all very excited to have Miss Madeline (that�s what they call her) in their program. The meeting was really about getting the group up to speed on Maddie regarding her health issues, her limitations and our goals for her. I stated that our main goal is just to have Madeline with other children. They realize Maddie isn�t going to be able to do a lot of the things the other kids will be doing but they understand how important it is to have her around the children. They promised to have lots of sing-along time just for her.

Have a great week.

Love,
Steve, Darla and Madeline

Sunday, January 21, 2007 5:28 PM CST

Madeline has had a rough week with her cough/cold. She caught one the Friday after her birthday but it seemed to be getting better until this week. It started to get worse again on Thursday the day she was suppose to be admitted to Children�s/St. Paul for her 24 hr. EEG. They ended up canceling it because of her cough. Due to the sensitivity of some of the patience in the ward she would have been admitted to they can not take any chances of introducing a �bug� to the ward. I was disappointed but completely understand why they had to do it.

I ended up getting Maddie in to see her pediatrician Thursday morning just to make sure if they rescheduled the EEG within the next week Maddie would get a clean bill of health. Her doctor listened to her lungs which sounded great, she checked her ears and her nose they were good too. When she looked at her tonsils she stated they were swollen but didn�t look infected, same as when I took her to see the doctor back in December. Dr. Chawla ordered an X-Ray of her neck and chest to rule out anything. Her lungs were clear but her tonsils and adenoids are extremely swollen. Her adenoids were removed in April 2005 and they have grown back, bigger (or so she thought) then before they were removed. Dr. Chawla said Maddie is having such a hard time breathing because her throat is closed off due to the swelling of her tonsils. I saw how big they were Thursday when we got back from the doctors office. Maddie was crying so I had a chance to look at her throat, her tonsils looked like grapes � they were huge. Dr. Chawla prescribed a steroid to help with the swelling, so far it has helped but this is not a long term fix. We will have to discuss our options and get a plan together with Maddie�s Ear, Nose and Throat doctor. I should hear from her this week.

I meet with the Hudson School District tomorrow, I�m anxious to learn how they plan on transitioning Maddie into their program. I have received numerous phone calls from teachers, directors, nurses and even a school Psychologist (not really sure what his role is with our case) asking questions about Maddie. This meeting will be interesting to say the least.

I hope this week is better for Madeline � she sure was crabby last week.

A big shout out to Uncle Dan and Aunt Neesie - their Bear's are going to the Super Bowl!

Love,
Steve, Darla and Madeline

Sunday, January 14, 2007 10:22 PM CST

Happy Birthday Maddie! She had a great birthday on Thursday and we had a great time with the Fall family today for her birthday celebration. She received so many wonderful gifts for her birthday. I still can�t believe she is 3 � she is getting so big.

We didn�t have our meeting with the Hudson School District on Thursday due to the fact that so many of the participants were out ill. We�ll have to reschedule in a few weeks. I look forward to sitting down with the team to work out our plan for Maddie.

Maddie�s new aide, Kristina, has been training with Heidi and Trisha and has been doing a great job. She jumped right into things on Friday when she was taking care of Maddie with just me here. She has had experience with G-Tube feedings and administering medications which really helps. I was impressed how quickly she has caught on to Maddie and her crazy schedule.

A great new opportunity has presented itself that I am really excited about. I have been asked to join an Ethics Committee at Children�s Hospital. Our goal is to create policies for the hospital which deals with the Ethical side of the care/treatment a child receives. Steve and I have personally met with the Head of the Ethics department last year when we were faced with critical decisions that would impact Madeline�s life. The head of the department is the one who I will be working with along with about 20 other individuals who make up the committee. I will be the new kid on block but certainly not afraid to voice my opinion � one of the reasons Don asked me to join.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, January 7, 2007 7:17 PM CST

We had Maddie�s GJ tube switched out on Tuesday. I called Children�s Hospital early Tuesday morning to schedule the procedure with the Radiology Department, I told them it was sort of an emergency but not a life threatening emergency with her tube. The woman asked who the procedure was for � I said Madeline Fall and she said, �Miss Madeline� I�ll call you back. She called me 5 minuets later and told me they could fit her in at 11:00. Once again her �fame� at Children�s got her in the same day, she just happens to be a favorite of the Radiologists too.

Maddie has been crabby on and off this week. I�m not sure if it had anything to do with the GJ tube situation or what but she has certainly been keeping her aides and Steve and I on our toes. She actually woke up this morning about 4:30 AM screaming and crying, this lasted until 8:00 AM. I finally got her to sleep only to have her wake up screaming and crying a half hour later. She had to be held most of the day with her pacifier because when we put her down to actually do stuff around the house she started crying again. She finally took a little bit of a nap this evening around 6:00. Hopefully she will sleep tonight.

I meet with the Hudson school district this week to discuss our plans for Madeline. Maddie technically graduates from the Birth To Three program on Thursday, which is her 3rd birthday. The school district will be providing the teacher and the therapists to work with Maddie. However, because Madeline is such a Special Needs child and requires so much individual attention the school district will be contracting with The Special Children�s Center where her therapists come from now. I�m very excited about this news, I was very concerned of how Maddie would react to new therapists. She has been working with Nancy, Margaret and Teresa for three years.

We will also discuss the plan for her teacher to come to our house until she can go to school at The Special Children�s Center in April. I met with Maddie�s teacher last month, she was happy to finally meet the little girl everyone at The Center has been talking about. She will be doing a lot of the same things the teacher from the Birth To Three program did but will add some other things too. They will make the necessary adjustments to our plan once they start working with Maddie if they need to.

I can�t believe Maddie will be three on Thursday � I have no idea where the time has gone. We hope and pray she stays healthy this year!

Have a great week!

Love,
Steve, Darla and Maddie

Monday, January 1, 2007 6:57 PM CST

HAPPY NEW YEAR! We hope all of you had a wonderful safe New Year's Eve - we did. We enjoyed spending the day with Steve's family along with his aunts, uncles and cousins at the Fall's Christmas party.

Maddie had a great week sleeping which means she had great days as well. She still has a bit of a cough that wakes her up sometimes but for the most part she just falls back to sleep. Maddie is sleeping so well at night she has been waking up around 5:00 AM crying and wanting to get out of bed to start her day. She usually falls back asleep after a half hour or so but Steve and I are getting a little tired of this early morning routine she has gotten herself into.

They finally scheduled Madeline's 24 hour EEG at Children's. It is scheduled to be done January 18th through the 19th. I will stay with Maddie at the hospital. Hopefully we will capture the seizures Maddie is presenting, she has two types that are obvious but one movement that is questionable. We're not sure if it's a seizure or a movement disorder. Once we get the results of the EEG Dr. Gilles will make the necessary adjustments to her medications.

Madeline's GJ tube sprung a leak yesterday but we couldn't figure out why. Today I discovered the port where the extension clicks into is cracked and is leaking out around it. I was concerned she was not getting her medications so we switched the feedings and the meds to her "G" port which goes into her stomach. She hasn't had anything in her stomach for about 9 months. She seems to be tolerating it very well but we'll have to get it switched out this week. In the meantime, Steve, being the engineer and handy man that he is fixed it with a rubber band and two twist ties. I'm not sure what the doctor will say when they replace it but I'm sure he'll give Steve a nod of approval for the functionality of his repair job...

We have a new aide starting this week. Her name is Christina, we met her this past week and she just adores Madeline. She will shadow Heidi and Trisha this week and next then she'll be on her own with Madeline and me. She seems very excited and a little nervous to take care of Maddie, we're just so excited to finally have a replacement for Shawnda who left us in November.

Steve and I can never thank everyone of you enough for your continued love, support and prayers! We love you all very very much!

Steve, Darla and Madeline

Monday, December 25, 2006 8:12 PM CST

Merry Christmas! We hope you all had a wonderful holiday - we sure did. We had a joyous Christmas celebration with the Fall family. Once again Madeline received great gifts from the family.

Madeline actually fell asleep last night when we started to open up the gifts at Grandma and Grandpa Fall's house, she woke up after I opened her gifts. She fell asleep again this morning when we started to open up the gifts from Santa. I don't think she's really into all the Christmas hoopla. She's nothing like her mother... :)

Maddie still has a touch of her cold but she is doing well overall. She has been sleeping great except for last night but I think it was due to all the excitement of the evening. She woke up several times throughout the night but let us sleep in this morning. Hopefully she will get over this cold soon.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, December 17, 2006 5:50 PM CST

We had an absolute wonderful weeekend with the Merkel side of the family. Maddie was feeling much better since we started her on antibiotics Thursday for her cold. We celebrated Christmas Saturday night and continued today with going to church to see our little angel in the Christmas Pagent. She was fabulous in her roles to say the least.

Maddie/mommy delivered her line flawlessly during her speaking part. She a very happy baby in the stroller for her part as a sleeping baby in a stroller. She was an adorable angel in her role as an angel. I don't think there were very many people who had dry eyes in church when I rolled her out with her angel costume on and put her up with the manger scene. Unfortunately daddy was video taping the whole program so we don't have any pictures of her performance to share with you on her web page. We sang Christmas Carols during the performance as well, the last one we sang Maddie cooed loudly and smiled, she appeared to be really enjoying the day. It was a very moving performance for me and our families...

After Maddie's steller performance we went to lunch before we said goodbye to everyone and wished them safe travels for their Christmas celebrations next weekend. We will be with the Fall side next weekend so we get to do this all over again with them (minus the Pagent).

Steve and I have been incredibly blessed this year with Maddie's good health. She was only in the hospital 2-1/2 days around Mother's day. We hope and pray she has another great year in 2007.

Have a very Merry Christmas!

Love,
Steve, Darla & Madeline

Sunday, December 10, 2006 6:09 PM CST

Madeline finally got to met Santa. Maddie was feeling a bit under the weather and very crabby, but we decided to take her to meet Santa who came all the way to Hudson this past weekend to check in on all the good little boys and girls. I tried to get her to take a nap so she would be well rested before she met him but she wouldn�t have anything to do with a nap. We met Santa, apologized to him for her crabbiness, took a few pictures and we were out of there. Santa told us she was alright, even Santa gets a little crabby every once in awhile�

Actually I�ve wanted to take Madeline to meet Santa before this but she has been in the hospital the past two years before Christmas so we haven�t been able to do it before now. I was very happy we got to take her this weekend even though she was not amused what so ever by the meeting. It was basically just a photo opportunity for me.

Maddie still has her cold, she continues to have a cough but it hasn�t gotten any worse or better. I�ll call her doctor this week to see if I can bring her in the end of the week just to make sure nothing is brewing. She has been sleeping really well except for last night. She was up at 1:30 AM and didn�t go back to sleep until 7:00 this morning. She finally settled down with daddy while I got ready for church. Needless to say I was the only one that made it to church this morning. Maddie and daddy slept in until after 11:00.

We will be celebrating the Merkel Christmas this coming Saturday at our house. We are looking forward to having everyone over and celebrating this special time of year. They are all coming to our house because Madeline is in the Christmas Program at church on Sunday. She has a speaking part which will be performed by me, she is playing a baby in a stroller and her last seen � she will be playing an angel. She missed rehearsal today but we have another one on Saturday before the big performance on Sunday. We can�t wait! The play is really cute.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, December 3, 2006 7:30 PM CST

Maddie developed a bad cough this past weekend. I�m hoping it�s just a minor cold and she�ll get over it very quickly. We have lots to do this month, we can�t have Maddie down and out with a cold.

We cut down our Christmas tree yesterday at Tony and Brenda�s cabin. It was very cold so we didn�t actually have Maddie out that long. She was bundled up so much you couldn�t see anything but her eyes above the scarf on her face. She really seemed to enjoy sitting around the fire and taking in all the laughter. It took about 20 minutes to get Maddie dressed to go outside (snow-pants, boots, coat, hat & scarf), she was outside for about 45 minutes and it was back into the cabin so I could feed her. Anyway, she was such a trooper once again.

This was my first week back to work. I really missed Madeline a lot but I also enjoyed jumping back into the world of office furniture. As of now I�ll be working in the office (Minneapolis) Monday through Wednesday and I�ll work from home Thursday and Friday. As I stated previously my goal is to work from home once we get our high-speed connection this month.

I think Maddie missed me as much as I missed her. I called Heidi several times a day to check on her and she was usually cooing and smiling because she heard my voice. Heidi told me Maddie was less vocal during the day because I wasn�t around the house talking and singing to her. Heidi said she tried to act like me but Maddie wasn�t buying it. When I got home at night she was usually sleeping in daddy�s arms but had a big smile for me when she woke up.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, November 26, 2006 6:33 PM CST

We made it home safe and sound! We had such a wonderful time in Seattle with Debbie, Larry, Matthew, Grandma, Keith, Kris, Emily and Hanna. As with any vacation it went too fast. Madeline had a great time with her cousins Emily and Hanna, she loved to hear them play, the more they screamed and laughed the more she cooed.

I can�t even tell you how well Madeline was while we were there. She loved just being there with all of us �even though we got a little noisy at times she just sat there cooing away. We went out to dinner Tuesday night (as you can tell we went to Buca), Wednesday we went downtown again to visit Pike Place which was very crowded but Maddie was taking in all the sights and sounds. We were hoping to go to the Space Needle, unfortunately it was raining and a bit cool out to take Maddie there. Thursday we stayed home to celebrate Thanksgiving. Friday was a shopping day for the women, Maddie stayed home with daddy and hung out with her cousins.

Our trip home was just as uneventful with Maddie as the trip to Seattle except our flight was delayed two hours due to mechanical issues. We made it through security with the help of three TSA agents. One agent in particular was very kind and provided a Smart Cart for us due to the volume of baggage we still had as carry-on. I think she would have escorted us through the rest of the airport if she could have, she really liked Madeline. We did not hear a peep out of Maddie the entire four hours we sat at the airport before we boarded our plane. Once on the plane she had a little trouble with a bad cough but for the most part we heard coos the whole way home.

Maddie was still cooing when we walked into our house after 9:30 PM last night (we stopped to get groceries). She was an absolute angel the entire trip. We are happy to be home but we can�t wait to go again real soon.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, November 12, 2006 12:34 AM CST

WE HAVE ARRIVED! Our trip to Seattle was great - no problems getting through security. Of course it helped that we had 4 TSA agents checking us through the check point. We were able to go to the front of the line. Two agents inspected Madeline in her chair with me and the other two took Steve aside to check through her medications and equipment. The overall experience was great. The agents were soooo nice to us and Maddie.

Madeline was an absolute angel on the flight - not a peep out of her. The flight was 3-1/2 hrs., I thought she would get a little crabby towards the end. Madeline started to get fussy but I held her for awhile and she was fine. I can only hope our flight home will be as wonderful as it was here.

We found out that our aide Shawnda was leaving us this week, Thursday was her last day. Shawnda was great with Maddie and we will truly miss her.

Another update to share - I'm returning to work at William J. next week. I'm excited to return to work, I'll be working from home as much as possible as soon as we get high speed internet.

Sorry I was not able to update the pictures but our computer kept crashing at home last night, you'll just have to wait until Sunday for new pictures.

I wish you all a wonderful,safe and Happy Thanksgiving! Steve and I certainly have a lot to be thankful for this year!

Love,
Steve, Darla & Maddie

Sunday, November 5, 2006 6:40 PM CST

We had a great meeting with Dr. Gilles on Thursday. She was so shocked to see how well Maddie is doing overall. She couldn�t believe how big she is (36� long, 34 pounds) and how much she is cooing and smiling. Dr. Gilles would talk to Maddie and Maddie would A-Goo back to her in response, it was great to see the excitement on both of their faces.

Dr. Gilles observed a lot of the movements Maddie�s making which may or may not be seizures. Dr. Gilles said she thought she was having more tremors then actual tonic movements which would be seizures. She is going to schedule a 24 hour EEG to capture these movements to determine what they are. We discussed the Parkinson medicine again if the movements end up being just that � muscle movements. These movements are like Parkinson�s but she does not have it. We discussed this particular medicine late last year but not one doctor or pharmacist would put Maddie on it because of her age. We will discuss it again once we know what we are dealing with.

Dr. Gilles also wants Maddie to see an orthopedic doctor at Gillette to make sure Maddie is growing straight. Maddie has never really been X-rayed from head to toe. She has had tons of x-rays of her head and chest but not the whole picture. This new doctor would take a set of x-rays to confirm Maddie�s head, spine, hips and legs are aligned correctly. Children who have little or no tone (muscle tone to keep her upright) tend to lean to one side which causes issues with their overall posture. I�m not sure when we will be able to get in but hopefully soon. Gillette will also modify her Kid Kart to fit her better once they know from the x-rays what needs to be done to correct any issues that may appear.

We are looking forward to our trip to Seattle in three weeks. We can�t wait to see Deb, Larry and Matthew but I�m not looking forward to getting through security with all of Maddie�s equipment and medication. This will be the third time we have flown with Maddie but this time we have equipment we have never had before plus this flight will be longer then the others. All I can say is it will be interesting�
.

Maddie continues to have great nights and her days are filled with smiles and coos. She is a very happy little girl these days.

Have a great week.

Love,
Steve, Darla & Madeline

Sunday, October 29, 2006 8:29 PM CST

Maddie has had another awesome week! She has slept through the night every night this past week and throughout the weekend. Boy what a difference it has been since we are all getting more sleep

Maddie did very well with the G-J tube switch out, she actually feel asleep for an hour before the procedure began. Maddie didn�t wake up until I pulled her out of her Kid Kart to lay her on the table for the switch out. She was happy the rest of the day � I think she really likes the laughing gas they give her.

Aunt Neesie and Grandma Tessie took care of Maddie Saturday night and Sunday morning while Steve and I attended a wedding out of town. Maddie entertained Grandma and Aunt Neesie with her coos and smiles. They even took a little road trip today to Aunt Neesie and Uncle Dan�s church by their house. Maddie introduced herself to the congregation with her coos and smiles as well.

We meet with Dr. Gilles on Thursday. Hopefully we will make some changes with her medication(s) that will help control her seizures better. Maddie�s seizures have been slowly increasing over the past three months. She has about 20-40 small jerky seizures and 3-5 larger seizures a day. We hope that by changing one of her medications we can get the seizures under better control.

Have a great week.

Love,
Steve, Darla & Maddie

Sunday, October 22, 2006 8:58 PM CDT

Maddie slept great this past week - so well she slept 12-15 hours Monday, Tuesday and Wednesday mornings. I had to wake her up at 11:00 Tuesday morning for her therapy session and I woke her up at noon on Wednesday so I could wash her sheet, she was one tired little peanut. She appears to be healthy so I think she maybe growing.

We had our 4th annual Halloween Parade in our neighborhood. Steve and I had our party afterwards which was our biggest crowd to date. Maddie was an Angel - I mean that literally. She had a halo, wings and an andorable white dress. Unfortunately, due to the weather she was covered up most of the day.

Maddie will have her G-J Tube swithed out this Wednesday as a routine procedure. She has it switched out every three months so they know her really well by now. I believe I stated once before that the procedure only takes about 15 minutes, it take longer to go through all the paperwork. She will be put under with gas - she really responds well to it.

Have a great week!

Love,
Steve, Darla & Madeline

Sunday, October 15, 2006 7:10 PM CDT

Maddie was still sick this week so it was a low key week to say the least. I actually took Maddie to see her doctor Thursday morning. Maddie�s lungs, ears, nose and throat were clear which I was very happy to hear since she was coughing so hard I thought she may have a sore throat. She has been so congested and her nose is full of icky stuff I thought she had a sinus infection too. It�s just a bad cold that has to run its course. If it doesn�t clear up in the next five days I�ll take her back to the doctor.

I ended up talking to Maddie�s doctor about her going to the center to attend preschool this coming year. Maddie�s doctor was not big on the idea of her going to school starting at the beginning of the year due to the fact that it is the cold and flu season along with RSV season, a highly contagious respiratory/lung infection. Maddie�s doctor said she wouldn�t give Maddie the green light to �attend� school until next April. Although I was disappointed with this news both Steve and I are very concerned about Maddie�s health and what could happen if she were to get sick during the cold and flu season. We can�t possibly protect Maddie from all germs and such but we can certainly eliminate her exposure to others who are sick. Maddie will continue to receive her therapy at home until she goes to school.

Even though Maddie was sick this week she had an awesome therapy session on Tuesday with her PT and her teacher. Maddie was looking at the books and things her teacher put in front of her to test her visual tracking. Maddie usually doesn�t look at objects for very long but she was holding her gaze longer then she ever has. I only captured a few pictures of this event before my camera�s battery died. I got out the camcorder to record it but my disc ran out and I didn�t have another one. Maddie was standing and lifting her legs to take steps while her PT was holding her up under her arms. Maddie did this exercise two years ago but stopped doing it shortly after she started. I couldn�t believe she was trying so hard to take those steps once again. She did this for about 20 minutes and I didn�t capture a bit of it. UGH!

Maddie�s seizures have been increasing over the last few weeks. The actual pattern is the same but she has started to have them when she is awake, she continues to have them while she tries to fall asleep as well. I�m hoping to get in with Dr. Gilles real soon so we can discuss our options of maybe changing two of her medications. Dr. Gilles is very busy seeing patients and speaking/attending conferences but I have been told by more then one source that Maddie is one of her VIP patients so hopefully we can get in sooner rather than later. Maddie is so VIP that when Dr. Gilles is away from Children�s the other neurologists are on stand by to step in if we had an emergency with her. I�m not sure if that�s a good thing or bad but one thing is for sure we receive incredible care/attention from all of her doctors�

Have a great week!

Love,
Steve, Darla & Madeline

Sunday, October 8, 2006 4:39 PM CDT

Maddie has had a bad cold the last few days along with a low grade fever. Even though she has been sick she has been sleeping pretty good overall. She hasn�t been as chatty as she usually is but I guess I can cut her some slack for not feeling well...

Maddie did better in her therapy sessions this week. She actually worked very hard on Tuesday and Thursday, her therapists were very happy and so was I. She really liked our cheers and applause for her. We are hoping she continues working this hard.

Steve, Maddie and I are going to Seattle for Thanksgiving which means a lot of preparation before we leave and when we get there. I will be working with our equipment supplier to rent Maddie�s equipment from a source in Seattle rather then pack it all. Traveling with Madeline has gotten a little more complicated since we went to Atlanta last December. I�m betting we will be held up in Security for awhile, especially with all of her medication. We�ll be traveling with Grandma Tessie, Uncle Peef, Aunt Tissie, and Cousins Emily and Hannna � we can�t wait!

Daddy comes home tomorrow - we are so excited we really missed him!

Have a great week.

Love,
Steve, Darla and Maddie

Sunday, October 1, 2006 3:17 PM CDT

Maddie had another great week sleeping and vocalizing during her wake hours. Her aides are having a hard time keeping up with all of the new noises she is making.

I think Maddie was feeling a little under the weather this week along with me especially on Tuesday and Thursday during her therapy sessions. Even though she slept great throughout the night she was still a little tired for her therapy on both days or so she appeared to be. When the sessions were over and the therapists left she went right back to smiles and coos. She knows how to get her way�

Tony and Brenda had their annual hayride yesterday which was a lot of fun. This is the first year that we actually took Maddie on the hayride, the weather was so beautiful we couldn�t pass it up. I think Maddie enjoyed herself especially because there were a few kids from church on the ride as well and I think she recognized their voices. She didn�t join in on the games with the other kids but maybe we can do that next year.

Daddy will be gone a few days this week fishing with Tony and some other friends so it will be just Maddie and me holding down the fort. Hopefully she will continue to be the little angel she has been for the last couple of weeks.

Love,
Steve, Darla and Madeline

Sunday, October 1, 2006 3:10 PM CDT

Sunday, September 24, 2006 7:19 PM CDT

DING-DING-DING-DING-DING We have a winner, Maddie is sleeping! Finally we have discovered the magic combination of medication we can give her and keep her sleeping on the CPAP machine (yes we are back to the CPAP again)until about 5:00 AM or later. We are only giving her one dose of the Chloral Hydrate and good old Benadryl as a bump at midnight. You can't believe how happy we are.

We switched the BiPAP machine back to the CPAP this week. We were hoping Madeline would not fight the machine so much and actually let the machine do it's job -support her breathing during sleep. It worked! Since she is sleeping so much better it has really affected her wake time interaction. She is smiling and cooing all the time now.

Madeline started Sunday school at church today. She is in the Pre-school class with her cousin Eliana and four other children. They will basically talk about God and our faith, color and oh yeah I'm sure they will sing a few songs if I have any say in the matter. Maddie was a little crabby towards the end of the service when the children were being blessed by Father Chris for a great school year, however she perked up when I was coloring a picture with her. Well actually I put the crayon in her hand and helped her along the way. I think she will really have fun with the kids.

Have a great week!

Love,
Steve, Darla and Madeline

Monday, September 18, 2006 9:07 AM CDT

We are still working on the sleep issue but she had a couple better nights this week and one that was not so good at all � UGH!

I met a new doctor this week, a pain management specialist from Germany but trained in Australia. He takes a different approach to treating children with chronic illnesses. He looks at the symptoms or side affects that cause distress for the child and tries to address it from that angle. Since Madeline has so many medical issues you would think everything causes her stress/distress but I told the team all of her distress stems from the lack of sleep she gets. It affects her seizures, her respiratory condition, her overall breathing and her retching. We touched on a few items of concern but kept on going back to the lack of sleep. I told them my concern about using the Chloral Hydrate since she was addicted to it two years ago, the doctor assured me she was not an addict and it was perfectly safe for her even though she would be taking some heavy duty doses that would cause problems for other children her age. Our appointment lasted two hours but I am thankful we have yet another doctor that knows about Maddie and I love the approach he takes with his patients. He is a lot like Dr. Gilles and you know how much we LOVE her!

Grandma Tessie was here for five days visiting and helping me out with baking for our Fall Festival at our church yesterday. The weather started out crappy but it ended up being a great day but a bit windy for Maddie. We basically sat in the hall and hung out with all the guests coming to the dinner. The food was excellent and the company was even better � Aunt Neesie and Uncle Dan joined us. Aunt Diane and Uncle Hugs stayed with us Friday night but they missed Maddie before she went to bed. Hopefully they got to enjoy her a little bit Saturday morning before they headed to Minneapolis to visit friends. Trisha took care of Maddie while Steve, grandma and I made the cabbage rolls at church for the dinner yesterday.

Maddie did better this week with her therapy sessions but was still a little sleepy to do a whole lot. Her swimming session was more interactive this week, I think it was because Grandma Tessie was singing and clapping her hands so Maddie would react � she did.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, September 10, 2006 4:28 PM CDT

Maddie had a better week overall. She is sleeping better but I wasn�t able to use the BiPAP this week like I had the week before. I think the little peanut is on to me, she knows when I�m in her room so she stirs and moves around like she�s waking up, that way I won�t put the mask on her. She is a stinker at times.

The meeting with the Hudson school district director went well. She is very excited to have Maddie joining the school system. We basically covered Maddie�s needs and her fragile health situation especially during the cold and flu season. The director stated they would be very flexible for Maddie and if she needed to be home during some of the time they would send the therapists to our house. Due to Maddie�s medical needs she wasn�t sure if they would assign a school nurse to oversee Maddie or not � they will have to discuss that at another meeting. The director did state Maddie would have a school assigned aide along with our home health aide with her at school. We also discussed the activities they would be doing along with the therapy sessions. I asked if they had a music/song session � she looked at me with a big smile and said �oh yes� her kids love music and song time. I replied, Maddie loves music and the louder the kids sing the better for her. I also asked about field trips, the director said they would be going to the public library for one and the ice skating rink for the other. She stated they have special mats or something like it for the kids in wheelchairs, they are pushed around the ice in their chairs. We have several meetings over the next couple months to get everything in place for Miss Madeline.

Grandma Fall was able to attend Maddie�s swimming therapy session this week. Unfortunately Maddie wasn�t up to kicking or doing much of anything � she was very mellow for some reason. Teresa tried everything to get her to kick her legs but Maddie only did it once or twice and that was it. Actually all of Maddie�s therapy sessions this week were pretty mellow, she fell asleep half way through her therapy session on Tuesday as well. Hopefully this week will be better.

Love,
Steve, Darla and Maddie

Monday, September 4, 2006 5:12 PM CDT

Happy Labor Day! I can�t believe this is the end of summer � where did the time go? Maddie has been doing a little better this week. I have been experimenting with the BiPAP on and off this week. Although Maddie still hates the mask I think she likes the fact that she can breathe better with the mask on therefore puts up with it at least for awhile. Maybe she will give up and won�t fight it � yeah right!

Steve, Maddie and I went to the fair Thursday night. The weather was beautiful, we couldn�t have asked for a better evening. Steve and I didn�t actually eat that much at the fair which made our stay there pretty short. Maddie went on the carousel ride, I think she really loves this ride. She was a little fussy before I took her on it but the second we started to move and the music was playing she was cooing and smiling. The ride wasn�t that long but she got to enjoy none the less.

Yesterday we headed up to Grandma and Grandpa Fall�s cabin to spend the day with the family. Maddie did great � she even got to sit around the fire with the girls and grandpa when the boys went to play Mini Golf. We had a great time even though it was only for a few hours.

I will be meeting with one of Hudson�s Early Childhood Development director�s this week. We will discuss transitioning Maddie from the Birth-To-Three program, which she is enrolled in now, into the Hudson�s public school district once she turns three in January. Maddie will be attending the classroom of the Early Childhood Development program at the Special Children�s Center in Hudson. Basically this means Maddie will be working with her therapist�s at the Center instead of our home. The reasoning behind this is to get the children into a school atmosphere versus a home environment to prepare them better once they are �mainstreamed� into the system if they will be. Since Maddie is so developmentally delayed she will not be mainstreamed into the school system, she will remain at Special Children�s Center working with therapist�s just doing what they have been doing but she will also get to interact with other kids, we are all anxious to see how she does with this different setting. The �school� day is about 2-1/2 � 3 hours but there is travel time as well so it will be more like 4-1/2 - 5 hours depending on how many kids will be picked up and dropped off by the bus once Maddie starts. We don�t have all the details yet and it certainly depends on how healthy Maddie is this winter but I�m really excited for Maddie and her new adventure.

Hope you had a great holiday!

Love,
Steve, Darla and Maddie

Monday, August 28, 2006 1:17 PM CDT

Same thing - different week! Maddie continues to have issues with the BiPAP machine so we have't used it this past week. Maddie's breathing is worse at night so we give her 4-5 nebulizer treatments during the day to help her breathing, overall I think she is doing better.

It appears we are getting more doctors and nurses involved with Maddie's issues. I spoke to Maddie's Pulmonary doctor's nurse on Thursday, she was following up after the sleep study, which we don't have the results back but we should get them this week. Anyway, Julie was stating she was getting another doctor in the group up to speed on Maddie so we have two Pulmonary specialists aware of Miss Madeline. She also stated we could discontinue the BiPAP if we felt it wasn't doing Maddie any good. I informed her we haven't been using any of the machines since last Sunday. I told her the settings on the machines were set to low or something because they were going off all night. She continued to tell me the settings were at normal levels - the alarms are going off because Maddie needs that much assistance...

On Friday I spoke to another nurse who was told to contact me by the Pulmonary group. We dicussed more of a pain management approach to the situation. She suggested we try a medication to help her sleep in addition to what we already give Maddie. We started Maddie back on Chloral Hydrate this weekend. Maddie has been on this before and got so addicted to it we had to wean her off of it over several months. I actually got into a heated conversation with one doctor that told me my daughter was bascially an addict on chloral hydrate. I am using the medication very sparingly this time around so we don't run into trouble with it again.

Steve and I are taking Maddie to the fair one night this week so hopefully we pick a night that isn't so crowded. Naturally Steve and I will eat our way through, we'll take Maddie to some of the exhibits and maybe on a few of the kid's rides. Should be fun!

Have a great week.

Love,
Steve, Darla & Maddie

Monday, August 21, 2006 1:05 PM CDT

What a week we�ve had. I ended up taking Maddie into the doctor on Tuesday because of her lack of sleep and she was getting more and more irritable during the day because of it. The doctor prescribed a sleep study to be performed as soon as possible which was scheduled for Wednesday night. The doctor also ordered new equipment to be sent to our house Tuesday night so Maddie could start using it right away. Maddie was switched from a CPAP to a BiPAP. The BiPAP is almost the same as the CPAP but it adds oxygen to the constant positive air pressure. We now have a large oxygen Concentrator which takes the oxygen out of the room air and runs it through the BiPAP to Maddie. This machine sits outside her room, it sounds like an Iron Lung (ok I don�t really know what an iron lung sounds like but I�m guessing it sounds like this machine). It is so loud I can�t sleep when it�s running. We also have 4 liter tanks of oxygen to use when we are traveling or the power goes out. The doctor added a pulse oximeter which measures Maddie�s oxygen saturation level and her pulse/heart rate as well.

We hooked up everything Tuesday night when Maddie went to bed, it sounded like an ER at our house when all the alarms were going off shortly after 10:30 PM. Maddie was fighting the BiPAP which made that alarm sound off, which made the alarm on the concentrator sound off because it wasn�t getting the �feed back� it needed, which made the oximeter sound off because her oxygen was too low and her heart rate was too high. After several times this happened we turned off the oxygen concentrator, eventually turned off the BiPAP, leaving only the oximeter on. Maddie�s oxygen level dipped several times during the night when she was experiencing apnea, I would get up, silence the alarm and move Maddie slightly to get her airway open again. Lets just say neither Steve or I could sleep with the alarms constantly sounding so we ended up shutting them all off by Sunday night. I will be talking the doctor about our next move�

Maddie had the sleep study Thursday night but was so tired from this week she actually slept for her sleep study. Steve went to the hospital with Maddie since Grandma Tessie was here and we had the garage sale going on, which by the way was a huge success. Anyway, Steve had to get up a few times to help the techs with Maddie, but overall she did not do much according to them. We should have the report in a week or so.

We went to Marshfield on Saturday for my niece Emily�s birthday and to bring Grandma Tessie home. The birthday party was a lot of fun and Maddie loved to hear the kids screaming and laughing while they played. Uncle Dan played the guitar and sang songs with the kids which made Maddie coo even more. This was Maddie�s first birthday party with lots of other kids not just her family. Although Maddie didn�t go down the big slide or jump in the jumpy thing she really enjoyed watching and hearing the kids.

When we got home yesterday afternoon we had a birthday party at our house for Grandpa Walter. We had a great time with the Fall side of the family as well. Maddie got to see her cousins, aunts and uncles and grandma and grandpa all of which we haven�t seen in a couple of weeks. Maddie got a little cranky towards the end - she was so exhausted from all the fun the past two days. Even though she was soooo tired she was up several times throughout the night, I start to loose count after 4 times of getting up with her. I don�t know how she can get so little sleep and be happy the next day. I�ll be talking to the doctor this week once we get the results of the Sleep Study to figure out what�s going on.

Have a great week.

Love,
Steve, Darla and Madeline

Sunday, August 13, 2006 10:08 PM CDT

Madeline had yet another rough week sleeping at night and trouble taking naps during the day. I�m not sure if were dealing with a teething situation or if we need to modify the amount of support the CPAP machine gives Maddie. I will call the sleep specialist to see what he thinks we should do. We are still giving Maddie her nebulizer treatments during the day which seems to be helping her overall � now we just need to get her to take her naps.

Maddie had a great day at the pool on Thursday with her therapist Teresa. I couldn�t believe how much Maddie was kicking her legs and trying to move her arms. Once again the pictures do not show her really kicking but I took video of her as well and it�s amazing how much she enjoyed kicking. She did try to fall asleep during her session so she was a little drowsy during part of the workout, but she worked hard the rest of the time.

We went to Marshfield this past weekend to attend my class reunion. Grandma Tessie, Aunt Kris and Aunt Diane took care of Madeline while Steve and I attended the pre-reunion party Friday night and the reunion Saturday night. I got to see a lot of my friends who I haven�t seen since the last reunion 5 years ago. I was especially excited to see my friend Jill, we had a great time catching up on everything and she finally got to meet Maddie. THANK YOU to Grandma, Kris and Diane for taking care of Madeline and allowing Steve and I to get a break and enjoy a weekend to ourselves, we appreciate it so much.

Grandma Tessie came back with us to spend the week with Madeline and to help me out with a garage sale I�m having this Thursday and Friday. I�m not sure what the heck I�m getting myself into but I�m sure this will be my one and only garage sale. These things are a lot of work � but Steve told me I could not bring another thing home until I got rid of all the stuff I already have that I never wear or use. It�s amazing how many things I have gathered together for this sale. Let�s just hope it�s a good one!

Love,
Steve, Darla and Madeline

Saturday, August 5, 2006 3:18 PM CDT

Maddie had another rough week sleeping at night and retching during the day. Tuesday night she screamed and cried so much I thought for sure she had an ear infection. I ended up taking her to the doctor (not our regular doctor) Wednesday afternoon only to find out her ears and throat were clear� Maddie is teething, another molar coming in. You would think she was getting all of her teeth in at once the way she was crying Tuesday. Needless to say she is doing much better now that we�re giving her Motrin and Tylenol on schedule.

Since Maddie was sick or so I thought we didn�t make it to VBS (vacation bible school) Wednesday morning. However, we did get to go Thursday and Friday, Maddie loved it. She really likes to be with other kids and she LOVED the music session when the kids sang songs and clapped their hands. The louder the kids sang the more she cooed. Maddie got to make lots of crafts with a little help from Heidi and myself. I actually made a church-bird house for Maddie and Heidi painted some sun catchers for her. We also got to make a family tree poster, built a church out of graham crackers and frosting and another poster of Maddie�s hands. Maddie had a great time!

Maddie went swimming this week, we had a substitute therapist because Teresa was gone so Maddie wasn�t really into it like she is with Teresa. Maddie was tired from her big morning at VBS and the drive home. Maddie did kick her legs a lot more but she was too tired to continue after a half hour in the pool. We cut the session short but I�m excited to see what she will next week once Teresa is back.

Trisha is back from Africa and right back into the swing of things with Maddie. Trisha can�t believe how big Maddie is and how much her personality has changed since she left. She has noticed how much more she reacts to things around her. Maddie got lots of hugs yesterday afternoon when Trisha arrived. Apparently we will be keeping all three of Maddie�s aides since Shawnda didn�t want to be just the �back-up�. Shawnda wanted to keep Maddie because she loves her so much. Heidi keeps her days, Shawnda will be here on Wednesdays and Trisha will be here on Fridays and some Saturdays � everyone is happy.

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, July 30, 2006 4:44 PM CDT

Maddie had a better week sleeping and she was much better during the day. We started giving her Zofran which is an anti-nausea medication. This new med has really helped with Maddie�s retching. When we met with Dr. Gilles a week and a half ago she witnessed one of Maddie�s retching episodes and thought she was acting like she was more nauseous then anything, she suggested we try Zofran. She talked to Maddie�s pediatrician who prescribed it and it has been working great. Once again Dr. Gilles solves another issue with Maddie�

Maddie�s therapy session at the pool on Thursday was wonderful �she had a great time. Maddie was actually kicking her legs (pictures do not show it) and moving her arms at times. There was another girl, who was 9, in the pool with her therapist they were playing Marco Polo � Maddie was trying to find them but couldn�t really move her head with the life jacket around it. Teresa, Maddie�s therapist was very impressed how Maddie was reacting to the two of them during their session. At one point the other girl, who could talk, told her therapist she wanted to meet Maddie so her therapist brought her over to Maddie. The girl said �Hi Maddie�, Maddie cooed in response, lifted up her butt to kick and splashed her left arm� I guess that�s Maddie speak for �Hi�! I of course kissed Maddie and praised her all the more, she gave us more coos and smiles. We can�t wait for Thursday when we go again.

This week Maddie goes to VBS (vacation bible school) at our church Wednesday, Thursday and Friday. Shawnda and Heidi will be going with, I�m sure they will love making all the fun things we get to make. I will be helping out the other kids, Shawnda and Heidi will be working with Maddie � should be lots of fun.

Trisha, our other aide will be coming back soon � I think she starts back with Maddie this week but I�m not sure. Trisha sent Maddie a post card from Africa telling her how much she missed her and how much she was looking forward to taking care of her again when she returns. We will now have three aides that work with Maddie. Heidi and Trisha will be her primary care givers with Shawnda as back-up.

Have a great week � stay cool.

Love,
Steve, Darla and Madeline

Monday, July 24, 2006 2:01 PM CDT

Maddie had a rough time sleeping this week, she didn�t like having the CPAP mask on very long during the night. Maddie woke up around 1:00 AM or so crying and trying to get the mask off by yawning, I would take the mask off so she would go back to sleep. The CPAP works so well for Maddie that when she is off of it as much as she was this past week it really affected her breathing during the day. It also affected her moods as well - she was a little cranky this past week. I started giving her the nebulizer treatments several times a day, I hope this will help her breathe better at night and during the day.

Maddie is also having more and more seizures again when she tries to fall sleep. I spoke to Dr. Gilles�s nurse on Tuesday to make an appointment to get a blood draw on Wednesday. Maddie�s levels of two of her seizure medications were low, we increased one, hopefully this change will decrease the number of seizures she has while she is trying to fall asleep. The lack of ability to take a nap during the day also contributes to her crabbiness.

Maddie will be going to the center this week for her Thursday therapy session at the pool. Since we have gotten Maddie�s retching under control for the most part we are able to take her into the pool (when she was retching we had to keep her extensions connected to her in order to drain her tummy better). Although she has lost a lot of her head control strength we want to see how well she can do in another element, the water. Teresa, her therapist, is anxious to see how she does and so am I.

Steve and I celebrated our 5th wedding anniversary this past weekend � we can�t believe how quickly five years has past.

Have a great week!

Love,
Steve, Darla and Madeline

Monday, July 17, 2006 12:20 AM CDT

Can it get any hotter? It�s been very hot the past few days and doesn�t seem like it�s going to get any better any time soon. Maddie is certainly affected by the heat as well even though she doesn�t go outside much on the really hot days.

Maddie has been a little weak this past week in her therapy sessions but we think it�s just because of the heat. Maddie had a really good session this past Wednesday with her Birth to Three program teacher, she was really alert and tracking in a book that Jessie was using. Maddie was also tracking with other toys as well.

Grandma Tessie and Grandpa Bob came to visit for a few days � Maddie really likes it when they come because she doesn�t get to see them very much. Grandma kisses and hugs Maddie all day long � they both love it! Needless to say Heidi and Shawnda didn�t have much to do with grandma around until I went to run errands or something.

Maddie had her G-J tube switched out this past Thursday morning before grandma and grandpa arrived. She has the same type of feeding tube just a new one. This particular tube needs to be replaced every three months because they start to break down from acid and medications. The procedure was done at Children�s/St. Paul in their Radiology department. The procedure only take a few minutes, it takes them longer to scrub up and disinfect Maddie�s site then it takes to take out the old one and insert the new one. They give Maddie Nitrous oxide (laughing gas) to put her �out� then stop it to bring her back. It�s great � she doesn�t mind it at all.

Stay Cool and have a great week.

Love,
Steve, Darla and Maddie

Sunday, July 9, 2006 8:11 PM CDT

Maddie is finally over her cold. Maddie was having a rough week sleeping but I think I got her back into her routine the last couple nights. Maddie was waking up every night around 2:00 AM unable to breathe with the CPAP mask on because she was creating too much of a �leak� (loss of air) around her mouth by crying and yawning. Maddie is a smart little cookie she knows she gets the CPAP mask off when she does this so she continued to do it all week.

Maddie had a pretty good week with her therapists, her PT said she had her best session she�s ever had with Maddie on Friday. Maddie was standing against the ball with minimum support from Margaret. Maddie has really surprised her therapist�s with the strength she has gained the last few weeks. Maddie is finally getting back to where she was about a year ago as far as ability to hold herself up (trunk) with the assistance of her therapists. The therapists were doing most of the work the past year. Unfortunately, Steve and I were gone so we missed her great session on Friday.

Maddie experienced her first fireworks display Saturday night at our neighbors Fourth of July party (yes they know the 4th was on Tuesday). I think Madeline really enjoyed the show � our neighbors hired professionals to do the fireworks. They were amazing although the pictures do not do the fireworks justice. Maddie�s eyes were as big as saucers for the 20 minute show.

Have a great week.

Love,
Steve, Darla and Madeline

Monday, July 3, 2006 10:53 AM CDT

Happy 4th of July! The parade was great but very hot�. Maddie was extremely warm towards the end of the route so we had to detour into a parking lot to get Maddie out of her Kid Kart to cool off. Once I took her out and held her for a minute she was back to cooing and smiling in no time. Unfortunately we didn�t finish the parade but we did at least get to watch the rest of it in a well shaded and breezing area.

Maddie enjoyed the rest of the parade, she loved the school marching bands and the fact that every time one went by people clapped � Maddie thought everyone was clapping and cheering for her, she loves praise! I guess I�ve created a bit of a Diva but she is so cute when she gets all excited when we clap and cheer for her in therapy sessions.

Yesterday was kind of low key, Maddie did not sleep well Saturday night so we were all a little tired. We did take Maddie to Hudson Booster Days later in the afternoon to check out the rides. Steve took Maddie on the little train ride which was basically the only one we could take her on that we could hold her. It wasn�t the carousel she liked so much but she did seem to like it anyway.

Maddie still has her cold, she continues to cough and sneeze a lot. Hopefully I can take her back to the doctor sometime this week. Maddie�s retching is getting better but she has had a few more episodes due to her coughing which goes into retching. I think the fact that we are draining her tummy contents into a diaper has helped tremendously. Maddie also seems to be doing well on the CO-Q10 vitamin. Steve and I, her therapists and her aides have noticed that Maddie seems more alert, has better eye contact and she is really working hard in her therapy sessions. Maddie likes to stand and put weight on her legs which wasn�t one of her favorite things to do before. She sure gets a workout pushing herself up to kiss daddy.

Have a great Holiday!

Love,
Steve, Darla and Maddie

Sunday, June 25, 2006 9:57 PM CDT

Maddie has had quite an eventful week last week. We started off the week with Maddie having a reaction to the vitamin cocktail, she turned red, yes I said red like a sunburn and her skin got warm to the touch when we gave her the "B Complex". We ended up discontinuing the B complex on Tuesday and we cut her Co-Q10 dose in half which has helped her bad gas and her very messy diapers (yippy).

Maddie also developed a bad cold on Thursday, she was coughing and sneezing most of the day and all night. I ended up taking her to one of her doctors on Friday to make sure she wasn't getting an ear infection or even worse, pneumonia. They took a chest x-ray which showed her lungs we clear, but the nurse prescribed a steriod to help open her airway. We are also doing the nebulizer treatments several times a day to help open up her airway as well.

Finally, Maddie got to spend Saturday and Sunday with grandma Tessie, Aunt Tissie, Aunt Diane, Aunt Neesie and cousin Emily. Steve and I had a wonderful time at the wedding knowing Maddie was in great hands. When we got home this afternoon Maddie put on a show for grandma and her aunts - she showed them how she stands up to give daddy a kiss. The more we clapped and praised her the more she did it - I wonder where she gets that from?

Maddie will be in another parade for Hudson's Booster Days this weekend. Maddie, Steve and I will be in the parade on Saturday representing The Special Children's Center, where Madeline's therapists are through. We will be actually pushing Maddie in her kid kart along with all the other kids who go to the Center. Hopefully it won't be that hot out, this is a really big parade and I'm not sure how long we'll be walking.

I would like to say a special THANK YOU to grandma Tessie, aunt Tissie, Aunt Diane and Aunt Neesie for taking care of Madeline this weekend! Steve and I appreciate it sooooo much!

Love,
Steve, Darla and Maddie

Sunday, June 18, 2006 9:06 PM CDT

Happy Father�s Day to all you fathers, grandfathers and godfathers! We had a great day overall. Maddie had a rough morning in church, she retched quite a bit but this afternoon we had Steve�s family over and Maddie did much better. Maddie continues to have good days and bad days with her retching even though we are venting her stomach.

We started Maddie on the vitamin cocktail this past Saturday. I have been working with one of the pharmacists at the University of Minnesota Children�s hospital for the past two weeks to get the �cocktail� right for Maddie. I think I know more about the medical field and medications then they do. I had to explain to the pharmacist that Maddie needed the vitamin B-50 (what ever the heck that is) along with all the other B vitamins to be combined together to give to Maddie through her J-Tube. The pharmacist said it couldn�t be done, I told him to make it into a compound solution or a suspension as they call it. He said �wow I didn�t think of that, let me talk to our compound group and see what they say�. I heard back two days later that they would be combining the vitamin B�s together into a compound but that they would have to put it into a capsule that we could open and dissolve very easily. The Co-enzyme Q10 is a whole another story�. It smells so bad and it gives Maddie very bad gas and horrible messy diapers. We will give it a trial run for about 6 months, if we don�t see any improvements with her overall health we will discontinue it.

Steve, Maddie and I participated in the Relay for Life Walk (American Cancer Society) in Hudson Friday night. As many of you know I lost my father to cancer when I was 15 he was 51, this charity is very near and dear to me. It is incredible to see the number of people who have lost their battle to this horrible disease but it is also incredible to see the number of people who have beat it or are battling it and winning! My favorite part of the charity event is the luminary ceremony in the evening with all the paper bags lined up along the track lit with a candle which glows with the name of the person you are recognizing. I have always made one for my dad from my brother and sisters, this year I made one from Maddie as well. Unfortunately the luminary ceremony was rained out so they couldn�t have it but I did get a picture of Maddie with her bag before the event.

We are excited to have Grandma Tessie, aunt Tissy, aunt Diane, aunt Neesie and Cousin Emily come this weekend to take care of Maddie Saturday night while Steve and I attend a wedding. We are looking forward to a night �off� knowing Maddie is in good hands with her aunts and grandma.

Love,
Steve, Darla and Maddie

Monday, June 12, 2006 9:39 AM CDT

Maddie is still having difficulty with her retching. I spoke to Maddie's doctor's nurse on Friday regarding what options we can try, she suggested "venting" Maddie's stomach. We are basically draining her stomach contents, what little she has, into a diaper to help eliminate having anything in her tummy which seems to be helping a little. Hopefully, this will continue to get better.

We had a great visit with Grandma Tessie this past week. Grandma came up to help me plant my flowers and of course spend time with Maddie. I think grandma had as much fun as Maddie did and she certainly spoiled her as usual. On one of our shopping sprees we bought Maddie a swimming pool to keep her cool on the hot days.

Maddie's therapy sessions are about the same, she does really well one day then not so good the others. I hope she will start having better days since her retching episodes are getting better. Her therapist's just keep plugging along with her - they are awesome!

Have a great week.

Love,
Steve, Darla and Madeline

Sunday, June 4, 2006 9:32 PM CDT

Madeline had a rough week overall - she experienced more retching. She apparently is retching on her own secretions, it's worse in the morning. Since we have switched most of her meds into her "J" tube she is receiving very little in her tummy. I will call her GI doctor this week to find out what else we can do to help her through these retching spells.

Madeline was a real trooper for her EKG this past Friday. She laid still for over half-an-hour, the tech couldn't belive how well she did. We won't get the results for about a week or so but I believe everything looked good.

Despite her retching Madeline has been in a great mood! In fact we did a few "first's" this weekend. We went to the Roberts'Good Neighbor Days carnival/fair Friday night. Maddie and I went on the carousel, I think she really liked it or it might have been the fact that I was holding and kissing her. Sunday after church we went back to Roberts for the parade - we were actually in the parade on Tony and Brenda's wagon. It was a bit hot but Maddie had a great time. I covered her in sunscreen (SPF 45 ) and she still got darker than I did... We all had a great weekend.

Love,
Steve, Darla and Maddie

Monday, May 29, 2006 5:28 PM CDT

Happy Memorial Day! We had another good week, although Maddie had a few more episodes of retching this past weekend then all of last week. We traveled to Marshfield and Stevens Point, WI for my nephew Jordan�s graduation. It was very hot but a very nice weekend to say the least.

Maddie did very well traveling and she actually spent more time outside in the past two days then she ever has. We had a great time at grandma and grandpa�s house and at aunt Diane and uncle Hugs house. She enjoyed being held by all the �aunts� and of course Grandma Tessie who doesn�t get to see her as much as she would like. She had a fun time with her cousins Emily and Hanna as well.

Maddie is slowly working on gaining some of her strength back in therapy. She lost so much of it when she was having difficulty breathing. We hope she continues to sleep well at night and therefore more eager to work in her therapy sessions during the day. Right now it is really hit or miss with her.

Maddie is having an EKG on Friday to make sure nothing happened to her heart when she was having the horrible breathing problems. Maddie�s new respiratory doctor wants to confirm she did not experience any damage to her heart that week she had difficulty breathing. The initial tests which where blood gas tests indicated everything was normal but he just wants to make sure they are covering all the bases. After the EKG we will do one more sleep study towards the end of summer just to make sure she is still doing well on the CPAP at the level of assistance it is giving her. I also don�t have to give Maddie her nebulizer (Bubbles the Fish) treatments everyday, just when I feel she needs some help along the way.

Hope you all had a safe weekend!

Love,
Steve, Darla & Maddie

Sunday, May 21, 2006 4:19 PM CDT

We had a great week! The CPAP seems to be working, Madeline is breathing better during the day. Maddie is not used to the mask yet, she did have a few nights this past week that she woke up around 1:00 AM crying and trying to get the mask off by yawning it off. We had at least two nights where she could not fall asleep again right away but she did well the next day regardless of the restless night before.

Maddie will be getting a new aide starting on Friday. Shawnda will be taking Trisha�s place while she goes to Africa for two months. Maddie broke in Shawnda this past Monday � Maddie cried for about 3 hours straight because she was so tired from the night before. Fortunately Heidi convinced her that this is not how Maddie is and that she is a really good little girl who loves to smile and coo!

Madeline�s seizures have gotten a little better, she doesn�t seem to be having as many while she attempts to fall asleep. We had adjusted one of her meds two weeks ago, so far it seems to have improved this particular pattern. Maddie�s retching has improved dramatically as well since we started putting more of her medication into the �J� port (intestines) instead of her tummy. Maddie may retch once or twice a week now instead of 8-10 times a day!

Steve and Maddie have been working on a new �trick� as Steve calls it, but it�s more of a workout for Maddie. Steve will sit Maddie on his lap facing out, and then ask Maddie to give him a kiss. Madeline will actually push herself up to get closer to Steve in order to touch his face with her face. It�s amazing to watch her react to Steve�s voice and his request for a kiss. She has been doing it several times this week so hopefully she will continue to do it.

Have a great week!

Love,
Steve, Darla and Maddie

Sunday, May 14, 2006 7:25 PM CDT

Happy Mother�s Day to all you mothers, grandmothers and godmothers out there! Today I got to spend my first Mother�s Day outside of the hospital with Madeline and Steve. It was cutting it close � we were discharged from the hospital yesterday thanks to Steve.

Yes you read correctly � discharged yesterday from Children�s/St. Paul. Our week started by Heidi and I taking Madeline back to the doctor last Tuesday due to her respiratory problems. Her pediatrician decided to do chest and upper airway x-rays which looked great. She also decided she wanted to do a sleep study to determine if Maddie was suffering from sleep apnea, which could make her breathing worse during wake hours as well. Madeline�s breathing was getting worse by the day and I was getting more and more concerned by the hour. We took Maddie to see the sleep specialist on Thursday, he took one look at her left the room, came back and said he was admitting her to the PICU because she was in �full respiratory distress� and needed assistance immediately. Within half an hour we were in the PICU talking to the doctor (who knows Maddie very well) about what we were dealing with. At this point they were very concerned for her well being, I called Steve to get to the hospital ASAP! They were talking about either putting her on a ventilator or possibly doing a tracheotomy.

We moved Maddie into one of the rooms and got her into the crib. She seemed to settle down once we had enough blankets behind her and the bed elevated enough to help her breathe. Once Steve arrived we were able to talk about our options a little more calmly because Maddie wasn�t as stressed as she was earlier, her breathing started to slow down and it wasn�t so labored. Steve and I spoke to several of Maddie�s doctors and decided the sleep study would still be the best way to document what Maddie does at night while she sleeps.

They put a CPAP (constant positive air pressure) mask on her which only covered her nose but they had to change it to a full face mask that covers her mouth and nose shortly after that because she only breathes through her mouth. Steve and I stayed at the hospital in the �sleep rooms� they provide to parents with children in the PICU. I couldn�t sleep because I couldn�t hear Maddie breathing, Steve on the other hand was out like a light. I finally went out at 4:00 AM to see how she was doing. The tech said she was doing great, she was sleeping so peaceful. Maddie�s diagnosis is severe obstructed sleep apnea which means she will be sleeping with the CPAP from now on. We are hoping that if Madeline continues to get a good night rest her breathing will be better during the day. So far this seems to be working.

We are also adding another doctor to our family, a pulmonary specialist. Madeline�s apnea episodes are due to her low tone and lack of ability to clear her airway. The pulmonary doctor will be following Maddie to make sure her �mechanical� deficiencies are monitored. After this stint in the hospital we are starting to understand the natural progression of Maddie�s disease. Maddie was once again a little trooper, smiling and cooing for the doctors and nurses. As I stated in my last entry � our little �tower of power� never ceases to amaze us!

Love,
Steve, Darla and Madeline

Monday, May 8, 2006 12:28 AM CDT

Maddie was feeling better this last week but she was having difficulty breathing. We ended up taking her to her pediatrician on Thursday because Maddie was in respitory distress. Maddie was �reverse breathing� as her therapist called it. However, by the time we got to the doctor�s office she was breathing much better. Her doctor prescribed a steroid for three days to help with the swelling and inflammation in her throat from the reflux. Her doctor also suggested we start giving Maddie nebulizer treatments twice a day. The nebulizer treatment will help open up Maddie�s throat and lungs to help her breathe better. The treatment is commonly used by people with Asthma. Although Maddie doesn�t have Asthma we hope it will help.

Our appointment with the metabolic specialist went very well last week. The doctor basically told me there is no cure for Madeline�s mitochondrial disease (we knew this) but we could certainly give the vitamin cocktail a trail run. I told her that Steve and I are fully aware of the situation with Maddie and that our main goal is to optimize treatment and care for her. We are hoping the vitamin cocktail will help alleviate some of the symptoms and to help slow down the progression of the disease, however this may never be met. The doctor told me they have been very successful with having several insurance companies pay for the cocktail due to the medical necessity in Maddie�s overall treatment. However, the �trial run� is just that � if we don�t see an improvement within 6 months we will be taking Maddie off of the cocktail. We spent some time touching on our future with Maddie, but like all the other doctors she was unable to give me any answers about Maddie�s longevity. We have been told our little angel will not be with us long but they can�t give us any timeframes, it could be years or less than that. The healthier she stays the better! Steve and I have started to tell more and more of our friends about Madeline�s prognosis and how much we appreciate everyone�s love and support.

I have asked for a �Care Conference� with Madeline�s top 4 doctors to discuss our plan for Madeline and what we do next. Madeline still continues to retch even though she is getting very little put into her stomach. We are trying to decide what other options we have since we have been told by several of her doctors it is not wise to put Maddie under anesthesia for any procedures or surgeries. They don�t think Madeline would be able to come off the ventilator very easy and it is possible she would end up having to have a tracheotomy which Steve and I are trying to avoid all together. Maddie�s pediatrician is working on getting this scheduled.

As usual Maddie is the little trooper she has been from the moment she was born. She continues to amaze us with her smile and her incredible spirit. I heard once that �Madeline� means �tower of power�, I�m not sure if this is completely true but I certainly believe it to be true in Maddie�s case.

Love,
Steve, Darla and Madeline

Monday, May 1, 2006 1:59 PM CDT

Madeline is feeling better this week. Her ear infection, sinus and congestion have cleared up but she still has a problem breathing due to the reflux. We are putting some of her meds into her �J� Port which goes directly into her intestine, bypassing her stomach. We are doing a trial to see if cutting back on what we put into her stomach will help with the reflux. So far it has helped a little bit but she is still retching when we put anything into her tummy. I�m afraid we may have to do surgery again but I�m not sure.

This week we will be meeting with the metabolic specialist at Fairview University Children�s hospital. We are meeting with this new doctor for a couple of reasons. The first to make sure we are covering everything with Maddie�s new diagnosis. Secondly, to get on the vitamin cocktail and possibly find out where we can get the vitamins we need cheaper. I was told this appointment could take 2 or more hours but since they will have received most of Maddie�s medical records beforehand we shouldn�t be there that long. I�m sure you have probably guessed Madeline�s medical records are now at 5 different hospitals and there are VOLUMNS of binders for her. It takes a good 2 months or more for them to receive her records from the different hospitals.

I�m hoping the weather will clear up this week so we can get out for our walks and swinging Maddie in her swing. Heidi and Trisha are working out great, so good in fact I�m probably going to look for a very part time job here in Hudson. I would like a few hours a day so I can get out of the house but not shopping like I�m doing now. That shouldn�t be too hard to find should it?????

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, April 23, 2006 6:36 PM CDT

Christ Is Risen� Indeed He Is Risen! Maddie finally made it to her first Orthodox Easter celebration. Although this is her 3rd Easter it is the first time she actually made it to the service. Our Easter service starts at 11:30 PM Saturday evening and is completed at 1:00 AM. Then we have our regular Sunday service since we�re all there anyway. After that we have the blessing of the baskets and then we get to eat! Maddie made it until 1:30 AM before she fell asleep in Steve�s arms. We were hoping for another �AMEN� out of the peanut but no such luck. We�re just so happy we were able to take her this year.

We left church around 2:45 AM and went to Aunt Joey and Uncle Neil�s house for breakfast. We got home around 5:30 this morning and to bed around 6:00 � Maddie was up at 7:00 AM! She was all smiles, needless to say Steve and I were not as awake as Maddie was. We had Steve's side of the family over this afternoon for more Easter celebration - although we were all tired it was a wonderful day!

Maddie continues to be congested and is still retching a lot even though her food is not going into her stomach. We have an appointment with Maddie�s Ear, Nose and Throat doctor on Wednesday as a follow up from three weeks ago. Hopefully she will have an idea of what we can do to help Maddie with her congestion. I�ll have to work with Madeline�s GI doctor to figure out what we can do for her retching. Although the retching has decreased significantly she is still doing it several times a day with a few times at night.

We have not been able to alter Maddie�s seizure pattern by adjusting the meds. Dr. Gilles would like us to meet with another neurologist, her co-worker. He would like to meet Maddie and get an idea of what she is like. It�s one thing to read about a patient through their medical records and another to meet them face to face for treatment. Dr. Gilles just wants to make sure we have all our bases covered. We�ve had experience with this particular neurologist about a year ago but Madeline has changed so much since then he really needs to see her again.

Love,
Steve, Darla and Maddie

Sunday, April 16, 2006 7:26 PM CDT

Happy Easter! Although it is not our Orthodox Easter yet, our Easter is next weekend - I hope you all had a wonderful weekend.

Maddie is feeling better this week. She is still coughing a lot and seems to be as congested as she was last week but I think she is improving overall. Maddie had a G-J tube placed on Thursday to help with her reflux. Maddie has had this particular feeding tube before. The G port goes into her stomach and the J port goes directly into her intestines. We are bypassing her stomach when we feed her through the J port, her medications are going into the G port. Her retching has decreased considerably but she is still retching a few times when she coughs too hard. Hopefully the retching will disappear all together when she gets over this cold.

We are getting closer to getting Madeline on the vitamin cocktail of Coenzyme-Q10, B2 and Carnitine. Maddie is already taking Carnitine but we are having a difficult time trying to find the Co-Q10 and B2 in a liquid form. I�m trying to get it through a local health food store and the internet. It is available but extremely expensive for a small amount. Since these are vitamins our insurance company doesn�t pay for them � we will be. Dr. Gilles found one manufacturer that sold the liquid form of Co-Q10 for $180.00/bottle which would last us maybe a week. My search continues�

Steve has off this week which means we (Steve & I) will be doing a lot of work outside such as yard work � I really hate raking! Steve will also get to see Maddie work with her therapists and some of things she is doing these days. Maddie is having difficulty with her strength but she is changing so much in other areas.

Maddie giggled on Thursday like she has never giggled before � she actually squealed. Today we had a Baptism in our church, Steve and I were the godparents so Aunt Joey took care of Maddie. At a certain point during the service we all responded by saying �AMEN� several times, Joey and two other women heard Maddie say �Amen� in response as well. A little girl of one of the women asked her mom � �When did she learn to talk?� Maddie said her first word today � AMEN!

Have a great week!

Love,
Steve, Darla and Madeline

Sunday, April 9, 2006 4:56 PM CDT

Well I spoke to soon in my last entry� Maddie was sick this past week with an ear infection, possible strep throat and she was so congested she could hardly breathe towards the end of the week. Madeline�s Ear Nose and Throat doctor said her reflux is really affecting her throat again. The reflux is causing her throat to be swollen and irritated which is affecting her breathing. I hopefully will speak to Maddie�s GI doctor early this week to find out what we can do about her reflux without going through surgery again to tighten Maddie�s Nissen. Madeline continues to retch several times a day, especially at night due to her reflux and drainage from her sinuses. The doctor prescribed a pretty heavy duty antibiotic for Maddie which she will be taking for three weeks.

We went to Marshfield this weekend for a surprise birthday party for uncle Peef. Maddie did very well traveling there and back which made the trip that much better. Uncle Peef was surprised so it was a successful party and so much fun. Maddie really enjoyed hanging out with her cousin Hanna as you�ll see in the picture. We also celebrated Jordan's 18th birthday today since we were all home, his actual birthday is on the 20th.

Madeline continues to have about 20-30 seizures a day while she is trying to fall asleep. We have not been able to control them by adjusting her medication. Dr. Gilles said it will become more difficult to control her seizures because of her Mitochondrial disease and the way it affects her cells and how they process the medication. We will continue to try other meds and different doses of the meds to find something that works.

Maddie and I are looking forward to the nice weather this week so we can get out for our walks with Heidi and Trisha.

Love,
Steve, Darla and Maddie

Sunday, April 2, 2006 6:50 PM CDT

Maddie is still fighting a cold of some sort. She is honking like a goose (breathing) and coughing a lot. I was able to make an appointment with her Ear Nose and Throat doctor for Thursday but I�m hoping I can get her into her pediatrician earlier this week. Maddie is sleeping better now but this cough is waking her up during the night.

Maddie will start seeing yet another doctor in May � this doctor is a metabolic specialist at the University of Minnesota Fairview Children�s Hospital. We will meet with the doctor to discuss Madeline�s disease and what we need to do to manage it. We were referred to this doctor by Dr. Gilles because of the complexities of the disease. Dr. Gilles and Dr. Sarafoglou will work as a team managing Madeline�s ongoing care. Dr. Sarafoglou will be the one prescribing the vitamin cocktail so I guess we won�t be able to start it until after we meet with her.

We have been enjoying the wonderful weather lately and taking Maddie out for walks almost every day. One of our strollers has a really nice plastic cover we can put over Maddie to protect her from the elements � mostly the wind this week. Either Heidi or I were up for walking in the rain. Anyway, Maddie really enjoys getting out and about even though she isn�t feeling the wind in her hair quite yet.

One of Madeline�s molars is trying to come through which could take awhile since her gums are so swollen from one of her seizure meds. She doesn�t seem to be bothered by it at this time.

Not much else to report � Have a great week.

Love,
Steve, Darla & Maddie

Sunday, March 26, 2006 5:51 PM CST

Madeline had a pretty uneventful week � she was back to her old self again and we didn�t have to make any special trips to the doctor.

We met with Dr. Gilles on Thursday and discussed the information we received from Atlanta. Steve and I discussed most of the issues with Dr. Shoffner in Atlanta when we were there but we just wanted a better understanding of what it is and what it means for Madeline. Madeline�s disease, Mitochondrial Complex I & III Deficiency, affects her cells. Mitochondria are responsible for creating more than 90f the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Madeline�s symptoms include seizures, muscle weakness, developmental delays, gastro-intestinal disorder, respiratory complications when she is sick and susceptibility to infection. We are so fortunate Maddie hasn�t gotten sick this season.

I know you are probably asking what does this mean? We have been told that Maddie will probably not walk or talk, she may make some gains with her strength but it won�t be much. As I stated in a previous entry Steve and I are ready and able to accept the news about Madeline�s diagnosis and prognosis. The prognosis is what we are working on now. We are anxious to start the vitamin cocktail which will not cure the disease but it will help Madeline�s body not work so hard. Dr. Gilles said we could see a slight change in Madeline because of the vitamins � more smiles and coos will hopefully be coming our way. We should hear something this week regarding the vitamin dosing so we can start.

Madeline�s PCA�s are working out great! Heidi is completely trained in and Trisha will be after a few more days with Madeline. Although getting things done around the house has been nice, it�s very strange having someone else taking care of Maddie. Oh and Denise don�t worry about your stuff in our basement � I�m not that motivated.

Steve and I thank all of you, our family and friends who have supported us through everything with Madeline � we feel your love and hope we will remain in your thoughts and prayers.

Love,
Steve, Darla and Madeline

Sunday, March 19, 2006 4:46 PM CST

Madeline has had a pretty good week overall. Her therapy sessions were canceled Monday and Thursday due to weather. She did have her PT session on Tuesday but she was so exhausted the therapist couldn�t really do anything with her except bounce on the ball for a short while. The rest of the time Madeline was trying to fall asleep and having lots of seizures.

Madeline�s PCA (aide), Heidi, was here Wednesday thru Friday. Wednesday we ended up taking Maddie to my dentist because her gums were so swollen and red I thought they were impacted and infected some how. It turns out she is cutting her two year molars - whew I thought we would be making a trip to the ER. Thursday we took Maddie to Children�s because Maddie was lethargic and wasn�t opening her eyes much in the morning. Her pediatrician said she had a touch of croup along with her cold and prescribed a steroid to take care of her swollen airway. Friday was uneventful!
Heidi will be here Monday, Tuesday and Thursdays. Another aide, Trisha, will be here Wednesday, Friday and Saturdays.

It is very weird having someone else taking care of Madeline while I�m at home too. The aides do everything for Maddie so I�m able to do lots of things around the house I couldn�t get done before. I�ve done some touch-up painting, went grocery shopping and this week I�m tackling the closets.

We meet with Dr. Gilles on Thursday to go through the information from Dr. Shoffner. We�ll also discuss the vitamin cocktail and what other meds we can try to get Maddie�s seizures under better control.

Grandma Tessie was here Tuesday evening thru Thursday morning for a visit as well. We wish she could have stayed longer but it was great to see her even if it was just a few days.

Hopefully this week we�ll be back to our regular schedule and Maddie will get back to herself.

Love,
Steve, Darla and Madeline

Sunday, March 12, 2006 5:31 PM CST

We received our packet from Atlanta this week. It is 47 pages long consisting of all her test results and a five page recap from Dr. Shoffner. Needless to say it is a bit overwhelming and we don�t understand all of it. Dr, Shoffner did come up with a diagnosis of Mitochondrial Complex I and Complex III defect versus the Complex IV defect that the doctor from Cleveland came up with. As with the Complex IV defect, Madeline matches most of the symptoms of Complex I & III but not all the traits.

Dr. Shoffner would like to continue the testing with DNA sequencing of the mitochondrial genome (gene) to determine if the Complex I & III defect is the primary issue which could take 6 � 10 months. He feels that the clinical features, metabolic features and oxidative phosphorylation enzymology are consistent with Complex I & III defect but he wants to make sure they are not missing anything. Dr. Shoffner also recommended the vitamin cocktail of Coenzyme Q10, L-Carnitine (she is currently taking this) and B2. This vitamin cocktail was recommended by the doctor from Cleveland as well but when we met with Dr. Shoffner in December he wasn�t real big on using the vitamins but apparently he has changed his mind. We will be getting on the Coenzyme and B2 vitamins as soon as Dr. Gilles can work out the correct dozing for Madeline.

Steve and I meet with Dr. Gilles in two weeks, we will go through the findings and the recommendations from Dr. Shoffner in greater detail with her. I�m not happy we have to wait another 6-10 months to get an absolute diagnosis but I guess we have waited two years so what�s another 10 months?

On a lighter note � we have a new PCA for Madeline. Heidi started on Friday. We already broke her in with appointments at Children�s. Maddie had a lab draw for med levels first. Maddie has a slight cold this week and since most all the doctors know Maddie or at least know of her, we tried to sneak her in with one of the doctors to look her over. I told the woman checking us in to mention to the doctor that Madeline Fall is here and has a slight cold, he�ll see her. She looked at me like I was nuts trying to get in without an appointment. She came out after talking to the doctor and told me the doctor would see us before our 10:00 appointment with the Sleep Specialist. We didn�t actually get to see him before our 10:00 since he was running late as it was.

The Sleep Specialist basically told us Madeline suffers from insomnia due to all of her medical and neurological issues. He also said we didn�t have to do the sleep study because he has seen plenty of these cases before. He prescribed three medications but had to run them by Dr. Gilles to get her approval because of the potential drug interaction with her seizure meds. Hopefully, one of them will work and Steve and I can get more then an hour sleep at a time. I took the opportunity to have him listen to Maddie and check her ears � she was clear all around.

I�m happy we are getting out of the cold and flu season for Madeline�s sake. It is very difficult to minimize exposure to everything but I have certainly tried to do that with her. We have been very fortunate that Maddie has not gotten that sick this season.

Love,
Steve, Darla & Madeline

Sunday, March 5, 2006 4:52 PM CST

Madeline had another rough week with seizures. I think she is just so tired she is having more and more each time she tries to fall asleep. I spoke to Dr. Gilles on Thursday, she prescribed a medication that is used to treat anxiety. Maddie doesn�t suffer from this but she thought it would mellow Maddie to the point of sleepiness. This did not happen � Madeline was so wired she couldn�t fall asleep for anything. We went back to our regular �sleepy� stuff we normally give her Saturday night and she slept most of the night.

We are seeing a sleep specialist this Friday. Like I mentioned before, children with neurological issues tend to have a lot of trouble with sleep. The purpose of the sleep study is to find out what is really going on with her brain when it goes into �sleep� mode. We will meet with the doctor to go through Madeline�s history of sleep patterns and what is happening now. Dr. Gilles spoke to this new doctor this past Thursday, they agreed we needed to get Maddie in as soon as possible. Once the doctor determines if he is going to do the sleep study we will schedule to stay in the hospital overnight.

Madeline's PCA started on Tuesday - she bascially followed me around watching everything I do with Maddie. Julie was suppose to be here Thursday as well but she called in sick due to a bad reaction to a new medication she is taking. She will be here again this Tuesday. She should be starting full time with Maddie in a week or so.

Maddie had a touch of Pink Eye this past week but I caught it early enough that it did not get bad at all. I�m sure she catches most of this stuff from her therapists who see so many kids in a day.

We have not heard from Atlanta yet � I will be calling tomorrow to see where things are at. The doctor told us it would be 6-8 weeks before we heard anything. The nurse rolled her eyes and said it would be more like 10-12 weeks. We are at 12 weeks this week so I�m sure we are getting close to receiving Dr. Shoffner�s diagnosis/prognosis. As I stated previously, Steve and I are prepared to accept whatever type of news we get about Madeline. Our goal is to optimize treatment and care for our little angel.

Love,
Steve, Darla and Madeline

Sunday, February 26, 2006 6:54 PM CST

The birthday party was great! Madeline was spoiled once again by her aunts. Madeline did very well in the car going to Marshfield and on our way home this afternoon. Madeline�s cousins, Emily and Hanna were very happy to see her and to help out any way they could. Thank you so much Keith and Kris for such a fun weekend.

We continue to wait for Madeline�s aid to start. The person we had lined up ended up breaking her ankle so she will not be working with Maddie at this point. I met another potential candidate on Friday, she seemed a little too shy for me but we�ll see how things work out. I was promised I would have more candidates to meet with this week and next. Hopefully, we will get a few people to work with Maddie soon.

Madeline�s working hard during her therapy sessions and starting to focus on more of the visual toys one of her therapists uses with her. The pictures don�t do her justice but she does seem to hold her gaze just a little bit longer then she used to with the toys.

We are working on trying to control the seizures Maddie continues to have while falling asleep. We are adjusting one of her medications weekly which makes her a little more tired. Do you see where I�m going with this??? She�s more tired, tries to fall asleep, has anywhere from 10-30 seizures trying to fall sleep but just can�t. After several unsuccessful attempts to fall sleep she gives up, she will usually try again a couple hours later. This usually goes on several times a day.

Love,
Steve, Darla and Maddie

Sunday, February 19, 2006 6:38 PM CST

Maddie had her EEG on Wednesday and thank goodness we didn�t have to stay the 8 hours. We arrived before 9 AM and we were able to leave around 12:30AM. The tech that put the electrodes on Maddie�s head is the same tech we had when Maddie was in the NICU after she was born. Kay couldn�t believe how much Maddie has grown and of course had to comment on her hair. I held Maddie after the electrodes were put on and within a half hour to 45 minutes Maddie was trying to fall asleep and doing her thing. We captured three or four episodes and were able to leave after that.

We are working with Dr. Gilles to get these seizures under better control. Basically, all we can do is play around with her current medication since introducing a new medication quickly could cause her to develop another movement disorder caused by a drug interaction between all her meds. I feel so helpless but we really do have to wait it out.

Surprisingly Maddie has been in good spirits these days even though the seizures have interrupted her naps and her sleep. She has done very well with her therapists except for Thursday she tuckered out before the hour was over. All four therapists have noticed Maddie�s increased awareness and alertness. They are working on things she could do months ago but lost when she started getting the sinus infections. Hopefully she will continue to be healthy and keep on this great run that we have had.

We travel to Marshfield this weekend to celebrate Maddie�s and her cousin Hanna�s 2nd birthday.

A note from Maddie, she says Thank you to aunt Neesie for playing with her on Saturday.

Love,
Steve, Darla and Madeline

Sunday, February 12, 2006 8:12 PM CST

Maddie received her own Kid Kart this week as you can see in the picture above. I wanted a black one but the company we went through does not offer black in this type of chair so we went with blue. Maddie really seems to like her chair and she really likes the activity tray. It will be interesting to see how she uses her arms and hands on the tray. I hope she will be able to grasp and hold on to items easier this way.

Madeline has her EEG this Wednesday at Children�s/St. Paul. Hopefully we will capture several of the seizures she has while trying to fall asleep. Dr. Gilles scheduled the test to be 8 hours but if we get what we need we won�t have to stay there all day. I�m sure I�ve mentioned how boring an EEG can be. Basically, I sit in a room and hold Maddie. The leads are connected to her head, the computer is running live the whole time butI push a button to tell the computer to record the activity I suspect is a seizure (it's easier and faster for her doctor to skip directly to the activity I'm questioning), then I write down on a sheet of paper the time the event happened, the type of seizure and how long it lasted. When we did the EEGs at Gillette they kept the room so cold so the parent wouldn�t doze off too.

Maddie had an eye appointment on Friday which turned out to be a great appointment overall. Maddie did not like the eye drops to dilate her pupils but she did so well while we waited for her pupils to dilate she actually fell asleep before the exam. Per her doctor Madeline gained some control of her eye movements but still has a long way to go. Her doctor was pleased with her improvements however slight they are. Children with severe neurological issues such as Maddie have difficulty with control of their eyes so they tend to look around more or up at the ceiling. Maddie�s doctor said she does this but that she uses her peripheral vision because her head is usually off to the right or left, this is not a bad thing � she simply adapted how she had to.

We travel to Marshfield soon to celebrate Maddie�s 2nd birthday along with her cousin Emily with the Merkel side of the family.

Happy Valentine�s Day!

Love,
Steve, Darla & Maddie

Sunday, February 5, 2006 8:31 PM CST

We met with Dr. Gilles this past Monday � it was basically a meeting to catch up on everything that has been happening with Maddie over the last two months. We discussed adjusting some of her meds and she wanted to get an EEG of Maddie�s new seizure pattern. Hopefully we will get the EEG done this next week or the week after that. Madeline continues to have a lot of seizures when she is falling asleep which makes it very difficult for her to take a nap for any length of time.

Madeline had another good session with her speech therapist (feeding clinic). The therapist started with applesauce which is NOT one of Maddie�s favorite things. Brenda quickly switched to the vanilla pudding which just so happens to be one of Maddie�s favorite things to eat. Brenda made note not to try the applesauce again.

I met with one of Madeline�s PCAs this last Friday. Kathy seemed very nice and thought Maddie was the cutest little thing � loved her hair! If all goes well with her orientation this week she should be able to start this Thursday. I will teach her everything she needs to know about Madeline which could take two to three weeks before she�s comfortable being alone with her. I�m just so happy to have someone in the car with me � Maddie does not do well with car rides.

Madeline�s PT & OT therapists have noticed she seems to be more alert and aware of her surroundings which make her therapy sessions much more interesting these days. Thursday she was smiling and cooing for Teresa we spent more time being entertained by Maddie than working out.

Love,
Steve, Darla and Maddie

Sunday, January 29, 2006 8:58 PM CST

Steve and I had a wonderful time away this weekend. My sister-in-law Kris (aunt Tissy), my sister Diane, my sister Denise (aunt Nessie) and my niece Emily came up Friday night to take care of Madeline so Steve and I could enjoy some much needed time away. Although it was very weird to be away from Madeline we had a great time at the 3rd Annual Fall Family Ice Fishing Contest on Saturday. Since everything went so well with Maddie the aunts have offered to do it again this summer and for next years fishing contest as well.

Although neither Steve or I caught any fish � I guess you actually have to fish to catch a fish, we had so much fun with the gang. Brenda and I pretty much sat in the portable ice house with the heater on enjoying staying dry and drinking beer, lots of beer�. Everyone else fished.

Maddie did well this past week at her speech therapy (feeding clinic) session. Her therapist said Madeline was doing very well for as much trouble as she has been having with choking and gagging. Maddie did retch towards the end of the session but she cleared it and recovered from the episode fairly quickly.

We meet with Dr. Gilles tomorrow morning. We haven�t seen her for 2 months since she took time off after she left Gillette and before she started at Children�s in St. Paul. I�m very happy she moved her practice to Children�s from Gillette. Gillette does incredible things for special needs children but ever since the barium incident in 2004 it has been difficult for me to walk into that place. I will miss a few nurses Maddie had while she was there but I will not miss going there that�s for sure.

Dr. Gilles will probably adjust some of her seizure medications since she is pretty low on all of them. We may taper Maddie off one of them and introduce a new one because one of her seizure medications seems to be affecting her tone. Maddie�s therapists and I have been discussing the pros of this medication versus how it is affecting the muscle tone she was gaining and is now apparently losing. I suspect our meeting will be over an hour but we�ll get to the bottom of things.

I just want to say a special THANK YOU to Kris, Diane, Emily and Denise for taking care of Maddie this weekend! Steve and I loved our time away � we missed Maddie but we really had a wonderful time!!!!

Love,
Steve, Darla and Madeline

Sunday, January 22, 2006 8:27 PM CST

Finally - we are all healthy again at the Fall residents. Steve, Maddie and I are over the bug we had. I still have a slight touch of an inner ear thing but feel tons better then last week.

Maddie is smiling more and more each day. I think she is starting to recognize her name, she coos when she hears me or someone else say it. She just started doing it this week, hopefully she will continue to do it. Maddie�s therapies sessions are starting to improve, she is getting her strength back slowly but surely.

I met with Maddie�s GI doctor this past Wednesday to discuss our options to help Madeline with her reflux situation. Madeline has started to arch again and is uncomfortable when she is lying more flat. The doctor suggested increasing her Prevacid to two times a day and we also increased another medication that helps cut down her secretions. We also tried another venting system which helps her at night when we feed her but it did not work that great.

Maddie will be getting a Home Healthcare Aid or a PCA soon who will be taking care of her for several hours a day a few times a week so I can get out of the house and do errands or something. It will take awhile to get used to but it will be good to get out to do things. I�m not sure when this will start but I received the call on Friday to let me know we got the approval. Steve�s a little worried I�ll hit the malls the first chance I get�

We had our house blessed today by Father Chris which is an Orthodox tradition every new year. We invited Father Chris� family to join us which was really nice.

Love,
Steve, Darla & Maddie

Sunday, January 15, 2006 9:45 PM CST

It's been another week from you know where at the Fall's. I was sick this week and Madeline has another ear infection. Needless to say we'll all be happy when we get rid of the "bug" that's been hanging out at our house.

We celebrated Maddie's birthday today with the Fall family. We were happy that grandpa Bob and grandma Tessie and aunt Neesie and uncle Dan were able to make it today as well. I believe fun was had by all or least the kids had fun chasing each other and playing with their ballons courtesy of aunt Joey. Maddie was a little fussy but she has been that way the last couple of days.

Madeline's seizure pattern has changed yet again. She is not having seizures when she is awake but she has started having them when she is sleeping or trying to fall asleep. This is very unusual for her. We don't see Dr. Gilles until the end of the month, hopefully we can stop them by adjusting her medication.

No word from Atlanta yet - we suspect we'll get something in the mail in February.

Love,
Steve, Darla & Maddie

Sunday, January 8, 2006 7:09 PM CST

Well what a week at the Fall household... Steve and Madeline both got sick earlier this past week with bad colds. I hung in there until Friday - then I got the bad sore throat and congestion they both have. I felt much better yesterday but Steve and Maddie are still coughing a lot. Both of them stayed home from church today - they slept most of the day so I guess they needed the rest.

The Upper GI test on Thursday confirmed my fear - Maddie's Nissen has loosened enough to allow her to reflux again. This is the reason she is gagging and retching so badly. Maddie also had a lot of phlegm in her stomach which means she still has a lot of drainage from her sinuses. I spoke to her GI doctor late Friday afternoon since I had to cancel our doctors appointment with him that morning due to me not being able to get out of bed... Anyway, he wants to see to how she deals with the reflux episodes before we go into "panic" mode. If she continues to retch we will try to address the situation with medication and avoid doing any kind of surgery to repair the Nissen.

Steve and I knew this could happen to the Nissen when Maddie had it done last January - we just thought it would have lasted longer then it did. Perhaps it would have if Maddie didn't have the sinus issues she had the end of the year. The drainage caused her to retch so much the actual force of the retching caused the Nissen to loosen.

Hopefully Steve and Madeline will be feeling better soon - poor little Maddie doesn't know whether to cough, sneeze, choke, gag or snort. She is making some pretty funny noises these days.

Maddie will be 2 YEARS OLD on Wednesday (1/11) - where has the time gone? Since our family has been so sick including grandma Fall we will be celebrating her birthday next weekend with the Fall family.

Love,
Steve, Darla and Madeline

Sunday, January 1, 2006 7:10 PM CST

HAPPY NEW YEAR! We hope everyone had a safe and Happy New Years Eve last night. We were at friends of ours to celebrate the evening. Steve, Maddie and I were home before midnight but Maddie was so cranky she rang in the new year loud enough for all the neighbors to hear. We had our Fall family annual Christmas party today and Maddie was wonderful all day. She was so tired when we left this afternoon she fell asleep before we got out of the parking lot.

Steve had off this last week so Maddie and I were happy to have him home hanging out with us. Maddie is so out of her routine after these past few nights, we'll be excited to get back to our regular schedule now that the holidays are over.

Maddie is still a little weak from having the flu 2 weeks ago. She is really working hard in therapy but she lost a lot of strength she had gained with her head control. Two steps back for every one step forward...

Maddie has been choking and wretching quite a bit again so we are having an Upper GI Test on Thursday. We need to determine if there is anything wrong with the Nissen she had put in the end of January last year to stop the reflux. Hopefully the Nissen is still intact and Maddie is just wretching because she's not swallowing as usual and she is pooling her secretions. It is very hard to watch her wretch so much so often.

Maddie is starting to take more of her baby food again. We've held off feeding her orally because she was choking so much we did not want her to aspirate into her lungs. I just have to be very careful when I feed her, it takes awhile but she has been eating 1-1 1/2 ounces a day. I'll slowly increase the volume as she tolerates it.

Here's to 2006 - May you all have a wonderful year!

Love,
Steve, Darla and Madeline

Sunday, December 25, 2005 6:56 PM CST

MERRY CHRISTMAS EVERYONE! We had a wonderful holiday with the Merkel side of the family this year in Stevens Point.

Maddie received waaaaayyyyy too many gifts but of course the clothes were all adorable and the books and toys we can't wait to play with. The trip to Stevens Point yesterday was good but our trip home today was perfect - not a peep out of Maddie.

Madeline was in rare form last night for our Christmas celebration. Maddie cooed and smiled for everyone more then she has ever done - she was truly interacting with us. Steve and I couldn't have asked for anything better than that moment with our precious little angel. We were so proud of her.

Maddie is feeling better, she got over the flu by Wednesday. I think the Reindeer Ears daddy got for her last Sunday were instrumental in her speedy recovery...

We can only hope and pray for a healthier 2006 for Maddie.

Love,
Steve, Darla and Madeline

Saturday, December 17, 2005 5:49 PM CST

We made it home Thursday just fine - a little later due to weather and plane conditions in Atlanta. Thank you again Brenda for being our taxi service.

As I stated before, Maddie was truly an angel the entire trip. She did awesome Wednesday morning with the procedure. We were in the recovery room for about 4 hours - she was such a trooper. We got back to the Ronald MacDonald house around 3:00 and slept until 6:00 - Steve and I were beat and Maddie was feeling no pain since we were giving her Tylenol and Motrin to help with the pain.

Steve and I met some pretty incredible families at the Ronald MacDonald house. We enjoyed our stay and wish all the kids the very best with their recoveries. You go Cal!

Well we have only been home about one and a half days and Maddie is in the hospital again. She was very sick yesterday late afternoon and into the evening. She had very loose stools and lots of them. I was feeding her but it was going right through her. Around 3:00 this morning I called the ER at Children's and told them what was going on and they said to bring her in immediately. I thought she had Rotavirus which is very nasty, she tested negative for it. Steve was not feeling well himself so we had to call grandpa and grandma Fall to help out. Grandma Sharon was the lucky one to spend the day at the hospital with us. They ended up admitting Maddie to keep a close eye on her - you all know how she can change so quickly. I ran home to drop off grandma and pick up some clothes for tonight & tomorrow. Thank you so much Sharon for helping me out today I really do appreciate all that you and Walter do!

I need to get back to the hospital - I can hear Maddie screaming from here...

UPDATE: WE ARE BACK HOME! MADDIE HAD A HIGH FEVER THROUGHOUT THE NIGHT BUT IT BROKE THIS MORNING. MADELINE WAS ALSO TOLERATING HER FEEDS SO THEY DISCHARGED US AROUND 12:30 THIS AFTERNOON.

Love,
Steve, Darla & Madeline

Sunday, December 11, 2005 8:01 PM CST

Well this is the week we will be in Atlanta. Tomorrow and Thursday are actual travel days, Tuesday and Wednesday we will be at the hospital. We meet with Dr. Shoffner on Tuesday at 11:00 - our appointment should take about 3 hours. Wednesday morning Maddie will have her muscle biopsy and her spinal tap. The procedure should take about 30 - 45 minutes, she'll be
in recovery for awhile and then we'll be released. Hopefully she will not have any problems with the anesthesia this time around.

Steve and I are not expecting to get a lot of answers at this time, we know it will take awhile for the results to come back on the muscle biopsy. We are however, hopeful that we will find out about the vitamin cocktail we learned about from Cleveland. We are so excited to be meeting with one of the nations leading specialists to discuss Madeline's condition.

UPDATE: WE ARRIVED HERE JUST FINE YESTERDAY - MADDIE WAS AN ANGEL ON THE FLIGHT. WE MET WITH DR. SHOFFNER THIS MORNING, OUR MEETING WENT VERY WELL AND WE DISCUSSED WHERE WE GO FROM HERE. IT WILL TAKE ABOUT 6-8 WEEKS TO GET THE BIOPSY RESULTS BACK.

Thank you all for your thoughts and prayers during this time. We definitely feel your love and support! I will try to update Maddie's webpage while we are in Atlanta but I'm not sure if we will have access to the internet.

Love,
Steve, Darla and Madeline

Monday, December 5, 2005 10:29 AM CST

All the arrangements for our trip to Atlanta are done. I booked our airfare this past week and we are staying at the Ronald McDonald house by the hospital. We'll be able to take the shuttle to our appointments which means we don't have to rent a car. Maddie will not be admitted to the hospital, she'll stay with us which will be really nice. Madeline has spent a total of 76 days in the hospital this year - I am sooooo done with hospitals!

Steve, Madeline and I were blessed for our trip to Atlanta by our Archbishop yesterday at church. Archbishop Job from Chicago was visting our church this weekend, it was an wonderful opportunity to be blessed by him.

We spent Saturday at Tony & Brenda's cabin cutting down our Christmas tree and hanging out by the fire with friends. Although it was a little cold outside we were toasty warm by the fire. I think Maddie even enjoyed herself - she sat in her chair covered with blankets and took nap after nap.

Normally I don't talk about these issues but since it is the Holiday Season... Remember - it is better to give then to receive. If you have charities that you give to great! If you don't please take the time to donate to a Children's Hospital or a Children's Shelter or the Ronald McDonald House. Steve, Maddie and I have seen so many sick children these past two years. Often parents/families can't be with their children in the hosipital because they live out of state or they have children at home they have to be with. You would be amazed at how many children sit in their rooms with nobody with them but the nurses or maybe a volunteer that stopped by that day. I have been personally touched by several children I met and think of every single day - Austin I think of you the most! I pray for you and I hope you are doing well!!

Love,
Steve, Darla & Madeline

Sunday, November 27, 2005 3:56 PM CST

Finally! We received the date we are traveling to Atlanta... We will be there 12/12 - 12/15. We were told not to book our flights quite yet because the clinic has to confirm the schedule with the surgery team for the muscle biopsy which would be done on 12/14. My contact said she was sure they had Maddie on the schedule but needed to confirm one final time.

Maddie is trying out a new Kid Kart which is a stroller that has tons of adjustability and supports Maddie better than a regular stroller. We get to try it out for a week but I already knew from the first day that we will be ordering one as soon as we can. The stoller is wonderful and she seems to like it as well.

Grandma Tessie and Grandpa Bob were here for the Holiday. Grandma got to spend lots of time hugging, kissing and pushing Maddie around in her kart. Grandma sure liked to take her for "walks" throughout the house.

Maddie giggled this past Monday for the first time. She surprised herself, I think she was a little frightened of the noise coming out of her. We just had to call daddy and give him the good news. She hasn't done it again but I hope she will soon.

I hope you all had a happy Thanksgiving!

Love,
Steve, Darla and Madeline

Sunday, November 20, 2005 2:34 PM CST

Madeline is feeling better slowly but surely. I think this new antibiotic she is on is doing the trick. Maddie is sleeping better at night which means Steve and I are sleeping as well.

Maddie and I had a girls weekend, daddy was hunting. Aunt Neeise came over yesterday to watch Madeline so I could spend the afternoon with some friends. Maddie did great Friday night but had a little trouble sleeping last night. I think Zach (dog) decided since I was getting up so much with Maddie that he would join in on the fun. He started whining at 1:00 AM to go outside. Needless to say I couldn�t persuade him that he was fine and to go downstairs to sleep. I through on my coat and took him out to do his thing� We�ll all be happy when daddy gets home tonight.

I�ve about had it with the whole Atlanta situation � my patience have run out with all the parties involved. Thursday I spoke to all of them; insurance, Atlanta and Children�s and basically told them how frustrated I am and that I wanted a date by Friday. I received lots of calls saying they were feverishly working on Maddie�s case. We�ll see how quickly things move now.

Madeline is still arching a lot but I�ve come to the conclusion she is just bored. I think she�s just tired of being held and sitting around all the time. I�ve been working more on weight bearing which she seems to like. I stand her up on the floor and let her take her steps like she used to do. I�m also putting her on her tummy again, she HATES tummy time but at least she is tolerating it more then she did before.

Love,
Steve, Darla & Madeline

Sunday, November 13, 2005 9:29 PM CST

Maddie has been smiling everyday and cooing like you wouldn't belive. Maddie smiles everytime Steve or I hold her. However, everytime I put her down to take pictures of her she stops, I pick her up she smiles...

Atlanta is still working on the insurance situation so they haven't scheduled us yet. My contact stated they should have everything worked out this week so we should hear from them by the end of week.

We had our follow up with Maddie's ear, nose and throat doctor this past Wednesday and she still has a sinus infection. Dr. Malone said the previous antibiotic didn't do what she had hoped it would do. Dr. Malone also made a statement that her sinus situation could be cronic which means it will be difficult to treat it. She put Maddie on a new antibiotic which she will take for three weeks. We'll see Dr. Malone after that to see how this antibiotic does. Maddie is still choking alot but it's because of the sinus drainage in her throat. Hopefully this new antibiotic will work.

Love,
Steve, Darla and Maddie

Sunday, November 6, 2005 5:37 PM CST

Maddie continues to smile and coo but unfortunately I haven't gotten any pictures like the ones last week. She is smiling while I'm holding her or when Steve is and I can't get to the camera fast enough. I'm seriously thinking of strapping the camera to my head (just kidding folks) so I don't miss any more of her precious smiles.

We are suppose to hear from Atlanta this week with the date of when we will be going to see Dr. Shoffner. I spoke to my contact on Thursday and she said Maddie's folder was in the "scheduling" pile which means we will be receiving the call very soon.

Maddie was still very congested this week, I'm not sure if the antibiotic worked as well as it was suppose to. Madeline goes back to her Ear, Nose and Throat doctor on Wednesday, hopefully we wil get to the bottom of what is causing her congestion. Seriously, she sounds like an old man (no offense grandpas) when she is sleeping or when she coughs to clear her throat.

Therapy sessions were a bust again this week. Maddie is just not feeling well so she can't work as hard as she has in the past. Once she is feeling better we'll get back to our routine.

Love,
Steve, Darla and Madeline

Sunday, October 30, 2005 7:01 PM CST

See what I mean about the smiling... This past Wednesday night Maddie had her best 10 minutes or so with Steve and I. She was smiling and cooing like she has never done. Steve and I couldn't believe it - we are so happy with her progress. Remember, her gains are small but mighty!!!

We enjoyed our 3rd annual Halloween neighborhood party at our house yesterday. Maddie was a Wisconsin Badger cheerleader (that aunt Joey). The weather was perfect for plenty of hayrides, well it was more like a wagon ride since we didn't have any hay on it. Anyway, everyone had a great time!

Atlanta has finally received all of Maddie's information. Now we just have to wait for Dr. Shoffner to review everything which will take a couple of weeks. I suspect we'll be traveling the last part of November, early part of December.

Maddie was sick this past week with a sinus infection and a sore throat. She had been congested for a few weeks but I could not get her into her ear, nose and throat doctor until Wednesday. Her doctor looked in her ears and the left one had fluid in it but it was not infected at that time. Her nose was red and irritated and her tonsils were red, swollen and irritated as well. Her doctor said that she suspected Maddie had a sinus infection based on how irritated her nose was and her tonsils were swollen but not infected so she did not have strep throat. She put Maddie on a pretty heavy duty antibiotic and we'll see her in another week to follow up.

Happy Halloween!

Love,
Steve, Darla and Maddie

Sunday, October 23, 2005 7:34 PM CDT

Madeline had a better week, she was much more content,she wasn't arching so much and she slept better for the most part. Overall it was a great week!

Although I speak to the woman from Atlanta everyday we still have no date yet as to when we are going down. They are still waiting for the medical records to be sent from Cleveland, then Dr. Shoffner (the specialist) will need some time to review all the tests Madeline has had for the past 21 months. Once he gets his game plan together of what he wants to do we'll schedule the appointment.

Steve and I spoke to Dr. Gilles yesterday regarding the medication she wanted to put Maddie on for the movement disorder. After further discussion with the pharmacist they decided Maddlie is just too young to put on that type of medicine. Dr. Gilles has contacted a movement disorder specialist from Stanford to ask his opinion of what to do. She told us he was the only doctor she could find that specialized in pediatric movement diorders. Ironically, Maddie's movements have lessened quite a bit this past week. We are in a "wait and see" mode right now.

Maddie has really started to smile more and is much more vocal these days. Madeline has made noises in the past but not like she is lately. Friday and Saturday she made more cooing sounds then she has her whole life. Steve and I are really enjoying the interaction we are having with Madeline.

Please keep those prayers coming our way...

Love,
Steve, Darla and Maddie

Tuesday, October 18, 2005 8:51 PM CDT

Madeline's EEG went well last Thursday. Maddie was hooked up to the electrodes, they did not give us much room to roam so I basically held her for 13 hours. I did however capture lots of events they will review to determine what are seizures. The Neurologist who watched the EEG for awhile said that most of the events I captured were her movement disorder not seizures. We'll hopefully get the results later this week.

Maddie had a farily good night at the hospital. She woke up every 40 minutes instead of every 20-30 minutes she does at home but she went right back to sleep after I touched her. I finally feel asleep around 4:00 AM only to have a nurse wake me up at 5:00 AM to ask me if they should give Maddie a dose of medicine to help her sleep they didn't give her at 3:00??? I said "No - I think she's good". Next thing I know there's a woman from the lab waking me up at 7:00 AM to get blood from Maddie. Needless to say I slept most of the afternoon when we got home.

I'm still working with my contacts at the hospitals here and Cleveland trying to get Maddie's records sent to Atlanta. Once Atlanta receives all of her records they will schedule our appointment. I've been on the phone every day talking to people at the hospitals, insurance company, business offices, assistants and whoever will listen to me. We should hear soon from the Atlanta clinic.

Maddie's movement disorder is getting worse by the week. I met with Dr. Gilles this morning to discuss our plan of what medication will help with the movements. Dr. Gilles suggested one that will hopefully work on the sourse of the movements. It's a med that they use to treat Parkinsons. Although Maddie doesn't have Parkinsons the med could help with the movements. We will do a trial as soon as Dr. Gilles gets the correct dosing since Maddie is so young she will require a very small amount of medication. If this med doesn't improve the movements we will try a different kind of medication all together.

Madeline has been less cranky this week and her arching isn't as bad as it was a few weeks ago. Hopefully she will be getting back to her self in no time.

Love,
Steve, Darla and Maddie

Sunday, October 9, 2005 9:34 PM CDT

Maddie was more irritable this past week due to her ear infection and adjustments made to her seizure medications. We are taking her off of one and bringing another one on faster then we normally would. Overall it was a rough week for all of us.

We did however have a great weekend in Marshfied celebrating grandpa Bob�s birthday. Actually as of Saturday morning I was just going to make the trip because Maddie had a horrible Friday night (hardly any sleep for anyone) which meant an even crabbier Madeline in the morning. After talking to Dr. Gilles around noon we got instructions how to help Maddie sleep better so we were all able to make the trip. Maddie slept most of the way yesterday afternoon and this afternoon on the way home.

No word on our trip to Atlanta yet we are still waiting for Maddie�s medical records to be sent down there before they will schedule our trip. Believe me - I�m all over the people that make this happen at the hospitals. I think I�m giving them a little more sense of urgency then what they are used to, they recognize my voice when they answer their phones. I will hopefully get some information this week or heads are going to roll�.

Maddie will be admitted to Gillette on Thursday for a 24 hour EEG. Dr. Gilles wants to determine if the movements that Maddie has developed lately seizures or are they just muscle movements from the medication we are taking her off of? Dr. Gilles also wants to see what she is doing during her sleep pattern and why she can�t sleep. Madeline has this awful jerking/twitching pattern that she has at night which keeps her awake.

This should be an interesting week - wish us luck!

Love,
Steve, Darla and Maddie

Monday, October 3, 2005 6:23 PM CDT

Boy what a weekend for poor Madeline. Maddie spiked a fever of 103.6 yesterday afternoon and was having difficulty breathing � we made the trip to the ER at Children�s in St. Paul. After three and half hours of blood work up (it took an hour and a half just doing that) and chest x-rays to determine if she had something like pneumonia going on � it ended up being a nasty ear infection.

I�m convinced she�s had this ear infection for awhile since she has been so moody the past several weeks. She has still been arching and just this week she stopped taking the oral feedings we had been working on. Maddie had increased her oral feedings to two jars of baby food a day this past Monday and Tuesday but stopped taking any sort of amount on Wednesday. Hopefully she will get back into the swing of things once she feels better.

We found out this past week that Dr. Gilles is sending the three of us down to Atlanta Georgia for more testing. We will be seeing another Mitochondrial Disease expert to determine if Maddie has Complex IV Deficiency or possibly something else. The doctor we will be seeing is apparently one of the leading experts on Mitochondrial Diseases. He specifically told Dr. Gilles that Complex IV is very uncommon and that he wanted to see Madeline in his clinic in order to run more tests on her. We should be going within the next three weeks or so. This was a surprise but we are happy to get to the bottom of this diagnosis.

Please keep the three of us in your prayers � we appreciate all your love and support!

Love,
Steve, Darla and Madeline

Sunday, September 25, 2005 6:35 PM CDT

Madeline was feeling better this week - she was still arching but it was less then the last two weeks.

Madeline also surprised me this past Friday by eating her entire jar of baby food (4 oz.) in one sitting. She has been finishing about 2 oz. at a time but that's all. Of course I celebrated by covering her with kisses and giving her lots of hugs. We couldn't wait to tell daddy when he got home from work. Steve was just as excited as I was...

Steve, Madeline and I went to Marshfield this past weekend to see my sister Debbie who was in town for the weekend. We also got to see Ethan (my nephew & Maddie's cousin) play his first football game of the season. Afterwards, we spent more time with my family during lunch, Maddie finished another jar of food as well. She received hugs and kisses from her aunts and grandma. We left Stevens Point in the afternoon to get home in order to get to Tony and Brenda's hayride - it was a very long and fun filled day for all of us!

Today the three of us hung out at home just relaxing. Maddie had another jar of baby food for lunch - we can't wait to tell her speech therapist on Wednesday how well she did this weekend.

Madeline enjoyed her swlm day at the center much better this week. Teresa worked with her without the life jacket, we could tell Maddie was much more relaxed and easier to handle.

Maddie did not have her lab draw this week - hopefully they will call me and let me know it is scheduled for this week.

Love,
Steve, Darla and Maddie

Tuesday, September 20, 2005 8:43 PM CDT

Maddie had a visitor this past week, grandma Merkel-Michalski came to see her. Unfortunately Maddie has not been acting herself this past week - she has been arching constantly so she is very diffcult to hold. Madeline is still not sleeping well, she is so tired but yet she can't sleep because of all the arching she is doing.

I took Maddie to the doctor on Thursday thinking she had another ear infection but she did not. The doctor ordered blood work and he ordered an x-ray of her abdomen to see if there was a blockage of some sort that would make her arch so much. All the tests came back normal, but of course they would... I've been giving her tylenol around the clock which seems to help a little but we still don't know why she is arching so badly. Maddie's chiropractor can't even keep her in alignment at this point.

Maddie will hopefully have her labs drawn this week either Thursday or Friday. They will sedate her just enough to get the blood and then bring her out of it that quickly. Maddie developed a movement disorder awhile ago either from a drug interaction or it could be a symptom of her Complex IV Deficiency. Because of her constant movement it is extremely difficult to get blood drawn from her arms without the sedation.

I'm not sure how long it will take to get the results back but we will be patiently waiting for the results to confirm her diagnosis of Complex IV Deficiency.

Love,
Steve, Darla and Madeline

Sunday, September 11, 2005 9:48 PM CDT

I spoke to Dr. Gilles this past Tuesday she is as surprised and anxious about Maddie's diagnosis as we are. She told me she would contact Dr. Parikh in Cleveland and review everything with him. Until they talk we will not run any more tests. Maddie's full diagnosis again is a Mitochondrial Disease, Complex IV/COX Deficiency. She has some of the symptoms but not all of them. Maddie has the low tone (hypotonia), weakness, seizures, respiratory issues (when she is sick),developmental delay and she did have the liver issue.

Dr. Gilles has already started to search the internet as well for all the information she can gather about this disease. In fact when we spoke on Tuesday we compared articles and sites we had come across. If you would like to find out more about this disease you can go to www.umdf.org - but to repeat Maddie only has some of the symptoms and we are not sure if she inherited it from us, we will know that once they do the blood work.

On a lighter note I took Madeline to the Center where her PT and OT therapists are to check out the pool. Maddie was not very interested in the pool at all but hopefully she will get used to it and start to enjoy it. We are going to try it without the life jacket this week to see if she will tolerate being in the pool a little more.

Maddie's still not sleeping very well at night. Steve and I are taking turns getting up with her but we're both getting up with her at least 3 - 4 times a night. Needless to say we are all a little more crabby these days...

Please keep those positive thoughts and prayers coming our way - we really do appreciate them!

Love,
Steve, Darla and Madeline

Monday, September 5, 2005 8:08 PM CDT

Happy Labor Day! We just enjoyed a wonderful weekend up at grandpa and granma Fall's cabin. Madeline did great!!

Maddie ended up with an ear infection this past week - hence the crabbiness. I took her to the doctor Thursday morning because I couldn't take the crying and screaming anymore. It is very difficult to tell when something is wrong with Maddie because she doesn't give us any signs she is sick such as fevers or swollen glands like you would expect. Once she started the antibiotics she was a happy camper again.

Steve and I received some news we have been waiting for since Maddie was born - a probable diagnosis. The doctor from Cleveland called late Friday afternoon to tell me they have been testing Maddie's skin biopsy, (which she had done last November when we were there)it appears Maddie has Complex IV/COX Deficiency. We still have more blood testing to do but he is confident this is what she has. He said many children respond very well to a combination of vitamins; B2, Carnitine (which she is already on) and co-enzyme Q10.

I spent hours on the internet Friday night trying to find as much information on this disease -some horrifying and some promising. I guess at this point we do not have enough information about Madeline's "type" but we should after the blood work is done.

We are not sure where this will lead us but we are very happy to know what she has and we can move forward with the information as we learn more about this disease. We will work very closely with Dr. Parikh (Cleveland) and Dr. Gilles from now on. I'm sure this will mean more doctor visits and more testing the next several weeks.

Please keep us in your thoughts and prayers as we enter this next step of treatment for our precious little angel!

Love,
Steve, Darla and Madeline

Sunday, August 28, 2005 12:58 AM CDT

Boy has Maddie been crabby this week! I'm not sure if it's teething, decreasing meds or just what it is but I hope she's happy again soon.

Maddie's mood did not make for a good therapy week. She didn't want anything to do with exercising at all. Her therapists tried to get her to do the regular things she can do but Maddie cried and cried until we caved in and gave her the pacifier. Needless to say she had a very easy week.

Madeline has been doing great with her speech therapy except for this week. She ate just a little from the special brush tool that we use but finished the rest of her feeding with the therapist using her pacifier. Brenda said she didn't care how it got in her mouth - just that it did and she swollowed it.

Steve and I are trying to do things around the house (outside and in) but Maddie isn't cooperating with us so I'm just hanging out with "miss crabby pants" in the house. I can't believe how beautiful this weather is but we can't enjoy it due to Maddie screaming every minute.

Well I've vented enough - I hope this next week is better for all of us!

Love,
Steve, Darla and Maddie

Sunday, August 21, 2005 9:34 PM CDT

We finally had our meeting with Dr. Gilles this past Thursday and it ended up being one of the best appointments we have had with her. Steve and I are very happy with how things are progressing with Maddie.

We found out that the four hour EEG Maddie had a week and a half ago showed she did not have any seizures. I pushed the button to record a dozen or so episodes Steve and I were calling seizures and they ended up not being seizures. The activity she is doing is due to the medications interacting with eachother. We are taking Maddie off of one of her seizure meds and we'll slowly take her off another one if she remains stable enough and doesn't have any seizures while we are decreasing her meds. We can't wait to see what happens.

Maddie's liver has also decreased to it's normal size which means we received the thumbs up to go on the diet if we need to. Dr. Gilles does not know why Maddie's liver got so large but we are very excited it is back to normal size. Dr. Gilles wants to see how Maddie responds to the decrease in medication before we go on the ketogenic diet because if she isn't seizing then we don't need to go on the diet at this time. If she starts then we'll go on the diet as soon as possible.

We talked about a lot of issues in our meeting but one thing we agreed upon, Maddie is her own little person one of which Dr. Gilles has never seen the likes of medically speaking. They can not explain our questions of why, what or how??? but we all believe Maddie has changed so much these past few months and it can only get better from here...

Please keep us in your thoughts and prayers - I do know they are working.

Love,
Steve, Darla and Madeline

Monday, August 15, 2005 9:36 AM CDT

Another week just flew by - where does the time go? We had a great week and weekend with Maddie. She had her EEG this past Wednesday but we didn't get to meet with Dr. Gilles because she was on call which means she was very busy and wouldn't have been able to spend the time with us that we wanted. We are rescheduled for this Thursday with her.

Saturday we went to another tractor show and met up with Tony and Brenda, Uncle Dan and Aunt Neesie - it was a lot of fun. Maddie did great. Steve, Maddie and I are not into tractors but Tony sure is so we like to support his hobby. Dan and Denise live so close to where the show was they come and join us as well. I go for the beer and the cute little shingles they make every year. :)

I'll be taking Maddie to the pool soon and learning how to work with her in the water. The temperature of the water is like a bath so she'll love it. We can't wait especially now that it is cooling off somewhat. Working with her in the water will build some of her tone as well.

Love,
Steve, Darla and Maddie

Monday, August 8, 2005 8:43 AM CDT

Madeline attended her first Lindner family reunion this weekend. She meet so many of my 1st, 2nd and 3rd cousins -she really enjoyed herself. She was very good the whole day and slept through the night Saturday. On Sunday we went to Keith and Kris' to celebrate Emily's 4th birthday a little early.

I've been taking Madeline to the Chiropractor this past week and it seems to be helping her tone. Her therapist can already tell she has changed from being very tight to more relaxed with her overall tone. Madeline is still considered to have hypotonic (low) tone throughout her trunk (neck, shoulders and tummy). That's why we are working on so many exercises to help build those muscles.

Maddie received a new Stander from her PT this past Tuesday. This piece of equipment will help put weight on her legs so her legs will become stronger and stronger. She looks a little goofy standing in it but she really doesn't seem to mind it. Our living room is getting a bit crowed however with all of her equipment.

We have an appointment on Wedenesday for an EEG and a meeting with her Neurologist, Dr, Gilles. We want to see if some of the movements Maddie has been making with her arms and legs are just muscle spasms or if they are seizures. After the EEG we will meet with Dr. Gilles to discuss the results of the spinal tap she had a few weeks ago and the possibility of going on the ketogenic diet in the near future.

Take Care,
Steve, Darla and Maddie

Sunday, July 31, 2005 2:57 PM CDT

Madeline and I were very busy this past week. We had a big day this past Wednesday. We went to see the folks at William J, where I used to work. We visited with all my old co-workers and of course all the woman had to hold Maddie. She certainly is a hand full - right girls? Big shout out to William J! I miss you all so much!

After our visit with my friends Maddie had a great therapy session with her speech therapist. Brenda was very happy with how she was taking to the peaches. Brenda uses a special brush tool to feed her with so she can tell how she is taking it and swallowing the food. Both Brenda and I are happy she is doing well with the oral feeds. Of course she has a long way to go but as everthing with Maddie her gains are small but mighty!!

Steve, Maddie and I spent yesterday afternoon down in Hastings at a tractor, car sort of event. Maddie did really well for how warm it was outside, thank goodness there was a nice breeze at least. We were there with Tony and Brenda you know how Tony is into tractors and all.

Hope your summer is going well what little we have left of it.

Love,
Steve, Darla and Maddie

Sunday, July 24, 2005 3:26 PM CDT

Another week here and gone - where does the time go? I can't believe how fast this summer is going.

Madeline had a spinal tap (LP) last Monday morning at Gillette. The spinal fluid is for more testing to see if they can determine what is causing Maddie's seizures. She has had two before this and they both have come back normal. The doctor in Cleveland wanted to see if the acid level in her spinal fluid has changed now that she has an enlarged liver. We should have the results in a week or so.

Maddie's therapy sessions have been going well. She has a long way to go but the little gains she makes each week are starting to show. She is more alert, moving her head around more and interacting with us. She even had big smiles for daddy this past Thursday when he got home for work. She has a new corner chair the county has given us to work with - it's not attractive by any means but it's functional. You know me and my furniture background...

Hopefully Maddie and I will be able to get out this week, it was pretty darn hot last week again so not outside much. Although, Maddie has a better tan on her legs then I do from the stroller rides we have been able to fit in.

Take care,
Steve, Darla and Maddie

Sunday, July 17, 2005 7:47 PM CDT

Can you believe this heat?? Maddie and I are going crazy being stuck in the house this past week. We can't wait until it cools off so we can go outside for our walks. I had Maddie in the backyard this past Wednesday but the poor thing was sweating so bad after about ten minutes we had to go back in.

Maddie had her GJ tube replaced on Thursday so we got that taken care of. It was a good thing we did the water in the balloon that holds the tube in her tummy had a slow leak in it and probably would have fallen out at any time in the next couple of days. She did great as usual, we were there for only a few hours. The procedure itself only took about ten minutes.

No word about the ketogenic diet yet. Maddie is suppose to have another spinal tap either this week or next. The doctor from Cleveland wants to run more tests to see if he can figure out what's going on with her liver.

Maddie is cutting in more teeth on the bottom which means she has been really cranky and demanding her pacifier more than ever. I sure hope this stage is over soon...

Love,
Steve, Darla and Madeline

Sunday, July 10, 2005 5:00 PM CDT

This week has been a pretty lazy one for Maddie and I as we try to get back into the swing of things. Maddie had her therapy this week which she did okay with but we could tell she is still in vacation mode.

Dr. Gilles, Maddie's neurologist, did hear back from the metobolic doctor from Cleveland. He was not happy to hear about Maddie's enlarged liver and wants to run more tests to see if we can find any other reason why Maddie's liver is enlarged. We may have to postpone the ketogenic diet another month or so. Although Steve and I are disappointed we certainly don't want to start the diet and put Maddie at a higher risk for liver issues above and beyond just being enlarged.

Not much else to report, since it has been so hot lately we haven't had Maddie out much. She is just like me - can't take the heat!

Love,
Steve, Darla and Maddie

Monday, July 4, 2005 9:13 PM CDT

Happy 4th of July! Our last day of vacation is upon us and I'm happy to say we had an awesome time with my family and Madeline did great. We did have to go to the ER up north where we were and a second visit to the ER in Marshfield, WI when Maddie's GJ tube was accidently pulled out by me when I put here to bed last Saturday night. Other then that minor incident the rest of the week was wonderful.

We took Maddie in the boat one day - she didn't like it at first but then she got used to it, we didn't take her out again. Grandma Tessie and Grandpa Bob took care of her while the rest of us spent time boating on the lake. I think they both enjoyed spending time with Maddie and I know she was happy being with them.

We were able to continue our vacation with aunt Debbie, uncle Larry and cousin Matthew until Sunday at our house. We went to the beach on Saturday which was a lot of fun except for the darn mosquitoes eating us alive before we got to the beach.

Today we spent the last day of our vacation with the Fall's. I know daddy is sad his vacaton is over - it went way to fast! We can't wait until next year to do it all over again...

We hope you are all enjoying your summer as well.

Love,
Steve, Darla and Maddie

Sunday, June 19, 2005 7:32 PM CDT

Happy Father's Day! We enjoyed a lovely day with daddy and the Fall family. As you'll see in the next picture daddy got a new tie from Maddie - it's from Children's Hospital so we just had to buy it when Maddie was there in April.

Steve and I have been so worried about Madeline's health that we are both sick with sore throats and I had a fever today. Steve went to the doctor Friday morning and I'll have to go in tomorrow sometime. We will be healthy before we go on vacation the end of this week.

UPDATE: It's official... Steve, Madeline and I have strep throat! Madeline tested positive this afternoon. At first they wanted to admit her to the hospital but when her blood work came back normal the doctor said we could treat it normally - all three of us are on antibiotics.

We are anxiously waiting to get on the Ketogenic Diet next month. We'll have to schedule a time when we get back from vacation since the dietitian who we'll be working with will be on vacation a good portion of July.

Maddie has been very crabby this week - I'm not sure if she is teething which I think she is or this is a new attitude she has developed - I'm hoping it's teething! The constant crying is getting a little old...

UPDATE: She has been crying because of her teething and her sore throat.

Look for an update in a couple of weeks once we're home from our vacation. I'm sure I'll have great pictures to share.

Love,
Steve, Darla and Maddie

Thursday, June 9, 2005 7:26 PM CDT

Madeline did not go on the Ketogenic Diet this month afterall. We are basically postponing the Diet until next month - the doctors really want to discuss Madeline's enlarged liver with the doctor in Cleveland and they haven't done that yet.

Maddie is doing really well these days. She is doing well with her head control and her excerises we do with her. Her therapist's are pleased with her progress since she has been home from the hospital. Needless to say so are daddy and I. Madeline still has a nurse 2-3 times a week which lets me get out of the house a few days.

Maddie and I spend our days enjoying a stroller ride and talking to the neighbors. We are praying Maddlie's great health continues throughout the summer...

Love,
Steve, Darla and Madeline

Friday, June 3, 2005 7:03 PM CDT

Maddie is doing much better - the antibiotic she is on is doing wonders for her sinus infection but really doing a number on her bottom... She has a horrible diaper rash.

We are getting ready to go on the Ketogenic diet next week. We are now waiting to hear the final "go ahead" from the metobolic doctor from Cleveland. Since we have learned that Maddie has an enlarged liver it puts a different spin on things. All of the results are back from the biopsy which were all normal but they have to check out the issue with her liver because the diet can cause liver issues in some patients.

Maddie has been sleeping a little better but she certainly lets me know when she has a messy diaper by crying A LOT throughout the night. Needless to say I'm still not getting much sleep... Grandma Tessie is here but she doesn't hear Maddie at night so she isn't much help! (ha ha ha)

Love,
Steve, Darla and Madeline

Sunday, May 29, 2005 5:19 PM CDT

Well....... Maddie was admitted into the hospital this past Thursday for observation for a few days. We will be able to bring her home tomorrow morning.

Maddie continued her arching and screaming at night this past week. I called the doctor Thursday morning to get in as soon as possible - I think they have learned by now that Maddie needs special attention so they told me to bring her in at 10:00 (I called at 8:30). When we got to the doctor they told me she had a sinus infection (they took xrays last Tuesday) and they would be treating it with antibiotics. The next thing I know the doctor came back into the room and told me they were admitting her for observation. Needless to say I guess I wasn't surprised - I really did want them to see what she was doing at night. They put us on the 4th floor which is the Pediatric ward but soon moved us up to the Epilespy ward on the 7th floor so they could capture these events on camera and to determine if they are seizures or not. They caught several hours worth of her arching and screaming - they determined they were not seizures but didn't know what was causing her pain - if it was indeed pain...

Her GI doctor also scheduled a procedure late Friday morning to determine if the arching was caused by tummy issues. He put a scope down her throat and into her stomach to check everything out. As usual everything was normal - there were a few areas in her tummy that appeared irritated but nothing that would cause her to arch like she does.

So here we were late Friday afternoon with three, no make that four doctors scratching their heads wondering what to do next. They started the antibiotic for the sinus infection and she has been an angel since! She has not arched and cried at night since Thursday night. Steve and I stayed at the hospital with Maddie Friday and Saturday night but I couldn't fall asleep because I was waiting for her to start doing her thing but she never did. We hope all the arching and screaming was just due to the sinus infection and she will be back to her old self in no time.

Hope you all had a great holiday weekend!

love,
Steve, Darla and Madeline

Tuesday, May 24, 2005 7:31 PM CDT

Well we have been home for over a week and Maddie is still doing well. She still cries a lot at night so I'm up with her quite a bit. Hopefully we can help her out by giving her Zantac to help her tummy feel better.

Madeline is going on the Ketogenic Diet the week of June 7th. She will be admitted at Gillette and will be introduced to the diet through that Friday. Steve and I are very excited to start the diet and see how Maddie reacts to it. We have read and heard wonderful things about the diet.

Maddie has had follow up doctor appointments this past week and more to come in June - we only hope they are uneventful as they have been.

Steve and I are really looking forward to our family vacation with the Merkel family next month... We certainly need a break!

Love,
Steve, Darla and Maddie

Monday, May 16, 2005 7:34 PM CDT

Madeline and I are back home!!!! We'll try to stay home for longer then a day. Madeline has been doing great these last several days we just hope she continues to get stronger and healthier by the day.

We discovered Madeline had an enlarged liver this past March while they ran a routine chest xray while she had pneumonia. We have been running tests to monitor the liver function and they have been coming back elevated but well within the normal range. One reason the liver may have gotten bigger is due to her seizure meds. We had a liver biopsy this last hospital stay and the preliminary results came back "unremarkable" which means normal. They are still running some tests which could take up to three weeks but we are very happy to learn the liver is normal.

We met a family this past week who have a son 17 months old who has a lot of issues like Madeline. He doesn't have seizures but developementally they are a lot alike. We hope to stay in touch with this family - it was nice to talk to a coulple who are going through similar issues.

Thank you all for your continued support, love and prayers.

Love,
Steve, Darla and Madeline

Wednesday, May 11, 2005 3:36 PM CDT

Maddie and I got to go home Monday afternoon after another three week stay at the hospital - it was great while it lasted...

Maddie was transported back to the hospital yesterday afternoon in respitory distress. She had unbelievable amounts of secretions, I was suctioning from her Monday night and all day yesterday. She was not able to handle her own secretions and she was very irritable with her feedings. Maddie was not urinating yesterday which means she was very puffy and was getting bigger by the hour. I took her to Hudson to see a doctor but they took one look at her and decided very quickly she needed more attention then what they could give her.

We are putting in a GJ tube in again so we will be by-passing her tummy and going straight into the intestines. Hopefully this will help with her secretion problem and get us out of here sooner and back home.

Maddie and I are meeting lots of new families but we really want to get home...

Love,
Steve, Darla and Maddie

Saturday, April 30, 2005 7:36 PM CDT

Yup you guessed it - Maddie's still in the hospital! This little peanut really likes hospitals...

Madeline had a set back with her seizures last Sunday - she was in status, which means she was in one continueous seizure for several hours. Maddie's feet were twitching that was it, her eyes and everything else were not doing anything. They broke the pattern by loading her with one of her seizure meds. Monday evening she was hooked up to the EEG machine again to capture some of the events she was doing. Maddie HATES EEGs -she can't stand having the electrodes put one so she was not a happy camper. They kept them on until Wednesday night.

Maddie has been extremely fussy the past several days and we think we know why - she's hungry! The doctors started her feedings (very slowly) this past Wednesday but she has been arching and crying or rather screaming everytime we tried to feed her. Madeline did not sleep at all Thursday night which meant I didn't either. I thought she would sleep all day Friday but the little peanut was very content letting the whole ICU unit know just how unhappy she was... She finally settled down in the evening when we started giving her more formula at one time.

We were moved out of the ICU unit today to the floor. I think they were just tired of listening to Madeline. She made quite the entrance onto the floor as well - I'm mad mad Maddie, she certainly had the nurses running.

It is our Easter tonight, Steve and I are very sad that Maddie is missing another Easter. Aunt Neesie is staying with her tonight so I can go this year since I missed last year because Maddie was having too many seizures that day for our comfort.

Thank you all for your continued love and support it means so much to the three of us.

Love,
Steve, Darla and Madeline

Thursday, April 21, 2005 10:30 PM CDT

Maddie was taken off the ventilator Wednesday afternoon. However, she proved to the doctors she could not breath on her own yet. Instead of putting her back on the respirator they put her on another devise called a Bi-Pap. This machine helps open up Maddie's airway with postive air pressure but she is doing all the breathing. We will leave her on this machine for a few more days - she HATES the cap and mask but she is doing very well.

Maddie has been having more and more seizures yesterday and today due to her feeding tube leaking a few days ago and losing most of her seizure meds. They have been loading her with her meds in her IV to get her levels back up to where they should be. Hopefully tomorrow will be better.

Maddie will be in the hospital through the weekend but should be home early next week if all goes well with her breathing this weekend.

Love,
Steve, Darla and Maddie

Tuesday, April 19, 2005 2:23 PM CDT

Once again the surgery went very well but Maddie's post-op recovery has been a little challenging. Maddie was taken off the respirator shortly after surgery but it was very obvious to everyone Maddie was struggling with her breathing. We ended up putting her back on the ventilator around 7:00 last night. We will try to take her off of the vent tomorrow but it may take until Thursday. We started feeding her today in the "J" port just until she is off the vent and we can go back to feeing her in her tummy.

Maddie is resting peacefully today, they have her sedated enough to help her sleep but not too much so she is snowed. She has been opening her eyes every now and then and taking a look around. Maddie had two nurses last night so they had a lot of time on their hands - they had her all "pretty" for me this morning. She was dressed in pink and had ponies in her hair... My oh my!

Aunt Neesie is here today and grandma Sharon and aunt Joey stopped by to visit this morning as well. Everyone said how adorable she looks - new pictures coming.

I have run into a few people we met last year when Madeline was here - they are sad to hear Maddie has had a rough year so far but happy to hear she is doing well overall.

Thank you all for your love, prayers and support yesterday and always!

Love,
Steve, Darla and Maddie

Thursday, April 14, 2005 8:20 PM CDT

Maddie has pink eye again... We're not sure how she got it since we haven't really taken her anywhere. We're giving her the eye drops so hopefully it will clear up quickly.

Maddie's surgery is still on schedule for Monday. I had her into the doctor this morning because she has been coughing & choking a lot these past two days and I didn't want her to get sick again if we could catch something before it started. Her doctor had blood work done and a chest x-ray, everything looked good although she had a little fluid in her ear but it was not infected. The doctor called the surgeon who is doing the surgery on Monday to inform her of the potential issue Maddie has. The surgeon wants to keep the surgery as scheduled. I'll follow up with Maddie's doctor tomorrow for her pre-op physical.

Please keep us in your prayers next week - for a successful surgery and a speedy recovery.

Thank you!
Steve, Darla and Madeline

Friday, April 8, 2005 1:32 PM CDT

Madeline has to have surgery on her throat, more specifically an Arytenoid Reduction along with an Adenoidectomy. Her vocal chords and voice box were severely damaged by her reflux, Maddie's Ear Nose and Throat doctor told me this past Wednesday that time would not heal the damage. Maddie should be able to swallow better and will hopefully start taking the bottle again. Her snorting should go away and her breathing will improve so she can breath through her nose again instead of her mouth. Maddie has had problems swallowing since her surgery the end of January. This surgery will be on 4/18 at Children's in St. Paul. Her doctor said Maddie should only be in the hospital 3-4 days which means 7-10 for us...

Maddie and I have enjoyed the beautiful weather we have had. We try to get out for a walk at least once a day. Madeline has also been improving with her therapy sessions at home. She is still weak in her trunk (head, chest and back) area but we are working very hard on it.

Madeline's seizures have been increasing again - she has good days and bad. This past week she has had more activity which may or may not be seizures. We will have an EEG at Gillette soon to determine if they are or not.

Maddie is waking up from her nap so I must close for now.

Love,
Steve, Darla and Madeline

Thursday, March 31, 2005 8:03 PM CST

Daddy has been on vacation with us this past week which has been great! Today we went to the Ikea store and boy was that fun. Mommy was hoping we could go to the big mall across the street but daddy said we wouldn't have time - I think I saw a smile on his face when he said that.

Maddie is doing well. Monday she had a bad day as far as seizures are concerned. Maddie had about 10 in less then an hour which meant we were to give her a dose of Diastat which is like Valium it is suppose to stop the pattern. Maddie had some sort of reaction to it with her eyes. Her lids were open but her eye balls were stuck looking way down and to the right. I called Gillette and spoke to the nurse she suggested we go the ER in Hudson or Childern's in St. Paul. Steve and I were on our way to Children's when Maddie snapped out of it and had complete control of her eyes, we were just putting her in her car seat. We ended up taking her to the Hudson Hospital to have her checked out. The doctor couldn't do anything since she was looking around. He checked her lungs, ears, nose and throat, everything was fine. We were there for about an hour. Now that's my kind of hospital stay...

I Hope everyone's Easter was nice - our Easter is the end of April. Steve and I are very excited to take Maddie to this years service. As you recall Madeline and I stayed home last year because she had so many seizures that day. What a difference a year makes with our comfort level...

Love,
Steve, Darla & Madeline

Friday, March 25, 2005 5:31 PM CST

Well we made it past the one week mark and we are still home! Maddie continues to have a little cough but nothing to be concerned about. We had follow up doctor appointments today amd we got a good report about Maddie's lungs, ears and throat.

We also had a meeting with the dietitian at Gillette regarding the Ketogenic diet - they have an opening in June so we will start it then. Although, we hope Dr. Gilles can pull some strings to get us moved up on the list. The team certainly knows all about Miss Madeline they have been discussing her for more then a year now.

I must say it has been really nice having a night nurse with Maddie everynight except for Saturday nights. The nurse gets here at 10:00 and leaves at 6:00 the next morning. I did have to get up a few times earlier this week to rock her back to sleep - the nurse just doesn't have my special touch... :) Actually Kimberly does really good with Maddie.

Love,
Steve, Darla and Madeline

Thursday, March 17, 2005 10:09 AM CST

Maddie and I are home once again. We were discharged yesterday afternoon and made it home before rush-hour traffic.

Maddie has a nurse that comes everynight to basically take care of her during the night. Kim, the nurse, will give Maddie her medication, check her respitory rate and listen to her lungs throughout the night. The doctors want to make sure she does not relapse and get sick again. They believe she aspirated (swallowed into her lungs) right before we were discharged back in February which developed into pneumonia the week we were home.

We are so happy to be home and with the nurse here at night I will finally get at least three hours of sleep in a row - I haven't done that since Christmas.

Thank you again for all the cards and notes we get from so many of you.

Love,
Steve, Darla and Maddie

Thursday, March 10, 2005 2:52 PM CST

Madeline was moved out of the ICU unit yesterday afternoon to the floor. Once again this is a step closer to getting out of here. They took another nasal culture this morning to verify the pneumoina is clear - we won't have the results for another 72 hours.

Madeline is doing great - she is awake and looking around. I was sick this past weekend and Monday and Tuesday so yesterday was the first time I saw her since last Friday when I got sick. Aunt Denise was on duty Monday and Tuesday since I wasn't here. Maddie is on a medication withdrawl schedule to get her off the pain meds they were giving her when she was on the ventilator. She was only on the drugs a short time but long enough for her body to crave them.

We hope we will be out of her next week sometime it all depends on the cultural test and the tapering of the meds. We can't wait to get out of here and back home.

This year has started out rocky again we hope this is not what the rest of the year is going to be like.

Love,
Steve, Darla and Madeline

Thursday, March 3, 2005 1:53 PM CST

Madeline is off the ventilator - she got off of it Tuesday. She is doing well but they have her on oxygen to assist her with breathing. The antibotics are working but she still has a lot of secretions they are suctioning from her mouth. The chest x-rays show the pneumonia is clearing up but is still there. They continue to monitor her temp - she has had a low grade fever off and on since last week.

We still have to gown, mask and glove everytime we go into Madeline's room - this is getting really old but it's what's best for Maddie. We're not sure how long we will be here but Maddie seems content just lying in bed gaining weight. We are after all at the "fat farm"!! I was just telling the nurses Maddie always gains weight when she spends any amount of time in the hospital. Daddy seems to think her clothes won't fit by the time she gets home. I believe that means I have to go Shopping, shopping shopping!!

Take care,
Steve, Darla and Maddie

Friday, February 25, 2005 1:45 PM CST

Madeline has pneumonia...

The doctors have determined Maddie does not have a viral infection as previously thought but a bacteria strain that has led into pneumonia. The cultures they have taken are growing gram postive cocci which means they are starting her on pretty heavy antibotics. Everyone who enters her room has to gown, glove and mask including us. Needless to say it gets a little hot sitting in her room whith all of that stuff on so we are spending more time in the waiting room outside her room rather then with her.

Maddie is still on the ventilator and will remain on it until next week. They were hoping they could take her off of it today but once again Madeline has proven to be a difficult patient! Her breathing began to be more labored last night before Steve and I left the hospital. She continued to have a rough night - she is resting more today which is a good thing.

We are not sure how Madeline got so sick so fast. She had such a great week last week and now she is stuck in the hospital for who knows how long. I'm in no rush to get her out of here any time soon...

Take Care,
Steve, Darla and Maddie

Wednesday, February 23, 2005 3:03 PM CST

Madeline is back in the hospital..... :(

Madeline woke up yesterday morning with very labored breaths and she was coughing and choking a lot. I called her doctor to get in to see him and I called Fairview to see what they recommended. I ended up taking her to the Hudson Hospital early afternoon, she was breathing okay when we got there but she got progressively worse the longer we were there. It was very obvious she was in respitory distress. They ended up airlifting her to Fairfiew University where she was admitted.

Steve and I arrived to find a little girl fighting to breath but fighting the doctors and nurses more when they tried to get an IV in her. She may be down but she is not out.... They gave up on the IV and she relaxed after they put the oxygen on her to assist her breathing. Madeline had a fever of 103 and climbing, they started to give her tylenol to get the fever down and they ordered a chest xray to determine if she had pneumonia which is what the Hudson ER thought.

The doctor called us this morning around 4:30 to tell us she was in respitory distress again and they were going to put her on the ventilator to give her a break. Maddie put up a heck of a fight when they tried to do that - since they couldn't get the IV in last night they couldn't give her the strong drugs to sedate her really good. The doctors eventually got it in. They had to put her on a cooling blanket this afternoon to bring down her fever from 104. The doctors are thinking she has a viral infection of some sort and it has to run it's course. They will keep her on the ventilator for a few more days so she can regain her strength. She is pretty tired from everything that happened yesterday.

Please keep those prayers coming our way - we certainly need them.

Love,
Steve, Darla and Maddie

Saturday, February 19, 2005 4:30 PM CST

WE ARE HOME!!! We have got home this past Monday just in time to make dinner and a birthday cake for daddy!

Madeline and I are getting back into our routine slowly but surely. She has really started to focus on her surroundings more each day which is wonderful to see.

Grandma Tessie and Grandpa Bob are here this weekend to see Miss Madeline. Grandma can't believe how much she has grown since she saw her a month ago. She also can't get over how curly and how long Maddie's hair is. It has grown the last several weeks we were in the hospital. Grandma is singing away as well.

We will have follow up appointments next week and the week after - hopefully we will be able to start feeding Maddie through her stomach and start to give her the bottle shortly after that.

Love,
Steve, Darla and Madeline

Sunday, February 13, 2005 9:43 AM CST

We are going home tomorrow! Maddie and I couldn't be more happy - we are getting very tired of being in the hospital.

Maddie is doing well, she has really decreased the amount of mucus she is coughing up which is very good. We still are not feeding her through her stomach - we are using the "J" port which goes to her intestines. The surgeon wants to wait a couple more weeks to allow the swelling to go down before we feed her through her stomach. This means we have to feed her at a slow pace 24 hours a day. It will be hard transporting her around when she is hooked up to the feeding pump but we'll do it. She is getting bigger by the day - she is close to 19 lbs. and is a little over 28" long.

Steve and I are excited to start the new diet with Maddie. We should be meeting with the folks at Gillette real soon to get started with the Ketogenic Diet. Maddie's seizures have decreased to about 15-20 a day. She had a few days in the hospital when she had a few more then that but we got those under control quickly with different medicine.

I just want to say a special THANK YOU to Neesie for being with me here at the hospital every day. We enjoyed her company and of course Madeline likes your singing better then mine... We love you Neesie!

Love,
Steve, Darla and Madeline

Monday, February 7, 2005 9:42 AM CST

Madeline was moved out to the floor yesterday afternoon which means we are one step closer to going home...

Maddie is up to her dose of drip feeds through the "J" port of the feeding tube. We will try doing regular feeds through the "G" port soon. Madeline is very cranky these days but we're not sure why. One doctor seems to think she really likes her medication we gave her at home to help her sleep, he feels she is needing it now. We are slowly tampering it from her.

Madeline has been coughing up a lot of mucus this past week, the doctors say she should stop doing this soon but then again we are talking about Madeline, she'll stop when she's good and ready! I spent most of the night last night suctioning the mucus out of her mouth.

Have to go for now. The doctors are ready to talk about Miss Madeline.

Love,
Steve, Darla and Madeline.

Wednesday, February 2, 2005 2:43 PM CST

Madeline is doing well but her feedings are going very slow. In fact she isn't able to absorb any of her formula or her own secretions. They had to put a new feeding tube in yesterday afternoon. The tube is like the one they had to put in last summer when she went through the barium trauma. The tube is called a GJ tube. The J port goes straight to her intestines and bypasses her stomach. Hopefully this will only last another week or so and then we can use her tummy for feeding.

Maddie is not in much pain these days but she is cranky. The pain medication she was on did not help her gut situation - it slowed it down too. I can handle her being a little cranky versus seeing her in pain.

We don't know when we will be out of here, they want Maddie up on her feeds and I believe they want her feeding through her stomach - I think we'll be here for awhile.

Take care,
Steve, Darla & Madeline

Saturday, January 29, 2005 9:42 PM CST

Madeline is doing much better... The doctors took her off the ventilator this morning and she is doing great breathing on her own. Her throat is still swollen from the tubes but she seems to be handling it very well.

Madeline had a really bad cough yesterday afternoon before Steve got to the hospital. Maddie had the tube down her throat so she couldn't cough without wretching- it was pretty hard to see her fight against the tube. The doctors took a culture of her sacretions and her urine to determine if she caught a bug of some sort. They loaded her with pain killers and sedatives so she wouldn't cough anymore. The results came back this morning - they didn't feel it was an infection but they started her on two different antibiotics which meant we had to wear masks around her and wash our hands constantly.

Maddie was awake most of the day - she was still pretty out of it so she didn't really focus on us but it was great to see her eyes open. I'm dying to hold her and give her a bath but I'll wait a few more days, she is still in a lot of pain from the surgery.

Thank you all for your continued love and support - we really do appreciate it!

Love,
Steve, Darla and Maddie

Saturday, January 29, 2005 9:42 PM CST

Thursday, January 27, 2005 11:27 AM CST

Madeline's surgery went well, her recovery however has not. Madeline's breathing was very labored yesterday afternoon and into the early evening so they transfered her from the floor to the ICU unit.

Steve left last night around 6:00 but I called him to come back around 7:30 or so when her breathing was really bad and they had just moved her. I'll just say it was really tense for a good hour with her. Steve got back here very quickly, by the time he got back she was sleeping like an angel.

Steve and I left here after 10:00, since she was transfered to the ICU unit I can't stay with her in her room. We were called at 4:00 AM this morning to let us know she had another "spell" and she was struggling with her breathing so they had to put her on the ventilator but she was resting once again.

Madeline looks worn out but she is resting peacefully. We hope she doesn't have to stay on the ventilator for very long, she'll let us know that answer. We're not sure when we'll be going home since Madeline seems to like this particular hospital stay a little more then she liked the other ones.

Please keep us in your thoughts and prayers - we aren't through this yet...

Love,
Steve, Darla and Maddie

Sunday, January 23, 2005 8:26 PM CST

Madeline certainly is not like her mother when it comes to birthday parties. Although she was awake for the Merkel side party she was a little cranky.

Madeline's reflux is getting worse by the day. It is so severe she has to have surgery on Wednesday. They are going to do a Nissen. Basically they will wrap part of her stomach around the lower esophagus, preventing the backflow of the acids and food from the stomach into the esophagus. She should experience instant relief from the reflux. Steve and I were trying to avoid the surgery but Madeline was telling us otherwise...

Steve and I are very happy with the results of the latest medication Madeline has been put on for her seizures. The medication has serious side effects but she went from having 300 seizures down to 20 or less a day. We have to monitor a little more which means more doctor's visits and blood draws but we can handle that.

Our next step is to meet with the Ketogenic Diet group at Gillette. We will meet with the dieticians to start learning about the diet for Madeline. This particular diet is a very high fat low/no carb diet that has been proven to work in children who have severe Epilepsy.

We hope this year has been wonderful for all of you so far.

Love,
Steve, Darla & Madeline

Sunday, January 16, 2005 5:37 PM CST

Due to the extreme cold weather this weekend we did not travel to Marshfield. We'll be going this coming weekend. Needless to say we were disappointed but we have to be safe as well. We certainly didn't want to experience any car trouble along the way.

We were without power all morning on Friday so our house was a little chilly when we got home Friday night. It was toasty warm by the time we went to bed though. Steve, Maddie and I pretty much just sat in front of the fire yesterday and today. That's about all you can do when it's so cold outside. Zach (dog) and Thompson (cat) really enjoyed being part of the family as well - they normally aren't in the house all day.

Maddie had Pink Eye this last week - oh the joys of daycare. Actually I didn't think it was that bad, I called into the doctor and told her what Maddie's symptoms were and that she had been exposed. The doctor called in the prescription - Maddie didn't have to go the doctor's office at all. Yah!

Have a great week!

Love,
Steve, Darla and Madeline

Monday, January 10, 2005 9:32 PM CST

Happy Birthday Maddie! Madeline is one years old...(1/11) Where has this year gone? We hope and pray we gain some insight about Madeline's seizure disorder this year.

We had a wonderful day yesterday with the Fall's celebrating Maddie's first birthday. Maddie slept through her whole party but did wake up before halftime of the big game yesterday. Although the game didn't go the way we would have liked it was a special day anyway. I made my first birthday cake for Madeline - it was mighty good I must say so myself!

This weekend we will travel to Marshfield to celebrate Madeline's birthday with the Merkel side of the family. Hopefully Maddie will not be too tired to celebrate. She certianly is not the birthday pig her mother is... :)

Love,
Steve, Darla and Madeline

Sunday, January 2, 2005 8:56 PM CST

Happy New Year! Steve, Madeline and I are so ready for a new year... We hope 2005 will bring good news for us.

We have the preliminary results back from Cleveland. Basically all the tests came back normal. The metabolic doctor is still waiting for two tests to come back which should be late January but he suspects those results will be normal as well. The doctor could not tell me what we do next but would like to see us back in a year for more tests.

We have been working with Dr. Gilles, Maddie's neurologist from Gillette, on our game plan for Madeline. We are looking at possibly doing the Ketogenic Diet which is a very high fat, low carb diet which has proven to lower or eliminate seizures in some patients. I would work closely with a dietician to work out a program for Maddie if we choose this option.

We are also looking at an option called VNS (Vagus Nerve Simulation). Steve and I are very excited about this option. The VNS is the size of a pacemaker that is implanted under the muscle and connected to the Vagus nerve in the neck. When Maddie's brain signals it's going to seize the VNS device would send an electric current to the signal and interrupt it so it would not seize or decrease the duration of the seizure. We are checking into this option to make sure Maddie is old enough to have the device implanted. Dr. Gilles told us the youngest patient she knows about was two years old.

Maddie is on another seizure medication she started last week. Steve and I have already noticed a large decrease in the number of seizures she is having. Maddie had ramped up to having around 300 seizures a day - we are now seeing around 50 if that. We are hoping this medication will keep her seizures in check for awhile longer. The medication does have serious side effects which means she will be getting blood draws every week.

Since things have gotten a little more complicated with Miss Madeline these days I will be leaving work and staying home with her. I need to be with her right now and we need to get her back on track.

We hope you all had a wonderful Holiday Season and we hope to see more of you in 2005!

Love,
Steve, Darla and Madeline

Saturday, December 18, 2004 4:02 PM CST

Happy Holidays! Madeline has been keeping Steve and I very busy these days. Once again she sleeps all day and is awake most of the night. We are adjusting her meds so we are hoping she will quickly return to her regular schedule.

Madeline was admitted to Gillette last night for observation. She was very lethargic and pale yesterday and her left arm was very red and hot to the touch. Steve picked her up from Lori's (daycare)house and took her to the emergency room. The doctor who saw her paged Dr. Gilles and they determined she should be admitted in order to monitor her better. The doctors wanted to rule out any infection that may have been masked by one of the meds. Dr. Gilles is thinking the Prednizone we put her on this past Monday may have had more side affects for Madeline so they took her off of it last night. Maddie finally fell asleep at 3:15 this morning and was awake at 7:00. Needless to say I wasn't ready to get up...

We were suppose to travel to Marshfield to celebrate Christmas with my family today. We are very sad Maddie will not be able to see her aunts, uncles and cousins and experience her first Christmas with them this year. We will be with the Fall's Christmas Eve. We are hoping to travel to Marshfield or have something at our house for Madeline's birthday party in a few weeks.

Steve and I want to Thank You so very much for all of your love, support and prayers this past year! We wouldn't have made it through this whole ordeal with Madeline without our family and friends.

Take care and have a very happy and safe Holiday Season!

Love,
Steve, Darla and Madeline

Monday, November 29, 2004 11:31 AM CST

Madeline is teething! She is not a very happy camper these days but hopefully the tooth will pop through sooner then later...

We had a wonderful Thanksgiving with the Fall family, the usual we ate too much! Madeline had a great time seeing her aunts, uncles and cousins. She was tuckered out by the end of the day.

We enjoyed meeting our new niece on the Merkel side of the family last weekend. Hanna is beautiful and a very content little girl. She hardly fussed when she was being passed around from aunt to aunt. My sister Debbie came home that weekend too, she met Madeline and Hanna the same weekend. Maddie liked her aunt Debbie, she especially liked the adorable shoes and hat she got from her. Too Cute!

No news from Cleveland yet - we should be getting their recommendation for our next step the middle to end of December.

Love,
Steve, Darla and Maddie.

Tuesday, November 16, 2004 5:07 PM CST

We're home! Our flight home was as great as our trip to Cleveland - not a peep out of Madeline! However, NWA did loose my luggage but it made it on the flight after ours so they delivered it to our house Sunday night. I was quite relieved since it had Madeline's entire medical history binder in it. I didn't even care about my clothes (I know that's hard to believe) I just wanted that binder back!

Once again Madeline's days and nights are all mixed up. She sleeps during the day, wide awake (crying) all night. This started Friday night after she got out of the hospital and has continued until last night. She actually slept for 6 hours straight. Of course it doesn't help matters that they increased both of her seizure medications which adds to her sleepiness.

We are very excited we get to meet a new addition to my side of the family this weekend. Maddie has a new cousin we will be welcoming to our country and to our family on Saturday. Hanna will be arriving from China with her oh so happy parents Keith and Kris. We are really looking forward to this weekend. Madeline will have another new cousin come this February with the birth of Lori and Dennis' third girl - we can't wait!

Love,
Steve, Darla and Madeline

Thursday, November 11, 2004 6:04 PM CST

Maddie had a rough night last night but she is doing much better today. She had to go 48 hours without her reflux medication which meant she was in a lot of pain. They did a PH test on her for 24 hours, they inserted a tiny tube in her nose and down her throat to measure the acid level. They determined it was bad but not bad enough to change her medication. They restarted her Prevacid this afternoon and she has been great since.

Maddie got her electrodes off today - they were really started to bother her I think. She had a test this afternoon (they put a few more electrodes back on) to confirm Maddie's brain registers objects she sees. The test flashed red LED lights in her right and left eyes and the electrodes recorded what the brain registered. We won't get the results until tomorrow. Maddie slept through the whole test which was really nice and actually better for the test.

Maddie has to fast again starting at midnight for a blood test tomorrow morning. They will draw blood for another metabolic work-up. The metabolic specialist here also requested a skin biopsy. I'm not sure where they'll take it from but hopefully it won't hurt her too much. I had to call Gillette yesterday afternoon to have them fax all of her test results from all the previous metabolic work-ups she's had done since she was born. We are happy he has knowledge of more disorders to test for then what we have already.

Madeline's MRI and MRS came back normal, the PET scan has not come back yet. Since the other two are normal the doctor is sure the PET will be as well. He didn't feel it was necessary to redo the test since the MRI and the EEG do not show a focal point where the seizures are coming from.

We had a visitor today, Father John, who used to be the pastor at Holy Trinity (our church) and is in Cleveland now. We had a wonderful visit talking about the congregation and who is doing what these days. We will try to get to his service on Sunday - it all depends on Madeline.

Although we won't have any more answers when we leave then when we came we are very happy we made this trip. We have laid the groundwork for future treatments for Madeline through the doctors here and with Dr. Gilles at Gillette. Cleveland Clinic will send their recommendation's for Maddie to Dr. Gilles and we will go from there.

Maddie will be discharged tomorrow sometime - Steve, Maddie and I will stay at the Ronald McDonald House until we leave on Sunday. I hope our trip home is as wonderful as our trip here.

Love,
Steve, Darla and Madeline

Tuesday, November 9, 2004 5:14 PM CST

We are here in Cleveland! Madeline was fabulous on our flight here - not a peep out of her. Some people even commented how well she did. Steve and I were so happy she did so well.

Yesterday and today Madeline could not eat anything most of the day because of the tests she was scheduled to have. Yesterday she had a MRI and a MRS. Today she had a PET scan but she was moving too much during the test, (she was so hungry) they will probably have to do it again this week. Needless to say Maddie has been a bit crabby the rest of the afternoon.

Madeline is hooked up to the EEG electrodes and will be for several days with continuous monitoring. Hopefully they will be removed tomorrow afternoon if the doctors feel they have enough information. We will meet with the GI doctors as well this week regarding her reflux issues.

This is our fourth hospital we've had Madeline to and we can see why they say Cleveland is the Benchmark of all other hospitals. They have a world-renowned Epilepsy Center (that's why we are here) and we are anxious to find out if they can determine what is causing Madeline's seizures.

Steve stayed with Maddie last night and I will stay with her tonight until the nurses are more familiar with Maddie and her routine. Hopefully she will settle down a little more tonight and we will both get a good night sleep.

Love,
Steve, Darla & Madeline

Monday, November 1, 2004 12:46 AM CST

Madeline had a great well maybe just a good time at our 2nd annual Halloween Party with the neighborhood. Madeline was Minnie Mouse, I was a doctor and Steve - well you will have to see for yourself when you look at the last picture of the photo album. I think Maddie was overwhelmed by the noise at the party so she didn't really know what to do. Her eyes were moving around looking at everything she made me dizzy.

Steve, Maddie and I are getting ready for our trip to Cleveland. We will leave on 11/7 and return on 11/14. We are having a special Blessing at church on the 7th before we leave. We will leave after church and go straight to the airport.

Madeline had a doctors appointment last week with an Ear, Nose and Throat doctor. The doctor said everything was clear but did notice she did snort and had difficulty breathing at times. She also noticed her esophagus and vocal chords were irritated. We will be adding another medication for her reflux to see if that helps.

We will try to update the web page when we are in Cleveland. Everyone has been wonderful with your prayers and support for us - we need all the prayers we can get this next week, please keep us there.

We love you all so much,
Steve, Darla and Madeline

Wednesday, October 20, 2004 5:56 PM CDT

We have heard from the Cleveland Clinic. We will be traveling 11/7-11/14. Steve and I are very anxious and a little frightened at the same time. We certainly hope we find out why Madeline has seizures and what medication will work for her.

Madeline continues to have allergy/sinus issues. I'm taking her to an Ear Nose and Throat doctor next week. I'm hoping she will be better before we leave for Cleveland, otherwise, I'm guessing Madeline will not enjoy the flight.

Madeline was very good while Steve was out of town this past week. She must of known it was just the two of us - she slept through the nights pretty good. We sure missed daddy while he was away!

Please keep us in your prayers these next several weeks - we need them!

Love,
Steve, Darla and Madeline

Monday, October 4, 2004 12:11 AM CDT

Not much to report these days. Madeline unfortunately inherited my bad allergies and has been suffering from congestion this past month. Poor little thing snorts like a piggy when she tries to breath. This of course has interfered with her sleep, needless to say Steve and I have been dragging a little more.

We have been in contact with the Cleveland Clinic but will have to wait until they receive all of her records and test results to review before we actually schedule the trip. We are hoping to make the trip mid to late November.

Steve is leaving for a business trip next week for a week. It will be just Madeline and I hanging out having fun. I'm sure she will be on her best behavior for me. :)

Love Always,
Steve, Darla & Madeline

Thursday, September 23, 2004 11:43 AM CDT

Madeline's head bobs are actually slight seizures after all so we have started her on another anti-seizure medication. It will take several weeks to get her up to the levels she needs to be at so we won't know if the medication is working at this point.

Madeline seems to be adjusting to daycare very well. She has her good days and her bad days but for the most part she is doing well. Her OT therapists go to Lori's house to work with her. When I spoke to Lori this morning she mentioned Teresa said she had her best session yet with Maddie this morning. I'm not sure if she crawled but she was using her left hand (helper hand) to hold herself up.

We have heard we will probably be traveling to Cleveland the end of October or early November. We are anxious to get there to run more tests. Hopefully, we will come home with more answers about Maddie's seizure disorder.

Please keep us in your thoughts and prayers...

Love,
Steve, Darla & Madeline

Tuesday, September 14, 2004 12:14 AM CDT

Well I'm back to work this week, boy is it hard to be away from Maddie all day. I only called the daycare lady twice yesterday so I thought I was doing pretty good.

Maddie has her Helper Hand, she doesn't seem to mind it but she has been hitting her face and head with it a lot more. It is different to watch her move her arm around like she does and see a hand on the end of it. It will take awhile for Steve and I to get used to it.

Madeline started having some suspicious seizure like activity this past month. She had two EEG's that showed they were not seizures. However, we do not know what is causing her head to bob we are happy to learn they are not seizures.

No news on the Cleveland trip but we are hoping it will be soon.

Take Care,
Steve, Darla & Madeline

Tuesday, September 7, 2004 11:49 AM CDT

Madeline and I are at Gillette today for follow up appointments, we had time to kill so I decided I had to update the web page.

Maddie is 16 lbs. 9 oz., 25" long now. She is a peanut but all of her doctors are very happy with her progress and her continued improvement. Her tummy is still healing which means her stomach empties a little slower then she thinks it does - long story short she is still throwing up everyday at least once.

Steve, Madeline and I enjoyed a nice long weekend at Grandpa and Grandma Fall's cabin. She did very well and of course loved all the attention she received.

No news on the Mayo trip - we might not go there at all, We might go straight to Cleveland for further testing. Dr. Gilles is checking everything out for us.

Madeline is getting hungry so I better sign off for now.

Love,
Steve, Darla and Madeline

Thursday, August 19, 2004 4:08 PM CDT

Madeline had follow up appointments earlier this week which all went well. She also had her feeding tube switched out to the smaller one so you won't see the tube hanging from her anymore (yippy skippy).

Steve, Madeline and I have been keeping busy the rest of the summer attending family functions and other events. It is so nice to see improvements Madeline is making everyday. She is still working on her head control (if you had those cheeks you would have to work too!), she is really good during the day but gets tired towards the end of the day. Madeline is also becoming a little more vocal with the noises she makes. Tummy time is not fun for her but she is tolerating it a little better. She likes to pretend she's sleeping so I'll leave her alone while she is lying there.

Maddie should get her Helper Hand at the end of month.

Love,
Steve, Darla and Madeline

Wednesday, August 11, 2004 10:22 AM CDT

Madeline continues to improve although she doesn't like to crawl for me... just Teresa. Teresa was on vacation this week so no crawling out of her.

Maddie is taking all of her feedings from the bottle during the day and we run a constant drip at night. I get up a few times a night to check on her and give her medication at midnight. She pretty much sleeps through the night which is so nice.

Maddie had a prototype Helper Hand for a week so we could try it out. It was so weird seeing her with a left hand. For the most part Maddie didn't seem bothered by it - she still moved it around. We should have the real hand by the end of the month if everything goes well.

We are waiting to hear when we will be going to Mayo but it should be within the next month or so.

Please keep us in your thoughts and prayers!

Love,
Steve, Darla and Madeline

Friday, July 30, 2004 11:31 AM CDT

Madeline had a follow up EEG and we met with her neurologist this past Wednesday. The EEG showed improvement in some areas and the same activity in others but overall it had shown improvement. Madeline's anti-seizure medication is doing it's job.

We also discussed the Mayo trip again - we will wait to hear when we will be going down for testing.

Madeline did an amazing act yesterday - she started to crawl (ok maybe more like scoot) but she did it! Her OT was working with her on her tummy - Maddie put her arms out and started to crawl/scoot across the blanket. The OT said they call that "comando" crawling. She got a little rug burn on her left eye but she didn't seem to care. I was so happy for her - we called daddy to tell him the good news!
Maddie did it a little bit when daddy came home from work but she was a little too tired to do it for long.

Love,
Steve, Darla and Maddie

Tuesday, July 20, 2004 4:11 PM CDT

Madeline is doing well these days. She is drinking by the bottle more and more each day! She is 14 lbs. 13.5 oz. and 24.5" long.

Steve and I are enjoying doing more things with her and taking her to different places. She really seems to like church, especially the stained glass windows and the choir.

Maddie will be getting her helper hand in about 2 more weeks. We are anxious to see what she does with it other then hit us with it by accident. She is starting to move her arms and legs more - it will be interesting to see how she adjusts to it.

Madeline has been responding very well to her seizure medication so we have put our trip to Mayo on hold. Maddie has another EEG next week, we will meet with her neurologist to determine what our next step is.

Our computer is acting up again - I hope to have new pictures soon. :(

Love,
Steve,Darla and Maddie

Monday, July 5, 2004 9:41 PM CDT

Maddie is finally sleeping through the night again... :) This last week she did real well staying awake during the day and sleeping through the night. I actually bolted out of bed the first morning to make sure she was still breathing because I couldn't belive she slept 9 hours straight.

We had another wonderful weekend with Madeline, out and about at parties. She experienced her first 4th of July fireworks performance at the neighbors house - she slept through most of it. She opened her eyes just a few times when all of us made the Ooohhh Aaaahhh noices.

Madeline is also doing very well with the pacifier and the bottle. Steve and I (or anybody who holds her)still have to hold the pacifier for her but she is getting the hang of it. We are really happy she is doing so well with it.

Madeline has her appointment tomorrow for her "Helper Hand". We actually had the appointment last week but there was a mix up with the scheduling so we had to redo it for this week. Oh well we stopped by to see the nurses on 4 North so it wasn't a total waste of a trip.

Hope everyone is having a wonderful summer - I know we are!

xxoo,
Steve, Darla and Maddie

Saturday, June 26, 2004 8:40 AM CDT

Madeline is home!!! We are so excited!

Maddie has her days and nights mixed up right now but hopefully she will get it straightened out soon. Steve and I need sleep... :(

We came home Wednesday afternoon but I've been a little busy keeping Miss Madeline happy and for the most part awake during the day so she will sleep at night. So far this hasn't done the trick. Maddie has not fallen asleep before 3:00 AM since she has been home. We put her to bed around 9:00 but she is wide awake most of the night.

We are so happy she is home-we can work on the sleeping thing.

Thank you for all of your love,prayers & support.

Love,
Steve,Darla & Maddie

Sunday, June 20, 2004 9:15 PM CDT

Happy Father's Day!!!! We had a wonderful weekend with Madeline - she is doing so well. Hopefully we will be going home within the next two weeks.

Maddie continues to tolerate her feedings, they will be going up on the volume this week -she is at about 4-1/2 ounces every three hours. She will be bumped up to 5 ounces every five hours I believe real soon. Madeline certainly lets the nurses know when she is hungry! She has a very convincing "I'm hungry NOW" cry that you can not miss. Maddie also has started to take the pacifier more and more - she even took the bottle Saturday night. Steve and I were so happy! She took 15 ccs but she was very aggressive with her sucking and swallowing.

The doctors continue to decrease the pain medication she is on. They are going very slowly so she does not have rebound pain from it. She is on two meds at this point and she should have her last dose of one of them tonight I believe and the other one will be decreased this week.

We appreciate all of your love and support through this difficult time.

Love,
Steve, Darla and Madeline

Monday, June 14, 2004 1:58 PM CDT

Madeline is up to her feedings!!!! She has been handling them very well through the J-Tube which goes directly into her intestines. We now have to work on having the feedings go into the G-Tube which goes into her stomach. When the barium went into her tummy the surgeon had to put in a new feeding tube (G-J Tube)because her GI system completely shut down. They will be starting the feedings into the G-tube this week.

Once Madeline is feeding through the G-Tube we will be looking at going home. It is so hard to believe that we almost lost her 4 weeks ago and now she is a bright eyed little baby who is recovering unbelieveably well!

Madeline is keeping her nurses on their toes here as well. She lets them know when she needs attention - STAT!!! They are also getting a little tired of me as well. I guess I can be a little pushy at times...

Love,
Steve, Darla and Madeline

Monday, June 7, 2004 3:21 PM CDT

Madeline has been moved out of the ICU unit and on to the "floor". She is also off of her antibiotics, all 5 of them. They have started to feed her - very slowly. They started last week, just 1 cc an hour (that's almost a teaspoon) she got uncomfortable after about three hours so they had to stop. They tried again this past Friday but she got uncomfortable after five hours they had to stop. Since yesterday she is now up to four ccs an hour, they will be increasing that rate every 8 hours as she tolerates it.

Steve and I got to hold her this past Saturday which was incrediable. It had been two weeks since Steve held her and over a week for me. I held her again this morning, she slept in my arms. I miss holding her so much...

We are not sure how long we will be here. Maddie needs to get up to her regular feedings which is 5 ounces. Hopefully that will be sooner rather than later but it's all up to Madeline and how well she does. You go girl!
Her tummy is still distended but is getting softer and she is tolerating all of the doctors touching it (more like poking it... ouch!).

Thank you all for your continued love and support - Madeline continues to do well everyday...

Love,
Steve, Darla and Madeline

Monday, May 31, 2004 9:48 AM CDT

Madeline was transfered to Fairview University of Minnesota Children's Hospital this past Tuesday (5/25) due to the complications she experienced last Saturday (5/22)with the barium. One of the GI doctors felt she needed to be closer to the GI surgeons in case she needed to have another emergency surgery. She also thought she needed 24/7 observation so Madeline was admitted to the PICU here.

Madeline is in a lot of pain, she is on a continous drip of a pain medicine. She starts to cry about every hour and the nurses give her a bump of the pain medication to get her through that moment. She usually needs the bump when the nurses are doing stuff to her like changing her diaper. Right now we are just trying to keep her comfortable and sleeping so she can recover. She is on 5 antibiotics so she doesn't develop an infection so far this has helped. Madeline will be moved from the ICU unit into another room this next week. We will probably be here anywhere from 3-8 weeks so our Mayo trip has been postponed.

Madeline's tummy is still pretty distended (large), we need to wait until it goes down so we can feed her again. I'm not sure when they plan on doing this - they are following Maddie's lead. Her tummy is still bloated but it is getting softer instead of hard as a rock. It is a very slow process. Steve and I are gaining more patience everyday...

Love,
Steve, Darla and Madeline

Monday, May 24, 2004 2:07 PM CDT

Madeline had another situation over the weekend... She had to have surgery once again Saturday night to repair her stomach. She had a test Saturday afternoon which caused her stomach to collapse again, (this is what happened last Friday)they had to perform the surgery very quickly to get the barium (contrast used for the x-ray)out of her body.

Maddie was in the Pediatric ICU Saturday night and yesterday. They had her heavily drugged so she couldn't feel the pain. She is back on an IV and will be on it for a few more days. Other then being a little puffy she looks pretty good. She opens her eyes when Steve or I talk to her but we are letting her sleep the rest of the time.

We will slowly introduce the milk again, once she is back up to her feedings we should be able to go home - hopefully by next weekend.

Once we are okay to go home Madeline and I will be traveling to Rochester to be admitted to the Mayo Clinic for more testing for her seizures. During this whole ordeal Madeline has had some seizure free days when we haven't fed her. We have known all along that Madeline has a rare metabolic seizure disorder and Mayo has a Metabolic Specialist who we will be working with.

Maddie's blood and spinal fluid have been checked for every metabolic disorder known at this time but everything comes back "normal". As Dr. Gilles says ... The good news - it came back normal, The bad news - it came back normal! This past week has all of her doctors stumped with the lack of food/no seizures situation.

Please keep the comments coming. We love you all!

Steve, Darla and Madeline

Thursday, May 20, 2004 1:42 PM CDT

Madeline and I are still at Gillette hospital... We have been here for two weeks but it is not all because of her meds.

Madeline experienced a lot of complications with the switch out of her feeding tube last Friday morning. They removed the G-tube and put in a Mickey (a different type of feeding tube). I noticed something was wrong immediately - her breathing and coloring had changed within minutes of the procedure. Long story short she ended up needing surgery that evening to repair her stomach. Saturday morning she still did not look good to Steve and I but the doctors gave her the green light to start feeding her. More complications arose with this - the Mickey was leaking down her tummy and her tummy was bloated and hard as a rock. This made it very difficult for Maddie to breath. Madeline was in a lot of pain and there was nothing we could do to help her pass the milk she had in her tummy. We just had to wait.

Sunday morning they switched out the Mickey with a new one
she was much more comfortable but her tummy was still bloated. She slept most of the day. We did not feed her but she was on an IV. This week has been test after test to determine why she has a fever, all the tests have been coming back "normal".

We will not be leaving here any time soon... :(

Thank you all for your well wishes - please keep them coming our way.

Love,
Steve, Darla and Madeline

Friday, May 7, 2004 2:04 PM CDT

Here we go again.... Maddie is at Gillette again for a few days. One of her medications she was on actually had an adverse affect causing her to have more seisures so we had to get her off of it. Madeline's neurologist is introducing another seizure med that will hopefully decrease the number she had increased to on the other med.

Maddie was having seizures every 10 - 20 minutes, she hasn't slept in two days (neither have I). We'll be here throughout the weekend - she will be sleeping most of the time - the med makes her very sleepy at first. A few of the nurses are very good at taking her out to the nurse's station so I can get a few hours of sleep at least.

I'll update the pictures soon - she is getting bigger by the day...

Love,
Steve, Darla and Madeline

Tuesday, April 27, 2004 6:34 PM CDT

Madeline is home... we actually brought her home Friday night but we had a busy weekend with her so I haven't had a chance to update her webpage.

The preliminary diagnosis for Maddie is a Folinic Acid Deficiency which is the vitamin we took her off of in order to have the tests done this past week. We have increased her dosage of the vitamin - hopefully we can get the seizures under control once and for all! Steve, Dr. Gilles and I are very happy to know (or believe we know) what are causing the seizures and we can control them with a vitamin.

Madeline was the talk of the floor at Gillette for three days. They don't have babies (as young as Madeline) very often so all of the nurses and some of the mothers of the patients took a number to hold her. Yes - she was spoiled once again by all of the nurses.

Madeline is still having more seizures but they are getting shorter and they seem to be decreases by the day. The medication needs about a week to get back to a level where we will really notice a difference.

Thank you for all of your prayers and well wishes for us - we really do appreciate them.

Love,
Steve, Darla and Madeline

Monday, April 19, 2004 5:25 PM CDT

Madeline had her first road trip and sleepover this past weekend. We went to Marshfield to see the Merkel side of the family. Although Madeline had more seizures then we like she did great considering everything was so new to her. Steve and I packed what seemed like everything but the kitchen sink just to spend 24 hours outside our home. Whew them babies are a lot work...

Madeline has been having a lot more seizures these days, we have been giving her "loaded" doses throughout the day to help control them. We were trying to get them under control at home but since her neurologist wants to run more tests now that she is older and growing by the day (11 lbs, 23" long), Madeline will be admitted to Gillette this week for two days. They are going to do intensive EEG testing which is why they need her overnight. Maddie's neurologist thinks we may be seeing more seizures now because we stopped the vitamin she was on last week. Madeline needs to be hospitalized to do these tests and so they can bump up her medication at a faster rate then we can at home.

We will be taking Maddie to Gillette on Wednesday, we will hopefully be home Thursday afternoon if all goes well. I know you have been praying for Madeline and our family but we could really use some more prayers this week.

Love,
Steve, Darla & Madeline

Monday, April 12, 2004 8:08 PM CDT

Happy Easter! Madeline was 3 months old yesterday. I tried to update the webpage last night but our computer was acting up and I didn't have the energy to find out what was wrong with it.

Steve, Madeline and I were looking forward to celebrating our Easter service this year together as a family. Madeline was having a bad day on Saturday so we decided not to take her just in case she had more seizures then what we call our threshold. I was disappointed Maddie and I had to stay home but we did what was best for her. As it turns out Maddie was up all night so it probably wouldn't have made a difference. Our Easter service starts at 11:30 PM on Saturday and lasts until 3:00 AM Sunday morning. Steve got home a little after 5:00 AM, I was just going to bed myself for the 4th time.

Tonight we decided to celebrate one of Maddie's seizure free days so we packed up and headed to DQ for a crunch cone. She sure likes 'em, she also loved all the Easter candy this past week! :) While we were at DQ she took her whole feeding which is 3 oz. by bottle. Steve and I were so happy we decided we will have to go to DQ everyday if that's how well she is going to do while we are there...

xxoo,
Steve, Darla and Madeline

Sunday, April 4, 2004 8:53 PM CDT

Maddie was 9 lbs. 12 oz. and 21-1/2" long this last Thursday at her doctors appointment. Madeline also had her 2 month shots which she did really well, Maddie's nurse even commented on how well she did. We all agreed - Maddie has been through so much these darn shots were nothing...

All hell broke loose with Maddie Thursday night around 9:00. She started to have cluster seizures which means she was having several within hours. I was on the phone with the neurologist on call at Gilette around 10:30 regarding the situation. I was getting prepared for a very long night with Maddie. We had to give her 2 loaded doses of medication to get the seizures under control which we
did around 3:00 AM. Madeline also developed a slight fever as well which may have caused more of the seizures.

Steve and I finally got some sleep around 5:00 AM. I was expecting to have a very sleepy baby on Friday, I thought I could get a couple of naps in during the day. Maddie was wide awake the whole day - she slept for a total of about an hour in the afternoon. Needless to say I did not get a nap but I did have really nice dark circles under my eyes...

We also bumped up one of Madeline's medications on Thursday which makes her cranky. So not only were we dealing with an unhappy baby due to her shots we also woke up to a very cranky baby Saturday morning. Maddie is still adjusting to her new dose of the medication so she will be crying for a few more days.

I hear her crying as I'm typing this so I better sign off for now. Updated pictures to follow.

Love,
Steve, Darla & Madeline

Monday, March 29, 2004 8:14 AM CST

Madeline is Baptised! Steve and I couldn't be more proud or more happy for Maddie. Madeline was fabulous yesterday, she slept through the whole Baptism service (1-1/2 hrs.). She cried a little when she was dunked in the Holy Water but went right back to sleep.

The service was beautiful and everyone commented on how good Maddie was. Dennis and Laurie did a fantastic job being her Sponsers - they had the magic touch with her, they are the parents of two beautiful girls so they are used to calming babies. We had a gathering afterwards with the Merkel and Fall famlies - the whole day was wonderful!

Maddie received so many nice gifts from everyone at church and all the aunts and uncles. Maddie was pretty happy when she opened one gift in particular - she received a beautiful Bible and coupons for DQ crunch cones.... :) We are not sure who is more excited - Maddie or Mommy!

Love,
Steve, Darla and Madeline

Sunday, March 21, 2004 4:54 PM CST

Madeline had another awesome day at church today. Again, she slept the whole way to church and most of the service. Hopefully she will do as well next weekend when the spotlight will be on her.

Madeline was 9 lbs. 1-1/2 oz. on Thursday at her appointment. We have weekly weigh ins for her medication levels. We adjust her medication according to her weight gains.

Madeline had a seizure free day this last Friday - Steve and I were very excited and happy for Madeline. I promised her I would buy her a crunch cone at Dairy Queen but we haven't gotten there yet. No you silly people she is not actually going to eat the ice cream cone.... whatever I eat she eats! :)

The speech therapist will be here tomorrow to start our oral stimulation with Maddie. Hopefully Maddie will be a quick study and be sucking and swallowing in no time.

Love,
Steve, Darla and Madeline

Tuesday, March 16, 2004 7:38 PM CST

We had our first outing to church on Sunday - Madeline did great. She slept the whole way to church (an hour drive), slept through the service (1-1/2 hrs.) and almost made it through adult discussion before we heard a peep out of her. She started to fuss at coffee hour when everybody was downstairs and the noise level got a little too much for her to handle. Madeline will be baptized on 3/28 - we can't wait!

We met with the limb specialist today from Gillette. The doctor does not believe that Madeline was affected by ABS, but rather her missing left hand was just a "failure to grow" condition. Dr. Van Heest has 3 patients including Maddie that have this condition. We will see her again in 3 months, at that time Maddie will be fitted for a prosthetic sleeve and hand made out of silicon. The hand will not function but it will aid Madeline with her balance which will help her as she grows and develops. The prosthetic is called "The Helper Hand".

Our neighbors, Gabe and Nancy have friends who have a daughter, Lila, who was born without a right hand. She was the first patient at Gillette who was fitted with the "Helper Hand" in October of 2003. Lila's parents noticed an immediate improvement in her balance. Lila will be a year next week and continues to do well.

Steve and I are amazed at how much Madeline has changed since we have been home. However, we continue to work with the bottle, Maddie will do really good one day then won't take the bottle at all the next. We will be working with a speech therapist within the next week or so. We are hoping that once we start the oral stimulation she will get the hang of the suck swallow coordination quickly.

Keep those comments coming - we love to read them when we have a moment...

Love,
Steve, Darla & Madeline

Thursday, March 11, 2004 1:34 PM CST

Madeline is 2 months old today - she weighs 8 lbs. 13 oz. and is 20-1/4" long. We had a doctors appointment this morning and I think Maddie's doctor was more pleased with her growth then I was, he sure was happy!

Our doctor appointment with the limb specialist is next week, I said it was this week by mistake. We are anxious to meet with this doctor and find out what we can do for Madeline.

Maddie is sleeping through the night much better now. She still cries but she usually puts herself right back to sleep in a matter of a minute or two. This is really nice since I'm the one getting up with her everynight. Her seizure activity is decreasing as well. She has between 1-3 everyday but they are becoming shorter and we are able to tell when she is going to have one by the facial expressions she makes.

More to follow...
Steve, Darla and Madeline

Saturday, March 6, 2004 6:52 PM CST

Today was a big day for Maddie - she met her cousins Alex, Nadia and Elliana. Hopefully she will be able to meet the rest of her counsins Seth, Ben, Jordan, Ethan, Emily and Matthew soon.

I have taken lots of pictures of Madeline but of course she is usually sleeping when I have a chance to grab the camera and snap away. I will try to get some when she is awake and I'm not holding her.

The reflux seems to be getting better with the medication and she is becoming more tolerable in the evenings (knock on wood). It is so painful to see her in so much pain, aunt Diane and grandma Tessie saw first hand how much pain she was in last weekend. It just breaks your heart.

We are meeting with a new doctor at Gillette next week for Madeline's left hand. This doctor specializes in missing limbs - arms and hands. We will learn what we can do for Maddie and the timeframe we will do it in. Steve and I are looking forward to meeting this wonderful doctor.

Madeline continues to have seizures but they are short small ones and the number a day are going down. We will work closely with the neurologist to maintain her levels of medication in order to stop them all together if possible.

Love,
Steve, Darla and Madeline

Wednesday, March 3, 2004 7:52 PM CST

Madeline is now 8 lbs 7 ounces (she did have a sleeper and diaper on so take about 3 ounces off for that) and she is 19-3/4" long. We had an appointment with her neurologist today, Maddie slept through the whole appointment and cried the whole way home afterwards...

Madeline and I are getting into our routine these days. I guess you can call it that... She eats, sleeps and cries while of course either myself or aunt Nee Nee is holding her. Yup she has us wrapped around her little (and I mean little) finger!

Madeline has also developed more symptoms of reflux so we have her on medication for that as well. Maddie is really good during the day but by the time 6:00 rolls around she has pretty much had it and becomes very agitated for the rest of the night. Poor Steve doesn't get to see the fun, quiet side of her only the cranky one.

New pictures are coming - I just have to find the time to download them in between everything else. Keep the messages coming, we love to read them.

Later,
Steve, Darla and Madeline

Friday, February 27, 2004 10:14 AM CST

Oh my gosh it was a week ago today that we brought our little Maddie home - what a week it has been...

Madeline is getting used to her new sorroundings but we don't have our routine down yet. Right now she is in the loving arms of aunt Nee Nee so I took the oporunity to update everyone. Maddie is growing once again she is back up to 8 lbs. 2 onces (she lost a little after the surgery)and she has grown a 1/2". She is more awake at night then during the day which makes it diffcult for any of us to get any sleep. She also became very spoiled at the hospital with all the nurses holding her (myself included) so she pretty much demands to be held around the clock. She can be sleeping in my arms for an hour and the moment I gesture to put her in her crib she throws a huge hissy fit like there is no tomorrow. Oh and the laundry, how can one tiny little girl create so much laundry???

Sorry I haven't taken any updated photos this week but we'll do that this weekend.

Love,
Steve, Darla & Madeline

Sunday, February 22, 2004 8:25 PM CST

Well we are home with our sweet little angel Madeline. Of course we haven't really slept in two days but we are so excited to be home.

Madeline is overwhelmed with her new surroundings. She is more awake and alert, I carry her around the house and her eyes are as big as saucers looking at everything. This is both good and bad, she has had a few more seizures but that is to be expected with the new situation for her.

We are settling into Madeline's routine which is let's see how loud I can scream before one of them comes in my room to get me.... :)

Keep those prayers coming our way - if anything Steve and I need them more then the princess!

Love always,
Steve, Darla and Madeline

Thursday, February 19, 2004 10:53 AM CST

We have been given the GREEN Light... We are going home tomorrow!!!!! Steve and I are so excited we can hardly stand it.

I am writing this feeling unbelievable joy, as well as fear and tears in my eyes. We can't begin to THANK YOU enough for all of your love, support, prayers and comments. We will share your comments with Madeline in the years to come. She will know how many people touched her life and were thinking of her when she was in the hospital.

We will try to keep Madeline's web page up to date as much as possible when we get home. We plan on having it for a few more months so please check back and continue to add your wonderful comments.

All our love,
Steve, Darla and Madeline

PS. Thank you so much Brett for your last entry - it made me laugh out loud, I will never get tired of that joke.

Tuesday, February 17, 2004 2:05 PM CST

Madeline was taken off of her IV today and she has been transfered back to the Green Team from the IC Team which had her for post-operation supervison.

Steve, Aunt Denise, Aunt Cheryl, Grandma Sharon and I will have an extensive training class tomorrow to go through the equipment for the feeding tube we will use at home. We will also take an infant CPR class so we can be prepared for anything at home.

Nobody has actally given us the date we are going home - everyone is watching to see how Madeline tolerates her feedings, she is doing very well.

I haven't taken any new pictures lately only because the poor things hasn't had a bath in a week, we can't get the tube wet. Her hair is a mess and she smells a little... We won't be able to give her a bath until Saturday. Her nurse yesterday tried to give her a sponge bath before I arrived but Madeline was not interested in being fussed with at the moment.

Madeline has lost a few onces since her surgery - her big weight gain was mostly fluid she had retained after the surgery. She will probably be up again tomorrow since they are increasing her milk intake every 8 hours.

Our fingers are crossed we may be going home on Friday or Saturday.

xxoo,
Steve, Darla and Madeline

Tuesday, February 17, 2004 1:48 PM CST

Sunday, February 15, 2004 2:38 PM CST

Madeline is 8 lbs. 2 oz. today - she has rolls everywhere...

Madeline is recovering well from her procedure on Friday, she is of course a little cranky and still sleepy. Madeline experienced more seizure activity yesterday. Maddie was not able to be on one of her seizure medications because of the surgery and the IV she is on. The seizure medication can not be given through the IV. Although it was hard to watch her having the seizures (twitching of her arms)we now know that both the seizure medications she is currently on are helping her, this is so helpful to know.

We met with her neurologist this morning to go over our plan of attack this week and when we get home. They are slowly getting her up to the level she needs to be at with the medications once again. Madeline kept her stats where they need to be all night and today which is really good.

Tomorrow I will start to learn how to feed Madeline through the tube with the equipment we will go home with. We are hearing Friday may be the day we go home but the Green Team will determine when we can. Madeline needs to be up to her full feedings before this can happen.

Friday, February 13, 2004 3:37 PM CST

Madeline's surgery went very well today, she was in, out and back into her room within an hour. The surgeons told us she would be pretty sleepy (so what else is new) after the surgery. Madeline opened her eyes and kept them open for a good half hour. Steve and I watched her watch us, it was wonderful.

Maddie is on an IV today - we will start the feedings through the tube tomorrow after her tummy has had a chance to adjust to the new tube.

Thank you all for your prayers and positive thoughts for Madeline today.

Love,
Steve, Darla and Maddie.

Thursday, February 12, 2004 10:59 AM CST

Madeline is 7 lbs. 8-1/2 oz. today - she is growing everyday, her cheeks are a dead giveaway of that.

Madeline's neurologists continue to work on her medication combination so she has been very sleepy this week. She has also been less fussy which makes us (her nurses and myself) much happier as well. I'm sure it has something to do with the fact that I have been holding her everyday for hours on end and she has grown to like this. She especially likes it when I sing to her. I'm making up my own words to songs because I can't remember the words to any nursery songs other then Row-Row-Row Your Boat...

Madeline is having a surgical procedure done tomorrow afternoon. She is having a gastrostomy tube (G-Tube)inserted into her stomach. This is how we will feed her and give her the seizure medication. Steve and I were hoping we wouldn't have to do this but due to the fact that she is not consistant with her feedings this is the only way we can go home at this point.

The procedure is a short one about 10-15 minutes. They will insert the tube into her tummy and thats about it. We will slowly introduce the feedings she is up to now which is 70 ccs of milk over the weekend. Next week Steve and I will learn how to feed her through the tube and how to care for the tube. They are telling us this should only take about a week and we are out of here...

Please pray that the procedure goes well and she tolerates everything with it.

We are really looking forward to going home. Steve, Madeline and I would like to thank you all again for your continued support and prayers for the three of us. We love you all so much!

Tuesday, February 10, 2004 4:26 PM CST

Madeline is 7 lbs. 6 oz. today. She had an upper GI this afternoon to determine if she is refluxing as suspected. The test did show she was refluxing but it was well within the normal range for a baby. This means Maddie is probably just crabby due to the medication she is on. She does keep her nurses and myself busy trying to keep her happy...

Madeline's EEG showed more seizure activity yesterday. The neurologist's believe the level of one of her medications she is on dropped too low and the seizures broke through. They "loaded" her with this medication last night which is why she is so sleepy today. We will continue to adjust her medication accordingly.

Maddie's Green Team of doctors are really trying to get us out of here. We are finally seeing the light at the end of the tunnel, getting home where we belong. :)

Please keep those prayers and thoughts coming our way. We don't know what is down the road for us with Madeline's seizures but we sure like what your positive thoughts have done so far for us.

Love,
Steve, Darla and Madeline

Saturday, February 7, 2004 6:37 PM CST

Today Madeline was taken off the last of her monitors. I'm very happy about this and yet a bit frightened at the same time. The monitors kept track of her oxygen, heart rate, respitory and blood pressure. Although she has kept all of these vitals where they need to be by herself, it's nice to know if anything did happen the monitor would set off an alarm which meant a nurse would come in to check why it was going off. I know I will not sleep very well the next couple of nights until I know she is resting peacefully. Yes I know I'm a nervous wreck and I drive the nurses nuts too... :)

Madeline has had a few "episodes" where her oxygen has dropped this week but she brings herself right back to 100% within a matter of seconds. There has been talk among a couple of the nurses including her neurologist that she may be experiencing some reflux and that is why she destats (drops her oxygen) as they say. They may run a test to verify if this is true next week.

Madeline and I had a really good day yesterday. She took 60 ccs (of milk) by bottle at her 9:00 feeding and 40 ccs at her noon feeding. Madeline gets the swallowing part of eating she just doesn't have the sucking part down. We are working on this since it is the reason we are still here. Maddie was awake for most of the day except for a few naps she took while I talked to her and held her.

This next week we hope to find out when they are sending us home - we are crossing our fingers it is real soon. Madeline has another EEG on Monday and we pray that it will show improvement as well.

Saturday, February 7, 2004 6:35 PM CST

Saturday, February 7, 2004 6:33 PM CST

Saturday, February 7, 2004 5:55 PM CST

Thursday, February 5, 2004 4:32 PM CST

We are happy to report that Madeline has been moved to the "Green Team", better known as the "Feeders and The Growers" Team here at the hospital. Madeline has been moved to the team that gets us closer to going home. We are very pleased with her promotion.

Madeline however has shown more eye activity yesterday and today which may or may not be seizures. They are very short and Madeline gains control of them very well. Maddie has another EEG on Monday which we are praying shows more improvement like we had this last week.

Madeline is growing like a weed she is up to 6 lbs. 14 oz., she will probably tilt the scale at 7 lbs. this weekend. As you can tell in the pictures her cheeks are getting pudgy, her tummy and her legs are as well. The first couple of weeks I thought for sure I would break one of her legs off trying to change her diaper they were so tiny.

Thank you for all the kind words everyone has been writing to us, we love to read your messages.

Tuesday, February 3, 2004 11:25 AM CST

We met with one of Madeline's neurologists yesterday afternoon and we received the results of the EEG from the morning. The Dr. said the EEG showed more improvement from the three EEG's Maddie had last week. We are very encouraged to hear about her improved brain activity. The Dr. took her off one of the seizure medications and increased another one to work towards only having her on one when we take her home.

I spoke to Madeline's main neurologists this morning and she too is very happy with how Maddie has been behaving and interacting with all of us. She will probably become more sleepy again this week due to the increase in the one medication but she will become accustomed to it and tolerate it more easily.

We continue to appreciate all the messages we receive and the cards in the mail from all of you. Keep those prayers and thoughts coming our way...

Thank You!!!!

Monday, February 2, 2004 9:58 AM CST

We had a wonderful weekend with our Maddie. She was more awake than usual and had her eyes open quite a bit. We celebrated her 3 week birthday yesterday which was pretty low key - we held her most of the day. We met the 4th neurologist on Saturday and she was very encouraged with the way Madeline was interacting with her. She was expecting to see a listless baby, but saw the opposite. There have been no reports of any seizure activity since 1/25 and Maddie is continuing to gain weight as she is now 6 lbs. 10 oz.

They are currently conducting an EEG on Maddie this morning and from a parents perspective it looks better than the others. Thank you and please continue the prayers for Maddie. We all appreciate and are encouraged by the power it has.

Updated pictures will be coming tonight. :)

Thursday, January 29, 2004 8:34 PM CST

An EEG was conducted this morning and the results of the fonolic acid and vitamin B6 did not seem to change the EEG, so these two issues appear to not be causing the seizure activity. We will continue to keep Maddie on these for about one week to ensure that these are truly ruled out. Tomorrow she will have another EEG to see if her brain wave activity improves with the new anti seizure medication being introduced tonight.

Please continue to pray for our little Maddie, with the power of prayer we will be able to overcome her tough obstacles.

Wednesday, January 28, 2004 8:46 PM CST

The doctors performed a EEG today and the result came back slightly abnormal. This means we have to conduct more tests to try to determine what is causing this abnormality. They believe that she might be some undetectable seizure activity.
Thursday AM the doctors will conduct another EEG to determine whether Maddie has a deficiency with folinic acid or vitamin b6. If this does not prove to be the issue they will conduct another spinal tap to verify whether she has any neurotransmitter problems. The approach that is being taken is aggressive, but safe and designed to ensure that we take the best approach for Maddie.
On a lighter note Maddie is gaining weight as she is now 6 lbs. 3 1/2 oz. She is responsing by opening her eyes when we speak to her. This is a good sign and shows that the medication is working.

Monday, January 26, 2004 2:43 PM CST

We met with the neurologist this afternoon and the MRI Madeline had this morning came back normal. She was suppose to have another EEG today but because it is not an emergancy for her they will try to do it tomorrow. The doctor who was on staff yesterday ordered the MRI and EEG to be done to see if they would help us understand why she is having these seizures. The tests are coming back normal once again so we have no way of telling why she is experiencing the seizures. We will continue to work with the neurologist and the doctors to work towards a medication level that will keep the seizures under control and have Madeline function as a normal baby (not so sleepy).
Steve and I want to thank everyone who has visited Madeline's webpage and have written a note to us. We are blessed and fortunate to have such wonderful family and friends. We are looking forward to the day we can show our little Madeline to everyone....

Sunday, January 25, 2004 8:06 PM CST

The first part of day started with great news that Maddie was going to be seeing a different group of doctors to start to work Maddie and her parents towards our way home in Hudson. A setback came when Maddie started to have seizures in the afternoon. These seizures appear to be more mild than the ones she was having about a week ago. The doctors feel that the medication that has been given to Maddie got to low or the second medication that she was taken off of five days finally wore off and this is the medication that was actually controlling the seizures. It is hard to tell with a little baby as they cannot tell you what is wrong. For now we will have to wait and see, but they did increase her current medication and place her back on the second medication. Hopefully this is just a momentary setback, but we need all of the thoughts and prayers we can get to bring our Maddie home.

Thursday, January 22, 2004 9:23 PM CST

Today mom and I just hung out in my room - she kissed my head a lot and told me how cute I was and stuff like that. I had my favorite nurse today Laurie, she is really nice and she makes me do the baby dance which makes my mom laugh... so what else is new?

On a more serious note, Maddie is improving everyday. She continues to become more alert, she even had the hick ups today which kept her awake for more then 15 minutes which is really good for her at this stage. We still don't know when she will be coming home with us, but we are pretty sure it will be real soon.

Tuesday, January 20, 2004 2:14 PM CST

Today Maddie has been more alert (crying more and opening her eyes). This is due to the reduced level of anti-seizure medications in her body. Overall she is becoming more alert and no formal seizures have occurred since the reduction of medication.
You may have noticed her left hand was not developed as normal. This is due to a condition called Amniotic Band Syndrome. We have included information below to help explain what this condition is since we had no idea about this condition until it affected Maddie. The web site that we found this information at is http://www.amnioticbandsyndrome.com

Amniotic Band Syndrome is a set of congenital birth defects believed to be caused by entrapment of fetal parts (usually a limb or digits) in fibrous amniotic bands while in utero. In other words: Before the baby was born the body parts that shows signs of ABS (arm, fingers, toes, etc.,) were caught up and entangled in string-like bands of the placenta. This caused abnormalities that were present at birth.

Amniotic Band Syndrome - Incidence

Amniotic Band Syndrome (ABS) affects approximately 1:1200 live births. It is also believed to be the cause of 178 in 10,000 miscarriages. Recent literature supports that ABS occurs more often than once thought. Up to 50% of cases have other congenital anomalies including cleft lip and palate and clubfoot deformity. Hand and finger anomalies occur in up to 80%.

Amniotic Band Syndrome - Causes

Amniotic Band Syndrome is not genetic (i.e. not inherited). It is extremely unlikely that ABS will affect a future pregnancy. To date, no prenatal factors have been associated with ABS.

The commonly accepted view is that ABS occurs when the inner membrane (amnion) ruptures without injury to the outer membrane (chorion), this exposes the baby to fibrous sticky tissue (bands) of the placenta which can float in the waters of the uterus, these fibrous tissues can entangle the baby reducing blood supply and causing congenital abnormalities. In some cases a complete "natural" amputation of a digit(s) or limb may occur before birth or the digit(s) or limbs may be necrotic (dead) and require surgical amputation following birth.

Tuesday, January 20, 2004 2:13 PM CST

Tuesday, January 20, 2004 1:58 PM CST

Monday, January 19, 2004 9:15 PM CST

By the way, the photos are from Maddie's one week birthday. Aunt Denise and Grandma Tess made cupcakes and everyone sang to Maddie.

Monday, January 19, 2004 5:16 PM CST

Maddie is stable today and has had no seizures. The doctors have slowly been introducing her mother's milk into her system and she is up to 50% milk vs. IV. The doctors are adding 5CC, approximately 1 teaspoon, every 8 hours and Maddie should be entirely on breast milk within 36 hours. Her spinal tap for infection turned out to be negetive, so the doctors will be taking Maddie off her antibiotics soon. We are also, waiting for the neurologist to visit to see when Maddie can be taken off of one of the anti-seizure medications. We believe this will be tonight yet. This will help to make Maddie more attentive and better able to interact with her environment. Hopefully the seizures do not show up anymore.

Monday, January 19, 2004 5:14 PM CST

Journal update for January 17 and 18. Maddie has remained very stable as she has been medicated to control her seizures. The medication has worked very well and we are in a wait and see mode until Monday.

Thursday, January 15, 2004 5:02 PM CST

Madeline has been doing so well, until we discovered that she is having seizures. I first thought these were her way of adjusting to her mother's milk, but this was not the case. She was also that limp and not acting like a typical baby would. A Neurologist came in to see Madeline and ordered a EEG and a MRI. The results from the MRI were normal which made her parents very happy.

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