The past couple of days have afforded us the chance to exhale, decompress a bit and reflect on Maddie’s benefit. We always knew how special Maddie was and over the past 3 years we were able to witness on so many occasions her ability to draw love out of people. Those occasions usually involved a person or two at a time in the comfort of our living room. After Sunday’s incredible turn out, Maddie has proven to all of us once again that she is just as special now as she ever was. Life has been a roller coaster the past 3 ½ years, and we have experienced some tremendous ups and some obvious downs along the way. So often we have been asked, “How do you guys do it”; and we always pointed to the support group we have had all along. The showing of 600 plus people who came out to support us on Sunday is the clearest indication of the quality of support we have enjoyed the past few years. It is that support that has given us the strength to face each day with a smile, and allowed us to truly enjoy Maddie and the boys in the brief time that we had her here with us. To see so much love in one room on Sunday was an experience that we will never forget, and we hope that these words are sufficient enough to convey to all of you how deeply appreciative and thankful we have been of your support, and how proud we are to call all of you our friends.

To our number 1 supporter, we would like to thank you Maddie, our Angel. You have guided us along this journey and we know that you are watching over us now and will continue to. We love you so, so much.

Thank you and God Bless All

As of 8:00 p.m. tonight, all baskets unclaimed at the benefit yesterday have been delivered or messages have been left with the winners.
Thank you again for all of your support.

Pictures from the benefit will be posted soon!

We would like to thank everyone for their support at the benefit. We had an incredible turn out!

As for Chinese Auction results, only a handful of baskets were unclaimed and those winners will be contacted today by Maddie's crew.

Thank you to all of our friend and famlily who helped us yesterday and to all of the area companies who were so generous in their donations.
We would especially like to thank John and Fran Ricotta for donating all of the food at the benefit.

Some of the Chinese Auction items available at the benefit:

Millenium hotel overnight stay with dinner gift card and movie passes
Hampton Inn West Seneca overnight stay with dinner
Hampton Inn Downtown overnight stay in jacuzzi suite w/dinner and Soho bar tab
Staybridge Suite overnight stay with dinner and movie passes
Buffalo Lodging overnight stay at any listed location w/dinner
Buffalo Lodging overnight stay at any listed location w/ dinner
$100 gift certificate to The Mansion w/ Soho bar tab and brunch at Shanghai Reds
Adam's Mark Hotel overnight staty and gift card
Sony mini stereo system with MP3 playback
Hand-made snowflake quilt
Hand-made halloween items
Skibereen Farm – 4 free horse riding lessons ( $100 value )
Skibereen Farm – 5 days of horse riding summer camp ($200 value)
Jim Kelly signed football
Bills signed football
Bills signed football w/ Hall of Fame passes
Framed Artwork
Marc Murphy Photography– Buffalo waterfront and Delaware Park Japanese Garden photographs ($100+ each)
Women's leather Harley-Davidson vest
Union Square Rehab and Health – free massage ($100 value)
Bills tickets
New Era Caps
Michael's Studio product and gift certificates ($325 value)
Allure Salon product and gift certificates ($130 value)
Anthony's Upstairs products
Digital Camera
portable DVD Player
cases of General Mills Cereal
Frito Lay Chips
Baby boy (multiple baskets)
Baby girl (multiple baskets)
Fisher-Price baby toys (multiple baskets)
Fisher-Price toddler toys (multiple baskets)
Family Game Night basket
Night out at Movies w/ Webkinz basket
Creative Memories ($200+ value)
Yankee Candle basket
Jellystone Yogi Bear backpack w/ toys
Christmas & coffee basket
Explore and more family membership
Italian dinner basket
First-aid/hygiene basket
Christmas & train basket
Bath and Body Works (multiple baskets)
Lottery (multiple baskets)
Baking basket
High School Musical basket
Fall quilt and accessories basket
Wilson Farms coffee basket
$100 Ashley Furniture gift card and lamps
$50 Barnes and Noble w/ Dr. Seuss books
$50 David's Grille
$50 Friar's Table gift certificate
$50 Ben Garelick Jeweler's gift certificate
$30 Gold Mine gift certificates
$50 Tops gift card
$50 Noco gift card(s)
$50 Silpada
$30 Schunk's West Hill Grill
Avon basket
Tastefully Simple basket
Mary Kay basket
Chocolate Basket (multiple baskets)
Buffalo Bisons basket w/ Baseball Hall of Fame passes
Knitting basket
Gardening basket
Tea basket
Girls Just wanna Have Fun (ages 7-13)
Wine basket
Liquor basket(s)
Paws in the Pantry basket
NASCAR – Kyle Busch die cast car, Denny Hamlin hat, Kyle Busch M&M fleece ($150 value)
Stereo Advantage basket
Culture basket – Albright Knox, Riviera Theatre, Historical society, Musical Fare theatre
Sabres Tix w/ $50 Visa Card
Taste of Buffalo basket
Miss Buffalo Cruise
Sabres Tix w/ knit hat, license plate holder, etc. ($250 value)
Borders – backpack with Webkinz and kids books ($150 value)
Curly's gift certificate and sauces
Delta Sonic – oil changes and cleanings ($130 value)
Village Clay - $30 gift certificate
Hunter's Hope tote w/ gifts
Integrity Office – office supplies ($50+ value)
J.P. Fitzgerald's – gift certificates
Ciferni – free in-home interior design consultation ($250 value)
Page's Paradise Island – indoor golf/pizza package
Bounce Magic – family package w/pizza
Panera – free loaf of bread each month for a year ($100 value)
The Dog Bar gift certificates ($60)
The Roycroft gift certificate ($75)
Sabres – autographed photos of Rivet, Numminen and Roy
Westermeirer DDS – teeth whitening ($335 value)
Southtowns Dental – Sonicare toothbrush and whiteners ($150 value)
Bowling packages
Intimidator leather jacket
Pyrex set
Scrapbooking basket
Halloween candy basket(s)
Home Interiors candles basket
LaDeDa pet accessories
and many, many more.......

Below are some of the silent auction items that will be avaiable for bid at the benefit:

Darien Lake packages:
#1: Campsite with water, electric & Sewer (Tier 1 location) for up to six guests, including three days of theme park admission and two nights of camping. Valid 2009 or 2010 season. ($436.00 value)

#2: 35' RV Rental (VIP unit, lakeside) for up to six guests, including three days of theme park admission and two nights in an RV rental on site by the lake. Valid 2009 or 2010 season. ($676.00 value)

#3: Pool view hotel room for up to six guests, including three days of theme park admission and two nights use of a hotel room on site. Valid 2009 or 2010 season. ($636.00 value)

Signed Paul Posluszny jersey

Signed Lee Evans game football

Signed Ryan Miller stick

Sigend Jason Pomenville stick

Guitar, amp, tuner and bag

Party rental package: includes tent, tables,chairs, bounce house and snow cone machine ($500 value)

Byrncliff overnight golf packge – includes 18 holes of golf for two, dinner, overnight stay and breakfast ($400 value)

This picture was taken by Uncle Pete at Maddie's 3rd birthday party. The hands starting at 1 o' clock and moving clockwise are:

Daddy, Mema, Great Grandma Betty, Aunt Carrie, Grandpa, Grandma & Mommy

It is with a tremendous amount of sadness that we must share with all the passing of our beautiful, sweet, precious daughter; Maddie. On Thursday, September 24th, 2009 our baby was granted the mercy she so bravely and courageously fought for, for so long. We are so thankful to God for delivering her from the suffering she had endured over the course of the past 6 months, so peacefully, from mommy and daddy’s arms to His.

God knows we tried with every fiber of our being to change things for Maddie, but it just wasn’t to be. We miss her so much, and words cannot describe the depth of the loss we feel even though we know Maddie is in the absolute best hands now. There is a void in our lives and house, but our hearts will forever be filled because of Maddie.


The past 3 years have been the happiest 3 years of our lives. We spent the last 3 years learning about love, and what it means to love unconditionally. We learned that at the end of the day there will always be a limit on how long we all live, how big a house can be, how expensive a car can be or how much money we can make. More importantly though, we learned that there will never, ever be a limit on how much we can love. How much we love our family, friends, community and those strangers we pass on the street is without limits; unless we choose to do so. We are in our mid 30’s and we learned this from a 3 year old girl who never spoke a word. She was without a question a gift from God.

We have always expressed that we believed and we still do that Maddie had a purpose. We believe that purpose was to give us all an example of what God’s gift of unconditional love encompasses. Maddie did that, and we are so proud of her. The fact that there was somewhere between 400 and 500 people at Maddie’s Mass to celebrate her life is a clear indication that people have received her message loud and clear.

At Maddie’s Mass to celebrate her life we read a letter that Ann and I wrote to Maddie for her Eulogy, because we felt that by doing so people would get a true feel for what she meant to our family. We felt like sharing her Eulogy with all of you here in this forum so that her life may be celebrated even more.

October 3rd, 2009

Throughout her 3 years with us Maddie had 4 hospital stays that totaled 160 some days. We had lots of one on one in those days and nights.
About 2 weeks or so into her life I began sharing a baseball analogy of life being like an at bat. For Maddie it seemed at the time like she was born with 2 strikes against her so I would whisper to her to just protect the plate. Stay defensive and maybe we could turn the count in her favor. This past March Ann and I were at Maddie’s bedside at the hospital. It was a Saturday night and both of us knew something was terribly wrong with our baby so we held hands and we prayed together. And then I told Maddie it was ok to swing for the fences if she wanted to. It was shortly after that we were informed of the severity of Maddie’s condition and I couldn’t help but feel defeated. 2 weeks ago, after about 6 months of reflecting on Maddie’s life and what she has meant to us I came to a realization and I was able to share that with Maddie. As I held her I told her how proud we were of her because she had in fact come into this world swinging for the fences and that the moment she joined us she hit the ball out of the park.
Maddie never had 2 strikes against her nor was she ever behind in the count. She just spent the last 3 years gracefully rounding the bases; she was on her way home.

Ann and I thought the best way to celebrate Maddie’s life with all of you would be to express what she has meant to us. In attempt to do so, we wrote Maddie a letter from our hearts, and we would like to share that with all of you today.

Our Precious Maddie,

It has been 9 days since we last held you, yet it seems only a few hours have passed. We miss you so much baby but we know how happy and free you must feel right now and for that we are over-joyed. Mommy and daddy and your brothers along with all your family and friends, have gathered at church today to celebrate what a beautiful little angel you are and the life you lived here with us. We know you can see and hear us and we want you to know that even though we cry a lot, we will be okay, because we know you are safe in the arms of God.
Mommy and daddy want you to know how happy we were that your journey from our arms to God’s was peaceful.

Though we have told you so many times over the past three years, we just wanted to tell you again how much we love you and how proud we are of you. When you were born, mommy and daddy were so scared. We had no idea how we would take care of you, but you made it so easy for us. We have always been so amazed by your strength and courage. Our family has had so many people tell us how strong our family is and we want you to know that you have been and will always be the inspiration of that strength.

You were always so happy Maddie. You always had a smile on your face, despite the odds you faced all along. You just had a pure joy for life; maybe that’s why you always refused to sleep. Mommy will miss your all nighters. We will miss you kicking your legs in joy with anticipation of being held as we gestured our hands to pick you up; the way your eyes followed us around the room in anticipation of that gesture. And how could we ever forget when you discovered how to roll, and you would roll and roll and roll until your oxygen line wouldn’t let you roll any more - and then you would roll back in the opposite direction. Yes Maddie, you were funny as well. Most of all though: we will miss your eyes, for your eyes spoke to us in so many ways Maddie. They always had a story to tell. So we will cling tight to the pictures with your beautiful eyes because they will continue to speak to us for years to come.

While you’re listening Maddie, mommy and daddy want to say thank you for all you have taught us over the last three years. You have led an entire family into the arms of God. Your life has been a testament to God’s will and opened our eyes to how beautiful life can be with faith and hope. We are so blessed to have been chosen as your parents and will forever cherish the time we had with you. You will always be our compass Maddie, our true North. You have given us a priceless lesson of what unconditional love is, both from you and from all those around you. We cannot remember a time when just holding you wasn’t enough to stop your tears. You just wanted to be loved, and there was nothing we loved more than loving you.

Mommy says you showed her that she can’t always control everything, and I’ve been telling her that for a long time sweetie, but somehow you knew how to make her understand. It was from you that we learned how to live in the moment and soak up the simple things in life. Too often we focus on the milestones in life when it’s the small hours that define life. What we’re trying to say to you Maddie, is you taught us how precious life is and how to enjoy it. More importantly, you taught us all of these things with a smile, and you never spoke a word.

Since last Thursday, Luke has been walking around with your purple and pink purse, claiming your Ernie doll as his own and asking for his Maddie Moo. When we sat down to write this letter to you we asked your brothers if they wanted to tell you anything. Zack said he wants us to tell you he loves you and asked us to draw a heart. Nate said he wants you to know he loves you and he would do anything to have you back but he knows you are where you belong. You have had such a profound impact on them as well Maddie. Mommy and daddy have explained to them that as long as we love our neighbors and reach out to help those in need, then your spirit will continue to shine.

Maddie, when we woke last Friday morning and walked into the living room, you were not there but you were everywhere. We can see you in the eyes and in the smiles of your brothers. We feel you in the love mommy and daddy have for one another. We sense you in the compassion from your grandparents and your aunts and uncles. We know you’re saying “I love you mommy and daddy” from the support we have received from our community. You took great care of us while you were here Maddie and we know you will continue to watch over us from Heaven.

You are our Velveteen Rabbit. Thank you for making us real. You were our morning, noon and night and you will eternally remain in the center of our hearts.
With all our love, Mommy & Daddy.


On behalf of Maddie we would like to thank all of you for the love, thoughts and prayers you have sent our way over the past 3 years. It is your generosity and caring that truly captures the essence of Maddie’s spirit. We leave you with the lyrics from a song that we have grown so fond of, as it sums up perfectly our sentiment for Maddie. The song is called The Dance.

Looking back, on the memory of, the dance we shared beneath the stars above. For a moment, all the world was right, but how could I have known, that you’d ever say goodbye.

Holding you, I’ve held everything. For a moment, wasn’t I a king, but if I’d only known, how the king would fall. Hey who’s to say, you know I might have changed it all.

And now, I’m glad I didn’t know, the way it all would end. The way it all would go. Our lives, are better left to chance I could have missed the pain but I’d of had to miss the dance.

Thank you for the dance Maddie

HUGS FOR MADDIE

Bracelets were purchased to help raise money for Maddie's benefit and are available for $2 a piece. Bracelets are purple and have "Hugs for Maddie" on them. Available in medium and large. Maddie has hers!

Maddie's Story

Madelyn Mary Lippitt was born on August 28th, 2006. She is the twin sister of Luke Lippitt and also has two older brothers; Nathan who is 7 and Zachary who is 5. Maddie has endured a long struggle from the early fetal stages of her life up to and including the present. While her future is unknown, her story has been one of inspiration and we would like to share it with you.

I think Ann and I will forever remember the first time we saw Maddie at our 19 week sonogram. The tech first saw Luke and told us it was a boy (our third) and we were just as happy as we were for the predictions by previous techs that Nate and Zack were boys. And then she saw Maddie; "it's a girl". Wow, a daughter. Immediate thoughts of "daddy's little girl" and "mommy's little angel" consumed us. One of the happiest moments of our lives. As the tech spent more and more time examining Maddie the mood quickly dampened and happiness turned to sadness when a doctor came in and told us there were some issues she was seeing that were not good at all. She felt strongly that Maddie had some kind of chromosomal defect and ran some tests. We waited 10 days for the results, the longest 10 days of our lives. The results came back negative for any kind of chromosomal abnormality, yet the specialist maintained that there were too many signs from that sonogram as well as future sonograms to indicate otherwise. So a very long pregnancy ensued. It was a pregnancy of mixed emotions and a roller coaster of ups and downs. On one hand there was as far as a sonogram could indicate a very healthy boy and on the other hand a very unhealthy girl. So many questions racing through our heads, was the doctor right, maybe Maddie will be just fine, what if she's not fine and how bad can this be?

Moments after their birth in the wee hours of a Monday morning our fears were confirmed. Luke was completely healthy and Maddie visually had some very obvious problems. Prior to their birth we met with some genetic specialists who presented us with a couple of different syndrome scenarios based on the pictures they had viewed from the sonograms. She might not live through delivery; she might not live longer than 48 hours after delivery were the outlooks of 2 of the 3 syndromes we were presented with. Maddie was quickly whisked off to the Neonatal Intensive Care Unit where she would spend 73 days before coming home. She was born with severe contractions of all her joints, 2 dislocated hips, rocker bottom feet, a diaphragm that was not functioning properly which prevented her from taking a full breath and required supplemental O2, scoliosis which caused further complications of her breathing and severe reflux that made aspiration an everyday possibility. Genetic Doctors linked all these issues to a freak genetic mutation. She had several surgeries during her 73 days in the NICU to fix some of her issues but as time progressed none proved to be successful. Prior to leaving the NICU a feed tube was surgically placed through the exterior of her stomach into her actual stomach so she could receive feeds. She just couldn't eat orally. To say the least, we had a long road of sleepless nights in front of us.

Maddie came home on November 9th, 2006. With our heads spinning we began to learn a daily routine that would benefit a special little girl with some extra special needs. Slowly the spinning slowed down as caring for Maddie became a normal routine. There would be numerous physical, occupational and speech therapy visits on a weekly basis as well as lung doctor visits and feed clinic visits. Also mixed into the weekly schedule were chiropractic and massage therapy. The complexity of the dozen or so extra steps it took to get her through the day as opposed to the boys became second hand to us. Feeds however remained a struggle. It took us almost 2 years of trying this and trying that to find a feed schedule that Maddie could tolerate as far as keeping food down. It has always been a delicate balance of when to feed her and when to give her stomach a break so as to protect her from aspirating.

Over the course of the first 2 years of her life, Maddie had hospital stays of 12 days and 4 days in addition to her first 73 days due to illnesses. Common colds have always had the potential of wreaking havoc on her body and twice it landed her in the hospital. We have always been very protective of her when it came to keeping her away from viruses.

We had begun to look into a couple of different options for surgeries that would hopefully get maddie off the supplemental O2 and had traveled to Pittsburgh and Cleveland to have some very highly recommended Orthopedic specialists and surgeons look at Maddie. She was a candidate for a surgery that Doctors thought would be instrumental in straightening her scoliosis and in turn correct the non functioning diaphragm which would get her off the supplemental O2. If all went well with that we could than proceed down the road with necessary surgeries to fix her feet and hips. Only one obstacle prevented us from the surgery and that was Maddie's weight. She didn't have enough beef on her so we needed to plug away on her feeds however we couldn't just turn on a switch for feeds. So we plugged away.

As 2009 approached we began working more intensively with a local lung Doctor as to helping Maddie gain weight. One of her main reasons for not gaining weight in addition to the amount she could tolerate eating was shallow breathing due to her diaphragm. Breathing shallow meant more breaths which equated into burnt calories. So after consulting with him on numerous occasions we decided that we would try a method of assisted breathing at night to conserve the calories. It would require an up to 2 month hospital stay but it would be worth the results if she gained weight and we could get her to Pittsburgh for the much needed surgery. Our only request was that we wait until the spring of this year as we did not want to subject her to cold and flu season in a hospital. We were very optimistic for Maddie's future.

As the last week of January rolled around this year a very bad flu was going around and having 3 boys in school and daycare it was impossible to keep it out of the house. By the beginning of February the inevitable happened and Maddie had caught it herself. Things quickly spiraled out of control and on the morning of February 7th 2009 we found ourselves calling 911 as Maddie began to have some serious trouble breathing. She was rushed to Children's Hospital. When she arrived in the ER she was in Respiratory and Cardiac arrest. Maddie's anatomy due to the scoliosis and the contractures had made it difficult in past hospital stays to intubate her and this time was no different. It took an hour to intubate her this time and during that hour there were periods in which her brain went without oxygen. The results of her brain trauma are devastating and overwhelming. She spent another 66 days, this time in the pediatric intensive care unit with Doctors trying to ease the misfiring going on in her head. It took a majority of the 66 days to get her to a point where she wasn’t in what always looked like excruciating pain. Finally after achieving comfort for her she was released home under our care with the assistance of essential care, the pediatric division of hospice.

Maddie never had the ability to talk or walk but she had discovered her own way to communicate and maneuver. Her favorite way to communicate was with her eyes and with her smile and she always had a smile. Her brain trauma is so global and so significant that she has lost all those abilities. The only ability she has is to open her eyes but she cannot see. She has regressed in her feeds and can only tolerate 1/3 of what she used to before throwing up and has lost the ability to protect her own airway. She requires a watchful eye and constant care 24 hours a day.

Needless to say our optimistic appraisal of Maddie's future was shattered on that morning of February 7th. Still, we fight on because we love her and more importantly because she has fought so bravely through so much. She has been behind the eight ball since day one and she has smiled through it all. We are so proud of her and honored to call her our daughter. She has been loved by so many people of whom we know and don't know. She is an angel and her message is God's unconditional love. She has truly been and will forever be a blessing and inspiration to our family and hopefully many more.

We are 1 day shy of being home for a week and so far things are going well. Maddie has for the most part, comfortable days and somewhat rough evenings. We are working with nurses who come out 2x a week and are available 24/7 as well as Maddie’s pediatrician to try and find a balance in her meds that will allow her to be both awake and comfortable at the same time. So far we have not been successful; however we will continue to tinker. Unfortunately it’s a reality that the balance we are in search of may not be a possibility. That being said she spends pretty close to the entire day, eyes closed and resting COMFORTABLY.


So far it has been an adjustment accepting the fact that Maddie is not the same little girl she was prior to entering the hospital on February 7th. The brain trauma issues aside, the facts that she cannot be intubated as well as not being a candidate for a tracheotomy have just about eliminated any chances of her overcoming another illness. So we are left with the grim reality that our little girl is in a very fragile state.


It is extremely difficult to share such news with all of you, but we feel it’s important to be completely realistic with all of you who have been thinking of and praying for all of us. Just as importantly we want you all to know that we will continue on as we have for the past 3 years, with faith, hope and love for our family.


It is great to be home and a family again; it has been a huge boost for all of us to be together. The look of pure excitement on Nathans face when he walked into the living room on Tuesday to be surprised by Maddie’s presence had Christmas morning written all over it, and can be translated into nothing less than pure love for his little sister. It has been truly amazing to see an almost 3 year old little girl who has never uttered a single word, extract that kind of love from all those whom she has come in contact with as well as those of whom she has never even met. We learn from her every day; she truly is an angel and we are blessed to be her parents.


We will continue to try and update this blog on a weekly basis or whenever time permits. We cannot express enough how instrumental all of you have been in getting us through the last 2 ½ months. Family, friends, faith, hope and love has carried the days during that stretch and will continue to carry the days well into the future.

God Bless

Rick, Ann and Maddie.

WE ARE HOME!

We were discharged at 11 am and walked thru the front door at 11:30. We will post more info once we are settled, we are waiting for the boys to come home and see Maddie;They have no idea! Just wanted you all to know she's home.

Happy Easter!

Hope everyone had a Happy Easter.

Well we made it through a weekend with out any crazy developments or setbacks. (A very lonng sigh of relief!)

Maddie remains at 32ml/hour on her feeds and is doing ok with them. We can tell the continuous feeds (24/7) are starting to catch up with her, but hopefully after today we will be able to put her back on her old schedule.

I say hopefully after today because we are cautiously optimistic that she is coming home tomorrow! Barring any setbacks over the course of the next 24 hours she will be coming home at some point on Tuesday, so I'm sure you all know what our prayers are focused on right now.

Nothing has really changed in terms of her condition that made the Doctors say she can come home, we are all just in the same train of thought that she might as well rest comfortably at home so we can be a family again. She will remain in need of a watchful eye around the clock for as far as we can see. She has been approved for overnight nursing at home, however there are no nurses or agencies responding to the request so Ann and I along with the rest of our family will be by her side throughout the days and nights to maintain her comfort and safety.

We will keep you posted on her arrival home.

Your continued thoughts and prayers are greatly needed and appreciated.

Ann, Rick and Maddie.

We are happy to relay to all that significant progress has been made in Maddie achieving a decent level of comfort. A couple of new meds have been added to the mix and they have been instrumental in greatly reducing any kind of pain she was in. She is heavily medicated throughout the day, therefore sleeping a majority of it. While this is not the state we prefer to see her in, it is a thousand times better than our only other option which is for her to suffer in pain.

We are hopeful that we may be able to bring her home by the end of next week. Feeds have been reintroduced and she is up to 32 ml/hour which is all they are requiring for her to be released. She has been at that level for 24 hours now and we are keeping our fingers crossed that she will continue to tolerate the feeds. Aside from that, the Doctors just want a little more time to tweak her current meds and find the perfect balance for her. She has been requiring occasional doses of morphine to treat pain and they would like to be able to eliminate those occurrences.

We will keep you all posted.

Ann, Rick and Maddie

We have been waiting to post since things have been a roller coaster to see what time would tell. Time is not painting a very good scenario for our precious little girl. She has remained on valium and muscle relaxer all week and yet she still remains very irritable and in very obvious discomfort at best 95% of the time. It seems the only time she isn't irritable or in discomfort is when she finally exausts herself from little to no sleep.



They have literally performed any kind of test and consultation you could imagine and all indications point to the significant brain trauma she has experienced. It has become very apparent that her being in arrest and the hour spent trying to intubate her was a catastrophic event. The doctors whom specialize in brain trauma have explained to us that children who experience the type and amount of trauma she has have a strong tendency to not fair so well. That in addition to Maddie's pre-existing diagnosis does not bode well for her at all.



Our focus now is her being comfortable. She has been struggling for quite some time now and does not deserve to be in such pain. Again we could not be prouder of the way she has fought so bravely. We just pray that she can be as comfortable as possible and ask all of you to do the same.

Ann, Rick and Maddie

Maddie's weekend has not been good by any means.

Since thursday she has probably slept a total of 6 hours. Last night was the worst night she's had thus far and several new developments have taken place. She now has a double ear infection, an x-ray has revealed that she may be developing pneumonia and several other cultures are still pending to determine a few other possibilities. Her heart rate was around 200-220 beats per minute throughout the evening, accompanied by a 102-103 fever as well. She had an IV line put back in so they could administer the neccessary antibiotics and her other meds are now being given via the IV again also. They put her back on the high flow canula and have a team of the necessary medical professionals on standby right now in case they need to reintibate her (breathing tube). They have also added valume and a muscle relaxer to the mix as she has become very aggitated as well as very tight. For some reason none of this is helping her sleep nor is it helping her breathe easier. We are stumped!

She is fighting so bravely for so long and no words could convey how proud we are of her and how much it breaks our hearts to see her in this condition. We pray to God that he just give her a break here, she deserves it. We are going to keep this short because it has been a very long and emotional evening. We just wanted to make sure everyone knew where she was at. Please continue to pray for our Maddie.

Ann,Rick and Maddie

Since the last time we posted there have been several developments;some good, and some not so good.

The not so good: Maddie's cat scan results revealed damage to her brain as a result of lack of blood and therefore oxygen during the period she was in arrest. The damage is not centralized, but rather spread throughout. So far we can not tell what the ramifications of all that means and will most likely not be able to tell untill she is completely off the meds and we can see how she has been affected. The doctors say she could get better or she could get worse;only time will tell.

The Good: The doctors just finished rounds and are hopeful that we might (and I emphasize might) be able to get her home as early as next friday. Her old feed tube is back in so the intestinal feeds are on the shelf. Her central line (IV) has been removed so all of her meds are being administered through her feed tube. They would like to get her up to 6 feeds of 150 ml over a 24 hour period before they will let her go. We do not think that is possible (it would put her at 900 ml/day), it took us 2 years to get her to 750. We are waiting for one of the doctors to return so we can express that to them. WE JUST WANT TO GET HER HOME. We have been here 48 days and if it goes much longer we will have common law marriges wtih some of the doctors here and I'm gonna have to start asking for child support !!!(still have our sense of humor).

Right now we are waiting for a brain trauma rehab doctor to come and talk to us and hopefully give us a better understanding of what areas of her brain are damaged and what those areas functions are. We have been told that nobody will be able to give us an accurate diagnosis of what limitations she may or may not have, we will just have to wait and see what she can and can't do. This is obviously very frustrating for all of us and we will have to refocus our game plan that we discussed here in earlier posts given the current set of circumstances. We are trying our best to remain positive and strong for Maddie right now as well as into the forseeable future because that's what she needs.

Your continued support and prayers are greatly needed and very much appreciated.

Ann, Rick and Maddie

Well here we go again. It's 6:30, Sunday evening and Maddie's feeds have been dropped down to 28ml/hour and is sitting at the same levels on her meds as she was when we posted on Friday.

For some reason it would appear that she just can't tolerate the feeds. We don't know if it's the rate at which they are being delivered or the fact that the feed just runs continuously and her body has been so used to rest. Remember prior to this visit she would rest 4 hours between each feed throughout the day and rest all throughout the night.

She began showing signs of discomfort on Saturday morning and progressively became worse upto and including now. She is miserable, easily aggitated and next to impossible to console. There have been some questions raised about maybe she is just sick of being in the hospital and needs to go home. As her parents we have seen Maddie mad and showing attitude and we wish that were the case here. She is in some kind of discomfort and we need to figure out what the source of that discomfort is. She actually gets worse when we hold her.There has also been the question of why not just feed her the way we were prior to the hospitalization and we have raised that question ourselves; however when a team of medical doctors including lung specialists and ICU specialists stand at your child's bedside and tell you that based on the condition she was in upon arrival that they fear if she refluxes or vomits it could enter her lungs and we could lose her, well it's quite simply a no brainer. A 1% chance of somthing of that magnitude happening is not a chance we are willing to take. We have seen her vomit just from trying to make a bowel movement.

So early this week is not looking as good as it was on Friday. Maddie will be having a cat scan in the morning to check for any kind of abnormality in her head that could have been caused from the time that she was in arrest. We are praying that is negative. After that, we're not sure there are any more tests that can be done.

Sorry for the bad news, please keep the prayers coming.

Thanks and God Bless
Ann, Rick and Maddie Moo

Can you say Roller Coaster!

Don't get too excited but the words "take her home" were just spoken amongst Maddie's plethera of doctors.

We are cautiously (and I cannot stress enough, causiously) optimistic that she could potentially come home early next week.

What needs to happen:

She is currently at 35ml/hour on her feeds. She needs to be at a minimum of 32ml/hour in order to not dehydrate. So the plan is to see if they can steadily increase her feeds and have her tolerate the increases. They don't want her riding the dehydration line. As far as the meds for withdrawal;we can administer those at home through her feed tube, provided they can ween her down to an acceptable level over the next few days (she currently has them delivered via iv).

So keep the prayers coming and your fingers crossed. She has had a pretty solid past couple of days and hopefully she continues that trend over the course of the next 2 or 3. Please keep in mind we were in a similar position at this time last Friday, not with going home but with feeling she had "made the turn" and than the bottom kind of fell out so to speak.

Nice to see her progressing and prayers being anwsered.

God Bless all of you.

Rick Ann & Maddie.

NUTRITION & FEEDS

So prior to entering the hospital Maddie had her issues with eating, however we had her maintaining her weight all though we have known we need to get more into her(she just can't tolerate more). A normal day of eating for her would be 3-250ml feeds at a rate of 200 ml/hour. She would get these feeds with a 4 hour break in between. It has taken us 2 years to get her to that kind of volume and that schedule without having her throwup, and as previously mentioned we had her maintaining her weight for about the past 6 months which in our view is major progress. 100% of her feeds have been through a feed tube that was surgically placed directly to her belly when she was just a few weeks old. She basically has a button or port next to her belly button that has a tube going into her belly. We hook a line up to that button and in go her feeds. The problem with pushing more feeds this way is the risk of her refluxing and than aspirating (fluid or vomit in the lungs) which for her could be disasterous. during this stay they have inserted a new feed tube using the same port, however this one goes too her stomach as well as her small intestine. The idea or logic here is to bypass her stomach and feed directly to the small intestine thus eliminating any chance of reflux. This is not going so well foe her. So far they have only been able to get her up to 45 ml/hour but had to stop as she was in some obvious discomfort and couldn't even sleep. They have done what seems like a million tests from x-raying every bone in her body to a GI consultation to an orthopedic consultation to try and figure the source of her discomfort but to no avail. At one point we were actually hoping she had a broken bone or somthing since that can be fixed and we would know what's wrong. The thinking is that her intestine just needs to adjust to the direct feeds and it could take some time. Today she is up to 30 ml/hour, they actually dropped her down from 33ml/hour cause she started to get fussy within minutes of upping the volume.
As far as weening her off of the methadone and atovan (anti-anxiety), they have put that on hold so they can just concentrate on feeds. Fussing from the lack of one of those would just cause confusion when trying to figure out why she's uncomfortable.
GOOD NEWS is she is doing well on the regular nasal canula and is not far off from her O2 settings at home. A very good indication that her lungs have returned to her normal baseline.

On a side note, one of Maddie's Doctors used to live next door to my Gram Lippitt on Duerstein St. His name is Peter, however he went by PJ when we used to swim in Gram's pool together. What a small world. Anyhow, he and all the other Doctors have treated Maddie and us like there own family and have been relentless in trying to figure out what the heck is troubling Maddie. Some prayers for all of them would be greatly appreciated as well.

A thousand thanks again to all for your continued thoughts and prayers. We will keep you posted.

Thank you and God Bless
Ann, Rick & MADDIE

Hello to all, unfortunately we have found ourselves in the situation where it is necessary to keep all of you posted on the day to day progress of Maddie. We are sorry if any of you have been left in the dark, however it has been difficult to keep up with the hospital and our own home let alone phone calls and text messages. We will try to keep this updated on a daily basis and are extremely appreciative of all of your thoughts and prayers.
Just to bring all up to speed: Maddie was fighting a pretty nasty head and chest cold the first week of February that wiped out her twin the previous week like no other cold we have ever seen. Maddie seemed to be holding her own as we were able to monitor her through her oxygen saturation levels in her blood and her heart rate via the monitor she is hooked up to 24/7 at home. On Saturday February 7th she took a very sudden turn for the worse and it was obvious that we had no option but to call 911. She was transported to Children's Hospital and arrived in severe respiratory distress with collapses in both lungs. At some point while trying to insert a breathing tube into her she went into cardiac and respiratory arrest but by the grace of God and the hands of so many wonderful doctors here, she was brought back quickly.
From the ER she was admitted to the Pediatric Intensive Care Unit where she remains to date. She spent 13 days on a ventilator basically in a medically induced coma so her lungs could rest. She was diagnosed with septic shock, pneumonia and RSV. In between arriving here and the present she has contracted some other bacterial infections which were caused by the various stages of her treatment.
Where she's at now: While her lungs have recovered from all the above described conditions, it seems every day there is a new obstacle that she is fighting through. She is still being weened off 2 major narcotics that were necessary during the ventilator stages so withdrawal is a daily issue. She goes back and forth between constipation and diarrhea. She has just about completely regressed from the progress we have made with her joint contractures over the past 2 years so minor aches and pains from stiffness and the lack of movement are an additional daily struggle for her.
Her prognosis: This visit in some sick twisted way may have been a blessing in disguise. It has been our goal to get her weight and body thickness to a point where surgery could be performed on her back that would increase her breathing capacity. For the past 6-8 months her lung Doctor has been discussing a breathing machine (V-PAP) we could use for her at night time to eliminate the number of breaths she takes on her own thus reducing the amount of calories she burns. Along with the machine she would need a procedure done in accordance with her current feed tube that would bypass her stomach and feed directly to her small intestine, greatly reducing her chances of aspirating while on the V-PAP at night. Introducing her to both would have required a 2-3 week hospitalization which we were reluctant to do. She has been introduced to both during this visit, but there have just been to many outside contributing factors to tell how she will handle either of them. We just need her to get her back to being Maddie before we will be able to tell. We are hopeful that once back to 100% she will tolerate both and be able to gain the necessary weight to get her to surgery.
It has been made clear to us by the Doctors that her body growing and her lungs not being able to grow in ratio are a concern so we really need her body to accept the V-PAP as well as the new feed tube as we are running out of options. So to answer the question that so many of you have been asking "what can you do, or what do we need";PRAYERS. Pray that her body accepts what they are trying to do for her. That's all we can humbly ask for.
The current focus is on her feeds. For some reason she is not tolerating them and she has the Doctors stumped. They try something different every day in attempt to rule out one thing or another. We are waiting for a GI consultation today to see what kind of input they may have. We're keeping our fingers crossed that they may add some insight to her current feeding issues.
As for the boys, they are doing good. They miss there sister however we're pretty sure they don't mind the extra wii time they are able to extract from there overly strict Grandparents and Aunts (just a joke Grandparents and Aunts, we are not judging).
On that note, how truly blessed are we to have the family that we do. They deserve so much recognition for the support they have given us. In fact, support does not even come close to descibing what they have done and sacrificed for us. We are so thankful for the help from everybody and while it is important for all of you to know and pray for what Maddie is going through, it is equally important for all of you to know and pray for what our day to day support team is going through as well. In a 24 hour period Maddie is only without family for an hour or two at most. Grandma and Grandpa get Nate off to school in the morning and hit the hospital in the afternoon (everyday). Mema is at the hospital every single night after her own work day and some days has gone from the hospital to our house or vice versa. Aunt Carrie's family has grown by at least one (Nathan) as they get him from school after spending mornings and early afternoons with Maddie (everyday). Aunt Carrie and Mema have even stayed overnight at the hospital so that we could have a couple "normal" nights as a family. Aunt Chrissy, with 9 month old twins, has been our daily lunch delivery girl at the hospital (even though I know it kills her to serve me, he he he) and is managing Ann's astronomical text message bill-Thank you. I know it's taboo to only mention a few names, and again all of you have done so much, we just feel that sacrifices of such magnitude ought not go unrecognized and they are critical support and should remain in all of our prayers so that they may remain strong and healthy throughout the duration of this saga. We need them!
I apologize for what surely sounds like a grim post, however it is reality and we just want all of you to be updated so we all know what we're praying for. Thank you again for your love,prayers and support and God's Blessing to you all.

Ann,Rick,Maddie,Nate,Zack,Luke and Louie

ENJOY THE PICTURES!!!

Well it’s only been 5 months since our last update, so we apologize for the wait; however we have a solid excuse: We are limited on time. Maddie is making tremendous progress as far as movement and stretching goes. She tracks things visually very well and has become pretty accurate with reaching out and touching what she sees. Her movement is still limited in many areas however her therapists as well as Annie and I are encouraged about her current progress and hopeful for future progress. She is still on oxygen, and several of her Doctors feel a strong possibility that her breathing problems are related to her lung structure which is twisted due to what they think could be arthogryposis (no one has officially diagnosed this, however all her symptoms would point to that) or scoliosis. Her back and chest areas are the main focal point during physical therapy: We are hoping that these areas can be corrected through PT, if not she will need surgery on her back which would be done when she is 5.

Speaking of surgery, we started to see an orthopedic specialist in Cleveland named Dr. Armstrong, who is highly regarded by every doctor we currently see. We first went and saw him a couple months back and he spent almost 2 hours with Maddie, looking at her and explaining to us what he thought and what her options are. He will be performing surgery on her feet some time in September and than on her hips 6 months after. We are extremely confident that Maddie is in good hands and will get the best possible care with Dr. Armstrong.

Despite all of this Maddie is just a beautiful little girl who smiles and just recently began to laugh in her own crooked little way. The life in her eyes is dominating, which leads us to believe she will handle whatever obstacles life throws at her for a long time. She is quite simply awesome.

While we encourage Maddie to move and touch as many things as possible, we are doing the opposite with her twin counterpart, Mr. Luke Lippitt. He is at the opposite end of the spectrum. He began to crawl just roughly a week ago and gets into absolutely everything he shouldn’t, and always has a smile on his face when doing so. He is awesome, and Annie and I both agree that we have never seen a baby who smiles as much as he does.

Nate and Zack have to be the best 2 older brothers on the market right now. They play with and comfort both Maddie and Luke daily and have been a big help for Annie and I. We are seemingly always asking them to grab this or get that or could you give me the wipes Nate, or Hey Zack could you find Luke’s binki for me. They smile and love that fact that they can contribute. When they’re not doing that they are fighting, or arguing or playing well together: It all depends on the day.

So there you have it, 5 months of review in 5 paragraphs. We will try to stay on top of the site and keep all of you informed as to Maddie’s progress and surgery. Take care, God Bless and we appreciate the continued prayers and support.

HAPPY HOLIDAYS

As you can tell Louie is thrilled that it's Christmas and once again the reindeer antlers have been pulled from storage. Kind of reminds us of the dog from The Grinch Who Stole Christmas. The smile on Luke's face is one of pure enjoyment for the fact that we were told at Maddie's lung appointment this morning that we can take her off both the monitor and the oxygen throughout the day and she will only require them at night when she is sleeping. We will have another appointment on the 27th of this month at which point we are confident that she will be off both 100%. I can not express the enjoyment of finally being able to traverse my own house with Maddie in hand. The freedom of being able to do that is priceless and we can only imagine what it means to her to be done with the same corner of the house 24/7. We just got home and she is whooped and sleeping so as soon as she wakes we will post some new pictures of her without the nasal tubes.
Once again she has reached another milestone that would not have been possible without her strength and all of your prayers, so again we thank all of you for the support and God for granting our Maddie the strength and determination to turn another corner.

Hello everyone; We know it’s been a couple of weeks since we last updated, however we had a rush of various Maddie appointments with virtually every kind of doctor imaginable so time has been a hot commodity around here.

As for Maddie’s progress, she is doing very well. She continues to gain weight slowly but surly and is currently 8 lbs 2 ½ ozs. We have had several visits with OT/PT and they are happy with her progress and continue to challenge Maddie’s range of motion through splints and stretches that Annie and I keep up with at home as well. We are waiting for an assessment to be done at the house next week to determine if Maddie qualifies for home therapy, which were confident she will. The orthopedics want to see her again in 6 weeks at which point we are hopeful they will set some kind of agenda as to correcting her hips which are dislocated, her scoliosis as well as her other contractures. They informed us at our last visit that she MIGHT require surgery in all these areas but basically it’s a wait and see time will tell situation.

On a day to day basis at home both Luke and Maddie are doing great. Luke basically runs the house and demands attention either through smiles that are irresistible or a high pitched shrieks that echo throughout the house. Maddie has found her smile as well although she is stubborn with it in that she won’t share it with the camera. They both seem to thrive when we lay them next to each other, must be a twin thing.

Hope everyone had an enjoyable Thanksgiving, take care and God Bless.

1 Week Under Our Belts!

Maddie has been home for a week now and continues to improve in all aspects. Her current weight as of yesterday is 7 lbs 11 1/2 ozs. She was 7lbs 6 ozs when she left Children's last week. According to her pediatrician she should be gaining about 1/2 oz a day so she is doing well. She does still reflux quite a bit which had us concerned about her weight so we were relieved to find that she was gaining weight. She is not bottle feeding quite as well as we had hoped she would be at this point, so for most of her feeds she receives a majority of it through the feed tube. It's taken us most of the week to get the whole feed tube down as far as knowing how high to have the syringe so that the formula trickles down at just the right speed so as not to fill her little belly to fast causing her to send it all back at us. (Just for a visual you can see her feed tube in the picture above. It's a big syringe (just under the yellow animal)connected to a long tube (running by the green pacifiers)that attaches to another tube (at her feet by the pink and white blanket) which in turn is connected to a button right on her belly where the food enters her stomach.)

Maddie's new challenges now will be pushing her limits as far as her range of motion goes with all of her joints through physical therapy. She came home with splints for her feet, legs and hands as well as a brace for her hips. Yesterday she had her first physical and occupational therapy follow-up since leaving the hospital and it went extremely well. Dominique and Nancy are Maddie's therapists in those respective areas and have been working with her since day 1 and for that we are extremely lucky. They, much like the nurses, have treated her as if she were their own and we are very optimistic that Maddie will continue to progress as she has thus far based on past progress and the fact that Nancy and Dominique are her therapists. Thank you ladies.

As for everyday life here in Orchard Park, things are about as hectic as we had imagined however aside from Maddie's extremely structured feeding schedule we are thoroughly enjoying flying by the seat of our pants.