Kooky is 7 (well almost)

Madelyn will be 7 on Wednesday. I'm not sure where the time has gone, but it has flown by! For the last several years around her birthday I ask her the same set of questions. You can see the previous years in my previous post. Here are this year's questions:

What is your favorite color? Black and white
what is your favorite toy? Crookfangs (it is a stuffed cat she got for Christmas that is on it's 3rd name. It was Crookshanks after Hermione's cat)
What is your favorite fruit? Strawberries and bananas
what is your favorite TV show? Girl Meets World (she's also really into Boy Meets World)
What is your favorite thing to eat for lunch? Chicken nuggets
What is your favorite games? Mine craft
What is your favorite thing to wear? Shirt and skirt and black boots
what is your favorite snack? oreos
what is your favorite animal? cats
what is your favorite song? One Small Voice (no clue where this came from. it is a song she sang in VPK as a solo. She likes anything Taylor Swift)
favorite book? AtoZ mystery series
 best friend? Paityn H; Sarah and Ella
eat for breakfast? Reese’s Puffs (she eats Grits most mornings)
thing to do outside?  Play with friends
favorite drink? Dark chocolate milk
favorite holiday? Easter- because it’s near my birthday
take to bed with with you? Crookfangs and Madyson bear
what do you want to be when you grow up?  A Vet, a soccer coach and a painter
where is your favorite place to go? Alabama where I was born
What is something Mommy always says? Start following directions
What is something Daddy always says? Say yes ma’am and yes sir
What's your favorite thing about 1st grade? That I get to learn things I haven’t known and that my teacher is a really good one
Anything else you want people to know? That I’m not really good at painting but I am good at drawing and coloring so if I’m good at that I can be good at painting too; When I become a vet, I’m going to be in the same vet shop as Sarah and Ella; I play soccer and that’s why I want to be a soccer coach. I will have a very busy life as a grown up. 

There you have it, MK in Mk's words. Other things about Madelyn this year--
-- she lost her 3rd tooth yesterday (4/12)
-- she loves to dance and takes ballet, jazz/tap, acrobatics and hip hop
-- she was tested for the gifted program at school. she passed the pretest and we are waiting for the next step
-- she has read the first 3 Harry Potter books in the last few months. She is about half way through book 4
-- she reads ALL the time and gets in trouble for reading when she is suppose to be doing other things. 
-- she likes playing with her AG dolls
-- she has perfect attendance (3 tardies in K due to weather) for her entire school career
-- she likes Legos and will build by herself in her room for quiet some time
-- she has made principal's honor roll every grading period
-- she prefers to play defense in soccer and has become a good little defender
-- she is a night owl who needs her sleep
-- she wants a cat but would settle for a dog
-- she is very opinionated about her appearance and has her own style

1st birthday!

Very expressive from an early age.

2 year old beach trip

Showing Uncle Jay how to blow out candles

3 year old portraits

showing off 3rd birthday pjs

4th birthday party

4th birthday Disney trip

Alice with 4 year old Alice

more 4th birthday fun

5th birthday sass

celebrating 5th birthday in Opp

6 year olds get breakfast in bed

and sung to in class. (the power went out during her celebration)

a princess visited her 6th birthday party!

Here's to year 7 and all the adventures that come with it! We start the adventures with a Pajamas and Pancake party on Saturday.


For those that didn't know, Madyson and Madelyn have the same initials. Madyson Klaire and Madelyn Kate. With both their names typically being shortened to Mady and Madyson already going by that nickname, early on we called Madelyn MK to avoid confusion. I have always referred to Madelyn by MK online because it is just easier. It just stuck. When she started daycare there was another Madelyn in her class (she didn't stick around long though) so I told them they could call her MK. All her friends from daycare called her MK. I'm not sure they knew her name. When she got ready to start kindergarten she told me she wanted to be called Madelyn Kate, so that's what we told her teacher. It didn't stick around when her new teacher started in October. There were a few kids from preschool in her class and they called her MK, part of the class called her Madelyn Kate and others called her Madelyn. Luckily she's a go with the flow girl and answers to it all! As she has gotten involved in more things, people have occasionally called her Mady. She answers to that too. She has mentioned in the last few months that she wants to go by Mady. I don't think she has told anyone to call her that, but she does answer to it.

MK is 2 years and 6 days younger than Mady. They never met but you wouldn't know that by talking to MK. We have always talked about Mady and answered any questions MK has about her. Almost every time we go to Alabama we go by the cemetery. MK has a bear she calls "Madyson Bear" that Aunt Stacy sent to Mady's funeral. For the last year-ish, she has slept with it almost every night. When she is sleeping away from home, Madyson Bear goes with her. Last week I had gotten Madyson's scrapbook out to look at it. MK has seen it several times but was very interested in looking at it again. We spent Thursday evening after soccer looking at it. She asked lots of questions and wanted to know more. I love being able to talk to her about her sister and how special she was.

Every year since MK was 4 (I thought I started sooner, but only found them starting at 4) I've asked her the same questions. I've asked her this year and will post them in the next blog. Here are the years past
I didn't ask questions but did a 2 year old post.
3 year old was a combined post about both girls birthdays.
 I must have started the questions at  Age 4
I missed 5 some how, so here is 5.5
I later found 5 on my phone (I need to get them onto a blog, so they are below)
and last but not least 6 years old.

Come back tomorrow for 7 year old answers. It will have lots of pictures too!


Questions asked when MK was 5. interesting to see how much they changed from 5-5.5
Here are the questions I asked her:

What is your favorite color?
Pink & purple

What is your favorite toy?
My phone and kindle

What is your favorite fruit?

What is your favorite tv show?
My little pony littlest pet shop

What is your favorite thing to eat for lunch?
Dinosaur and butterfly cut out sandwiches

What is your favorite game?
Cinderella royal ball

What is your favorite thing to wear?

Favorite snack?

Favorite animal?
Dogs and cats

Favorite song?
We are never ever ever getting back together by Taylor Swift

Favorite book?
Lucky Stars

Who is your best friend?
Gabriella and Rachel and Brenner and Nicholas and Ian

What is your favorite thing to eat for breakfast?
Coco pebbles

What is your favorite think to do outside?
Play in swings and slide

Favorite drink?
Milk and water

Favorite Holiday?

What do you like to take to bed with you at night?
Lulu, ruffy and scratty

What do you want to be when you grow up?
A prima ballerina, a pet take career and a princess

Where is your favorite place to go?
Opp, Alabama and Troy

What is something Mommy always says?
Go to sleep

What is something Daddy always says?
Love you and go to sleep

Princess Angel Butterfly,

[This is the 3rd of blog to Madyson for her 9th Birthday. Read part 1 and part 2. We blogged to keep everyone updated while Maddy was in the hospital. Thanks to our friend Matt; he set up the blog all those years ago and then was able to retrieve it last year for me. You can read that here. Warning, it is long and raw.]

I mentioned earlier that you had a EEG the end of January to determine if you were having seizures. You were started on new medication that had to be given at specific times. The night of Feb 1st you and Daddy went to bed about 9. Your crib was in our room but Daddy sometime put you in the bed with him until I came to bed. You needed your next dose of medicine about 11 pm, so I was staying up to give it to you. I was working on pages for your scrapbook. I went in to give you your meds and move you to your crib. When I went to pick you up I noticed you had a diaper blow out so I was getting ready to clean you. I noticed your lips were blue and you were cold. I woke Daddy up to help me and we realized you weren't breathing. I called 911 and Daddy started CPR. It took what seemed like FOREVER for them to get there. They quickly got you in the ambulance and transported you to the Elba Hospital. The staff there was great. They worked with you for almost an hour but couldn't help you start breathing again.

Chandler was your biggest fan

Again, you had so many people that loved you. There was a minimum of 20 people at the ER with us in the middle of the night. Once the doctor told us you had passed, Daddy and I decided we didn't want to be at our house. We went to Grandma's house to sleep. The next few days were a blur.  We planned a funeral, a Super Bowl party and celebrated our 2nd anniversary.  We stayed in Opp because it was easier and we didn't really want to be home. Beth and Lulu cleaned our house and packed up all your stuff. The put it all in your room and closed the door so we could go in there when we were ready. It was a while before we were ready. I knew I wanted to bury you in the Beulah Cemetery next to my sister Holly (she died the same day she was born in 1987). We have lots of other family members buried there too, including Grandpa.

Family Picture

We had so many people supporting us and helping us through the worst times of our lives. I'm not sure we would have gotten anything done if it wasn't for our family and friends. We really do have some of the best friends ever. I was looking through your scrapbook earlier and saw the pages we had as the guest book at the funeral. WOW is all I can say. There are 2 pages front and back of messages and signatures from people that cared about you and wanted to say good-bye.

one of my favorite pictures

After the funeral we needed to de-stress a bit and wanted to hang with some of our friends that had traveled to be there with us. We invite people back to our house for a Super Bowl party. I have no idea who played or if we even watched the game. We hung out and enjoyed company of awesome people who loved you as much as we loved you. The day after your funeral was mine and Daddy's 2nd anniversary. I have no idea how we celebrated or if we did.

The page I was working on Feb 1, 2007

Happy Birthday to our Princess Angel Butterfly!

Sweet Maddy

What to say about the next 8.5 months of your life...
It was full of lots of love! You had so many people that loved you cared about you. You helped your Daddy and I become parents even at the hardest times. You taught us what unconditional love was and were adored by so many.

All these people came to see you in the hospital

You attended your first wedding about a week after you got home. Daddy was in the wedding. You made your presences known! I was holding you and passed you over to Kristy. As I passed you, one of the leads came off you and your machine went off. The thing about the machine was that it could not be turned off. The problem had to be fixed. Luckily we got it fixed pretty quickly and no one seemed to notice. Nickie did tell us later that she could hear it in her wedding video.

At the Bateman reception

You had a lot of complications due to the brain damage. I said earlier that you didn't cry or swallow. You also didn't process what you saw and heard. We were pretty sure you could hear and see, but your brain just didn't know what to do with the information. There were a few times you would turn your head to the area of the room Daddy was in when you heard him talking. Body temperature control was another thing you couldn't do. We took your temperature regularly and helped your regulate it. A couple times it dropped down to the low 90s (98.6 is normal) and it got as high as 107. The super highs were scary. The lows we were able to get back up by putting lots of clothes on you, wrapping you in blankets and hats and sometimes a heating pad. You reacted pretty well to Tylenol/Motrin and cool baths. I have two stories where it went really high. In July we couldn't get it to come down and we ended up taking your to the ER. We ended up staying several days but the doctor couldn't figure out why the spike in temperature. Looking back, I feel like it was just the lack of your body being able to regulate. The 2nd story was a much scarier time. We were on the way to Birmingham for a check up. Your hands and feet were extremely cold but you began projectile vomiting (you generally didn't spit up because you were fed through your g-tube). We pulled over and you were burning up! We turned around and went to the closet hospital we knew where was. It happen to be Baptist South where you spent the first days of your life in the NICU. They got your temp down and arranged for you to be transported to Children's Hospital in Birmingham. Again, the doctors couldn't really find a reason for the temperature spike. You stayed a few days for them to try to figure things out. This time you were in the PICU. It was scarier because we didn't really know what was going on. I am almost certain the fever caused some additional brain damage because you regressed.
Burrito Maddy

Prior to the spike, you were pushing yourself up on your arms and supporting your head. After, you didn't. Your seizure activity also increased. You were on anti-seizure medication from birth. I don't really remember seizures being that prominent until after the September fever spike. We got you in with a pediatric neurologist and had a video EEG. They put all kinds of leads on your head and we hung out in a room forever with a camera on us. When I saw what I thought was seizure activity I hit a trigger. This was sometime in January. One of the last pictures I took of you was with crazy hair after we washed all the glue out of your hair.

You only cried 2 times in your life. When you got your 6 month shots you gave a little cry and when we got your ears pierced when you were about 8 months old you let us know you didn't like it. Don't worry, your sister cries enough for you ;) She was really a good baby too. More on her later, she'll be 7 in 7 days!

This picture was now long after you came home from the hospital. We were just hanging out at home and had a photo shoot. While you were in the hospital everyone called you Xerox because they said you looked just like me. You have a cousin that will be a year old in the next few weeks. Luke looks SO much like you!

One more post to go to finish your story. Next is the last few days of your life.

Click here to read part 3

Blog post from back in the day April/May 2006

So I just spent 45 minutes writing Maddy's birth story. Then I found this post that I had not yet published. Matt is awesome and was able to find all the blog post we did as we went through the journey of the beginning of Maddy's life. I forgot he had given me this when i started writing the other post I wrote tonight. Here is the raw version for you

This is from Wes- I think the rest are either from me or Matt (they are marked with who wrote them)
Okay... I sit here in awe of the events I will have to endure today.
Most of you know what is going on. For those who don\'t, I will catch
you up to speed. Misty and I had a little girl on April 9th at 12:25
am. She weighed 7lbs 2 oz and was 21\" long. She is beautiful. Yet, she
is not perfect inside as she is out. Regrettably, I have to inform you
all that Madyson is afflicted by a VERY rare metabolic disorder call
Nonketotic Hyperglycinemia (NKH). Basically, what that means is that
she inherited an uncommon recessive gene from both Misty, (my wife),
and myself that causes her metabolic system to inefficiently breakdown
the amino acid, glcyine. These mass quantities of glycine are building
up in her brain stem and have caused extensive neurological damage.
This week, we were faced with the worst choice to be made by anyone
ever. We had to decide whether or not to remove our little angel from a
respirator and let her go or to keep her on support until another part
of her brain took over her respiratory functions. We both felt that
since this horrible disorder would for the most part, prevent her from
having no kind of funtional life whatsoever, it was best to remove
support and let her go with God. We had decided to do so at 12:25 am
Sunday. For some very odd reason however, due to legalities and
circumstances with the doctors not being there and their requiring two
signatures from different doctors, our wishes were unable to be
fulfilled. I deeply feel that every thing has happened for a reason.
Yesterday, Madyson began breathing on her own... yet not enough to
actually oxgynate her lungs... but she is trying. We are still going
ahead as planned and removing her from the ventilator at 12:25 am
Tuesday, (Tonight). We still feel, as we are certain that she would
live a life tortured by seizures increasing with intenstity as time
passes and will essentially progress no further than a vegitative
state, that we have made the best decision. If she does however breathe
sufficiently enough on her own once the vent is removed, we will begin
treatment for this horrible affliction and go from there. What happens
after tomorrow night is strictly up to her and God. Right now, I am
sitting in a room at the Holiday Inn Express waiting on Misty to get
ready. My thoughts are so scattered and feel as if my world is about to
collapse. I just don\'t understand how or why this happened to us. I
know that we are good people. I believe that we deserve the right to
have beautiful and healthy children and am angry that we were not given
that priviledge. Part of me really feels as if we are making the right
choice, but the events of the last day or so, have really made me
question that. I do believe with all of my heart however, that it is
truly up to God to determine whether or not Maddy will breathe
independently or not after tonight. I am just scared that if indeed she
doesn\'t, that I will regret this decision for the rest of my life. As
we are ready to go off to spend the day with our little angel, I am
gunna wrap this up. But before I end, I would like to thank each and
every person who has supported us through this ordeal, everyone who has
helped take care of us and most importantly, everyone who has prayed
for us and kept us in their hearts. We love you all and there are no
other words I can describe how I feel about you all. Thank you for
sharing in our joy and misery... Thats\'s what family does... and you
are all family to me.

04.22.06|Misty|I\'m not sure what everyone knows so I will start with last Saturday
(4/8). My water broke at about 5 pm. I went the hospital and wasn\'t
dialated too far, but because my water was broke I was admitted. They
started pictocin at some point (i had not idea of time by this point).
and my contractions became more regular. sometime between 11 and 12 I
moved and the fetal heart monitor fell off and they lost Madyson\'s
heart rate. When they were trying to find it agian they could not
because they couldn\'t tell if it was mine or hers because it had
dropped. They then put an internal heart monitor on and called for an
epidural. the doctor has also called the OR team to do a C section
because Madyson\'t heart rate had dropped. as they were getting ready to
move me to the operating room the doctor checked me one more time and
Madyson was ready to be here, there was not time for a c-section. she
was born at 1225 Sunday morning (on her due date). she was not
breathing when she was born but was breathing again very soon. due to
the complications they sent her to the NICU at Baptist South in
Montgomery. she appeared to be doing okay until sunday night/monday
moring at about 3 am when she quit breathing. she was put on a
resporator at that time. the doctors were really puzzled as to why she
was declining. after several test and finding out a cousin\'s child had
a rare genetic disorder she was tested for NON-KETOTIC HYPERGLYCINEMA
(NKH). (there is very little known about NKH and it is a terminal
disorder that severly affects the brain. Our bodies produce an amino
acid called Glycine. Our bodies break down the glycine as it is
produced. In Madyson\'s case, her body produces the glycine faster than
her brain is able to break it down, causing the glycine to build up on
her brain stem. The glycine build up causes severe brain impairment and
seizure activity.)
We were told on Friday that it is definitely NKH. Her levels were
really high. the blood to spinal fluid ration was 3.3 (less than 2 is
normal) and her glycine levels were over 100 (under 9 is normal). On
Saturday she appeared to be trying to breathe somewhat on her own very
sparadicly. we were already trying to decide whether or not to leave
her on the resporator or not. we finally made the decision to take her
off the resporator and see if she breathed on her own. if she did then
that was God\'s way of telling us she was going to be strong enough to
go home iwth us, if she didn\'t we were ready for her to go be with him.
we wanted it done at 1225 am on Saturday night/Sunday night because she
would have been a week old. well it turned out that there was only one
doctor there and the law requires 2 physcians signatures to remove a
resporator. we felt that this was God telling us it was not time for
her to be removed yet. This moring when we got to the hospital the
nurse told us that Mady had been breathing on her own in addition to
the resporator since about 9 am. Her breaths per minute were in the
good range, but not deep enough to be taking in oxygen. As the
neurologist that has been seeing her will be back tomorrow as well as
the peditrician, we plan to have the reporator removed tomorrow
night/Tuesday morning at 1225. we will then see what she does and go
from there.

04.22.06|Matt|Wednesday, April 19, 2006

I talked to Wes today at about noon. He said that Madyson\'s situation
had improved and that they were going to attempt to remove
her from the ventilator. Also, the results from the last tests ran on
Madyson came back showing negative for her complications
being a result of NKH. It is still unclear exacly what has cause all of
these problems for baby Madyson but the doctors\' testing
and monitoring to determine the root of her complications are still

Monday, April 17, 2006

I talked to Wes at about 6:00pm.  Misty was in with Madyson and Wes was talking to friends and family about the latest info. 

Madyson resumed her breathing at 9am this morning however, her
breathes are not adequate in supplying her with the necessary oxygen.
As a result of some unexpected results in the last test ran in attempt
to determine the root of baby Madyson�s health issues and problems
Misty and Wes have decided to postpone removing Madyson from'the
respirator until further test can be performed.

04.22.06|Misty|Since the last email
We ended up not taking her off the vent Monday night/Tuesday morning.
The spinal fluid sample that was sent to the metabolic specialist had
blood in it and she could not give a true diagnosis. She requested
another sample, so we left her on the vent until they could get the
sample and give us the results. We got the results on Tuesday that she
does NOT have NKH. The doctors are not sure what is wrong with her.
They are leaning towards HYPOXIC ISCHEMIA ENCEPHALOPATHY (HIE). We are
not exactly sure what this is, but it is caused by an injury to the
brain. In Madysons case it would be the lack of oxygen to her brain
that happened at some point just prior to birth or just after birthbest
the doctors can tell.
On Tuesday when I was holding her she opened her eyes (the only other
time was on the day she got to the NICU). This was the first time I got
to see her do this Wesley saw her that first day while I was still in
Opp. It was really exciting for us. She opened them several times and
closed them back (more like a wink). On Wednesday she opened them
through out the day and would keep them open for several minutes at a
time. Today she again opened them through out the day, but did not keep
them open as long.
They took her off the vent yesterday and she is doing wonderfully
breathing on her own. Her breaths per minute are in the normal range
(30-60). The amount of oxygen she is intaking was a bit low last night
and they had to put her on oxygen, but it is at room air (this is what
we breath). They left it in her nose to help remind her to breathe. The
doctor also reported that she pulled away some when he was doing the
spinal tap. She has been a bit more reactive the last few days. They
also started her on formula today at about 3. When they checked to see
if she had digested it before feeding her again, she had digested all
that they gave her. The nurses believe that if she does well throughout
the night, the doctor will most likely increase the amount she gets.
She had a MRI this afternoon. We will meet with the neurologist (Dr.
Sanchez) and the pediatrician (Dr. Wallin) tomorrow to discuss the
results of the MRI as well as the plan for Madyson. We remain hopeful
that she will fully recover.
04.22.06|Misty| here\'s a short update...

not much change from yesterday. we did get results from the MRI. The
neurologist that normally reads the pediatric MRI\'s is out of town
until the 27th so another neurologist read it. Her brain appeared to be
premature...we are not sure what all this means, but possibly that it
could develop more and she could make a complete recovery...we are bery
hopeful even tough the doctors are not. they still report that her long
term prognosis is poor. she will have another EEG on Monday to see if
her brain activity has improved. They started feeding her yesterday. it
is through a tube that goes directly to her stomach. She is not
completely digesting the formula between feedings so they have
increased the time between feedings from 3 hours to 6 hours to give her
more time to digest the formual as she is just learning to work her
digestive system. digesting food and then taking food from a bottle is
the next step in getting better and ready to go home. this make take a
few weeks or longer.

04.22.06|Misty|4/22 11:30 pm

Only an hour til Madyson is 2 weeks old!! She continues to suprise us everyday.  They took the oxygen off today because she continued to keep her blood-oxygern level up near 100 today.  She has digested her food and had none left when the nurse checked before feeding her at 3 and 9.  She was also moved to an isolete from the open bed.  if you are like us you would think this was a step backwards, but the nurses assured us this was less'intensive.  Before moving her to the isolete they tried turning off her bed to see if she could maintain her body tempature on her own, but she got a little cold.  Hopefully she will soon be able to keep herself warm and be moved to a crib.  I guess that is all for today....oh yea they put her in clothes! She is adorable (as always) in her little pink outfit.



Not much to report for the last few days. Madyson is doing about the same.  For the last few days her tempature has been going from low to high and back to low again. I think it was the nurse we have had the last two days.  She has been my least favorite!  She is digesting her food more regularly now.  We have not talked to a doctor yet about her EEG, but Beth reports that there was a message on our answering machine at home from Dr. Wallin (peditrician) that said her EEG showed some improvement... we hope to be there when he makes rounds tomorrow to talk to him.  We will post more later


Again, not much to report... she is about the same.  We had Laura as our nurse today (she\'s one of our favortes!)  I at home for the first time since the 9th.  Lauren had majorette tryouts and I came to them (she made the line and is also head majorette..yea for her!).  It will be good to sleep in my own bed for a night.  I will be heading back to Montgomery in the morning.  Wesley got to bathe her tonight (we both did the other night but this was the first time he got to with out me)

Be sure to read Wesley\'s blog from yesterday.
This morning I received a call from the doctor before I got to the hospital.  Madyson\'s lab work was irregular.  Her white blood cell count was elevated.  Dr. Wallin ordered antibotics and some other test to try to determine the casue of the elevation.  He also gave her some blood.  She again had not digested all of the food from the 6 am feeding. Dr. Wallin also reported that her stomach was soft
9which is good) but she had little bowel sounds when he listened to her tummy.  He has stopped her formula for now to try to determine if the infection is causing her not to digest.  We will continue to pray that God will see her get better and we will one day be able to take her home.


Just got home from the hospital.  Madyson is about the same. She was moving around and had her eyes open for the majority of my visit tonight.  She started getting formual again at 3 and had digested everything both times they checked.  She is only getting 3cc (5cc=1 teaspoon) but they will up it every 3rd feeding if she continues to digest.  We continue to pray that God will allow her to get better so that we can bring her home.  She is still getting antibiotics and will for the next week, just to make sure the infection is gone.  her white blood cells are back to normal levels.  We continue to take it one day at a time.

On a positive note, we have met several other families whose babies have been admitted to the NICU in the last week or so.  One of these babies got to go home today.  The other will most likely be going home in 5-7 days.  As you pray for Madyson, please also pray for Eli to continuing getting well enough so that he can go home.


Madyson was started back on her formual on Thursday afternoon.  She is digesting it so far.  Last night when I left the hospital she was up to 12cc...still not much, but it is the most she has gotten.  We will continue to pray that she is able to digest the formula.  Her tempature has still been somewhat up and down.  It has not been as crazy in the last few days, so I hope that she is beginning to regulate it on her own.  Her lab work is g'tting better.  They changed her antibotic yesterday to one that the bacteria reacts better to.
She has decided that she likes to lay on her face..yes I said face.  Her nurse will lay her on her stomach with her face to the side.  Madyson keeps turning her head so that she is laying on her face.  I do not know why she keeps doing this, but her stats are remaining high when she does this, so I guess she can still breathe.  She also picked her head up and moved it when I was holding her.
We continue to see little improvements each day.

Eli is also doing better.  he is off all machines and has started getting food.  The doctor told his parents that they may get to go home in 5-7 days.  Please keep them in your prayers too.



Not much to report.  Madyson is doing about the same.  She has an infection still and is still getting antibotics.  When I asked the nurse what kind of infection she said it was bacteria with a name about this long (she held her hands out about shoulder width).  She is up to 28 cc of formula and appears to be digesting it without any problems.
The nurse also mentioned looking for a crib for her...she is outgrowing the isolete that she is in.


So today when the doctor made his rounds, he discussed sending Madyson to Children\'s for a g-tube (feeding tube in her stomach).  I figured a few days at minimum before we go, but he called and they had a bed for her today.  The ambulance from Children\'s left with her at about 4:30.  I talked to the nurse at Children\'s around 6:30, Madyson was there and doing fine.  I asked about when they would do the surgery.  The nurse said that they surgery people would most likely come around to see her tomorrow and decide then when to do it.  Wesley and I are headed up there first thing in the morning and will more than likely have Madyson with us when we return home.  We are not sure when this will be, but as soon as we know we will get the word out.


Okay so I was a little hasty saying that we would bring Madyson home with us the next time we came home.  We were really not sure when they would do the surgery, but I guess I was hoping it would be within the next day or so... When we got there yesterday and talked to the doctor we were better able to understand what was going on.  Because Maddy\'s surgery is not an emergency, she has to be scheduled.  The surgergeons are suppose to let us know when they have her scheduled.  The doctor said he felt like it will be about a week or so.  We will then be about another week learning how to care for the tube and how to feed her iwth it.  With all that said, we will hopefully be home in about 2-2.5 weeks.


We just got home from Birmingham. Madyson\'s sugery is scheduled for Wednesday, we won\'t know what time until late tomorrow or first thing Wednesday.  She is still having trouble keeping her tempature regulated.  It is generally too low now where it was too high in Montgomery.  The NICU is a bit on the cool side, so we are hoping this may be the reason.  Wesley and I also asked about trying her with a bottle. The nurse did this today (actually she has tried 3 different times).  She got about 5cc down, but the nurse feels that is more her moving the bottle than Madyson actually sucking on the nipple.  We will keep working with her once we get her home.  Hopefully as with everything, she will eventually get this too.  I think she is just going to do EVERYTHING in her own time.
Wesley is working tomorrow and then we are headed back to Birmingham.  We are hoping to be home by the end of the weekend with Madyson, if not by the first of the next week.

Let us know you are reading these updates by emailing o'e of us...
Misty: twirler1979@hotmail.com
Wesley: liquid573@hotmail.com

05.17.06|Misty|Okay I will try his again..(I already typed this once and it didnt\' show up...)
We have had a very long day!  We were originally told that Madyson was the first on the surgery schedule, which meant pre-op at about 7.  We get to the hospital and find out she is not first, but an add on (work in).  She eventually went down for sugery at about 2 (yes that meant waiting ALL day assuming she could go for surgery at any time).  The sugery took about an hour and she did fine.  She was then in recovery for about 1.5 hours. Wesley and I visited with her for a short while and then left to let her rest.  We are not sure how long she will be her..but we have been told anything from 4 days to a week,   So I guess we will be home when we get there! Her acutal tube looks kinda strange.  It can be covered by her clothes, so most people won't even know she has it.  Wesley did take pictures of it, but we will have to get them to Matt to get posted..we will work on that.  Again, Thanks to everyone for the prayers, please continue to keep her in your prayers.  On another note, we are taking volunteers to feed/watch our dogs this weekend.  Our normal dog sitter (Beth) thinks she needs to have fun for her birthday and go out of town....  how dare her..j/k.. but seriously if you can help out let us know..PLEASE!


So they moved Madyson to a sorta room. It is a room with 3 other babies in it. It is alot quiter and less intense than the NICU.  She was a little cold most of the day, but other than that is doing good.  The plan is to have her up to full feeds (about 2 ounces) by Sunday.  Wesley and I are going to stay with her starting Sunday night.  We will learn how to feed her through her tube and how to clean the tube area.  The tenative plan is to come home on Tuesday.  This could change and is only tenative...depending on several different factors, including Madyson and how well she does or does not do with the feeding (she is doing great so far!)

Thanks to everyone for all the thoughts and prayers. I truely believe that is a major reason Madyson is doing so good.  One of the others is God giving the doctors and nurses the knowledge they need to get her better.


Dear Maddy,

You should be 9 years old on Thursday. WOW! Where has time gone? So much has happened in the last 9 years. I often wonder what life would be like with you still here with us? Would you have learned to talk and communicate with us? What would school be like for you? Who would your friends be? Would you like to read as much as MK? Would you like Tampa?

Because it has been 9 years since you were born, we know so many more people now than we did then. They don't all know your story. I tell people all the time all about you. Even MK talks about you pretty often. She has said on several occasions that it isn't fair that she didn't get to know you. I know I blogged your story but it's on a site that isn't accessible any more, so I'm going to tell it again!

I had a very normal pregnancy (at least as far as I know, it was my first after all). I felt you move, you always had good reports from the doctor. As you due date approached, I felt good and did everything as normal as always. Uncle David had taken Grandma on a cruise and the rest of the family was re-doing her kitchen. April 8 (a Saturday), we were all there working on the project. We had ordered pizza for lunch. I ate LOTS of thin crust. I was outside with Aunt Pam and Ginger spray painting the cabinets. I had to use the bathroom and went inside and did what I needed to do. By time I got back to the carport, my pants were wet (I just peed... remember?). I told Pam and went back to the bathroom. She went and found Gaga (She wasn't Gaga then, Lulu wanted her to be GrannyMomma back then. Thankfully MK changed that). We realized my water had broke. I called Daddy because he was at home in Elba. Aunt Cindy and Gaga took me to the hospital. We got all set up in a room and the nurse hooked me up to my IVs and all. Things were chucking along. This all started around 5pm. Later that evening around 1030 or 11 I moved wrong and the monitor they had attached to me to monitor you fell off. When the nurse tried to put it back on, she couldn't find your heart beat. Things get a little blurry around this time for me. I was dilated about 4cm and they decided I needed to have a C-section since they were having trouble finding your heart beat. It was the middle of the night at this point and they called the operating team in (we were in a small town hospital and they weren't there around the clock). Before everyone got there and we were able to get ready for the operation, you decided you were doing things your way and made your entrance into the world at 1225 am on your due date. You weren't breathing but Dr. Bang quickly helped you get started with that. Dr. Bang wanted to send you to the local NICU for observation. Remember I said we were in a small town hospital? They didn't have a NICU. They made arrangements for you to be taken to Baptist South in Montgomery. Big Poppa drove Daddy to Montgomery so they could be there with you. I couldn't leave the hospital yet. I got some sleep (it had been a long day/night). My doctor came around later in the day and said I could leave. Gaga helped me get my stuff together and took me to the NICU. There were several of us attempting to sleep in the lobby when the nurses called to tell us you had quit breathing and that you were put on a ventilator to help you breath. The doctors were not sure what exactly had happened and why you were not breathing. You were also having trouble controlling your body temperature and you were pretty lethargic/non responsive. There were lots and lots of people praying for you! Our friend Matt started a website so that people could be kept updated (way before it was the cool thing to do).

Great Grammie told/reminded us about two of your cousins, Olivia and Hunter. Hunter was only about 20 days old when he got his wings. He was diagnosed with Non Ketotic Hyperglycinemia (NKH). NKH is a rare genetic disorder that affects 1 child in every 60,000 born. Children with this condition have a problem breaking down the amino acid glycine. This is caused by a defect in the genetic code for the machinery that is responsible for the glycine breakdown (called glycine cleavage enzyme). Olivia is living with NKH because her parents and doctors knew what to look for and were able to get her on medication right away. Everything we read about it, it appeared you could very likely have this. We knew I the gene was in my family as Olivia and Hunter's dad is my 1st cousin. We talked with the doctors and they too were leaning toward this. We agreed to test that would determine if you had NKH or not. The test required a spinal tap and lab testing. It seemed like forever to get the results (I think it was just a day). The test came back positive for NKH. We were devastated and didn't know what we were going to do. We talked to doctors and family members and prayed. You were still on a ventilator. We decided that it was not fair to you to keep you on a ventilator. We talked to doctors and agreed we would take you off the ventilator at 1225 am on April 16th (exactly one week after you were born). Well, there was some miscommunication and we did not have the 2 doctors there in the middle of the night to sign the paperwork. The next day we were told that the blood work that was used to determine the NKH diagnosis was contaminated and they needed to do it again to determine if indeed you did have NKH. While we were waiting for this to happen, you began to breathe on your own and were taken off the vent! 9 long days of you being on the vent was finally over. The new blood test results came back and it was negative for NKH. We were back to not knowing what was wrong. You were still pretty non-responsive, could not maintain your body temperature and were not swallowing, but you were breathing!!

You were keeping the doctors puzzled. After a while (the time all runs together) it was decided you needed a g-tube for feedings. The hospital you were in was unable to do this and you were transferred to Children's Hospital in Birmingham. You were here about 2 weeks. You got your g-tube and Daddy and I learned how to take care of it and feed you with it. We finally took you home on May 23! You were on an apnea machine that monitored your breathing and had your g-tube. You didn't cry (literally you didn't cry). We still did not know exactly what was wrong. you were diagnosed with some long fancy thing that meant "brain damage due to lack of oxygen".  We didn't know what all this would mean for you or us, but we were up for it!

You only lived right at 10 months, but had a full full life! I'll come back and tell you more about it later this week.

Click here to read part 2