The Parker Project

Thank you to everyone that has shown our family so much love and support. The out-pour of kind words, prayers, and donations have truly been a blessing to us on this difficult journey. Parker's "celebration of life" is this Saturday, October 27th, at 2pm. It will be held at Roselawn Funeral Home located at 1000 S. Highway 175 Seagoville, TX 75159. We welcome everyone to come share in this special day for such a special little girl. Parker's favorite color was yellow, if you insist on flowers please send white, yellow, or a combination of the two. We will also be releasing white and yellow balloons following the service. We want this to be a special celebration, so the typical somber, black formal attire is not expected, please come as you are. More information can be found at http://www.roselawn-funerals.com/obituaries/tribute.html?url=http://stei-23980.tributes.com/show/Parker-Lee-Reynolds-94631122

We are humbled by all the donations that came through since we started this blog in early September. Thanks to everyones generosity I was able to stay home from work for the last two months and be there for Parker in everyway. You all are a true blessing and may God bless you all in return.

Phillip and I have dreamt of starting a organiztion for the past year where we could help other special needs families. We have learned an abundance of information through Parker's life and we want to share that information with other families. Due to the great amount of donations through this blog we now have the opportunity to start "The Parker Project", a non-profit organization to help these famlies in a multitude of ways. All left-over donations and future donations will now go towards The Parker Project. In the coming weeks we will update the blog with an official website, but for now please use the chip-in button.

Now a little bit about The Parker Project....

Parker was a blessing to us and we want her to bless other families for many years to come. Raising a special little girl means learning special information. You learn something new every single day and sometimes these things become overwhelming. The first mission of The Parker Project is to share this wealth of information with families that have just welcomed their special baby into the world. We can do this by becoming a resource for these families on how to get started on their journey i.e. who to call to for resources, things to expect, etc. The second mission is to provide families with medical equipment. Parker's bedroom was essentially a hospital room, it contained pumps, oxygen, nursing supplies, wheelchair, special therapy equipment, etc. Many states do not have resources to acquire these expensive needs and many families do not have medical insurance. We will source these products and get them to these faimilies. The third mission is to help families just like ours. When one or both parents are unable to work, we hope to provide them some financial stability by cash donations.

We are forever indebited by the joy and knowledge that Parker brought to us and we feel it is only right that many other families will be blessed in her memory.

Love, Megan

She's at rest...

I just got a phone call from Megan. She asked me to share with you that sweet Parker has gained her wings. It is with a heavy heart that I ask you to please keep them in your prayers. Megan will give a personal update as soon as she is able. She is so thankful for everyone's support and love for Parker.
I will Update when arrangements are made.
Jamie C

The hardest thing we've ever had to do!

Parker continues to show her true colors, not backing down from a fight! She is one tough baby girl.

She is still very unstable, we don't know if she will be with us for 2 more minutes or two more days. Her right lung is completely diminished and her left lung is nearly filled with fluids now. She struggles for her every breath. She remains on 5 liters of oxygen, and today that has kept her at 93%, but most days she is in the 80's.

The hospice team suggested we have our family come in and say their goodbyes on Friday. My mind is spinning, how can all this be happening to my baby girl?!?!
This was the hardest thing we have ever had to do as a family.

She is so medicated on Ativan and Morphine, she is basically in a coma type state. ... And yet she continues to fight.

This has been the hardest thing I have ever been through. I hurt so bad I am numb. Too many emotions to comprehend or process.

Minute by minute, hour by hour I sit by her side, telling her it is ok for her to go home. As hard as it is to say that, and knowing that when she leaves I will have a Parker shaped hole in my heart that can never be filled again...I know she needs to stop suffering!
No mamma should have to watch their child suffer!

Thank you for your continued support through this heartbreak! We appreciate and need all the prayers!

Love,
Megan

Pray for comfort

Parker continues to struggle. Her little fight is still fighting, but her last few days have been rough.

Megan is handling it all with grace, she is such an amazing, strong mommy!!!
I don't know how she does it. She loves sweet baby Parker more than anything, and no one should have to say goodbye to their baby! It just isn't fair.

Please keep praying for the medications to keep Parker comfortable and for the family, that they find peace in this storm.

Also, the donate button to the right is still open. If you don't see it on your iPad or iPhone go to www.fortheloveofparker.blogspot.com on your safari browser and it should work.

All donations go directly to Parkers family to help with medical expenses and for Megan to stay home with Parker. If you are new to this story, Megan took leave from her job to be home with Parker without pay. Because of everyones generous support, she is able to be home right now when Parker needs her the most. They are forever grateful for everyone's prayers, kind words of encouragement, thoughts and donations.

Last night Megan sent me a sweet picture of Parker in her Halloween Hello Kitty and 'Ana-bow'. She looks absolutely precious!

Keep the prayers coming, they are needed! Have a blessed weekend!
Jamie C.

Bearing the unbearable

Wow! What a few days we have had. Parker has taken a turn. She has been in respiratory distress since Wednesday morning. But instead of low respirations each minute she is breathing anywhere from 46-70 breathes/minute. She has lost a lot of her coloring lately too. She's pale and blue. Her heart rate is high at the moment and her oxygen is getting worse. It was really bad yesterday but has improved some today. Her swelling and third-spacing have continued to get worse so we have stopped all her feedings in hopes it will help.
We had quite a scare last night too. We almost lost her. Everything dropped. And she was very blue. She recovered on her own but it lasted about 1 1/2 min (an eternity if you ask me).
So today phillip and I went to a few funeral homes today to finally decide on a place. I picked one that will work well for us. It's such a reality check to actually walk into a funeral home to get info for your child. There's very few words to describe it and the feelings. Unreal is all I can really come up with.
But one thing that has made this bearable for our family is the continued support and prayers from everyone. It means so much to us and we appreciate it. Thank you all! <3
Megan

Princess P

More prayers needed
So I first want to give thanks to all of our friends, family, and Parker supporters for making Sunday the 30th so special. Sept 30 is National Microcephaly Awareness Day and I asked people to wear yellow to show support for Parker and her microcephalic friends. It was amazing! I received so many pictures. I made collages of them and have included one of them. (so many pics, it took 4 collages to include them all).
And now to update on the princess herself. She is still doing poorly. And as of yesterday we are having to add another medication. Her kidneys are continuing to do worse. Her swelling is getting pretty bad (her face and hands and lower legs are becoming even more tight and shiny). They are starting her on Bumetanide, a medicine used for Congestive Heart Failure patients. This diuretic will be used along with the one she's already on (lasix). Depending on how this med works will decide our next step in decreasing her fluid intake. They are afraid that the little bit of urine that she is putting out is only water and not the toxins as well.
Her heart has started beating irregular- the actual rhythm itself. There's no rhythm anymore. It's erratic. This scares me. She's still on oxygen 24 hrs. Her temp is still all over place as well. From a low-grade fever to 88's & 89's. And we've upped her Ativan and morphine again to help keep her comfortable.
So, in short, we need more prayers. We're still living life as best we can. Moment by moment, day by day. I've even managed to get partial smiles here and there which can make any day better!
Thank you for reading, supporting, and praying for us. It means the world!
Love,
Megan

Little fighter!

Parker is such a fighter!

She is so strong and she amazes me daily.  On Friday we decreased her intake (formula and pedialyte).  We had to.  Her kidneys are starting to shut down.  Her body is unable to take the same amount of fluids as it was in the past.  Her temperature regulation has gotten pretty bad too.  She has days that her body temp never gets above 93 degrees.  It has gotten as low as 87.8 (yes you read that correctly 87.8 degrees). 

 

 

(Parker finally got her new bed...isn't is awesome!!)

 

Today she then ran a low-grade fever.  These things are bound to happen (apparently) because her brain just can't keep up like it used to. 

 

On Sunday we had an amazing day!  We were able to take family pictures!

A photographer even came out to our house.  Parker even participated by waking up just in time for pictures to be done.

 

Like I said...she amazes me! 

(Parker and her Daddy...hand in hand...with brother sleeping in the background)

 

We are so thankful to be able to capture these moments!!!!

(Parker and Mommy...look at P's green nails...so sweet)

 

Always,

Megan

 

 

September 30th is Microcephaly Awareness Day...that is this Sunday!

 

Please would you wear yellow in honor of sweet Parker and her family. 

Microcephaly is one of Parker's diagnosis...and her family would be honored if you would honor her in this way!

Feel free to take photos and tag your self for Megan on Face book!

Love,

Jamie C.

 



Pray for Peace!

Parker is still having good days and bad.  She is on Oxygen full time now.  She has become very swollen and has started a diuretic today in hopes of reducing it.  They think it might be kidney failure.  Her heart rate and respiration's have become irregular and erratic.  But we are still blessed.

 

 

Blessed for one more day!

 

Blessed to have each other.

 

And blessed for all the love and support from people like you!

 

Thank you for everything!!!!!!!

Please pray for peace!

 

Megan

Much Needed Rest!

Well, the past 48 hours has brought some much needed rest for Parker's family.

They have had some close friends stop by,

which has been fabulous, and taken time to just spend with Parker.

 

Last night Megan sent me this update for you!

 

I feel so blessed to be able to stay home with Parker.  The more snuggles I get the better...and same for her!  She still is having her moments of highs and lows.  She's very tired, but when she wakes up she's comfy (most of the time).  Her breathing is still very labored and she is requiring more oxygen.  Her output has decreased and her heart rate has dropped in the last two days, but we are hoping for the best.

 

We appreciate all the continued love, support and prayers.  God bless you all!

Love,

 

Megan

 

 

Could Sweet "P" look any more comfy!?!?!

As Megan said, wouldn't you love for someone to tuck you in like that!

 

Just Precious!

 

Love,
Jamie C.



Ain't no Mountain!

I find myself sitting here, singing that song....

Ain't no mountain high enough...
Ain't no valley low enough....
Ain't no river wide enough......
to keep me from getting to you baby!

48 hours ago, the insurmountable stress of not being able to stay home with Parker, was a heavy burden resting on Megan like a weighted blanket!

Today, because of all your generous support...she is not going to work tomorrow, but staying home with her baby girl who needs her more than anybody! 

It was like Parker knew it too!  You will never guess what Megan got to witness today!

 

Do you see it?

 

That sweet soft little grin poking through!

 

And the original financial goal was met!

All $3000 at 7:30 MST

 

What a wonderful day!

 

Sometimes amidst the sorrow, it is the little things that matter so much!

At the end of this long day, Megan goes to bed knowing she made her baby girl smile!

That is what life is all about!

 

Please continue to support and love on Megan as you feel led.

I will leave the Chip - in button open as an easy place to donate and give love offerings.

They are not asking for this, I am just doing it to support and show them we care!

They are so grateful for all the generosity and outpouring of love.

Megan could not have been home without your support!

 

Love,

Jamie C

.... but you can not find another Parker

I can hardly believe the viral out burst that has happened with this blog over night.  It has been seen by over 4600 people.  That means amongst those people, there have been prayers sent up, financial gifts given, good thoughts spread and support for sweet Parker and her family.

I am stunned.  I would ask now that people start leaving notes of encouragement for Parker, her mom, dad and brothers.  They need it!  Little love notes that they can come read!

 

In less than 24 hours $2355 has been raised for sweet Parker

 

If she could speak, I know she would say thank you!

 

 

Her family has been moved to tears by the generosity of everyone!

 

They will forever be thankful for this gift

 

Today Parker continues to keep fighting for another day.  Her breathing is becoming more and more erratic and her nursing staff is needing to give her more meds to keep her comfortable.

This just came from Megan:

 

Thank you Everyone.  I am so humbled and touched at the generosity of family, friends and strangers.  I was able to take a leave from work.  They still haven't decided whether they will hold my position or not.  But at least I'm able to be where I belong.  As a friend put it this morning.  "You can find another job, you can't find another Parker"

Parker is still hanging in there.  She's one tough chick.  Her breathing has continued to get a little worse and she's now on Ativan around the clock.  But we will continue to hope and pray for her comfort and peace.  Once again, the out pour of love and support for her and our family is amazing and melts my heart.  Thank you, Thank you, Thank you!

Love

Megan

 

Thank you for all your continued support!  It is so needed right now, and appreciated!

Jamie C.

Parker needs her mommy!

Parker was born on June 30, 2010 at 39 weeks (c-section because her head was too small).  We knew she had Microcephaly a couple of weeks before she was born.  She was also diagnosed with Lissencephaly (smooth brain) a few hours after her birth.  My world was turned upside down.  They gave us no hope, no future, and our world was crushed.  They said she may have multiple seizures, debilitating gross developmental delay, and most likely would not live long. 

We were told all of these horrific things, but we were determined to prove them all wrong.  At Parker's 2 week checkup I asked for a swallow study because she struggled so hard while feeding.  We were admitted into the hospital as soon as we were done because it was "unsafe" for her to continue eating without a tube.  An Nasal Gastric tube was placed, and I was trained on how to use it.  We were then sent home to continue care there.  A few days later Parker had her first seizure.  Not just a small one either.  A grandmal!!!  She had her first EEG two days after that and they started her on seizure meds.

A month went by and her feeding did not improve, and she failed several more swallow studies.  In August, they scheduled her for g-tube surgery.  A month after that we were back for another surgery because with the new g-tube she was having reflux.  They did a nissen fundo.  Prior to this surgery she would spit up or throw up after every feed and it would drain into her lungs.  In November 2010 we were admitted to Baylor's for 5 1/2 weeks to try and improve Parker's swallowing skills.  She did improve!

It was during this time I decided to make a career change into the health care field.  I knew it was my calling and I started school shortly there after to be come a patient care technician.  Things began to look up, and we went almost a whole year without an actual admission to the hospital.  We had plenty of scares and Dr. visits (at least one a week) and ER trips, but not actual hospitalizations. 

Then in November of 2011 we ended up in the hospital for a week.  She one day stopped tolerating her feeds.  She would scream bloody murder until you stopped anything from going into her belly.  They ran a bunch of tests and could never find anything.  But, they thought putting her under and placing a GJ tube would help.  This means her food could be administered directly into her small intestine, bypassing her stomach itself.  It worked for about two months and then in January we were admitted again for the same thing.  Again more tests and no answers.  She went back to a g-tube and we switched formula.  She's now on a very specialized diet and any little modification can upset the balance again.  Also in November of 2011, we noticed her swallowing had gotten worse than ever before.

Her lungs were collapsing sometimes and we made appointments for ENT and pulmonary, but it would take months to get in.  By the time we did get in , things had gotten much much worse.  She was choking violently on her secretions almost daily.  we tried medicine to decrease them.  Even tried Botox injections into her saliva glands and her wearing oxygen at night.  None of these things helped.  I begged doctors from all over to help her.  On April 2011 she was choking and would stop breathing at least once a day because she could not control her secretions. 

In May we saw a new ENT doctor who scoped her and found her airway to be filled with saliva at all times.  She was just gurgling past them.  For safety and comfort levels Parker had a trach placed on July 5, 2012.  She did great.  We were there for two weeks.  We were home for almost two weeks then on a Monday our life was turned upside down again!

Parker had been known to have seizures since early on, but they were always pretty controlled, maybe 5-10 a week.  This Monday in particular she had seizures like we had never seen before.  She had 26 of them.  The following day she had 64.  We called the neurologist and they upped one of her four seizure meds.  The seizures continued.  She was either sleeping or seizing.  My mommy heart broke. 

We were admitted that Thursday to try to figure out what was wrong.  They found nothing!

NO INFECTIONS
NO EXPLANATIONS

They drastically changed her seizure meds and doses and we were sent home that following Sunday evening.  Things continued to decline.  She started having apnea spells (where she would stop breathing for periods of time) while awake  for up to 20 minutes at a time.  Green bile began leaking from her bum, and she started not tolerating her feeds very well.  Based on everything multiple doctors suggested we had to choose for her to be placed on Hospice.  We were being told her brain was just too small to control her body anymore.  I though long and hard and decided that would be best.

She has been on hospice for 2 1/2 weeks now and she has progressively gotten worse. Her breathing is very erratic and irregular.  We were told to choose between hospitalizing her to be placed on a vent that will sooner or later breath completely for her, or keep her at home and comfy knowing she will continue to decline.  We chose to keep her in her loving, comfy home with us.

Ive only been in my job for 9 months.  I work on a bone marrow transplant unit at a local hospital, and I love my job.  But, because I have not been there a full year yet, I am not allowed to use my FLMA during this time when my daughter needs me the most.  Between the cost of Parker and the other two teenagers in my family, life can be very expensive requiring me to keep my job!

Love,
Megan

Now this is where we come in:

I know none of us can afford to pay for Megan to stay home.  But together we can share Parker's story and make donations to her chip in to the right to allow Megan to take some time off to spend with her daughter. 

I can only imagine, counting the minutes waiting to get off work to go be with my terminally ill daughter.  Parker needs her mommy!

Please share Parker's story, and help Parker have her mommy at home with her!

Love,
Jamie C.