Tuesday, November 5, 2013

Count YOUR blessings.

After getting a routine check up at the doc yesterday and waking up early for lab work and my first mammogram ever today - I feel ALIVE!  

The weather has been GREAT. All of my people are healthy. Life slowed down enough for me to take care of some overdue things on the "to do" list. And Christmas music snuck in to my house yesterday on the satellite radio. :) You know, I could easily get bogged down in the fact that Parson isn't the least bit interested in eating and still deSating at night -or that Darby is struggling with spelling and reading --but none of that matters - we are ALIVE! 

Lemme tell ya friends, there is nothing like a major healthcare crisis to put things in perspective. It gets me every time when I start to count my blessings.  Whew.  Overwhelmed. TODAY is a huge blessing and just being alive is a huge blessing. I have got air coming through my nose. My heart is beating. That is HUGE!  Are you with me? 

I watched three great internet videos recently that reminded me about perspective. One is of a mother listening to her daughters heartbeat after they chose to donate her organs after a tragic accident. She heard her daughters heart beating providing new life for another woman. Whew -that was something. The other piece was about UT football player Case McCoy overcoming a childhood filled with medical issues to become a big success on the football field. (I love a good sports story - especially the ones about overcomers.) Then there was the one of a lady about to undergo a double mastectomy - but she first invited her surgical team to join her in a dance party in the operating room. She rocked that dance party and surgery. THAT is GOOD stuff. Those people are ALIVE!  

When I count my blessings,  I become completely overwhelmed.  You oughta give it a try. Here is a little secret - count YOUR blessings, not your neighbors. When you worry about others and try to count their blessings - you get all tangled up in things that don't matter and you will come up feeling empty. Don't focus on the things you don't have or things you wish you had - Count YOUR blessings. When you start to focus on what IS and what you DO have, you realize that you are ALIVE. God blessed YOU. Your heart is beating. You have purpose. You are ALIVE. 

It is all about perspective. You can worry that you HAVE to take "all those medicines" or be thankful that you GET to take "all those medicines" -- Taking the meds means that you are still ALIVE. You can worry that you HAVE to clean up the living room AGAIN because your family made a big mess or be thankful that you have a family to clean up afterSo I guess I gotta be thankful for that pink lizard that came out of the last load of laundry.  Same thing with dirty dishes, bills to pay and homework.

Deuteronomy 28:1-6
1 "And if you faithfully obey the voice of the LORD your God, being careful to do all his commandments that I command you today, the LORD your God will set you high above all the nations of the earth.
2 And all these blessings shall come upon you and overtake you, if you obey the voice of the LORD your God.
3 Blessed shall you be in the city, and blessed shall you be in the field.
4 Blessed shall be the fruit of your womb and the fruit of your ground and the fruit of your cattle, the increase of your herds and the young of your flock.
5 Blessed shall be your basket and your kneading bowl.
6 Blessed shall you be when you come in, and blessed shall you be when you go out.

"Count your many blessings name them one by one. Count your many blessings see what God hath done."  ........  Your people. Your child's giggles. Your salvation. Your friends that listen.........

The dirty dishes, laundry and homework mean that you are ALIVE!!!!!!!  There is NO doubt, He has blessed you and your basket is overflowing. Let HIS blessings overtake you. 

Tuesday, October 8, 2013

Parson Update - 4 months out

Parson update...

Four months post transplant and this little rascal is doing GREAT! Seems like she really turned a corner this past weekend. She is starting to bend her legs backward like she wants to crawl. She is reaching for EVERYTHING in sight and really trying to move from her belly front/back a great deal. I really feel like she will be crawling soon.  No doubt, this baby was born to boogie. 

She goes for physical therapy twice a week with Dr. Cary Malone for an hour each visit. We are scheduled early at 6:45 am so we can avoid as many germs as possible.  She has certainly come a VERY long way from the kiddo who could not even hold up her head after transplant. Now she wants to move!  She also goes to speech/feeding therapy once a week for an hour. She is making great improvements in her oral skills, but we monitor her nutrition carefully so it is primarily achieved by pediasure via GTube - 5 feedings a day. She puts food in her mouth but still isn't crazy about swallowing much. She does like the baby food "puff" cereal and has just begun putting them in her mouth all by herself like a big girl. She has a mouth full of teeth and she recently made a BIG step as she now puts her hands & toys in her mouth all the time.   

She gave me a bit of a scare last Friday by running a fever and acting sick for the first time since transplant. She kept retching like she wanted to vomit but she cannot because of her Fundoplication surgery. We rushed to the doctor and she was almost back to normal before we got there. :) I probably over reacted, but her lethargy and fever gave me quite a scare. :) She is completely fine now. 

Each morning she takes 11 medicines at 9am. Each night she takes 6 Meds at 9pm. (She has a few other Meds she takes as needed.) The meds are given thru her GTube in her belly.  I monitor her oxygen saturations with a pulse oximeter on her toe/foot. I also take her blood pressure and temperature several times a day.  

Tomorrow we will head to Lufkin to see our friends at Dr. Fidone's office so she can get her first Synagis injection of the season. This is an antibody injection that provides extra protection during the RSV/cold/flu season.  She will get the shots once a month through the month of March. 

Parson loves to be entertained by her big sister Darby. She likes making funny faces and has begun to laugh out laugh more often. She loves playing with matchbox cars.  She likes listening/dancing to The Commodores on the record player.  She loves riding outside in the "green machine".  She is saying "mama" and working on "dada" and "bye bye".  She loves to play and laugh on the bed with her Daddy.  She sleeps all through the night, but she doesn't like naps during the day.

We will head back to Texas Children's for a clinic check up with Dr. Mallory, lung transplant physician/Pulmonologist,  on October 28th.  

Thanks for keeping track of Parson's journey. We are so very thankful to be able to give such a great report.  

Pancakes for supper. 

Hands in the mouth. 

Riding in the "Green Machine" 

Best Buds ( mmmm - this scooter handle tastes yummy. ) 

Two thumbs up...

I started this whole blog thing sometime ago as a personal journal of sorts.  I have most often written it on my iPhone - with just two thumbs while doing something else (usually holding Parson, chasing Darby, cooking supper, washing clothes, or watching baseball). 

Since being home from the hospital, I have tried to swap over to the iPad or laptop to make things quicker or easier - but it just doesn't feel right. I have sat down and started a blog on the other device, but ultimately it is right back to the iPhone. I guess I just gotta admit it - it is something about the thumbs. You know that is what separates us from the other mammals huh?  We have 2 opposable thumbs and they don't. Na nana boo boo!  (So despite what Disney wants you to believe - you aren't gonna see any dogs running around with a blog -- for goodness sakes they don't have thumbs!) 

Anyhow, thinking about two thumbs this morning led me to thinking about how amazing our physical bodies are. Certainly one of God's most amazing creations. Crazy to think about the bones, the tendons, the muscles, the brain and how they all work together.  Of course I could not help but think about how amazing it is that Parson is able to breathe with someone else's donor lungs. WOW - Just absolutely blows me away.  It is also amazing that God made our bodies to heal themselves. Darby had a bike wreck over the weekend and is sporting a skinned up knee & elbow. But those boo boos are already well on their way to being healed before she is even ready to get back on her bike. 

I gotta admit, Plan B did a number on me this past 15 months. I was bumped & bruised, but I kinda feel like I am healing a little bit each day . Every day I continue to be amazed with the reminders of God's faithfullness that He sends my way. Whether it is a doctor or nurse calling to check on Parson. Or a person in town sporting their Parson Blue shirt. Or a anonymous card in the mail with money. Or an encouraging note or text from a friend. Or a petunia sprouting up thru a crack in the concrete in October.  God continues to show His faithfulness to me over and over again. Even though I get weary and tired in my daily struggle - He is faithful. Always. 

Whatever you do in word of deed, do it all in the name of The Lord Jesus, giving thanks to God the Father through him. - Colossians 3:17

I can't help but think of those that have carried me through some of the toughest days. You are all members of a great big body. Some people are arms, some are ears and some are His feet.  No matter the function or the job - you have done it for HIS glory. Trust me, I know you have bad days too. I know you get weary. I know you are rowing your boat as fast as you can. I know you struggle as parents and grandparents. I know you have sleepless nights and I know you stay up late worrying- but yet, you have done so much for my family and continue to lift us up. 

So we, though many, are one body in Christ, and individually members of one another. Having gifts that differ according to the grace given to us, let us use them... Romans 12:5-6. (There is that grace again, AMAZING grace. Even though we don't deserve it, even though we might take a day off, HE doesn't.) We all get the benefit of being members of one big 'ole body. 

I am so glad you are doing your part. Whether you are a "doer", a "listener", a "giver" or a "prayer" - Keep being faithful.  Keep sharing God's grace. Somebody like me needs YOU today.  Get out there and do something good this weekend. Give somebody a smile. Share a hug. Make some cupcakes. Send somebody a two-thumbed text and tell 'em you love 'em. Your day is coming and the body of Christ will be there for you - even if it is just one thumb at a time. 

Thursday, September 26, 2013

Rock on...

10-2 is a very significant day for me. In my former life as a cycling enthusiast, I celebrated this day as the day Lance Armstrong was diagnosed and began his crusade to conquer cancer.  Ugh, Lance - it just seems so insignificant now. 

One year ago today I was thrust into a new significance for the date 10-2. I awoke to my cell phone ringing. It was the PICU nurse and she needed consent to give Parson platelets. She also said the surgery fellow was at the bedside to get consent to take Parson in for a lung biopsy later in the morning. I snatched on my clothes and rushed back to parson. On 10-2, we received the diagnosis that would ROCK our world. We learned that Parson had a genetic mutation (Filamin A deficiency) confirmed by a brain MRI that showed she had Periventricular Nodular Heterotopia. "I'm sorry, Can you repeat that? Better yet, can you write that down for us?"  I remember it just like it was yesterday. Then they wheeled her out to surgery. 

My mind has never spun out of control faster and my thumbs have never Googled faster.  We waited & searched. Searched & waited. Nothing.  There WAS nothing. It was rare. Parson was only the fifth little girl diagnosed at Texas Children's Hospital.  As Par returned from surgery, with more questions than answers, we began our 10-2 crusade. 

Lemme tell you friends. Nothing can absolutely ROCK your world like a major healthcare crisis. Everything changes. You think different. Your relationships are different. You pray different. You are never the same. 

Thank the good Lord I am not the same. The "10-2's" and "bruises" bring us closer to one another. Like the song says... They give us a common spirit. They break the vow that separates us. They make for better conversation.  They remind us that we are not alone in how we've been. We learn how it feels to grieve what "could have been". We learn how it feels to hurt deeper than we have ever hurt before. We learn how it feels to leave everything at that feet of Jesus. 

Whew. I could write on & on about this experience, but as I sit here thinking back over the last year (with my eyes leaking) I can say with confidence...

Sometimes you gotta walk the ROCKS to see the mountain view.  

"He alone is my ROCK and my salvation, my fortress where I cannot be shaken." - Psalm 62:6. On Christ the solid rock I stand, all other ground in sinking sand. Looking back, I can see him leading with love through everything. He loves us way too much to let us be less than what we were destined to become. 

All because of a savior  All because of a donor. All because of a doctor. All because of a nurse. All because of people like YOU - 10-2 gives me hope to ROCK ON!!! 

Wednesday, September 18, 2013

Tis the Season

We ran to Lufkin yesterday to get flu shots and I did some thinkin' on the way home. Well really, the love bugs got me thinking. 

I really hate love bugs. I hate the smell. I hate how they linger & tickle you with no regards for your personal space. I hate the mess they leave on your car. Just no real redeeming quality of those bugs if you ask me. Did I mention that I hate the smell? Except, today they reminded me that in a small way, it signals that the seasons are about to change. Ahhhh -  Fall is coming soon. 

There is a dear, sweet lady in my church that refers to the seasons a lot. You know-- the seasons of life. Mrs. Winnie is great in her wisdom of scripture and life in general. Many years ago she encouraged me by talking about the "seasons of life" and I have gone back to it so many times since. 

Honestly, in thinking back over the past year, there are many many days I would love to forget. It was a tough one. Dare I say, the toughest one yet. But I keep reminding myself that this is only for a season. If we are honest with ourselves, we each have a preference of "sweatshirts & blue jeans" or "flip flops & tank tops". (Here in deep east Texas we only get to experience two seasons - sweatshirt season and flip flop season.)  Some of us are summer people and some of us are winter/fall folks. But if we really admit it- most of us are just glad to finally get a change every now and then. 

Those pesky love bugs had me all misty eyed looking back over the last year. 

The one season that scares the heck outta me is flu season.  I am completely consumed in my new job as the "keeper" of an immunocompromised transplant patient. I am living in a constant fear of "what if".  I go to bed  thinking about germs and I wake up in the night multiple times thinking about the flu. That really isn't like me. I am a "live & let live" kinda gal. You know, que sera. But lately I have been paralyzed by the fear of a sniffle, a cough, a fever or the flu. Ugh. 

One thing I have realized about being home is I quickly fell back into the same old bad habit of my controlling nature. Ordering every move, every decision, every step. How quickly I forgot that surrendering my control placed me in a much better place. A peaceful easy feeling.  He made much better decisions for me. He knows that He created me to not understand and plan for the future. He knows I am not capable of figuring out this thing called life. He even knows I am a hopeless control freak. For goodness sakes, He knows I worry about flu season. 

That's why he gave me love bugs.
That is why He have me seasons. 
That's why he gave me Ecclesiastes 3.

There is a time for everything and a season for every activity under the heavens:

    a time to be born and a time to die,
    a time to plant and a time to uproot,
    a time to kill and a time to heal,
    a time to tear down and a time to build,
    a time to weep and a time to laugh,
    a time to mourn and a time to dance,
    a time to scatter stones and a time to gather them,
    a time to embrace and a time to refrain from embracing,
    a time to search and a time to give up,
    a time to keep and a time to throw away,
    a time to tear and a time to mend,
    a time to be silent and a time to speak,
    a time to love and a time to hate,
    a time for war and a time for peace.

I especially like the "time to search & time to give up" part in verse 6. 
OK, I hear ya. You are coming thru loud and clear. That sick feeling in my stomach is my own doing. I can't control the flu and I cannot add a single minute to this life by worrying. 

1 Peter 5:7 reminds me that God cares for me. He wants to carry my burdens and worries. 

Boy, am I hard headed. It hit me square between the eyes as I sang an old hymn to Parson last night at bedtime... "Oh, what peace we often forfeit, oh what needless pain we bear- All because we do not carry everything to God in prayer."

(Insert Clue phone ringing here...  it's for me.) 


Fall is coming. 
There is a season for everything. It is time to give up.
Because I am redeemed, I can't let the love bugs get me down. 
Because I am redeemed, the seasons matter. 
Because I am redeemed, I CANNOT forfeit peace. 

Tuesday, August 27, 2013

BIG week here ...

This week is Parson's 3 month post transplant evaluation.  That means she is undergoing a whole battery of tests so that she can show them that she is clinically doing GREAT!   

We started last week with a physical therapy evaluation and an occupational therapy evaluation. Her infant lung function test took place this past Friday. Yesterday she had a chest X-ray, blood work, pulmonary clinic (doctor visit), medicine/prescription review, then bloodwork again. Today she had a bronchoscopy with alveolar lavage and biopsy. She has done great for all the testing so far. She is such a champ, they were surprised that she  didn't even cry when they pricked her finger.

Wednesday she will have her regularly scheduled therapy. Thursday is another clinic visit where we hope to hear the BIG news we have been waiting for - "You can go home!"  This Momma is getting just a little bit excited typing all of this. (That jet ride on February 4th was a long time ago.) Friday she is scheduled for a cytogam infusion (4 hours) and will get her PICC line out after the infusion. Woohoo! 

The thought of coming home is SO very   exciting. My kiddo got new lungs & we are getting to come HOME!  That makes me Happy Happy Happy. Our family will be together again and distance will no longer separate our hearts. 

When we get home, we will continue our new normal and get back in the swing of things with Darby & Daddy. Parson takes many anti rejection drugs each day to allow her body to receive the donor lungs without rejection. These meds work really well and destroy her immune system in the process. So we will work to stay away from germs, sick folks & anything else that may make her ill. Please know we love each of you & would love to have heaps of visitors and run all over town visiting -- but for Parson's sake, it just isn't the best idea for a while. Thanks for understanding why we must sneak around town in and out of places quickly & not linger anywhere for long.  Please know that we are not being snobby -- I wish I could stop everyone on the street and visit for a while to share her story. 

My heart is so full. Thank you for the love, prayers and support you have shown  our family. You have made the load lighter and our hearts so full. Thank you friends - We have come a  L-O-N-G way baby! 


June 8 - First pic after transplant

August 26- Clinic visit

Infant lung function test

Blood work at Infusion Center

Clinic visit with Dr. Mallory

Getting ready for bronc  

Monday, August 19, 2013

Life is not fair...

Life is not fair. I first learned that in my 7th grade math class when everyone was cheating and making A's and I was honestly struggling to earn my pitiful grade of a C.  7th grade hit me again with the "not fair's" when I didn't make jr. high cheerleader. (That is the first time I hadn't gotten something I REALLY worked for and wanted.) After the world started spinning again, I picked myself up, dusted myself off & started over again.  Seventh grade was my rookie season on the "B Team". Years later, now I know the "B" was for Plan B. 

I really struggle when bad things happen to good people. I question God when a tremendous 19 year old, full of life has a tragic accident and his earthly days come to an end way, way to soon. 

I struggle when a pediatric physical therapist (who has spent her life pouring her heart into getting kids in the PICU to "move") gets a diagnosis of ALS that will take away her ability to move & serve others. It hits me square between the eyes again -  Life isn't fair. 

I struggle when an amazing christian husband and wife who would make a fantastic mom & dad struggle to conceive a child.

I struggle when a doctor devotes his life to make the rest of us well and then receives a cancer diagnosis for himself. 

I struggle when I see Parkinson's and Alzheimer's slowly rob the very spirit of my loved one one day at a time.

I struggle when I see a nurse practitioner fight day in and day out to provide excellent, compassionate care to my child while quietly battling her own fight with MS. 

I struggle when I think about a spontaneous gene mutation that has altered every single day of my child's life. 

Life is just not fair. These are good people - Certainly some of the best. They have a heart of gold. Ugh. Why? It is the ultimate sucker punch. Simply Brokenhearted. 

The "prosperity gospel" would have me think that if I "believed enough" or "had enough faith" that these "not fair" things wouldn't be for me or any of the other good people. But I have learned over the past year of living in the middle of Plan B that prosperity isn't what I need - the word of God is what I need. It has nothing to do with being "good".  

When I begin to question God, I have to go back to some words I wrote in the front of my Bible many many years ago ... "Every single thing has been filtered through His hands."  He knew the diagnosis long before it was given.  He knew the exact number of days we would share with our loved ones here on this earth. He knew that there would be times where we would be broken hearted, worn, and have our very spirit crushed.  

"Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope." - Romans 5:3-4

On the tough days like today, when my mind gets bogged down in the "Life's NOT fair" -  I go back and think about the story of Joseph in the Old Testament.  He had his fair share of bad days and understood that life was not fair. He went through terrible suffering.  He served time in prison for a crime he didn't even commit. And he was sold into slavery by his very own brothers. After the whole ordeal Joseph said in Genesis 50:20 : “You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” Ultimately God used Joseph and his experiences to save his own family and point many other folks to the savior. 

It is really easy to stand up and praise God when you have just hit the walk off home run.  That makes it so easy to do the "happy dance" in the dugout. We have all practiced that dance a million times in our dreams. But let's face it-- It isn't easy to be on the losing end of life. We don't dream about losing or getting beat over and over again. But I would venture to say that I have learned more about life and love during the losing seasons.

Some of the best things in life have come to me through the losing seasons. Because my child was so very sick, I drew nearer to God than I had ever been before. Let me tell you -- HE is the healer for the broken hearted. Redemption wins in the end.  He can give you rest. He will walk with you through the very roughest of days/nights. His grace is enough.  Especially on the days when you are on the losing end - hold tight to His promises.

I Corinthians 2:9 provides an amazing truth for days like today --“No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love him.” God has promised a time when there will be no more suffering, no more pain, no more crying, no more tears, and we will be reunited with HIM in perfect harmony. When we belong to Him -  this world is not our home, we are just passing through. Glory! 

Plan B is rough and uncomfortable. Fall into the arms of Jesus.  
He loves you with an unfailing love. He will give you hope. 

Saturday, August 3, 2013

Mind over Matter

Mind over matter.
Fake it till you make it.
If it was easy, everybody would do it. 
Put on your big girl panties. 
Big girls don't cry. 

Those are all phrases that I have repeated over & over to myself throughout the past year. But the one I say most often is "It will not be like this forever."  I began saying it during the long, hard days back in the PICU when I would go into the public restroom and brush my teeth early each morning and late each night. (Many times with tears in my eyes.)  

It is good "positive self talk". The phrase applies to the hard times as well as the good times. It will not be like this forever. I really believe it. 

This past week was a BIG week. It was the final week of the five week narcotic medicine weaning plan. Whew. We made the final wean of methadone Monday and Ativan Wednesday. (Methadone is a synthetic opiate/analgesic used to treat moderate to severe pain. It is a "man made" heroin. It was a step down from the strong IV Meds she was on in PICU.  Parson has been on the drugs for about 6 months.) Bless her heart, she is such a little trooper. It has been extremely hard for her and she has had significant withdrawal symptoms.  Her sleep pattern is completely out of whack and most nights she only settles for about 45 minutes at a time. The old alarms that used to alarm in the night to tell me she needed oxygen no longer alarm because her lungs are doing GREAT!  The new alarms are those of a baby that has finally learned how to cry & fuss. What a blessing!  She is unsettled from drug withdrawal, has diahrrea, chills, sweating, is irratable and on top of all of that she has a whole mouth full of teeth trying to come in. She is also still having trouble swallowing. In addition, she is having a significant amount of reflux - especially when laying down. Recent tests confirmed the reflux, which is a bummer since she had a Fundoplication surgery prior to transplant to take care of the reflux. We will meet with the surgeon next week to schedule another surgery for a repeat fundo and repeat repair of an umbilical hernia -- Looks like she blew both. It will not be like this forever. 

My sweet friend gave me a new necklace... It has a new phrase that puts things in perspective. It says... Life doesn't have to be perfect to be WONDERFUL.  Love it. It certainly fits for the last week of drug withdrawals .... Gonna add that one to the "positive self talk" phrase collection. 

It has been so great to have our little family back together for the past few weeks. Darby is crazy about Parson and Parson is absolutely nuts about Darby. Rodney & Darby left to go back to Jasper and resume their work/school routine. Them leaving has brought on a whole 'nother level of withdrawals for Parson and me both. Rodney took the training wheels off Darby's bike yesterday and had plans to work with her over the next week to help her learn to ride without the training wheels. She made quick work of that little chore and is riding on her own.  Time flies when you are having fun ... It will not be like this forever. 

We will get to join them at home before long.  As of now, we are scheduled for our three month post transplant evaluation the final week of August. If all goes well, Parson will receive her final infusion and should be given clearance to return home sometime after that.  In the meantime, we stay really busy with dr appts, physical therapy, occupational therapy, blood draws & infusions. Other than the withdrawals, Parson is doing  really GREAT!  Thank you Jesus for this new baby. I will take a fussy baby over one that is fighting for her every breath any day!  

In everything giving thanks rejoicing always... (Even withdrawals)  Because it is not gonna be like this forever. 

OT using a sucker to work on swallowing & oral motor skills 

My Uncle Willie says dumdum suckers are great. 

Darby took Daddy grocery shopping. 

And she's off!

Par working hard with Katie in PT

Headed to clinic. 

Taking off the Training Wheels

We got a "pass" to go HOME this past weekend - and it was wonderful!  I got to see Darby riding her bike (without training wheels), got to see the chickens dogs & cat, got to breathe in some good country air and eat some fresh peas & cornbread.  I also got to hug my Momma's neck.

It was a bitter sweet trip...The world lost an amazing man this past week. Mom's brother and my beloved Uncle Willie saw his earthly life come to a close and began his new life in Sweet Beulah Land. He is high stepping, standing tall and I am sure the crowds are already lined up to hear his stories wherever he is "holding court".  He believed in working hard and playing hard. His smile was contagous. He never met a stranger. His advice was second to none and his heart was as big as Texas.  With him joining my Daddy in heaven, the allure of heaven got a whole lot sweeter.  I'll miss you Uncle Willie. 

Monday we met with Dr. Cass, the surgeon who did the Fundoplication & hernia repair before Parson's lung transplant.  A recent pH probe test showed that Par was still having significant reflux (especially when she is laying down). Dr. Mallory thinks the surgery could help with her reflux & protect her new lungs from reflux. She had an upper GI last week that looked ok and didn't show any reflux. Dr. Cass was not in a rush to repeat the surgery when weighing the risks. He was going to consult with Dr. Mallory and they would determine whether Par would benefit from a repeat of the surgery at a later date.  

Parson is doing better everyday. She finally gritted through the last of drug withdrawals and her smiles are back.  (Whew - I survived too - drug withdrawals are NO JOKE - don't ever let anyone tell you any different!). She is beginning to vocalize again, beginning to show interest in toys, sleeping better at night,  putting her feet in her mouth again, and is rolling over and putting weight on her arms.  All of those things are small steps toward catching up on some developmental milestones she missed while she was so sick. To top it all off, every tooth has a new neighbor moving in on each side -  a whole mouth full of teeth coming in at one time. She is such a good sport - I know she has felt like junk but she is such a good sport in spite of it all. A real life lesson in true grit.  

I am so thankful for better days. It sure is  fun to take off the training wheels & make a little trip home. 

Below are a few recent pics ....

Darby let Parson wear her headband...

And they were swinging...

I think she likes it...

Mmmmm tasty toes...

Look out - Darby has a really, really loose front tooth...

My new snaffle tooth...

Mule riding with Daddy is pretty fun...

Look Mom, I am on my belly! This is a really cool polka dot quilt my Gee Gee made me. 

Just love this pic of Darby - (thanks Dorothy.)

Tuesday, July 9, 2013

The Fog, Slobber, The Circus & Being Glad

After discharge from the hospital - it has been a busy two weeks.  Here are the highlights...

I have been settling into my new routine as "Primary Medicine Giver". We have a two part approach - the required transplant Meds and the weaning Meds/narcotics (which we have a complex weaning schedule for).  Within the first day or so, I knew something wasn't right and called her doctors.  We had a major medicine "mix up" where one of her meds (methadone) was dispensed at twice the strength it should have been.  As a result, Parson slept through TWO different birthday parties and the majority of the first week home.  I am pleased to report that she finally woke up and came out of the FOG. It took about a week to get her to wake up & return to smiles, but now she even giggles out loud for Darby. 

We still have about 2-3 more weeks until she is completely weaned from the  methadone, Ativan & clonidine,  but we are working to slowly get rid of those meds. Withdrawal is a BIG concern still, as the last small amounts are often hardest to shake for little "junkies" - that have been habituated for such a long period like Parson. This process brings new meaning to the term fussy baby.  Bless her heart- she is such a little trooper.

We spend a great deal of our time at Texas Children's. She has bloodwork and clinic appointments twice a week and we have also spent quite a bit of time getting medicines straight with her doctors, nurses and the pharmacist.  In addition to the clinic schedule, she has also had both physical therapy and occupational therapy. Both therapies will help to make up for some lost time due to her severe illness and developmental delay.  The OT noted in her evaluation that she charted Parson as a "strong 7 month old". All of her therapists are very encouraged that she is already gaining strength and showing improvement. 

After discharge, she developed a weird situation where she has not been swallowing anything - not even drool. This is very concerning for us, but also a HUGE mess. We feel like it is related to her medicines as she is producing copious amounts of drool - I mean MAJOR amounts of cold, wet, thick slobber. (Sorry, I know that is TMI for some of you.) Her doctors are conducting various tests to determine what is causing the issue. She is scheduled for a swallow study tomorrow to check things out.  Speech therapy may be added to our repertoire depending on the findings of the study. 

Yesterday she had a bronchoscope where they sedated her (term used lightly as they used twice the normal amount of sedatives and she still wasnt "out") and went down to check out her new lungs. They also took biopsy samples and used a "wash" or lavage. Everything looked great and took place with no problems. Her lung tissues appeared very alive & no signs of rejection - Thank you Jesus. They also took a quick look at her esophagus because of the swallowing issue, but nothing in particular was noted. During the procedure, they placed an impedance probe that will be left in place for 24 hours. This will record any amount of reflux that she may be having. She is not a big fan of the tube in her nose going down her throat. It is making her gag more than usual. And she has been gagging quite a bit as a result of the not swallowing issue. 

We have begun to settle into our life as a little family once again. We have a little, one bedroom apartment (that Darby says is HUGE!) that we pay a daily rate on to the fine folks at Kingwood Church of Christ. We got the apartment through the apartment ministries program. Our housing situation is another great example of Plan B.  Our original plans were to go to The Ronald McDonald House, but it was full - (No room in the Inn). The apartment we have is close to the hospital, has tons of sidewalks for us to stroll & two swimming pools. I sure am glad we are comfortable in Plan B and trusted God to take care of our lodging too -- another great testimony of a fishes and loaves situation for us. He always has a much greater plan than we can ever imagine. Can I tell you about God's faithfulness again?  

"It is The Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed." - Deuteronomy 31:8

I promise that I haven't intentionally left you guys hanging without updates and pictures. We have been really, really busy shuttling back & forth to the hospital for appointments. Parson also has quite a mixed up routine/sleep schedule after being in the hospital for 5 months. Her nights & days are really mixed up - that is why I am writing this blog at 4:30am (while she fusses & talks in the background -guess she is dictating to me exactly what to report.) 

The highlight of this past weekend was taking Darby across the street to Reliant Stadium to The Ringling Bros & Barnum Bailey Circus. Wow!  We had a ball!  Parson stayed back at the at apartment with Gee Gee and evidently protested the whole time. 

Whew. I am still amazed that we are where we are -  I pinch myself quite often.  Life is so very precious. He has made me glad. Thanks for taking this journey with us - it is nicer because you are here with us. Your prayers and faithfulness have given strength to us when we have needed it most. 
"The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love." - Zephaniah 3:17. 

 The Birthday Girl

Discharge Day

Cake Smash

On a stroll 

Sisters - together again

Hey friends - need a ride?

Another stroll

The  Family

At clinic, waiting my turn. This girl really ROCKS the mask and aren't those the cutest scars you have ever seen?

The Circus



Two thumbs up for the Circus!