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.