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. ) 

1 comment:

  1. Hi Jennifer! My name is Cara Lyons and I manage the blog and social media for Texas Children's Hospital. After reading your blog, I find it to be very inspiring and informative. Would you be interested in writing a post for Texas Children's official blog? I think Parson's journey and your family's experience is something other parents would love to hear about and learn from.

    If you are interested you can email me at: cclyons@texaschildrens.org (www.texaschildrensblog.org) Thank you!