Sorry our “part 2” of the story has come as a delay! We have some exciting news to share about our boy and the cool stuff that’s transpired since we’ve started therapies at United Cerebral Palsy of Central Az. 

 

We were asked if Jordan would be an Ambassador for UCP. This week, his story was shared on social media! We’re excited and honored that we’ve been asked to represent the Organization and share Jordan’s progress (and story) for years to come. Here’s the link to the site … UCP of Central Arizona - Ambassador, Jordan!

 

Praise God that Jordan’s miraculous story and journey will be shared beyond our reach. 

 

Also, beginning tomorrow, Sept 1, Kristen has committed to a fitness fundraising STEPtember Challenge with Cerebral Palsy Alliance Research Foundation. We're raising funds to help advance the research and innovation of Cerebral Palsy. Cerebral palsy (CP) is the most common lifelong physical disability in the world, affecting 18 million people of all ages, with 1 in 323 babies diagnosed with CP every year. Oh my heart (mama tears)! Even though it’s so common, CP doesn’t get the attention or funding it deserves.

 

Side note, the team "Jordan's Fan Club" consists of me (his mama), Valerie from UCP (she's the Director of Therapies and Early Childhood and does J's Occupational Therapy), Kim from UCP (his Feeding Therapist), and nurse Gabby (who now works at PCH but was on Jordan's rescue team the night he was born). It's a very special group of women who love and support Jordan in his progress.

 

If you feel so inclined to donate to the cause today and/or in September (funds will directly apply to UCP of Central Arizona) it would be appreciated! Here's the link to Kristen's fundraising site: STEPtember Donation for Jordan's Fan Club! Also, if you work for a company that does matching gifts, would you consider asking for a matching gift? 

 

Photos attached are of Jordan doing therapy. There's an apparatus that he was fitted for and we'll get early next year, called a "sit-to-stander". This will be used here at home to help Jordan gain strength in his legs, develop the arches of his feet, stretch his hamstrings, and help properly develop his hip sockets (as kiddos with CP are prone to hip dysplasia).  Though it sounds like a lot, it's become quite manageable for Kristen. Here's what our typical week looks like ... 

 

Monday - Physical Therapy, and every other week, Feeding Therapy (to help with drinking other fluids and lip closure), and chiropractor appt

Tuesday - Mom is a co-coordinator in her MOPS group this year but soon we'll begin a second PT appt every other week in the afternoon.

Wednesday - OPEN! Kristen can maybe get an organizing work day here or go to the zoo in the cooler months, hang out with family or friends, or we just chill!

Thursday - 1-hour parent coaching with Jordan at Desert Voices (school for kiddos with hearing loss), then Occupational Therapy.

Friday - we see a doctor trained in occupational manual medicine (OMM) at our pediatric office. She works on the tissue, facia and muscles throughout Jordan's body (to help loosen and stretch tight tissue and muscles, it prob feels like a massage too). 

 

We also participate in a fun music class at Music Together (weekly) depending on our schedule and J's nap schedule, and pending doctors appts. Life is busy but good! We work on therapies daily at home, too. This not only includes wearing his hearing aids and working on various words/sounds, but also Jordan wearing a glove on his left hand (3x/30-min/day) as he plays and does specific play to help develop his right hand use. The "glove" is part of the CIMT (Constraint Induced Movement Therapy) we do at UCP for OT. We also work with Jordan on his knees to help him develop ab strength to get to hands and knees crawling (he still moves all around with an army/belly crawl).

 

We don't have any updates from doctors appointments as those are fewer right now but here's how you can be praying for us until our next update ... and EXPECT A MIRACLE:

 

- Jordan to progress in his gross motor development - crawling on hands and knees, independent sitting, and start pulling up more to explore his vertical world.

 

- The 3 partial walls of Jordan's heart to completely heal and close so no surgery will be needed next year (this is one of the characteristics of his chromosomal deletion that would require an invasive surgery next year). Next appointment for his EKG and Echocardiogram is Oct 25.

 

- Jordan to improve his drinking skills from cups and straws with liquids (like water or juice) so we can be finished with bottle feedings. Oral motor skills are fine motor skills so as he improves in his gross motor skills, these should also improve. It's also harder for kids with CP to process fluids. He eats great!

 

We hope you've enjoyed these updates on little J's good life!

 

Love and joy to all,
Kristen & Andrew