Speech Therapy at CTS

Lydia began speech therapy at Children Therapy Services 3 weeks ago. She loves it there! Every Thursday morning before her session she plays with the sensory table in the waiting room. When her therapist, Ann, comes out to get her she immediately takes her hand and away they go. Ann and Lydia work for 30 minutes, talking through their play and learning new sounds.  

We are currently working on sounds using the Bjorem Speech Cues which is a method developed by the owner of CTS. Jen, the owner, has a daughter with special needs that has a chromosome disorder originally diagnosed as 22q11 though it turned out to be something different. She has transitioned her daughter through ITSJC to the BVSD, a move we will have to make next year. It's so reassuring to know that I'm so closely connected to someone who has walked in almost my exact same shoes...I mean, we even have the same haircut!

https://www.childrenstherapycts.com/

https://www.bjoremspeech.com/

Lydia Graduated from Home Vent

When a child gets a trach all normal plans go out the window.  

Lydia has been followed by specially trained pediatricians on the Home Vent team for almost 2.5 years.  This is a specialized care team that provides pediatric care to kids with trachs at CMH.  It includes doctors and nurses, GI specialists, dietitians, OT, speech, you name it, they've got it.  

This team has been by our side every step of the way.  They are who I called if Lydia's fever broke 100, if her pulse ox numbers dropped below 92, if we needed a prescription refill or had any questions about her overall health related to the trach or not...because when you have a trach it's all related.  

Just 5 weeks ago Lydia got her trach removed.  A week and a half ago she graduated from the Home Vent clinic. It's bittersweet. We know this team so well and depended on them for so much. We'll miss them but we are on to bigger and better things.  As Addie, dear wonderful available anytime awesome APRN Addie, left the room so she didn't cry, I didn't realize I was holding back my own tears.  Lydia and her teary eyed mom made their way out of the Special Care Clinic and to the parking garage.

Lydia has an initial visit with her new pediatrician in two weeks.  We'll fill her in on all things Lydia and see if she's a good fit for us.  Can you believe it?  A typical ol' pediatrician at a normal doctor's office.  Crazy!  She is affiliated with CMH and has access to all Lydia's records, so that brings me some peace of mind.

Visit to St. Charlies in pictures!

And we're off on our Mommy and Daughter Road Trip!

Waiting to meet PaPa at the hotel.

Trampolines and Doctor Kits is all we need!

Elena found an old ipod in a drawer, charged it and started jamming.  

She now walks around with ear buds listening to her tunes. 

Tire Swinging!

Soccer fun!  Go St. Cletus!

It's a Jeep Thing, you wouldn't understand!

Go Karts at Kokomo Joe's!

Time to decorate Halloween sugar cookies!

Sunday Funday and Goodbyes!

Girls Club! 

October Updates - in pictures!

We have a poser on our hands, people.  Such a ham!

October Updates - I know it's only the 4th!

We are 2 weeks and 1 day post decannulation and we haven't slowed down for a second!  So much has happened in just 2 weeks. Geesh!

Lydia got AFOs or Sure Steps that she wears with her shoes to correct her ankles from falling in.  She did that crab or w scoot due to low muscle tone and it didn't help matters.  But, we're fixing it.

We met with Kipp, the nurse that evaluates Lydia for the TA waiver.  We scored high enough to stay on the wavier.  Thank Goodness for so many reasons.  The TA waiver qualifies us for secondary insurance for Lydia, which provides us with in home nursing care.  We want her in a daycare so badly for the social experiences and learning to eat from other kids, but she still isn't able to have her live vaccines.

Live vaccines are a no go because Lydia's T cells counts didn't move.  We'll retest in May.

We had our October visit with Cindy from Blue Valley Parents as Teachers.  Lydia is such a suck up and cuddled right up to her for some lap sit and book reading.  Lydia got the hang of all the activities and continues to be developmentally on target.

We met with Wanda, our case manager with Amerigroup.  Lydia is good to go for nursing hours and we have only daytime, weekday hours now. 

I checked in with Laura, our case manager with Blue Cross Blue Shield.  She's so very pleased that Lydia is doing well, got rid of the trach and all it's baggage, and is receiving the services she needs.

Carrie and Dana, our ITSJC OT and Dietician, were at the house yesterday.  Lydia keeps growing and slightly inching up on the growth curve.  She had been hanging out at 9% and is up to 11%.  Yay!  We are staring speech therapy with ITSJC in November.  Dana suggested we get a GI visit scheduled to talk about her gut motility and digestion since she still has tolerance and volume issues with her blends post-trach. 

Friday is our last day with Barbie, our awesome nurse that we've only had a few weeks.  We are super sad to see her go.  Next week, Melinda, our awesome night nurse since day 1 (760 days with our family!), will be staying with Lydia on Monday and Tuesday.  She's saving the day(s)!  Grandma and Mom will be covering the rest of the week until we meet another permanent nurse.

This weekend we are taking our first road trip post-trach and we won't have to load up all that crazy equipment!  Lydia and I are going to St. Charles to visit Jen, Brian and the girls.  I'm so excited to see all the cousins play and not worry about Lydia's trach. 

Monday morning we will meet with Maxim and complete the re certification paperwork for nursing.

Thursday is our post-trach follow-up with the Home Vent Team...and probably our last visit.  That team has been with us since the PICU.  They have been support, teachers and mentors, and more importantly, they are Lydia Lovers!  I've called these doctors for silly questions and emergencies, at 3pm and 3am.  They have unending patience and concern for these special kiddos with trachs.  We'll get some pediatrician recommendations from them at our visit.

 Whew!  That's enough for now.  Oh yeah, I'm still working my full time job :-)  and I'm so proud of Dan for his new position with Keller Williams, The Hendrix Team.  He is the new Director of Operations for the office in Overland Park.  :-)