Tiny Tots Gymnastics at Blue Valley Rec

Lydia had her first session of Tiny Tots Gymnastics on Saturday morning.  

She was a bit in awe of the room and all the other kids but quickly got the hang of things.  

I can't wait to see her face when we go back this week.

Crawl, Run, Hop, Jump! 

The uneven bars.  

She wanted to do a full spin but wouldn't put her head down to go through with it.  

I bet we get there soon.

Lydia was a big fan of the giant squishy mats, all of them.

She went through the rolling barrel like a champ, over and over and over again.

Conquered the slide like she's done it a thousand times.

I'll get a video of this next time.  She had a great time running up and down the long trampoline!

The month ahead could be huge! UPDATE 1

Busy days ahead for Miss Lydia, Dan and I.  We have a lot to look forward to this month if all goes well!

August 26: Tiny Tots Gymnastics begins for Lydia!  Fun!  She's loving it, especially the trampoline and the balance beam!

August 31:  Neurodevelopmental Assessment.  Dr. Willen follows the CHD kiddos to see if they are developing how they ought to be or if any interventions are needed.  Lydia is awesome...it's been confirmed by fancy doctors.  Last year she was in the low to below average range on a lot.  This year she is average and above on everything but speech.  They can't technically evaluate her on her signs, but Dr. Willen did unofficially and she was mighty impressed.  She suggests we start speech therapy this fall!

September 1: Sleep Study!  If Lydia passes her sleep study we can take the trach out for good!  Cross your fingers and toes and say a few prayers please.  It was a long and exhausting night for me.  Lydia slept just fine and was capped from 11:30pm to 5:30am.  1,100 pages of data takes some time for them to analyze, so we'll know soon!

September 6:  Hanger Clinic.  She walks on the inside of her feet a little more than we would like and think is appropriate for a kid her age.  Just getting things fixed sooner rather than later.  We are getting SureStep inserts to correct this now.  She can wear them with socks around the house or with shoes wherever we go!  She choose the busy buzzing bees pattern with yellow straps.  The SureSteps look like this:

September 13: Pre-Admissions Testing.  Why?  Oh yeah.  Lydia gets her trach removed on the 19th!  Next week.  She was an absolute pill this morning at her appointment and wanted nothing to do with anything or anyone.  'nough said. 

September 14: Home Vent Clinic.  Just a regular check up with our friends at Home Vent. If the trach comes out, this goes away and we'll just go to an ordinary pediatrician.  Terrifying and liberating!

September 19:  If the sleep study goes well, we are scheduled for decannulation.  Lydia will stay in the hospital for 2 to 4 days to be monitored without the trach.  

It's hard to even remember when she didn't have a trach.  It will be such a huge adjustment for all of us.  It will impact everything...bath time, what we carry in the diaper bag, daily trach care, weekly trach changes, taking a suction machine everywhere we go, avoiding the pool, oxygen stored in the bedroom, machines running at night, monitors hooked up to Lydia overnight, the ability to spend the night places, nursing care at home, and so much more I'm not thinking of right now.

1/2 of August is in the books!

We've been up to a whole lot but not much.  :-)

Taking Walks

 

Posing 

  Watching the street crews

  Getting into stuff.

 Dressing up and being fancy.

  Climbing like a monkey. 

  

 More posing.

More getting into stuff. 

Starbucks!

Hats!

2 years with a trach.

August 10th will be the 2nd anniversary of Lydia's tracheostomy.  I think the trach may be the hardest thing we have had to do.  We knew the heart had to happen, the feeding tube was tough to accept but Dr. Vaughan was amazingly convincing and supportive, but the trach was different.  

Trach = Vent in my mind, which is taking your child home and turning your living room into an ICU.  Trach meant something visible all the time, something sensitive, fragile and delicate.  We just wanted to bring Lydia home.  Lydia was okay around the end of July and early August.  Then quickly began acting more ill and visibly looking sicker.  She was breathing like she was running on a treadmill and could never get off.    

We were set to go home July 31st or August 1st and be discharged from the PICU.  That alone should have been a red flag, no one discharges from the PICU.  Doctors switched and our plans foiled.  Dr. Tieves would not send us home and immediately started monitoring Lydia's carbon dioxide levels.  I was angry and curt with that woman for a week but at the same time I was forever grateful for whatever she saw going on with Lydia that no one else did.  Come to find out, it was the intern that tipped off Dr. Tieves that she didn't think it was safe for Lydia to go home.

We retested about everything under the sun to ensure nothing else could be done to help Lydia before a tracheostomy.  I met with ENT doctors and pulmonology.  I asked to speak to her heart surgeon and various PICU intensivists.  I remember one morning during rounds, Dr. Tieves said trach so nonchalantly and I exploded.  I get that they are around it every single day, but I'm not, this is my baby, I don't want anything else to happen to her.  I remember saying something along the lines of, "sure, just cut another hole in her, as if she doesn't have enough already."  

http://lydiaroseriggs.blogspot.com/2015/08/the-scariest-word-in-picu.html

Dr. Tieves didn't give me any sympathy and in hindsight I appreciate that.  That was the day I heard from pulmonology, the home vent team, an ENT doctor, her heart surgeon and finally Sandeep, the resident in the PICU the entire time Lydia was in-patient.  I saw him more than any other doctor and he knew Lydia very well.  He always took time to come back and check on her and I and answer questions.  That conversation finally convinced me and I had to convince Dan.  It took us a day or two, all the tests were done on the 6th, we decided to move forward on the 7th and she got her trach on the 10th.         

http://lydiaroseriggs.blogspot.com/2015/08/tracheostomy.html

Look how sick she was.  These were from August 3 - 9.

And then it all melts away because this saved her life.  She went from this sick tiny little baby that couldn't breath to this chubby cheeked smiling firecracker in a matter of days.  These pictures of from August 11 - 16.  Totally different baby!

And now my big girl!