1st Day of First Grade

 

We've reached numbered grades!  1st Grade with Mrs. E.

Lydia is so excited to wear her Nike and Fila shoes.  She them on a rotating schedule.

Lydia is super pumped to attend YCare afterschool and so far so good.

It's the final countdown to first grade!

We had multiple slip 'n' slides at our house and at Grandma and Papa's.

Art studio at Grandma's house.  

I don't have the patience for as much painting as the two of them do!

Gymnastics, Ice Cream, Dress Up

Doctor visit #325,978,641 since June.

Let's go fishing, Let's go fishing!

 

Beads and a back to school shopping date with Nana!

Gymnastics and playing in the rain!

Dentist and Doctor...Pig had "a mergency."

Surgery #10 coming right up

#1 Open Heart Surgery

#2 Gastronomy Tube

#3 Tracheostomy 

#4 Open Heart Surgery

#5 Ear Tubes and Bronchoscopy

#6 Palate Repair and Ear Tubes (take two)

#7 Trach Removal and Bronchoscopy and Ear Tubes (take three)

#8 Tonsillectomy, Adenoidectomy, Bronchoscopy and Ear Tubes (gotta keep 'em fresh!)

#9 Inferior Turbinate Reduction, Bronchoscopy and Ear Tubes (yep, another new pair!)

#10 ...................................................................................there will be ear tubes, fear not.

I don't take any surgery lightly and I have to cope somehow so you get my sarcastic humor.  

Lydia will be having her 10th surgery in 2021, most likely October.  It will have been two entire years since she's had a surgery and that was a nice break.  We need a few services to align on a day that we can make it work.  ENT, Radiology, and Pulmonology.  So, what are they going to do?

1. Fresh set of big kid ear tubes.  Instead of the kind that looks like spools of thread, this is more of a T shape and should stay in longer.

2. Take a camera from her nose to her lungs, yep, all the way down to check for any and all airway obstructions including adenoids, laryngomalacia, concave at the trach site, obstruction from the aortic arch repair.  

3.  Adenoidectomy, again, because hers are enlarged and/or growing back and are at about a 90% obstruction, thus why she is on CPAP.  This won't be to get her off CPAP, only to help lessen her need and the obstruction, making it safer for her to sleep.

4. Supraglottic laryngectomy, which basically trims off the top of the larynx or the supraglottis that, on Lydia, is floppy and obstructing her breathing.  This will also not get her off CPAP, but will help her sleep safer with less obstruction.

5. CT Scan of her airway, lungs and heart repairs.  Images that they can't always get while she's awake and moving and that aren't very clear on her echo since it all sits on top of one another in her little body.

That's it!  That's all we're doing.  I always hope for the first surgery of the day so we aren't delayed and can settle into a room before shift change.  The early morning is rough but we have fewer waking hours of hungry Lydia that way.  Predicted to be a one night stay and Lydia usually lives up to those expectations with ENT procedures.  Now, surgery during Covid and in the thick of flu and rsv season, there could be better timing on that. This kid needs to breathe though and CPAP is doing wonders but this could make it even better = safer. 

That's what friends are for.

 Keep smiling, keep shining

Knowing you can always count on me, for sure

That's what friends are for

For good times and bad times

I'll be on your side forever more

That's what friends are for

I'll spare you all the college moments captured in grainy images we shared in the early 2000s.  I'll only share our best days.  Becky has been by my side since freshman orientation at Washburn University.  We experienced love, life and loss alongside one another.  Though we are only a couple hours a part, we don't see each other often but we are friends that stay strong no matter the time or distance.  We could pick right back up where we left off tomorrow, next year or in five year.  We keep each other smiling, that's for sure.

Becky stood by me when I married Dan.

I stood by Becky when she married Tyler.

Becky and I have always shared a love of reading and pledged to visit Boonsboro, MD for our 40th birthday celebration.  I've not forgotten, Becky, we need to get those reservations firmed up!  Becky is a Team Leader for Usborne Books and More and she recently hosted a Party with a Purpose to benefit the children at Children's Mercy Hospital in honor of Henry, Lydia and Cade.  Becky was able to donate 154 brand new Usborne books for the kids to enjoy while staying in the hospital.  She chose to honor and remember three very special children with this fundraiser and she chooses to support three friends each and every day.

All the books Becky and willow donated today.

The images I don't have on my camera roll from way back are of Paige and Stacie, both also our friends from college.  Friends that are connected again in adult life because of our children.  We three have walked the halls of Children's Mercy Hospital because our babies were patients there.  If you are reading this, you most likely know about Lydia's medical diagnosis and ongoing battles she is fighting.  Henry, Paige's son, was heart warrior taken from this earth at the age of 4 to become a heart angel.  If you see me waving up to the clouds while swinging, I'm saying hi to Henry. Cade, Stacie's son, is cancer smasher and is three years post treatment. These ladies are my other type of friend.  The one who has gone through hell with their kid. The one that I only get to see every couple of years if I'm lucky but that embraces me with a quivering hug so strong that neither of us knows when to let go because there is an inexplicable energy.

Becky and Willow at CMH circle drive.

Children's Mercy Hospital is a miraculous place and a devastating place. It's filled with hope and sorrow. You can smile and play while you are there or you can worry and cry. There is no one braver than the children who walk, stroll, and ride the halls of a children's hospital. There is no one more courageous than the little ones who come to know that place, those doctors and nurses, and take it all in stride as if it were a normal part of childhood. There is no one more amazing than our Henry, Cade and Lydia. Thank you for loving us, Becky.

Shop with Becky here: https://a10723.myubam.com/2153462

CPAP Update ... Ear Infections and so many shots.

 

Well, she's doing it, like the champion she is.  

Also, I'm doing it, like the bribing with rewards mother that I am.  

Lydia has number magnets she uses to mark the days she wears the mask 8 or more hours.  

After 3 consecutive nights she got an LOL doll.  

After 5 consecutive nights she got a LEGO set.  

After 8 consecutive nights she says she wants a Barbie...

 

Needless to say, LOL dolls make this 6 year old's world go round and she's wearing her CPAP mask 8-11 hours each night.  What can't she do? 

One night she did wake up in fits and screams because her ear hurt.  Lydia has never had an ear infection but has always had ear tubes.  This is our first summer without them because one fell out and the other was removed since it was partially out.  Now Dr. Google told me that CPAP can cause discomfort from pressure in the middle ear.  At 1am it could be that. She had no fever.  Dan slept with her on the couch until she could settle down and sleep.  

Then we headed to the doctor...double ear infection, cough and congestion.

Lydia still has an oral aversion to liquid meds, having a gtube meant not needing to learn that skill at a young age. Giving her liquid meds can be like WWIII and we reserve that fight for her liquid iron each night.  She needed an antibiotic, steriod and inhalers. The latter are more precautionary due to her airway issues and two rounds of Croup under our belts this summer. 

I'm the mom in the urgent care room that asks if they have anything injectable.  They always raise an eyebrow but the hassle and tears for 30 seconds of agony far outweigh the frustration of liquid meds. She gets stickers, suckers and toys because the nurses just gobble her up!

Day 1: 4 rounds Albuterol, 2 rounds Flovent, 1 steroid shot, 2 antibiotic shots.

Day 2: Yes, we had to go back for the next dose of 2 antibiotic shots.

Day 3: Yes, we had to go back again for the next dose of 2 antibiotic shots.

Lydia may never want to see another doctor again, 

except she's decided she will be a doctor for Halloween.

That is all past us.  She is back at camp having a great time. Swimming lots and we even got all our school supply shopping done.  Summer is coming to a close and I couldn't be happier.  It's not been a particularly fun one. Now bring on school and germs and mask arguments between parents and all the rest. Can't wait. Gah.