March. What even happened?

Where did you go now, March?  It came in real nice, Clark.  It soured over Spring Break and I suppose had an upswing toward the end. 

 

Lydia and Rylee had a playdate after pajama day and they had a spa day with face masks!

Lydia got all geared up for soccer and practices began.  Games start in April!  She had a good dentist check up with her fake nails on.  

I feel like Lydia must have been pretty centered in March.  Lots of relaxation, yoga, quiet times...also, some of this was how she calmed down if she was mad about something. 

Lydia spent a day with Nana to kick off Spring Break and then WHAM!  Vomiting, fevers, chills, coughing and all the snot, mucus, phlegm...all of it...yuck.  Poor girl missed most of Mad Science Detective Camp and poor mom and dad caught the bug, we always do.

 

No St. Patrick's Day parades for us this year.  Kept it low profile because of the sickies, but Lydia did build a trap and lured a leprechaun in with fake gold coins.  She didn't catch it but did get some candy in her trap.

And then there was food, apparently, it looks like we ate a lot in March!  Lydia can be a good help in the kitchen but most of the time she just wants to play restaurant and she's usually the hostess, waitress and busser all in one.  I'm the cook...and usually the dishwasher. 

We checked the the Lenexa Winter Market and had lunch at the public market. She made me go to IHOP.  eh. We had some tasty mac n cheese at the Corner Bakery.

Growth Hormone is Gone...as in out of stock...we still need it.

We always had toilet paper during Covid. We've never run out of bread and milk in a snowstorm.  We did not have to endure the formula recalls. But the manufacturing delays, worker shortages and supply chain issues have finally caught up with us. 

We were notified by our specialty pharmacy in mid-February that Lydia's growth hormone was out of stock.  When I connected with our doctor they said they hoped it would be back soon and that we were not going to switch drugs.  Others are running out now because of patients switching.  When I reconnected with the pharmacy they said they hoped to have it back by June.  So Doctor is saying soon and Pharmacy is saying June.  I'm really hoping the doctor is right and we don't have to go long without it. Right now we are 25 days and counting without it.

We really don't want to lose momentum.  These photos are from October 12, 2022, 2021 and 2020.  I didn't zoom them in evenly but look for the doorknob in relation to Lydia's shoulder. She's grown 11 inches since starting growth hormones, 2 years and 5 months ago.

ASHP is reporting maybe having drugs back in stock by late March.  That didn't happen.  I have another message out to our specialty pharmacy to hear the hopefully good news. 

https://www.ashp.org/drug-shortages/current-shortages/drug-shortage-detail.aspx?id=888&loginreturnUrl=SSOCheckOnly

February, You're My Little Valentine

We had a pretty good February, even though or maybe because, we cancelled our road trip and just stayed close to home and close to one another all month.  

Lots of theme days at school, hair straightening and play dates.  

Valentine's festivities and losing teeth down the drain that we had to fish out for the tooth fairy.

Lydia, a Brownie now, sold, inventoried, packaged and delivered dozens and dozens of Girl Scout cookies to family, neighbors, coworkers and doctors!  The girls had a blast selling cookies at the Furniture Mall...free cookies and ice cream, plus tricycles to ride around the store!

We were so ready for the Super Bowl.  Lydia and Dan made Buffalo Bombs and I made a triple chocolate mousse cake for Uncle Tony.  Great company, great game, great win!

We visited Pulmonology on Valentine's Day. Believe it or not, the tests show that Lydia's lung function is improving a tiny little bit. Yay! We'll continue daily inhaled steroids, using the handheld breathing device to help clear secretions from Lydia's airway and CPAP every night.  Crossing our fingers that airplane travel this summer goes well.  We are taking a test flight to Chicago - a vacation close enough to home that we could rent a car and drive back if we had to.

 

Eye doctor and new glasses too!

Lydia hosted Dan and I at school for Showcase Night.  She toured us around the classroom, showed us her completed work and projects, practiced reading and math problems in a live demonstration, and then showed us where all her favorite books are in the library.

We finished reading book 1 in the Harry Potter series and had a themed Saturday.  We started at the library for the KC Brick Lab Lego Show and found Harry Potter legos!  We made a spell book out of an old notebook and wrote spells from Harry Potter in it.  I included the unforgiveable curses, too! 

Lydia and Dan decorated the fireplace and turned the living room into the Great Hall so we could watch the first movie in style!

My LVE Eagle!

Reading at bedtime by herself these days.

blinkers, eyeglasses, frames, rims, specs, spectacles

 

2023 New Pinkies

2022 Light Purple, the better replacement

2022 Dark Purple, lost on last day of 1st grade

2021, First Pair of Pinks

Pulmonology Visit and we escaped the parade.

 

Lydia was supposed to see Psychology and Pulmonology on Chiefs Parade Day!  Nope.  Luckily we were able to push back psych and move pulm to Tuesday.  We trekked downtown at 6:45 for our 7:30am visit and ate donut holes afterwards.

All is looking...better...not good but better with her lungs.  Lung capacity and volume are increasing slightly.  Her peak flow measurement actually had a slight peak this time.  6 months ago it was a plateau.  Since her persistent winter cough is back and two antibiotics haven't killed it, we are culturing her mucus.  That means we spent extra time there trying to get Lydia to hock a loogie. 

Dr. Escobar thinks she can fly without oxygen.  Mrs. Riggs is not so sure after our night in the ER last summer in Colorado.  We agreed to get Lydia a High Altitude Simulation Test at KU or St. Luke's.  Well, they don't test kids.  Not sure yet if we have other options. 

So we're going to fly to Chicago this summer as a test run, cross our fingers we don't have any issues, and if it's a flop we'll drive home.  Do you know what happens if you are in flight and need oxygen?  Nothing, the airline can't give you oxygen.  They ground the plane.  I do not want to be responsible for grounding a flight of people not at their intended destination.  

January, you start the year off fine.