Just Two Little Words

Just two little words ~ Don’t Worry ~ so simple, yet so full of meaning(s).

Don’t worry … does that mean I should ?

Don’t worry … does that mean honest, everything will be all right?

Don’t worry … does that mean just trust, have faith, believe?

Jackjack’s post pelvic osteotomy appointment was yesterday and despite his very loud and sad reaction that made our amazing surgeon feel very, very bad, and every child waiting to see her very, very nervous it sounds like everything is okay. Everything looks good, see you in two months, keep letting him explore as much as he’s able, he still has a long road ahead of him…

Nope, don’t worry about his limp.

Nope, don’t worry about his left foot being on a 90 degree angle to his right.

Nope, don’t worry about his left leg being almost an inch longer.

Nope, don’t worry that we didn’t do an xray “just to check”.

We’ll watch, and we’ll wait and we’ll see … see you in two months, don’t worry.

Ummmmmhhmmm … okay?!

And yet, with just two little words, we have a choice. These two little words give us option(s).

Don’t worry, be happy.

Don’t worry, it is out of your control.

Don’t worry, celebrate every new moment.

Yes, celebrate that your child has overcome challenges that many have not with courage and smiles.

Yes, celebrate every new step your child is taking, even if not entirely “on his own”.

Yes, celebrate that we live in a country with such amazing medical care.

Yes, celebrate that you have the love and support to make it through.

Yes, celebrate.

At this moment, I choose to “just keep swimming”, (we may have watched Finding Nemo more than once over the last year!) due to two very sweet words …

“Don’t worry”

What are you choosing today?

XO,

Steph

Wordless Wednesday - 1st Swing after 13 months casted & braced !!

XO,

Steph

We now have a time ..

I'm never sure if I should feel blessed or sad that they know Jackjack by name okay, yes, and sight .... although with his crazy head of red he can be hard to forget! They are looking forward to seeing us "no later than" 6:30 am. Jackjack will be first case again as his surgery is scheduled to start at 7:40. We have no idea how long it will be as it is partially dependent on his reaction to the anaesthetic and whether or not he has bone growth over the head of the pins.

I'll try & keep my tweets as up to date as I can from my phone & will be able to post a more detailed "How's Jackjack" as soon as he's in a room. Hoping this will be his last surgery for a very, very long time.

xo,

Steph

Phone calls from week*s* past ....

Our phone has been very busy over the last week, week and a half with amazing news ...

1.   Hannie's heart is functioning well even with a very irregular heartbeat. After reviewing the holter monitor results, Dr. G feels that it is not hanging out too low (bradycardia) or too high (tachycardia) for long enough to be causing her symptoms. We do know that after open heart surgery the need for a pacemaker may present itself in the future but for right now .... her heart is functioning well on its own and has returned to normal size :)

2.   Hannie's sweat test for CF returned .... wait for it ..... N-E-G-A-T-I-V-E  (WOOT! WOOT!). Hannie's result was only 16, with a positive result returning at 60. She has a repeat PFT on June 4 to see if her numbers have risen or fallen as 2 results were borderline and 1 was below. This could be a sign of something going on OR just a function of it being her first time completing a PFT. We are praying that it is just a first time result and that those numbers will go up.

3.  Jackjack's innominate osteotomy has been confirmed for May 1 .... his surgery time will be another phone call right up to the 30th.

4. Jackjack's general surgeon, Dr. B (who is following him for his bowels & "boys"), called yesterday to confirm that they have been able to coordinate with his orthopedic surgeon, Dr. J & both surgeries will be done on the 1st. Jackjack has one "warm weather" testicle & one who likes to hang around (I know, but I got you to giggle!). They will release his left testicle before Dr. J continues with his hip .... which is such a relief.  It is hard imagining him needing another surgery .... that would have brought him up to a total of 6 before his third birthday!

We are still waiting for Hannie's results from Dr. M, her rheumatologist but don't expect them for a few weeks. Several of the tests needed to be sent to a different lab and take awhile to return. Her energy has been steadily increasing in the afternoons & she is trying her very first full day of school today !! What will Jackjack & I do ?????

We will be praying for Stellan who is, at this very moment, having his sweet heart fixed .... will you join us? I am warning you though .... you will fall in love with his adorable face, his story and his amazing Momma !

"GROW, BONE, GROW"

xo,

Steph