milestones at the weidners (part 1)

Hi!

So many milestones at the Weidners over the last couple of weeks and I feel like I need to document!  Some of you follow along on Instagram (@hillarykweidner) but if you don’t – head over.  I have been posting so much more in my Insta story just because it is so much easier and more convenient!

Anyway!  I had some things I wanted to make sure happened before baby #3 comes (April 9th is the target date!).  I wanted Poppy potty trained, Bea to be able to swallow her medication, Poppy to finish up with the pacifier and officially move Poppy and Bea into the same room.

Yes, there are a lot of things but I gave myself until January 1st to start tackling.  I had a timeframe I wanted each thing done but basically, I wanted all of the above completed by April 1st so I had time to get the nursery ready and fully stocked for baby #3!

#1 to tackle – having Beatrice swallow her medication.  I

f you remember, Beatrice has to take an immunosuppressant at 7:30am and 7:30pm every day.  You can’t be early with it, late with it, and mot certainly can’t skip it.  Her life literally depends on this medication as it shields her liver from being rejected.  (Rejection can still happen but likelihood decreases when on this medication).  When administering this medication, we always emptied the pill into a dish, mixed it with 1.5ML of water, drew it in a syringe, added .5ML to the dish, mixed it, drew it again with the same syringe and gave the whole 2MLs to her.  We did this twice a day and it was super complicated, time consuming, and I – personally – dreaded doing it. BUT – we were doing it this way because her pills are HUGE.  If you want to envision size, think like a One a Day pill or a Mike n Ike.  Huge.

End of last year we were chatting with Dr Campbell and she brought up that continually taking the medication like this can put Bea at risk (very small risk, but still a risk) of tongue and throat cancer.  If you think about it, the way we were giving her the medication wasn’t protecting it until it reached her belly.  It was directly hitting her tongue and throat.  Just the word CANCER was enough for us to spring into action.

I made an appointment at CCHMC with their psychology department.  I had been wanting to make a contact there and build a relationship long term anyway.  With a daughter who has some limitations and could run into body image issues with a scar as big as hers – I wanted someone I could chat with (and she could chat with) if any of these issues ever arose.  Learning how to swallow a pill was the perfect excuse.

Long story LONG – we met with a wonderful lady Michelle and she showed Bea and I how to work on some things at home.  This appointment was in early January and we all set the goal that by April 1st she would be able to swallow her medication with water.  To get to that point, we would take a couple of weeks and work on swallowing a little sprinkle.  Then we would move up to a Nerd.  And then a Jelly Belly.  And then a couple of weeks swallowing a regular Jelly Bean. And the last couple of weeks practicing swallowing a Mike n Ike.

**Next time you or your kids are eating Mike n Ikes…look how big they are.  They are slightly bigger than Bea’s medication but not by much.

We went home that Friday with our plan and Sunday while Poppy was down for a nap, Jordan and I pulled out the thing of sprinkles and a cup of water.  We walked through and Jordan demonstrated.  We handed a sprinkle and cup of water over to Bea thinking this was the start of our 2 weeks with the sprinkle challenge.

She swallowed the sprinkle right away.

Totally shocked, we moved on to the Nerd.  Again, did it right away.

Could she do a Jelly Belly?  Oh yeah – no problem.

No way she would be able to do a regular Jelly Bean.  Literally, no sweat.

At this point Jordan and I were laughing so hard (I was definitely laughing through my tears) that Bea could just do as instructed without any issues.  She has always been a rule follower but her ease in taking on each item was alarming to me.

Do we try the Mike n Ike?  It’s huge.  What if she chokes?

We slid a red Mike n Ike across the counter, she looked at it, put it in her mouth, took a sip of water and stuck out her tongue.

I was shook.

I burst into tears.

For someone that has had such a challenging path, she somehow makes these types of things seem so easy.

SO – long story long.  Bea hit her milestone on her first try and I was able to breathe a MAJOR sigh of relief that we wouldn’t have to go through the arduous process of convincing her to swallow her medication.  It is SAFER now for her, it has cut down on major time for us, we can leave babysitters to give the medication in the evening, and the daily dread of being Bill Nye the Science Guy is over.

Win. Win. Win.

Thank you Cincinnati Children’s Hospital for providing us with a great resource for this milestone to tackle and for always being a great partner in Queen Bea’s care.

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xo

Hillary

 

 

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