Wednesday, July 15, 2015

Casa del Cray Cray...

Howdy! It's been a while, hasn't it?  Well lucky you, I'm about to catch you right up on what's been going on here at Casa del Cray Cray! Settle in.

We'll start with Tessie's 12th birthday! My little baby is twelve years old. TWELVE. And what did mama do to celebrate? Why threw her an awesome Frozen party complete with Princess Anna's Coronation dress for my little Princess. She. was. too. adorable. If I do say so myself. And I made her chocolate pudding with whipped cream and even let her have about a teaspoonful. Because I'm finally acting on what I say, I want Tess to have a great QUALITY of life, not just quantity. And once in a while, that even means risking an aspiration pneumonia on your birthday in order to taste something delicious made just for you. When her eyes lit up and she started grabbing that spoon trying to get More! Faster! It was all worth  it.  And I can say that now because she didn't get sick.  Phew! *wipes brow*


Princess Anna with Elsa and Olaf


featuring Oreo as Sven ;)


Let's see.  Oh yes, amidst the daily crazy I got to go with my Yaya to see the one, the only, Glennon Doyle Melton *cue angels singing from Heaven* when she spoke at the Old South Church on Boylston Street in Boston. I LOVE her! If you haven't read her blog, Momastary, or her book, Carry on, Warrior, then all I can say to you is CHOP CHOP! Get on it! So. Good.

Kellie, aka, Yaya, Glennon, and me! :)


The next day I left my Yaya and met up with the hubs and Tessie to take her to her appointment in, where else...Boston, you know, the place I had literally JUST BEEN not twelve hours prior, for her infusion of bone strengthening medicine. While this was already on the books, I did call the day before to question whether or not she REALLY needed it. After all, this stuff is heavy duty with some fairly crappy side effects and I was having major guilt about injecting Tessie with something that was going to most likely make her feel terrible after.

Ugh.

The constant battle between helping and hurting Tess. So many times the help has to come with the hurt, and as a parent, it's unbelievably heart wrenching to make those decisions for her.

But I digress.

I was told in no uncertain terms that Tessie's bone density scan came back and that she most definitely needed the infusions.  Roger that.

We got Tess to her appointment and the nurse struggled (as almost every nurse does) to find a vein to insert the IV into. While I had to look away lest I get a tad whoopsy feeling, my little warrior girl giggled and giggled as that needle dipped and bobbed trying to hit the vein. Of course it helped that the nurse was a riot, they had her favorite movie playing, a warm blanket on her, and Oreo snuggled right up with her on the bed but still...I most certainly never feel like giggling when I get a needle in the arm, and I don't think any amount of "comfort" things would help me feel like laughing.  I tell ya, this kid constantly amazes me.


getting her infusion...happily

The infusion took just a little over three and a half hours then we were sent on our way. Tessie did great and all that afternoon into that evening I was thinking that for once, Tess was going to catch a break and not get the side effects that so many do.

When will I learn?

Around midnight Tess started fussing and her o2/heart monitor was alarming. When I got up to check her, I noticed her high heart rate, around 150, and decided to check her temp. 101.6. She was also very clearly in pain. We had been warned about all of this and told that it was all normal side effects so I didn't get too worried. I mostly just felt very guilty because I had agreed to the medicine that was now responsible for her misery. Hurt to help.  It has to be this way but it sure does suck.

feeling like total crap :(


Tess slogged her way thru it and after about day five, she was totally back to her happy little self. Sweet relief, let me tell you. And bonus, we were on our yearly family vacation in Rangeley. Moosing, speed boat rides, pontoon boat picnics, bowling, strawberry festival, we did it all. And this year, Oreo got on the pontoon boat without any trouble. We joked that she knew it was safe this year where last year, when she refused to get on, we later realized one of the pontoons had had a small hole in it and that Oreo was so smart, she had most likely sensed the danger and was trying to warn us.  The guy who runs the marina was cracking up when we told him.  Good ol' Oreo Cookie.






So now we're back in the daily grind. Tess's seizures seem to be amping back up and I am thinking that it most likely is because she is starting to go thru puberty. Yee haw, cowboy!

And speaking of seizures, I'm about to tell you two things that, without a doubt, will secure my spot as Mother of the Year.

The other afternoon, the hubs and I were sitting out on our deck enjoying the gorgeous weather as Tess was napping like she does about every day, when we heard Oreo whimpering. We both thought that she was whining so we would let her out to be with us and we, rather sternly, told her, "No! You stay with Tessie!".   Cue more whining and more "NO'S!". Then, a VERY panicked sounding whine. The hubs looked over and saw Oreo literally standing, looking and whining AT TESS in her bed. "Is she alerting?!", the hubs sort of yelled as he and I both jumped up and ran into Tess's room.

Yup, as her parents were literally only FEET away (her bedroom is the room right next to the deck that even has two windows that open directly onto it),  Tess was having a small seizure and poor Oreo was all, "A little help, please!".  Have I mentioned how much I love that dog?

Then, today, as I was giving Tess her daily breathing treatment, (nebulizer with xoepenex & hypertonic saline, chest vest, cough assist, suction and flovent inhaler), I noticed that she appeared to be, maybe, possibly, having a small seizure. I assessed her as much as I could but decided it wasn't serious enough to stop all of the treatments that were happening. That's right, my friends, I just kept mercilessly on. At one point, I did decide it was looking serious enough to start dealing with the seizure rather than the breathing treatments and I did remove the nebulizer mask and shut down the vest but then she came out of it and smiled at me. Back on went the neb and the vest fired back up.

I know it sounds harsh, but by now I can prioritize pretty efficiently and quickly what needs to happen and when.

Besides, to be honest, days like that are pretty much business as usual when you live here in Casa Del Cray Cray...  ;)





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