Friday, April 10, 2015

8 Months Old!

Abby is 8 months old today! Other than medical/therapy appointments, and the frequent walks around the neighborhood, we have now ventured out in public with her twice!!! Which I am unbelievably proud of. She has done so well lately, enjoying her ability to experience the world at increasing frequency. She is currently most fond of kicking her legs and flapping her arms like the little birdy she is, as well as cuddling her stuffed animals and splashing in the tub. She is not overly fond of any attempts at feeding or having the bright sun shining in her face!

This past weekend brought Easter celebrations, and the Locklear clan along with them! The weather held out, and we had a really nice time hanging out with family!

This past week also included an interesting cardiology appointment, which I'm honestly not sure what to make of. On one hand, Abby seems like she's doing well.  She isn't exhibiting symptoms of heart failure - she's happy, energetic, and growing like a weed (16lbs now!). However, the other hand reveals that the obstruction caused by her hypertrophy is a fair bit worse. For now, because she's asymptomatic, we will continue to control the effects of her HCM with medication - but when the time comes that she starts exhibiting symptoms, we will have to address the possibility of another heart surgery - which had not been on our radar.

There are two possible surgical prospects: the first is a myectomy, where they shave down the overgrown muscle, temporarily eliminating the obstruction. The procedure does not stop the muscle from growing back, so is not recommended unless the hypertrophy is causing a serious problem. We had previously been told that they don't really send kids for this surgery, but it turns out, if the conditions are right, they may. The other is a heart transplant. When Abby had her first heart surgery, it came to be our understanding that because Abby has a number of health issues unrelated to her heart, that she may not be a good transplant candidate. For now, we just watch and wait.

I feel as though I'd been doing a pretty commendable job of not living our day to day as if the other shoe were about to drop, but in these last few days it's been a struggle. I hope that Abby continues to thrive, but it's hard knowing that next week it could be a different story. Or maybe not next week at all, maybe in a year, or five. We really just don't know.

On other fronts: Abby will have her follow-up 3D cranial CT scan in May, and meet with the neurosurgery team at the beginning of June. Hopefully at that point we will have a better idea of the timeline for her next cranial surgery. We're keepin' on keepin' on with the helmet until neuro/plastics advises otherwise. GI issues continue to challenge us, but these may just need time to resolve. We are on maintenance status with neurology, pulmonary, and nephrology right now, and will have another appointment with ophthalmology early next month. OT, PT, and Speech have been very helpful in aiding Abby's development. Though it's a lot of work for all of us, I truly believe they've made a noticeable difference. 

I'm pretty sure I missed something in there. There's a lot.

To complicate matters, we just received confirmation that we will be moving in the Fall. We knew it was a possibility, but so was next Summer. Yet, this Fall it is. Trying to recoordinate all of Abby's care at a new location is going to be a doozy - a task I am not looking forward to at all. We have a couple of ideas regarding where we might be headed, but it's just too early to know at this point. I sincerely hope that we are able to find care for her as exemplary as that she's already received.

The girl at Starbucks gave me my drink today for free, so there's that. :)


Thoughts from Jameson:

Each day I think a little bit about how we got "here" and what "here" is. "Here" is a place that I can forget the past in. But it's also a place that fear of the future can come rushing in with the slightest provocation. Right now every smile and giggle has the ability to make me burst with joy and slay my heart with fear. I'm so scared of getting more emotionally entangled with my beautiful daughter, because I know what the future holds. At the same time, I can't help wanting to hold her and kiss her smiling face. 
I just want everything for her and I may not be able to give it.
All that said, I am proud to have you in my life, my dear Aberdeen Wren Locklear. I'll provide everything I can for you, whatever it may take.

I'll love you forever, I'll like you for always, as long as I'M daughter you'll be.

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