It's been 8 weeks. Eight solid weeks since Arley has been healthy. I don't know what the problem is, or why her immune system has been attacking lately. She has been sick with literally six different diagnoses (some of them twice) and I wish I could say it's an exaggeration, but it's not, I have witnesses.
We have had to cancel our trip out to Boston for scans and testing four times now. Each time we reschedule I think she couldn't possibly be sick by the time the new appointment rolls around, but without fail, every.single.time she is under the weather and the anesthesia protocol won't allow her to be seen and rightfully so.
The struggle is definitely real. If I could put her into a bubble I most certainly would, but that's not a life for a spirited six year old to lead. All the hand washing in the world, isn't going to protect her. Its times like this where I feel that homeschooling would be the wisest choice, but I refuse to deprive her of a normal childhood because of her health struggles.
Regardless of anything though, she is your typical first grader. She's in her third year of dancing and surprisingly was able to perform in her dance school's winter recital two weeks ago before getting sick yet again a day later.
People often comment to me that they 'don't know how I do it.' Shit... I don't know how I do it either. It feels as though I am constantly just going through the motions and trying to keep our head above water long enough to avoid any hospitals visits. (We've been unsuccessful twice now) It's a constant inner battle of oneself to always make sure I am doing the right thing when it comes to her. Wondering if the environment she lives in is hurting or helping. (New England weather versus the Midwest or Southern states where the temperature is drier or warmer) I swear if I won the lottery tomorrow I would buy houses in different climates and see if that helps solves part of the problem.
This whole experience has been exhausting as of late. Stressful too if I'm honest. Nothing however that I can not handle, or have handled in the last six years and will continue to do my very best to help her live as normal of a life as humanly possible.
Here's hoping 2018 provides some much needed relief in the health department and that things improve relatively soon. For now, that's my only update. Until next year...
Tuesday, December 26, 2017
Monday, September 11, 2017
Hello Again
So it was never my intention to not have posted a single update in almost a year, however things have been quite a whirlwind for us and I got tired of people asking for updates and never having anything to report. Trust me, I have been pissed off enough for the both of us.
When I provided you with our end of the year update for 2016, we were just a couple short months away from finally getting answers to the blood in Arley's urine issue we had been going back and forth on, and the day approached to where she would meet with one of the head urologists at CCMC and we would finally get the ball rolling. Only, he never showed up to our appointment.
Yes, that's right. Arley and I went to that appointment both of us incredibly sick. So much so that we had to wear masks the whole time we were there. You should have cancelled the appointment! Yes, maybe we should have, but by then we had already been waiting nine months for some type of answer and were desperate to keep the appointment. That and I was under a lot of heat from my job. So we went, we waited. Time passed and it was over an hour after our original scheduled appointment where someone else walked in and said they would help us. I declined. We were there to see the top dog. The one who would be able to provide us some type of insight as to what has been happening. I didn't want someone who was second fiddle, even if that person was just as qualified. We were told we HAD to see this doctor because nobody from Urology or Nephrology could help us. Fuck that shit.
And I did. I lost my shit on the poor soul that was sitting at the reception desk. We should have been home resting, sleeping, trying to get over what we had, but it had been far too long since we had any answers to what was happening that I risked more sickness or hospitalization for some simple answers. That was the day I cut our ties with Connecticut Children's.
No longer did I feel as though that hospital was adequate enough to solve our problem. It had gone on way too long, went through too many doctors, nobody kept proper notation of the urine samples that Arley had provided and we kept having to start over fresh at each appointment. My blood was boiling and I had had enough.
I called up the office of my daughters Oncologist in Boston. She too was shocked that this was still going on and invited us up to Boston for a checkup. Upon going to Boston she informed me that she wanted us to see a particular Urologist, but that it would be easier for us to visit him at his main hospital rather than his partner hospital.
So we waited. In the meantime work was giving me far too much pressure due to my absences. They knew upon hire the situation with my daughter, and yet they tried to use it against me. I held on. I was not going to give them the satisfaction of making me feel like I had to roll over. As the HR guy even admitted himself "We knew of your situation and we hired you anyway." Yes, you did. So don't try to sit there on your high horse and put me into a corner.
(Thankfully a huge blessing regarding work was just over the horizon, but that's an update for another blog post)
Moving forward we met with the new Urologist and discussed what had been going on for the last 10 months and I felt confident we were moving in a positive direction, however he wanted us to meet with a GI doctor friend of his too. Sigh... this was starting to become ridiculous.
Nevertheless though we went to meet with the GI doctor and it was like finally seeing the light after traveling through a never ending tunnel. He had a hunch that would need to be followed up with blood work and I had some researching to conduct on Mr. Google to see if his thought process matched up at all. It did.
Got a call from his office about a day or two later saying that Arley's blood work came back with her levels slightly elevated and we would need to go for additional blood work sooner rather than later to confirm officially with the pediatrician.
Met with the pediatrician and she wasn't yet sold on what the new diagnosis could be. Arley's levels weren't astronomical, but definitely warranted a retest for sure. If that too came back with an elevation then we would finally have the confirmation we needed and be able to plan accordingly Arley's life moving forward.
For now, we wait for her second blood draw and see what happens. Until next time friends...
When I provided you with our end of the year update for 2016, we were just a couple short months away from finally getting answers to the blood in Arley's urine issue we had been going back and forth on, and the day approached to where she would meet with one of the head urologists at CCMC and we would finally get the ball rolling. Only, he never showed up to our appointment.
Yes, that's right. Arley and I went to that appointment both of us incredibly sick. So much so that we had to wear masks the whole time we were there. You should have cancelled the appointment! Yes, maybe we should have, but by then we had already been waiting nine months for some type of answer and were desperate to keep the appointment. That and I was under a lot of heat from my job. So we went, we waited. Time passed and it was over an hour after our original scheduled appointment where someone else walked in and said they would help us. I declined. We were there to see the top dog. The one who would be able to provide us some type of insight as to what has been happening. I didn't want someone who was second fiddle, even if that person was just as qualified. We were told we HAD to see this doctor because nobody from Urology or Nephrology could help us. Fuck that shit.
And I did. I lost my shit on the poor soul that was sitting at the reception desk. We should have been home resting, sleeping, trying to get over what we had, but it had been far too long since we had any answers to what was happening that I risked more sickness or hospitalization for some simple answers. That was the day I cut our ties with Connecticut Children's.
No longer did I feel as though that hospital was adequate enough to solve our problem. It had gone on way too long, went through too many doctors, nobody kept proper notation of the urine samples that Arley had provided and we kept having to start over fresh at each appointment. My blood was boiling and I had had enough.
I called up the office of my daughters Oncologist in Boston. She too was shocked that this was still going on and invited us up to Boston for a checkup. Upon going to Boston she informed me that she wanted us to see a particular Urologist, but that it would be easier for us to visit him at his main hospital rather than his partner hospital.
So we waited. In the meantime work was giving me far too much pressure due to my absences. They knew upon hire the situation with my daughter, and yet they tried to use it against me. I held on. I was not going to give them the satisfaction of making me feel like I had to roll over. As the HR guy even admitted himself "We knew of your situation and we hired you anyway." Yes, you did. So don't try to sit there on your high horse and put me into a corner.
(Thankfully a huge blessing regarding work was just over the horizon, but that's an update for another blog post)
Moving forward we met with the new Urologist and discussed what had been going on for the last 10 months and I felt confident we were moving in a positive direction, however he wanted us to meet with a GI doctor friend of his too. Sigh... this was starting to become ridiculous.
Nevertheless though we went to meet with the GI doctor and it was like finally seeing the light after traveling through a never ending tunnel. He had a hunch that would need to be followed up with blood work and I had some researching to conduct on Mr. Google to see if his thought process matched up at all. It did.
Got a call from his office about a day or two later saying that Arley's blood work came back with her levels slightly elevated and we would need to go for additional blood work sooner rather than later to confirm officially with the pediatrician.
Met with the pediatrician and she wasn't yet sold on what the new diagnosis could be. Arley's levels weren't astronomical, but definitely warranted a retest for sure. If that too came back with an elevation then we would finally have the confirmation we needed and be able to plan accordingly Arley's life moving forward.
For now, we wait for her second blood draw and see what happens. Until next time friends...
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