I hate
to say, but we expected this to happen.
Annabelle
isn’t improving, she’s declining and we are struggling to determine an explanation
for it. There are so many variables involved that could explain her current
condition that’s fogging our judgement on what is to blame. I hate that we
began a new formula during a time she was possibly sick. I hate, hate, hate
that. I expressed my concern when we made the change to Elecare, that this isn’t
a very responsible time to do this but I also understood why it was so
important to switch so quickly.
Annabelle’s
cough hasn’t stopped, we’re now at week three of a persistent cough that has
turned to choking and retching (trying to vomit). Her temperate has been
fluctuating more frequently, and when it does, it happens very rapidly. I am
very reluctant to offer any medication beyond her prescription meds, in fear it
will irritate her temperatures and their erratic movement. She’s becoming more
and more lethargic. She is laying down more frequently – laying on the
couch/bed, not to be confused with sleeping, because that isn’t happening. She
isn’t resting well. Her nights are completely variable if she is up crying in
pain, screaming for help, moaning because she’s uncomfortable or if she sleeps
the night thru and is groggy when woken in the morning.
Madelynne’s birthday
was this past weekend and we all had a wonderful time. We started Friday with Mady's spa day and Annabelle enjoyed herself a haircut beside her sissy. Saturday was party day! Annabelle however
arrived at the party and persistently asked to go ‘Na-night’, AK laid her in
the bed and she slept most the party away. She did wake towards the end of the
party and tried playing for a short bit but it didn’t last as usual. She
retreated back to anyone's arms that were willing to hold her and snuggled as she watched the party
carry on. That evening she spent her time on the couch with no energy and
cuddling with her ne-naw (my mom). Life moves on around Annabelle. She is the elephant
in the room and we all watch with worry and pouring silent prayers as we see this
beautiful two-year old unable to live the life she deserves. I live for the
moments of watching her smile, laugh, dance around and have fun – but they
never last.. not anymore at least. She only has enough stamina to play for a
maximum of 30-45min and then spends the next several hours depleted of all
energy and terribly uncomfortable.
Sunday I made sure Annabelle stayed home with a big set of plans: rest, rest, rest. Do
nothing but rest and sleep the day away. She did just that.
Monday
unfortunately wasn’t a better day. While I spent the weekend with silent worry
while watching my daughter continue to decline, I wanted another perspective..
I wanted our nurse to spend some time with her, I wanted a second opinion, a
skilled second opinion from someone who also spends a lot of time with
Annabelle. It wasn’t a very good report. I missed several phone calls from our
nurse that afternoon while I was at work, each message explained that Annabelle
isn’t well. She’s very uncomfortable, nauseated, lethargic and even her stats
are declining. We began a Pedialyte drip thru her tube Monday afternoon and
have continued to push fluids by tube since she will not drink much of anything
on her own. Her appetite is practically gone. We were challenged with the goal
of three meals a day and two snacks to ensure Belle gets the calories /
nutrients she needs but we haven’t been able to make that goal yet. Saturday
she ate maybe a handful of food and hasn’t eaten anything really since. Last night
I came home with a big, big surprise – I bought her some safe chips and prayed
it would trick her into eating something. It worked. She ate about 4-5 of the
chips and even a few bites of steamed veggies.. not much by any means but it
was something, and for that I pray this is the beginning of a turn for the better.
She drank maybe a cup and a half of fluid on her own yesterday, so that
challenge is raised to two cups today. Fingers crossed!
We just don’t
know what’s wrong. With her auto-immune disease in mind, part of me wonders if she’s
just trying to recover from a virus she may have caught, or if she’s fighting a
cold. Annabelle takes significantly longer than most others to fight anything
that requires her immune system to work hard. My gut on the other hand has a
really hard time not associating this with Elecare. I have read this chapter
before, I’ve seen this side of my daughter far longer than I ever wished and I
know just the moment when this behavior ended – it ended when we stopped
feeding her Elecare. I have been told by so many Dieticians, nutritionists and
doctors that Elecare is the safest nutrition for her and these side effects
should not be associated with the formula. But I have a really hard time not
making this connection. I want a REALISTIC explanation for why my child is so darn
miserable!
I’ve
left messages with our new GI for guidance, I wanted to wait as long as I could
to eliminate any other variables that could explain why she’s struggling but at
this point I think we’ve hit our threshold. Hopefully we make headway towards
helping Belle feel better soon.I have no idea what that may involve, but I know the road we're on isn't working... here we go again - raising, caring and loving a child, completely blind and praying we don't do anything wrong.
Prayers for answers ... please please please.
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