GI Doctor do-over

I find it hard to believe that any where on earth could suck more than this particular doctors office.  The first guy I saw treated me like a hysterical mother and ignored my concerns.  The last time I went to this office he kept me waiting over an hour and then sent me to the lab to get Emma tested for a gluten allergy, I asked if I needed a referral and he said "no, because I'm sending you".  Then when the insurance rejected the claim stating that I needed a ..... wait for it.... a F#$&* REFERRAL... he denied ever sending me to the lab and never returned my phone calls.  Jerk.

Why on earth would I go back there you ask? I'll give you a three letter explanation, H.M.O. This is our in network spot, fabulous. I can hardly wait to switch to a PPO. This time was almost as stellar as the last time. I had to wait an hour and twenty minutes in a microscopic, featureless, toy less, non-child friendly room (keep in mind we are at a CHILDREN's hospital). They had 2 patients scheduled for the same doctor at the exact same time. How completely obnoxious and unforgivably inconsiderate! Your right, I couldn't possibly have anything to do other than sit around and wait for you to grace me with your presence. Needless to say the GI do-over was less than sucessful. I am somewhat amused by the shock to my less than cordial greeting. The doctor came in I smiling and perky "Hi! How we doing !". Me: "we are great! I love being forced to wait over an hour for people" 

EEG Número Dos

We are all still recovering from our second round of EEG. This one was better,and worse, than the last time in some ways.

It was not 48 hours long like last time,thank god. So Emma didn't have to walk around with all those wires glued to her head, we didn't have to plug her in to the infrared camera during meals, naps and bedtime and she didn't have to carry around a battery pack and recording device secured to her waist.

This time her EEG was only an hour, yay! But she had to be sleep deprived, wait, what! Boo! That sucked!! The saying "don't wake a sleeping baby" exists for a reason, they HATE it. 

She was mad when Manny & I yanked her from her peaceful slumber at 2am, but recovered fairly quickly and was slap happy until about 4am. At 4am she was finished with our shenanigans and wanted to go to sleep. We spent the next two hours passing her back and forth deploying various keep the baby awake methods while she cried and loudly expressed her displeasure with our behavior. 

We got her to the hospital and they quickly applied the electrodes and thankfully they turned off all the lights and she was allowed to go to sleep. I got a little upset sitting in the dark holding her tiny little hand as she slept, thinking about all the things she had to endure so far in her 2 years of life and how unfair it all is.

The hour passed pretty quickly and unfortunately for Emma they wanted to evaluate how her brain would react to strobe lights so she was awoken to obnoxiously bright flashing lights. Poor baby 😩 

After a few minutes it was over and she was unhooked and we went home. The sleep deprivation threw her off for the rest of the day. She threw up as we left and a few other times that day. She she is getting back on track now and we are praying that the results will come back this week free of seizures.

 

1,680 miles later...

My summer has been such a whirlwind that I really don't know where to begin! I have spent the entire summer crisscrossing the United States for various reasons dragging my precious babies with me!! Thank God they are good travelers, well, mostly.

First we were in NY, as I mentioned before. Some parts were hard but the trip was mostly great.

One thing that sucked was people telling me that "she'll grow out of it and be just fine". Ummm, no. You can't grow outta Rett.

 People also talked about all the things that she'll do when she is older, things that typical children do and that is hard for me to deal with. I know that they just are being hopeful and optimistic... I think, who knows maybe it makes them feel better. However, as much as I want to believe that there will be a treatment soon and that she will be able to do more things and have more opportunities it is a quite hope that I keep close to my heart and don't let it run around unchecked.

I HAVE to keep it in check so that I can live in the reality of today and the daily grind of doctors and therapists and sensory diets and cutting up food into bite sized pieces and worrying bout her weight and worrying that I not paying enough attention to her brother and finding ways to pay for therapy. 

I have to find a routine, some kind of normalcy and comfort in my life that isn't tied to how I thought it would all work out. I would hate my life if I lived all the time talking and thinking about how I hope things will be different later. I can't even imagine how Emma would feel if I spent all my time around her talking about how I hope she will be different later!

Nope, I choose to except our life together as it is and to just enjoy her just the way she is beautiful, sweet and full of life.

I do desperately hope someday that someday soon there is a treatment while she is still young so she can some semblance of the childhood I hoped for her, and that someday there is a cure. This hope drives my participation in fundraisers like the stroll-a-thon and my own fundraiser that I am working on to help fund research. It is even tempting me to join one of those marathon training things so I can get in shape and possibly join the Rett Racers and believe me, THAT is some powerful hope right there! The only other thing that would get me to run a half or full marathon would be if I were being chased by a hungry Bengal tiger and even then I might say screw it and quit!! I digress... so I do have hope, and I am optimistic but I have to live in the now, otherwise I think that I would spend each day heartbroken and miss the joy of seeing her smile and hearing her laugh and watching her with her brother, whom she clearly adores ❤