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.

 

Fundraisers

So.... I'm hosting my very first fundraiser. I don't even know what to say after that....

I am losing my fracking mind trying to do this!! Who knew it would be so stressful! It's not like a birthday party where you have it at your house and pretty much know who's gonna show up. Nope, I am paying for a space and food hoping to God that at least our birthday party regulars come. I am not sure I am gonna break even let alone make enough to pay for the lawyers we need to set up her accounts, pay for therapy after early intervention ends or buy her equipment that she needs! 

I was also informed that you generally have raffles and whatnot at these shindigs. How do you know what the heck people will want? How do you get the stuff to raffle off? My fabulous sister-in-law donated a pair of Notre Dame vs. NAVY tickets, will people like those? Will they like any of the other stuff? Who knows! STRESS! That's the word of the day! Luckily my husband is uber helpful. He keeps telling me that I should have an open bar because no one will come if we don't have an open bar! Thanks for your help! I love ya, but please, stop talking babe!!  So, needless to say, I'm worried. I don't want this to be a flop. I'd love it to be something that grows and one day can not only help my daughter and provide some money to research but significantly help several girls and their families as well as research. I know there are other girls out there that may not have much of why they need. I'd love to be able to change that. However, right now I am hoping that I won't be doing dishes at this place for the rest of my life to pay off the bill!! 

I'd really love to be able to get enough donations to make a nice contribution to the International Rett Syndrome Foundation. I plan to donate something, even if it is a small amount, but I'd like to give a nice donation. I am so excited about the research that they are funding. A paper was published recently that once again proved that the symptoms of Rett can be reversed in our girls!! Using gene therapy they were able to increase MECP2 production by 15% and reverse or significantly reduce the symptoms in fully symptomatic female mice. How exciting is that!! I am so hopeful and pray to God that the cure comes soon. 

2,480 miles later

My belief in the medical field is almost nonexistent at this point.  We took Emma to the Rett Syndrome clinic in Minnesota it was a wonderful experience.  The people that work there are wonderful and the doctors were fantastic.  

I brought with me the medical records, x-rays and reports from her regular doctors office in Illinois.  They reviewed the records and x-rays.  When they put up the x-ray of her back I about died.   I must have looked like I felt because the doctor in Minnesota looked at me and said "oh, is this the first time you are seeing this?"  Why yes, yes it was. EVEN I COULD SEE the CURVE in her SPINE!!  Seriously!  These were the records I brought with me, taken months before!! I was floored, I almost burst into flames in her office.  It was all I could do to contain my self and not completely spaz out in front of an office full of people.  I can see the headline now "Psycho Mom Freaks Out in Children's Hospital".  

Between the doctors who told me: 

• "95% sure she did not have Rett": her developmental pediatrician  (oops, she does), 
• her GI doctor that treated me like I was a hysterical mother and then LIED about referring me to the lab causing my insurance to come after me  (the file later showed him to be full of crap), 
• the on call ER doctor that blew me off and told me not to come in when I told her Emma was puking and lethargic by responding "its night time, babies are supposed to be lethargic (Emma was hospitalized the next morning for 4 days she was so dehydrated they almost had to shove the IV in her neck), 
• pediatricians who told me I was over reacting and that "all children develop differently" 
• Physiatrists that miss curves of the spine

I don't know why anyone listens or trust anything these people say!  It seems to me that if you have a need beyond the common cold or a an immunization you are screwed!!