Planning our next round in Cincinnati

We have multiple appointments that we're working to get on the books.. multiple appointments and also multiple procedures.

Most the procedures Annabelle needs performed will be done while under anesthesia, so our mission currently is to work on the coordination of that.

I called Dr. Putnam's office to speak with our GI / EoE Clinic Team and schedule our next upper and lower endoscopy. They informed me that Dr. Putnam is pushing Annabelle to the Neurogastroenterology and Motility Disorders Clinic.. we discussed this before but I just wasn't quite prepared with the fact that we would be exploring more Gastrointestinal disorders. I knew it was happening, it just sucks to face it.

Our doctor at the Motility Clinic has already ordered tests for Annabelle. The first of which will be an outpatient procedure (that the nurse over the phone warned me, she will HATE). It's called an Anorectal Manometry. Annabelle will be awake as they insert a camera, balloon and tube into her bottom. They'll inflate the balloon at various places thru her colon and large intestine to measure the strength, sensation, movement and reflexes she has to what would feel like stool. If she doesn't respond to the balloon, than we know there is a problem that lies in that specific portion of her intestine / colon. They'll then move to another portion and keep testing. The procedure takes approximately an hour but this will give the doctor an idea of where her body isn't working and allow him to pinpoint which areas he will treat.

The next procedure the motility specialist wants to perform are botox injections into the anal and rectum sphincter to promote the nerves to begin to move and function again. This procedure will be performed under anesthesia. Before he can begin though, he will also dilate all the problem areas to ensure the botox is reaching each area it needs to work.

Other tests that will be performed while Annabelle is under anesthesia are the Muscle Biopsy and also Upper Endoscopy. Therefore, it's taking a lot of leg work to coordinate three surgeons for one patient at the exact same time: Gastro, Motility and General Surgeon.

Those are our main procedures (so far) that we need to perform during our visit. However we are also scheduling with:

• Human Genetics to discuss the exome genetic testing. AK and I will be tested as well as Annabelle during that time. I'm not certain what those outpatient procedures are quite yet. 
• Dermatology for the bumps and rashes all over her skin
• Sleep Clinic to follow-up from the sleep study we performed in April. I know this doctor also wants labs performed and belle will require some cardiology tests before starting the medication they want her on (if we choose that route). 
• Cardiology for an EKG and Stress Test, this is a requirement before the motility team can perform their tests
• Neuromuscular as a followup from our last visit and to discuss the muscle biopsy that she is ordering. Dr. Tian strongly believes still that we are nearing either a Mitochondrial or Metabolic diagnosis. I hope this muscle biopsy gives an answer.
• Motility Clinic in the beginning of the week so they can meet Annabelle in person and also talk with us about their plans for the week. We will have a follow-up at the end of the week to discuss all the findings and how the surgery went etc.
• and of course, Gastroenterology. We will consult with Dr. Putnam before and after the surgery and when the biopsy results come back. We are praying that our numbers are going down and the EoE isn't progressing more than it showed in April. Our instructions (since we are in the middle of a lot of testing) were to do nothing with Annabelle and pray with everything we have that the EoE remains calm until we can get our testing completed and figure out what is going on.  

So while we are trying to work and coordinate these appointments, we are also working full steam ahead at home re: Annabelle beginning school. Her team at Cincinnati was quite frustrated about the school not honoring an IEP, so I have been digging into my own research on what I need to be fighting for when it comes to Belle academically. Fortunately, we do have the blessing of an entire nursing team behind us here at home. The nursing agency our nurse works with is wonderful at advocating for their patients / kids, so I have leaned on them a bit for guidance. So we'll see where that takes us :)

For now, it's been school supplies shopping... 36 glue sticks, 60 pencils, 8 composition notebooks, (Im seriously not kidding on any of those) and of course, new school shoes!

Our appointment with the school is next week and hopefully by then I would have heard from the hospital about a date when we will return to Cincinnati. I just hope it isn't around the holidays again..