Feast Your Eyes On The Longest Post Ever

So, 10 days away from the last post. I hate going long stretches of time, I really do love documenting and writing the day-to-day of our crazy life. I've always been a strong believer in not using the excuse "there's just no time... you can always find a way to create it if it's important enough to you..." but for the first time in my life all the "creating" I used to do just has no place left on the 24-hour time clock!

Let's see, last Monday, Anna went to see her ENT and we finally scheduled her ear tubes surgery for today... I had 14-pages of medical clearance to fill out, including lists upon lists of her medications, then took her to her pediatrician for final clearance, then filled a special prescription she needed for her respiratory system to be able to go under anesthesia, and then, after a beautiful day out at the park yesterday, Anna spiked a fever, went into hours of tremors, threw up her dinner and tons of mucus, and by 6:30 last night she was completely weak and exhausted. We gave her the nebulizer with all of her preventative medicines and she fell asleep by 11. One call to the doctor to let him know what was going on and within minutes, two-weeks of surgical prep went down the tubes and it was cancelled.

I woke up this morning to a text from my mom: "I have prayed today that God takes our bucket of lemons and makes lemonade for us to have a good day."

Such good words to wake up to, especially when the prayers worked, because Anna woke up in a wonderful mood, with her fever and tremors gone, and her appetite back. Perhaps we will try to re-schedule for a few weeks from now...

Last Wednesday, we went to see the gastroenterologist our geneticist said would be the best for Anna after we were diagnosed with Rett Syndrome. I spent a good four weeks calling his office every Monday and Friday morning (the Friday was a "courtesy call" incase they lost my previous 18 messages) because his wait list for an appointment was over 7 months long and was currently closed to accepting new patients. I don't know if it he was just purely tired out from seeing the same message from the same crazy mother, or if our genetic counselor called on our behalf, but a few weeks ago he called me, asked for Anna's story, and after hearing it, scheduled us for the following week.

I can see why his appointment schedule was so backlogged. I can see why it was worth one recommendation from our geneticist to call him. He was purposely put in our path for last week's appointment. Although it wasn't the news we wanted to hear, it was what we needed to hear. He sat with us for over two hours, explaining, answering questions, showing us diagrams and equipment, and gently telling us his recommendation that Anna would very much benefit from a feeding tube.

Aren't those scary words? Doesn't "feeding tube" sound so awful? Images of fat plastic tubes being forced down your throat come to my mind, and my neck actually stiffens when I try to imagine how much that would just, well, plain suck. But what he showed us for Anna was completely different. He showed us a diagram of the "new" non-invasive procedure and the tools it required. He showed us a "button" that would be on the outside of Anna's belly, and how far "feeding tubes" have come in the last decade. He showed us how people wouldn't even know Anna had one, because the button will fit under her shirt and how it was the most cosmetic of the ones available. "Cosmetic" certainly wasn't the word that came to mind when I used to think of feeding tubes.

We've been digesting the news (no pun intended) and the progressive step it would be in helping her have the best quality of life. I was very happy to hear that she would still be able to eat and drink. The feeding tube would be more for us to supplement her nutrition for when she doesn't feel like eating, gets sick, or may begin to regress. Countless times we've taken Anna to the hospital to be re-hydrated, and there's something innate with this syndrome that makes feeding so incredibly difficult. I've spoken to Anna's other specialists and they seem to all agree that a feeding tube will benefit her greatly. I brought up the holistic argument, the natural-based argument, the is-this-the-easy-way-out argument, the will-I-feel-guilty? argument... I have felt every inner conflict I think is possible over the past week. I find myself taking pause and looking at the smooth skin over her tummy and feeling upset that I'm on the verge of making a decision that will put a barrier in its beauty. I've kissed her belly more in the past week than I have in her life. And I notice more now than ever the hardness from her air swallowing and breath holding. My pointer finger can lightly touch the sides of her belly and it resonates like a drum.

I feel like I spend my life accepting. Ok, I've accepted Rett Syndrome (or haven't I?) Ok, I've accepted when she gets sick, she gets very sick. Ok, I've accepted she isn't like any other baby her age. Ok, I've accepted......... Not ready to accept feeding tube. We leave for the Rett Center on April 28, and we see a gastroenterologist there as well as a few others. We are waiting for that fifth opinion to see if they also agree. Our doctor here in New York was fantastic and entirely understanding that we needed some time to mull it over, and he said to call us if and when we ready. The sign of a good doctor.

Thursday we saw Anna's physiatrist who was very happy with her progress, especially her head and trunk control. We're having some adjustments made to her ankle braces, so I think she is enjoying a few days off from her "magic shoes."

Friday, I worked in the morning and Daddy took Anna to have a routine EEG and all seemed normal. Great sighs of relief.

Saturday, we got our taxes done and cousin Adam came to visit. Nothing better than big bear hugs from family!!

Sunday, I worked.

Monday, Tuesday, Wednesday, Thursday, today... Therapies and a big meeting with the State - Anna's six-month review! We got an increase in her therapies as well as a ABA therapy, a special instruction of sorts for really special kids, and Anna got it. We are very excited. (And I am somewhat managing to schedule most of them in the mornings so we can have summer afternoons in the park with Gabe.)

A big change this week was also the addition of our new help in the mornings! We found someone from a friend's recommendation that can come Mondays through Thursdays from 8-10:30 in the morning to help me with Anna and Gabe. Our new helper has been such a Godsend... She takes care of Anna for those hours while I am able to devote time to walking Gabe to school (he has been loving the time we've had, and I am loving it, too), does some light housekeeping, and if I need to hole up in my office for a few hours, I can. It's been wonderful. Lately my workload has been pretty heavy so it couldn't have come at a better time.

So, who is still reading?? I realize this was such a huge update and if you haven't jumped to the bottom than you deserve a prize!!

Ok, one more thing... I also spoke to a regional representative from the International Rett Syndrome Foundation, and she was quite helpful. I see us becoming involved with the IRSF on the horizon, as our path straightens out a bit. Right now, it's one step at a time, one day at a time, and taking pause when Anna laughs, or bugs her brother, or tells us something special in her own little way.