Sunday, December 5, 2010

Abby , Me and Reality

Wow what a weekend. Just be prepared that this post may go on forever.

Since March the Rett Monster has been rearing it's ugly head around here and we have been putting Abby through so many tests and procedures.

Her stomach was the first issue. Abby has some pretty severe GI issues that are common to Rett...The one thing I think we, as Rett parents hate to hear is that,"It's Rett.". We don't care if it's Rett. Fix it. Now! I I really feel that if a girl has Rett so many things are poo'd off or ignored that could be dealt with and fixed. These are the same Dr's that diagnosed our daughters and tell us to take them home and make them comfortable. When we bring them back in they treat us as if we are bringing in that lame dog we picked up at the pound. We knew it would have problems. Why do we keep bothering them with this?

I will say that we don't get this from Abby's Pediatrician. Not at all. But we do get it from the specialists here. I think the Neuro knows Rett but is basically an Epilepsy doc. ER's,Ortho,Surgeons,GI's. just don't know Rett and between us and her Ped and a friend we came to the realization that she needed and the Pediatrician needed a Rett doctor for Abby.

In the last few months Abby had also started having sleep issues again, She was having tremors,night terrors,waking in the night. She was having severe pain and panic attacks during the day. I have always fought off any kind of neurological medicine or anxiety medicine for several reasons. First out of the fight I have in me that I can help her. I can fix it. I almost killed her with that when she stopped eating. I sometimes forget that I am fighting an invisible monster here. Rett Moms cant kiss the boo boo's and send them on their way. The hurt that comes from this is unimaginable for those who don't deal with it.

Her breathing issues needed to be addressed. The Apraxia that stops her from taking that next breath can be anxiety induced too and I needed to face that. Having to leave her at home or not being able to participate in any kind of life because it would be too stressful for her was letting Rett win and I can't do that anymore. I needed to get off my Homeopathic hippie bandwagon because I wasn't helping her and that is my ONLY mission in life.

Through a friend I was introduced to a Doctor in New York. Her name is Aleksandra Djukic. It started with my friend emailing her a question for me when a GI here put Abby on a Neuropathy med to help with her GI issues. Within a few days we had plans to come to New York to see her and the paperwork and record gathering began.

A few days before the appointment I sent Dr Djukic (Sasha) a link to this blog and Abby's videos. She sent a little note back that she had seen these videos before and couldn't wait to meet "The Princess"

I will save the what I think about New York blog for later but now on to Sasha.

To say this woman is amazing would be the understatement of the millennium. We were there about 15 seconds when she came rushing out to the waiting area to greet Abby. She talked to Abby, she hugged her, she kissed her. When we went back to the office she explained to us that she had been using Abby's videos in her lectures about how intelligent Rettgirls are for 2 years. She hadn't realized that this was the same child she was about to see until a few days before we arrived. I was stunned.

She explained Rett to us in a way that even I never actually understood. She explained treatment and the coming cure in a way that I never understood. Our cure is coming! I had always been skeptical. Hopeful but careful. It is coming!

She tested Abby on a My Tobii device. I had to put my face in the back of Abby's head so I didn't see anything that was going on until I got the video by email when I got home. My daughter is brilliant. Her brain works so much faster than I thought it did. Her memory and concentration and comprehension are there. Right there! I saw things that I think Sasha didn't even see. When she would put Dora on the screen and put a different picture up Abby would look where Dora was before...she is her favorite character. I could go on all day about this one. I have never really fought for something like a My Tobii before because they are so incredibly expensive and I am apprehensive about anything that I think she can't use or would fail at. Abby must have this device and the fight is on!

We decided to put Abby on an Anti Anxiety/Depression med. It's time. I myself have suffered from depression and anxiety since a child and I don't have Rett. Meds help and I should have realized that a long time ago. I have problems living in my own brain and body and I have a voice and a body that works! Imagine how my Abby must feel!

We doubled her Melatonin for sleep and may even triple it. Abby slept better last night than she has in 2 years.

We are taking her off Miralax and putting her on a gentle baby motility drug because Abby's little body obviously can't handle Miralax.

We are changing up her therapies. If I can't get more at school I will do it myself at home. Use it or loose it. Neurons that fire together grow together, branch and work!

Now for the pics. I could have done the standard few pics and a sentence blog but it would have never done this visit,this doctor and her hospital justice. I am forever grateful for everyone that made this happen!

Me and Abby outside of Montefiore Hospital. That's us to the left!

Meeting the best Rett Doctor in the world!

One posed pic and off to work!
Studly Mcmuffin pic walking with minimal assist!

Sasha is so proud of her Princess!
Wow! So happy! Off for a tour of Manhattan then dinner with friends and a tour of the Museum of Art!

Stay tuned!


Jerimarie Irby said...

Terri ~ What an amazing trip! I am so excited for you and Abby and the connection that this trip has brought! Can't wait to see you both thrive with all this information.... Love you both!!!!

Ann Marie said...

Wow. What a great visit. I have been so tempted to take Abby to a clinic (I was think about Katie's Clinic). We see Dr. Percy for the study, but I want a more comprehensive visit with more follow-up. We are in Louisville, Ky. There's nothing close, unfortunately. Will you continue to go to their clinic or was this more like a consult? I'm looking forward to hearing how Abby tolerates the new meds. That's so exciting about the eye gaze. She's one smart little girl.

Anonymous said...

YES!!!! So glad you had a GREAT visit and yes, you are right, to say Dr. D is amazing is a huge understatement!! Love her and her tireless efforts for our girls. So glad you got so much accomplished!!! HGUS!!
Bridget and Annie!

stefanie (christopher) gutierrez said...

come back. i miss you you two.