Tuesday, March 22, 2011

Recipe for Success


1. Install Fantastic New Philips Fluoroscopy at Children’s Hospital in Boston. 
2. Have Alexis inspect the assembly of product in advance of the study.
3. Include dash of Happy Mom.
4. Take study and identify that Alexis is CLEAR FOR “Honey-Thick” Liquids.

What does this recipe make?
It makes it so that we can work on liquids by mouth for Alexis. It means we are able to start a journey that we thought we would be on 4 years ago when Alexis had her g-tube installed and we were discharged from the NICU. We’re incredibly happy with this result and look forward to teaching Alexis that she can drink liquids again.

Thursday, March 17, 2011

Alexis Doctor Updates - 2011

So far this year we have managed to drag Alexis to several basic follow up appointments:
January 4:  Orthopedics - nothing new.  Wants her feet / ankles to be stretched more because he feels she is is too tight in that area.
January 11:  ENT - still amazed she has been adhering to her CPAP use for so long.  Also impressed that she hasn't had any hospital admissions for infections (KNOCK on wood!)  He said that basically at any point now, we could request him to schedule the repair of her right sided choanal atresia.  This will be our task to "research" at this year's CHARGE Syndrome conference - how many people have single sided choanal atresia.  Then we will find out which ones have gotten it repaired, what the complications were, when they did it, and whether it helped them eat, breathe and coordinate.
February 3:  GI - Dr was eager to finish diagnosing Alexis' needs with more testing.  Final test that we needed to do was a glucose test which would help identify if she had GI issues.  See follow up at bottom of the page.
February 14:  Genetics - Dr offered for Alexis to be tested with more in depth genetic / genome testing available at Children's Hospital because of $25M donation from Manton Foundation to study rare diseases.  Since we joke that Alexis has her own syndrome, I suppose that is rare enough and interesting enough for them.  
February 25:  GI Glucose Test:  Alexis FAILED a test.  They called it.  What did they have to call?  Well, basically she was NPO (no food) and so they got her an IV, gave her a bolus of sugar water and watched her blood glucose every 30minutes.   So, Alexis ended up spiking to 200 (which is really bad).  They halted the study and told her to behave herself.  :-)  In all seriousness, they were very scared for her.  The GI doctor was paged and they decided to stop the testing.  Matt fed her her normal g-tube food and Alexis' blood glucose returned to normal range.

So, this means we have a new diagnosis.  It's got a great name:  DUMPING SYNDROME
Gastric dumping syndrome, or rapid gastric emptying is a condition where ingested foods bypass the stomach too rapidly and enter the small intestine largely undigested. "Early" dumping begins concurrently or immediately succeeding a meal. Symptoms of early dumping include nausea, vomiting, bloating, cramping, diarrhea, dizziness and fatigue. "Late" dumping happens 1 to 3 hours after eating. Symptoms of late dumping include weakness, sweating, and dizziness.

My understanding is Alexis needs slow releasing carbs to keep her glucose in balance and needs to avoid SUGAR products.  This obviously impacts her diet greatly, given that Alexis actually enjoys sugar.  We will have to find natural sweeteners that don't "undo" the effect of her good diet changes.

This probably explains many of Alexis' high energy and low energy periods throughout the day - truly blood glucose working against her.  We are working with her Nutritionist to see what we can resolve by changing her diet.
Naturally we're not thrilled to add to the list of diagnoses, but obviously thrilled to make sure Alexis has a safe lifestyle.  The sugar highs were obviously quite dangerous. 

March 1:  Annual physical with local pediatrician.  A good appointment.  I was in Seattle, but Matt handled everything quite well - including shots! 

March 8:  Eye Doctor - who thought Alexis' glasses prescription are actually a little too strong!  Fantastic news!  Alexis hated the appointment because they dialated her eyes and she hates hates hates that.  Matt did a fantastic job at that appointment as well!

Future appointments:
March 21: Nutrition to discuss Alexis' diet changes, Modified Barium Swallow test to identify if she still aspirates liquids
May 18:  Cardiology follow-up from her Heart Repair (June 2010)
May 25:  Augmentative Communication Program (Children's Hospital)

Wednesday, March 16, 2011

Alexis' California PenPal - recognized by Congress :)


Congressman "Papa" honors DD Awareness Month.

Maxwell's grandfather, Congressman David McKinley (R-WV), today recognized March Developmental Disability Awareness Month before his colleagues in the U.S. House.

He honored all individuals with developmental disabilities, including Mighty Max, and encouraged respect, inclusion and opportunities for all.

ABSOLUTELY FANTASTIC!!!! Thank you Congressman McKinley, Amy and most wonderfully Mighty Max!!!! 

Friday, March 11, 2011

2x6 Steps Along the Journey

Today Alexis had "after-school PT" at Northeast Rehab in Salem NH.
We've been going there since Alexis was about 8months old.  Originally we started there in aquatic PT in the heated swimming pool. We all loved it.
When Alexis turned 3 and went to Perkins full time, we couldn't accomodate aquatic PT in her hectic schedule.
So we switched to Land PT.  (PT on the land, obviously).

So we've been spending our Friday afternoons doing PT for 2 years, 1 month and 3 days.  Basically 80+ appointments (in addition to her PT/OT/Speech etc at School). 

TODAY, Alexis showed some remarkable fantastic and wonderful skills!
She walked without any assistance twice - about 6 steps each time.  You can not even imagine the GIDDINESS that we (her PT and I) had on her huge milestone.  Alexis was rewarded and congratulated.  She was the super star, I think most of the in-patients heard us cheer for Alexis. 
After demo'ing these talents and then getting rewarded - she refused to put her feet down anymore.   STUBBORN! (but we know where she gets that from)

This is fantastic as we know, first steps are small steps, then they get bigger, and bigger and bigger and then we will have to baby-proof our house !!! 

So if you see Alexis running around the hosptial, her school or in the neighborhood - you'll know THIS WAS THE DAY!!!  Absolutely fantastic way to end a very hectic week for the family.


Wednesday, March 9, 2011

Alexis' Story in the Boston Newspapers - Lobbying for Deafblind Services

Because of Alexis, our family has entered into the world of deaf-blindness and medical needs. 
Someone said today, our son has a special family.  So instead of saying I have a special needs child, I am going to start saying

Because of our special family status - I was asked to go to speak at Massachusetts State House.  I made people cry, I'll readily admit that.  Two total minutes of talking and not a dry eye in the place.  I realed the audience in with my well practiced and appropriately placed voice cracks (just kidding, I was trying hard not to cry myself). Nothing says tear jerker like balling speaker.

I wrote the "speech" at the coffee shop across the street, which is pretty bad planning on my part.  Basically I said something like this (I don't remember what I said word for word because I only wrote a couple of words down in my "speech")
I brought a photo of my 5 year old, Alexis.  She wears cute little pink glasses and hearing aids, attends Perkins and is learning her numbers, letters and colors - everything that a normal preschooler would do.  She brightens the lives of everyone she meets. 
But her life isn't really that simple.  Alexis fought to be here.  Her identical twin sister died when I was pregnant.  Alexis had to fight for her life.   Because she fought for her life, we fight for her life, we fight for her safety, and we fight for her services.
Please do whatever you can to make sure services exists for Alexis as she needs the opportunities our world can offer her.  She is fighting to be here with us.
And then I ran to my seat.
Here is an official newspaper version of that story

Since I'm sure you all clicked on the link and then came back to my blog.  I wanted to add a small editorial to the article - Jaimi Lard.  So in the United States, at some point in our public education process, we all study Helen Keller. We may even read books about her, or just watch a movie.  But the point is more Americans probably name Helen Keller than we know Presidents.  If you've never had the opportunity to see a person communicate with tacticle sign - you aren't living.  It should be on everyone's bucket list.  Sign Language was developed for sighted hearing impaired people.  It was modified for deaf-blind to be a means of communication in the "hands".  When I first saw Jaimi at Perkins, I cried.  I think Alexis was 2 or 2.5 (still very little).  Seeing Jaimi told me "Alexis has a great future in front of her with the right services".  And everytime I see Jaimi and others using tactile sign - I am in tears.  It's a very specialized language developed to help people reach their full potential.  It is absolutely amazing. 
(here is more about Jaimi - http://www.perkins.org/news-events/news/expired/lardhero.html)

I am absolutely thrilled that Alexis' story is in the same article with Jaimi.  This is the potential future for Alexis and I'm thrilled that I can help make the road for Alexis.