Hi my friends!  I've been a busy little man so haven't been blogging lately!  I had a great visit with the Neurologist last week, although basically we have a wait and see approach as far as my development right now.  Interesting things that we talked about were the possibility that TASTE might be an issue for some kids with my sort of deletion.  I dunno, I can definitely tell when I'm eating sour things.  OOH do my lips pucker, don't yours?  Also discussed the fact that some kids like me have seizures.  Wow, I'm pretty lucky that hasn't happened!  I'm too young for an MRI, whatever that is.  If it requires putting on another one of those drafty gowns, then forget it!  We can wait! 

Also went to the Pulmonary Specialist up at Lucile Packard!  I really liked him!  We took a chest x-ray and LO AND BEHOLD, my lungs looked pretty darn  good!  We were checking for food particles or any sign that the aspirating may be a threat to my breathing system.   The Lung Doctor said that he thought the aspirating may be a side effect of my reflux and be something I outgrow!!  We will check back in with him, but a GREAT report!

Sorry to say that all this running around really pooped my out for Therapy this week.  Poor Tami!  I think she's the bestest Occupational Therapist in the Universe but I was ready to nap and everyone wanted me to exercise!  Give a guy a break!  Oh well, next week I will do better!

We went to the beach yesterday with Gramma and I can definitely see the benefit of learning to walk.  I rolled around in the sand and my face looked like a sugar cookie.  Does NOT taste good!  Bleah!  My big brother, Carter, showed me the shells and sticks and seaweed pillows he found.   Can't wait for him to teach me to build sand castles!!

Look forward to sharing more good reports with you soon!    Peace Out!

Hey everyone!   Gotta keep this short as Mom & Dad are taking me to see the Neurologist up in Mountain View today.  Probably to see why I'm so dang smart! 

Good news coming in from all directions this week!  My eye doctor said that my eyes are starting to work together well and the chances of having to have surgery are ZERO!!  Just gotta keep trying to keep my glasses on rather than chewing on them.   

We had been looking at pediatric walkers, fancy little numbers that help kids like me get around who have trouble walking!  Sometimes the hypotonia, or stiffness in the muscles, makes it tough to move correctly.  HOWEVER, the occupational therapist said, "WALKER? NO WAY!"  She thinks that I'm doing great learning the steps needed to pull myself up and walk, and that we just need to be patient.  It's gonna happen!!  And I'm going to do it on my own!   Therapy is so much fun!  I'm learning to pick up small things, like golf tees.  It's a challenge, tricky little devils, but I can use my hands so much better now that I've been practicing.

Now, we're off to see the Wizard! 

Holy Toledo!  Am I glad THAT'S over!  Yesterday we reported to Stanford for what we thought would be another easy test.  WRONG!  First of all, they wouldn't let me EAT all morning and were running an hour late.  I was really ticked off and cried my you-know-what off.  Did it help?  NO! 

Then we took abdominal x-rays in one room, then went in for the delicious BARIUM bottle in another room.  I was so starving even THAT tasted fantastic!  I was told there would be steak and what do I get?  Liquid CHALK!  Yikes!  So while Mom and some big guy who looked like a nightclub bouncer stretched me out on a table, Gramma held the chalk bottle for me and the doctor took at least a million pictures of the barium going through my system.  They wanted to check and make sure my food goes the route it's supposed to and there aren't any abnormalities in the shape or connection of all my parts in there.  Especially the esophagus because the FOX P1 deletion, which is part of my chromosome disorder, is notorious for misshaped ones.

MEDIEVAL TORTURE DEVICE - I HAD MY KEYS IN HAND FOR A FAST GET AWAY, BUT THEY TOOK THEM FROM ME AT THE LAST MINUTE.  DARN IT!!

WHOO HOO!  The esophagus looked fine.  They could see my reflux, but we knew about that!  No biggie!  Can we have steak now?  OH NO!  That would be too easy!  It appeared that my small intestine, sits in my center and not off to the side like it should.  The doctors decided to continue the test to make sure that my chalk milkshake went through my ENTIRE system correctly.  This meant hanging out and then going back for more stretching torture and pictures!  TWICE!  We were there all day!!  Mom played poker on her phone and Gramma brought her hand held Yahtzee, so I gave up and took a nap.  Mind you, this mean wearing that lovely backless gown which always flaps open in the breeze all day.   At least I was given the ok for lunch.  Yogurt and a banana hit the spot.  I guess they don't do steak on Thursdays at Stanford.  Sigh.

The doctors very carefully checked all the film and showed Mom that LUCKILY, my digestion is working properly, even if it is a little sideways.  Thank goodness!  This means that even though it was a very hard day, the results were fantastic!  No physical issues to complicate my dining experiences! 

                              May I have my steak medium rare please? 

Yesterday was SO exciting!  Mom took me back to the place it all began!  We saw the team at the Santa Cruz satellite office of the Lucile Packard Children's Hospital High Risk Infant Follow Up program.  It was because of their initial evaluation that I was sent to Stanford for genetic testing!  Whew!  Thank goodness they were on top of things!

When we saw them last August, I was almost eleven months and we were told I was acting like a three month old.  (I've seen some adults like that, so what's the big deal?).  I could not sit up or hold my own bottle and I had trouble focusing my eyes.  I spit up a lot.  I had issues.  Yesterday I was able to strut in there and show my stuff!  Not only can I sit up...I'm rolling all over and can almost crawl!  Not only can I hold a bottle...I'll throw it at you if I'm in the mood!  My glasses have helped me to see things that were only blurry shapes before.  We are working with my food and liquids to make sure I'm able to swallow and digest properly.  Let me tell you, I think I blew them outta the water when they heard I can say SEVEN words!  CAT CAT CAT CAT CAT!  UP UP UP UP UP!   Damn, I'm good!

The team at the Santa Cruz office was very proud of me and said I am most likely at a nine month old level.  Gramma says, "POOH, He's almost ready for high school".  Either way, it felt good to share our successes and it's exciting to think about what I might be doing on our next visit!  I sure am glad that these folks pointed us in the right direction!  I'm so lucky!

With that trip under our belts, TODAY we jet pack up to Stanford for my Upper GI test.  It's important to make sure that all my parts are in working order for eating.  The doctors want to find out more about why I'm aspirating.  They tell me it's just not cool to have bits of food travel into your lungs when you are chowing down.  Is there anything about the shape of my esophagus which is causing problems?  Can this be fixed, will I outgrow this stuff, or do I need to learn how to deal with it?  With any luck, another mystery will be solved!  The drive to Stanford is a little over an hour each way, but Mom and Gramma are really silly and we have a lot of fun on our road trips.  Sometimes Dad or Auntie Nana come with us and we really party!  Plus, the nurses up at Lucile Packard are really SWEET!  Ready or not, here I come!

Wow!  Sometimes being a little kid is tough!  My crummy cold morphed into borderline pneumonia and Super Mommy took me to the doctor for medicine and some weird breathing machine thingy.  Mostly my cough is better now..that's because I gave it to Mom!   I really didn't mean to.

One good thing about this week is we learned a lot about what support means.
My mom and dad and brother and whole family are happy and crazy and positive.  Most of the time we laugh and get really silly!  Since it hasn't been very long that we've known about my chromosome disorder, there are scary days, too.  Mom had a scary day this week and was sad for a little while.  I think she kinda needed to just get rid of the scary to let more of the sunshine in.  What helped was that we all love her so much, even when she's not being silly and crazy.  Also, she has found lots of people online to share questions and fears with.  Even if we mostly focus on each day that comes, we wouldn't be human if we didn't sometimes wonder about next week, next year and ten years from now.  Being able to wonder about those things with friends is a really big blessing. 

Tough week or not..I'm still determined to get around and explore!  I can push myself up on my arms now!  Next week...car keys???

This is your new blog post. Click here and start typing, or drag in elements from the top bar.