Nora's pigtails

Ever since Nora's hair started to get really long, Jaime has been itching to put her [Nora] in pony tails.  She finally felt Nora was ready for the tails.  I didn't see what the big deal was all about, until I got to see Jaime's work.  Nora looked so cute and grown up.  Mom [Jaime] knows best when it comes to Nora's hair.  Jaime also made a strawberry cake and let Nora taste test the frosting - hence that picture with frosting on her face.  It was just after Nora's nap so she still has a little mark from her BiPAP mask.  Now that Nora is getting better at managing her saliva, we've really started experimenting with tastes.  It's good that we can at least share a little of what normal children get to experience.

Our pulmonary vest looks like it might get ordered this week.  It's been stuck in the "insurance zone" for the last two weeks due to it's price no doubt.  At $15,000 it will be one of the more expensive items in Nora's medical collection.  This will replace out vibrating wand we use for airway clearance treatment (Chest PT) twice a day.

Jaime's new bow creation is a snail.  Neat huh?  I have no idea how she makes them but I know it involves baking ribbon in the oven.  This will become Jaime's fallback career I think.

and last but not least.  Jennifer Goodson won the Ponderosa Challenge so she earned a special shout out by Nora.  Jennifer got the right answer which was a zebroid or zebrule.  Jennifer is another Type-1 SMA Parent of Jacob who I actually got to meet at the 2010 SMA Conference.

Volunteer Landing

Jaime and I took Nora on an outside adventure this weekend.  We went to downtown Knoxville and walked the path at Volunteer Landing.  It's a pretty neat path along the river that takes you under bridges.  There are stops along the way that tell the history of Knoxville and even a little area with fountains and waterfalls.  Nora was in shock I think because she was totally zoned out.  Do all little children get that way when they leave the house?  I see kids at Target (not the older ones mid-tantrum screaming and crying) but the little little kids.

How many times have you been talking to someone with an infant/toddler and they say "Jimmy loves to say {monkey farts}.  Jimmy, say {monkey fart} for Mr. Gooden" and the kid says nothing and just stares at the candy isle.  Then the mom is puzzled like 'he does this all the time at home....wtf?" Is being out in public a sensory overload for young children?

I got off track again as usual, anyway.  We also spent a load of time in the 'redneck' pool.  Jaime got sunburned which almost instantly turned into a deep dark tan.  Nora and daddy were covered with SPF 435 from head to toe.  So nothing to worry about there.  When Nora is swimming, if you pretend to pick her up, she starts crying because she thinks we are taking her out.  Sometimes we have to slightly lift her out when we use the suction machine and she gets so angry that we are disturbing her.  So now every 10 minutes Jaime says "well, it's time to get out" just to watch Nora get pissy.   We love to see Nora's little attitude moments because that when we see Nora .... not SMA.

Nora also got presents!  First the BIG stuff.  A woman I work with, who has been a proud member in the Nora Gooden fan-club since day one, gave Nora the huge load of goodies.  She got lots of bubble dispensers (which are always a hit), an alphabet book, and this item Nora is totally in love with.  It's a rain stick!  It makes a rain type sound when these little plastic pellets fall through this maze of plastic shelves.  Nora is totally entranced with it.  When we stop, Nora signs MORE MORE and we have to do it over and over and over again.  Thank you Lanna for the HUGE hit with Nora.  We'll try and get a video taken of Nora's rain stick hypnosis.

The little Pink tutu swimsuit in the pictures was a gift by our good friend Linda Miller.  The suit fits Nora perfectly!  Does she look as cute as you imagined Linda?

Nora's backyard pool

We are getting an in-ground pool later this summer.  Our install date keeps getting pushed later and later so we decided to get a little baby pool; just to get by for the next month or two.  It's a cheap-o Walmart 8-foot'r.  Yes, we feel embarrassed and a lot like rednecks, but Nora's happy so we can live with the shame.  So, we filled it up on Monday and since it was 94 degrees outside today, it was plenty warm this evening.  Jaime and Nora took the maiden dip tonight and I filmed (obviously).  Tomorrow I'm going in. 

It's so fun to see Nora swimming.  We can't get enough and Nora can't either.  I posted a video in addition to the pictures.  You have to see the video - we almost lost Nora's head-float to our dog Bentley.  The dumb-ass tried to steal it right in front of us.  In his younger years, he was a formidable thief.  He could have plucked it out, carried it into the front yard, and eaten 1/2 of it, in the blink of an eye.  I'm not embellishing - he really was that good or bad or both kinda.  Sadly he's showing his age, and his botched attempt was just plain pitiful.

YouTube Video of the pool

Happy 4th of July!

We stated the day at the pool.  Nora and mommy swam for about 30 minutes.  The water to too cold for me to get in.  Yes, I'm an a wuss.  I picked up some sparklers from a local fireworks store.  In the county we live in, fireworks are all illegal save snakes and sparklers.  In counties just outside of ours, everything goes - and everything does go.  Some neighbors near us must taken out a second mortgage because we saw thousands of dollars exploding in the night sky for the last two nights.

We had a great video conference with the Lunts via skype.  It was Jaime's first chance to meet Chad Lunt who is hilarious, and she got to see little Lucy in action.  We plan on making that a monthly event, since it was so much fun for Nora and Lucy to meet each other.

In the evening, we had Nora out to watch illegal neighborhood fireworks - way past her bedtime.  It was funny to see her watching it all.  If the brief periods between the cacoffiny of booms and whistles, Nora would actually get pissed at the silence and start to nearly cry.  It wasn't quite a 'i'll take away your bubbles' cry but more of a 'turn the TV off in the middle of Elmo's world'.  Nora is getting to be such a little diva.

Okay so the Ponderosa Challange is finished.  I'm shocked how many zooligists visit our website.  I figured the Zonkey (aka Zebroid, zebrinny, zebrula, and zedonk) was obscure, but Jennifer Goodson got it immediately (with the help of Wikipedia no doubt).  Curse you Wikipedia and your infinite knowledge about everything!!!  So Jennifer, check out Goodentree in the next few days for your special message from Nora.

Thanks everyone for commenting.  Reading your responses entertained us all day long.  We love love love comments.

Ponderosa Zoo challenge

We went to the Ponderosa Zoo in Clinton TN (it's about 35 minutes away).  We feared it would be kinda redneck hell - but to our surprise it was great!  The Knoxville Zoo is all fancy and clean, but it isn't the greatest place to actually see animals oddly enough.  Ponderosa on the other hand, was a little dirty and smelly BUT the animals!  You could get really close - plus it's a petting zoo so the animals actually come over to check you out.  We are going back for sure.  Nora did okay but since the path was gravel and the EasyS stroller has small wheels and no shocks, it handles horribly.  It was so bumpy that Nora had a few mucus cough fits.  Then the batteries in her portable fan pooped out so she started getting hot.  I think the temperature was in the high 80's so Nora's cheeks started getting all red - she was too caught up in the little horse and donkey to care though.

The challenge

The first person to correctly name the animal in the black & white photo below, wins a special message from Nora posted on Goodentree.com.  Post your guesses in the comment section below

 

Nora really enjoyed all the animals.  Jaime and a sheep even has a BAAAA conversation that Nora found amazing.  We just need to solve our technical problems (sun, heat, bump ride). We spent the rest of the evening on the back deck with some wine and baby flash cards.  What more do you need?

So can anybody offer advice on a good solar umbrella with a great mount for the stroller?

I uploaded a new YouTube video of Nora tasting peppermint candy.  It's funny how Nora ditches the bubble pipe in anticipation of getting the candy.