Kicking in the pool

Naomi's First Trip to the Amusement Park

Today we took Naomi to Del Grosso's Amusement Park, a small park that has a ton of kiddie rides in Tipton, PA.  We went with Auntie Laura and Grant, Auntie Sarah and Uncle Brent with Margot and Grace, and my friend Hass with his boy Max.  It was hot, real hot. 95 degrees hot according to the thermometer at the park.

Naomi had never been to an amusement park, but really liked the train at Christmas (see previous posts) and so we thought the kiddie rides would be perfect.  Things started off pretty good. Naomi rode some simple around and around rides and stayed balanced and was helped by her friends.  It was not very crowded and I was able to put her on and get her off of each ride. On about the fourth ride, we had Naomi and Max in a little car ride that was a two seater.  Although the park was nearly deserted, the teenager running the ride felt the need to wait for the ride to fill up and Max and Naomi started crying before it began.  About halfway through Naomi lost her balance and was crushing Max, and both were screaming.  When the ride stopped, the attendant rushed to the screaming children and pulled Max out, not realizing that Naomi was disabled and couldn't catch herself.  She smashed her face on the side of the ride and chipped a tooth.

We consoled her and rode the train as a family and she fell asleep, stress sleeping.  When she woke up, we tried the merry-go-round but I think the trauma and the heat did her in and we left after about three hours.

Ready to go

This might not be so bad

I am mildly interested

maybe not

It is good to have friends

I don't like the turtles

With my friend Max

Max had the right idea on this one

Things are nor going well

Naomi is trying to drive

Right before the terrible incident

Stress sleeping

I'm done

All in all, a mixed bag.  We want Naomi to experience things, have fun with kids, etc.  On the other hand, because she is disabled and has already been dealt a raw deal we don't feel that anything else bad should happen to her.  Obviously, these two things are not compatible. Kids chip teeth, break bones, get sick doing things. We are going to get Naomi right back on her horse, literally, because tomorrow she is going theraputic horseback riding.  We will put a helmet on her.

Happy Father's Day!

Today I had a wonderful father's day with my bear.  She was up at 6:30 to wish me happy father's day and we snuggled and listened to her songs in bed for a while.  At 7:30 we got Mommy up and they gave me very nice cards and two ties!  Here are the pics.  I told Naomi that I love being her father, and we watch extra shows together, just the two of us.  We went swimming at Grandma and Papa's house and the sea lion spent 2 straight hours in the pool.   It has been a great day!

What's Naomi been up to the past month?

Well, lots of things!
   
     First of all, Naomi's first nanny, Jenn, is back with us!  We love Jenn and Naomi loves Jenn so we are really glad to have her back.  She comes and spends several hours with Naomi every weekday morning.  They have a lot of fun together.  Jenn helps her play with toys, gives her juice bubba, reads her books, pushes her in her swing, takes her for walks in her stroller and cuddles with her.  She is very kind and compassionate and we are very lucky to have her.  She makes caring for Naomi so much easier for both Mommy and Daddy.  We need to get a picture of them together.  They are good friends.

     Then, when Mommy first got back from New Hampshire, Naomi was into not sleeping very much at night, but very into taking long, luxurious naps with Mommy during the day.  Mommy cannot deny that after being away from Naomi for 5 days she enjoyed these naps immensely as well.

I mean seriously, who could resist that cozy Little Bear?

     Sometimes Mommy and Naomi were still napping when Daddy got home from work.  Mommy was able to get awake easily, but a sleepy Bear did not want to get awake so easily.  This was good for Daddy, though, because he was able to move in for a good restful snuggle with Naomi after a long day at work.  So refreshing.

Of course, Naomi has still been going to school three days a week as well.  She continues to LOVE riding in her van.  Some days she has been a really nice girl and has done all of her work at school, other days she decides to not cooperate with doing her work and naps and cries instead.  At school she has painted some pictures, which are really cute, and she made Mommy a Mother's Day card and potted an african violet for Mommy too.  Of course, Naomi gets a lot of help doing these things.  

Naomi also went on her first bike ride!  Her cousin Grace turned 9 in the middle of the month and decided she wanted to celebrate her birthday by having a family bike ride followed by a family picnic.  Neither Mommy nor Daddy are very strong riders, so ever patient Uncle Brent, who is a very good rider, towed Naomi on the back of his bike.  Why is Uncle Brent being described as ever patient, you ask?  Here is a picture of Naomi with Daddy before getting on the bike.  She's being a perfectly nice girl.  

Here is a picture of Naomi on Uncle Brent's bike.  Really loud screaming and crying goes along with that charming facial expression. 

So here's how the bike ride went down with Naomi.  She screamed and cried, fell asleep for a while, then woke up and screamed and cried more.  She didn't stop the screaming and crying until we took her helmet off.  We're not sure if it was the bike seat she didn't like or if it was the helmet.  Either way, Uncle Brent was a really good sport listening to that for the better part of an hour.  Thanks Uncle Brent!

Naomi also at one point decided that she should spend ALL of her days watching shows.  Like many children, Naomi loves shows.  Like many parents, Mommy and Daddy think show time should be limited.  She gets to watch shows while she eats breakfast and dinner (otherwise she won't eat) and when she is in her stander (otherwise she cries for the whole hour.)  We thought this should be enough shows.  We were very wrong.   Naomi would just rage all morning until we gave in and put a show on.  So we compromised and now she gets to watch an extra show after breakfast.  Once we started letting her watch her after breakfast show, she started being a really nice girl for the rest of the morning again.  Never ones to let an opportunity to snuggle with their really cute girl go to waste, Mommy and Daddy usually watch with her too, as pictured below.  

Naomi also got a new swingset for outside.  Uncle Joel spent two days putting it up for her.  He helps us out a lot too.  It has a bucket swing on it just like the one we have hanging in what is supposed to be the formal living room for her, a sliding board that Daddy has put her down a few times (she seems to like it) and a glider swing that she will be able to ride on with another child once we figure out how to securely strap her into it.  (Mommy has some ideas.)  

Naomi also had a grand Memorial Day weekend.  It started on Thursday after school when she went for  her biweekly sleep over at Grandma and Papa's house (her maternal grandparents.)  Naomi LOVES her sleep overs there.  She cried all day at school that day.  The only times she did not cry at school was when she was having an inappropriate nap and when someone would ask her if she was sleeping over at Papa's that night.  So she was rather unpleasant at school.  Once we got to Papa's, however, she was just delightful.  She has a couple of favorite activities there.  She loves swinging on the front porch swing with Papa and she loves swimming in Papa's pool.  It should really be called Grandma's pool, since it was her idea, but all of the grandchildren label everything as Papa's (Papa's house, Papa's car, etc, so we call it Papa's pool.)  She and Papa swung extensively Thursday evening, and Grandma took her for a long swim Friday before her nap.  She spent Saturday at their house as well, swimming with her cousins, napping, and then spending more time on the swing with Papa.  She is very jealous, though, and gets very upset if any of her cousins get on the swing with her and Papa too.  In Naomi's mind, he's HER Papa and no one else's.  There are pictures of this, but not on our camera.  It is over the top, to say the least.  Sunday was the big Memorial Day picnic.  More swimming, more napping, more front porch, and then Naomi got to stay up extra late and watch shows with Papa while Daddy finished playing Horse Race Canasta with Grandma, Aunt Jerry, and Uncle Brent.  By Monday, Naomi was pretty tired and we had a low key day at home, followed by an attempt at swimming that she did not enjoy, and then more time with Papa on the front porch, which she enjoyed very much as usual.  

In other Naomi news, she got some really cute new hair barretts from Daddy's college friends Dave and Devon and their cute little five month old girl, Avery, and, she is refusing to smile for the camera.  See below for the most pleasant expressions we have been able to capture, and for the new flapper girl hairstyle Mommy does with the barretts. 

That's about it for the month of May! 

Home Alone... With Daddy

This weekend starting Thursday, my wife took a much needed retreat to New Hampshire to make dolls.  This meant one things - 4 nights of little bear with Daddy (and Nana and Grampy).  Lets do a running diary of the weekend ala one of my favorite writers' Bill Simmons.

Thursday

4:30 p.m. - whip into the garage, we are heading to Pittsburgh tonight for a visit!  My father in law is watching Naomi since my wife and mother in law left for N.H. around 3 pm.  I get in the door and he says "Rob, I don't think she is sleeping yet"  Loud yelps, squeals and laughs confirm this. Naomi normally sleeps from 3-5 pm and on school days (which this is) she always crashes easily.  Not today!  I get her up give her some bottle and put her in her jumper to pack.  This is not going to go well.

5:30 p.m.  Finishing touches on packing up.  Naomi has been mostly okay.  I put her down on her blanket to finish loading the car and...

An inappropriately late nap!

5:40 p.m.  Successful transition

7:30 p.m. We roll into Plum at my parents house.  Naomi woke up about 10 minutes ago. I would describe her as an angry sour pig.  Lots of whining and fussing.  This should be great.   Thank God I am leaving to play broomball in an hour.  

7:45 p.m. Dinner time for Naomi.  After some protesting prior to dinner she eats pretty good in front of her show.  I love those shows.

8:00 p.m. Bathtime.  She was a bit fussy after dinner, and I swear she must be part mermaid because firing her in the tub always makes her happy.  And afterwards are the kicks.

8:30 p.m. I leave a tenuous situation.  The instructions are giving to my parents.  They are the same instructions you give to people handling venomous snakes - Don't poke the bear, Don't get bit.

9:45 p.m. I call to check in - Dad "well we put her to bed at 9:05 but she is still up.  She is laughing and squealing up there"  Tomorrow should be fun.

Friday 6:22 a.m.  Here is an example of what I hear:

Naomi is up inappropriately early too!  Sweet.  I gather her up into my bed and she truly is a charmer rolling on her side and snuggling.  We have a full morning today - a swallow study at Children's hospital.  This means... no breakfast and very little bottle... on very little sleep for Naomi.

7:30 a.m.  I dumped Naomi on my parents and went back to bed.  I hear from downstairs my Dad putting Naomi in the jumper and she is not interested.  The funny part is when he tries to change her mind about going in there.  Naomi's rage is like an avalanche - it starts with mild whines. Then arching and squealing.  Finally there is hands up with full blood curdling scream ala this:

She ends up watching a show...

8:30 a.m. on the road to Children's with my mom.  Naomi actually is doing great all things considered

9:00 a.m.  We get to Radiology and - they have no record of our appointment despite calling with instructions yesterday!  My mom walked NAomi back and forth while I straightened things out.

11:00 a.m. Naomi passed her swallow. She did great with thin liquids and purees.  Mostly spit out the crumbled cookies.  At least she didn't aspirate

12:00 p.m.  We get home and Naomi gets a much beloved Milk Shake for lunch.  We decide to take to the Carnegie Science Center for some reason.  

1:00 p.m.  Naomi found the robot exhibit fascinating

2:00 p.m. Naomi is now awake as we leave the science center.  That's not good.

3:30 p.m. At my folks house - we decide to put her up to "see if she will sleep"  I also lay down for a nap... quick quiz - who do you think fell asleep?

4:30 p.m. There is raging upstairs... 

4:40 p.m. Desparate times call for desparate measures - I have Dad hook up the swing outside.  It is a breezy 52 degrees, but sunny.  The swing is a magical device for Naomi.

4:50 p.m.  Success! Naomi loves it.  She is the only kid I know that I have never seen get upset at cold weather.  She loves it, we swing in the backyard in gale force wind and she loves it.  The heated pool at the Y is down so we try the lap pool and she loves it (I don't).  She is kicking and laughing in the swing.  So cute.

5:20 p.m. I leave to visit friends from college and their 4 month old and Nana and Grampy are in charge.  

9:00 p.m. I check in... Naomi the charmer made an appearance.  At her dinner like a good girl then they went for a walk.  Outside is magic.  She loved it.  Anne and I are thinking of getting a chain for her and put her out in the backyard naked to roam around this summer.  Best part - Asleep.  Thank God. And I enjoy my night out.

Saturday 10:00 a.m.  Get to my parents.  Naomi has been an absolute angel.  Got up early at 6:30, but super pleasant and charming.  Ate great.  The plan is for me to take her home and the my parents are going to come up to help.  Naomi doesn't do great away from home for too long, and didn't want to push it.  

12:30 p.m.  Get into town and stop at grocery store.  Naomi really likes the grocery store for some reason.  Except for waiting at the register.  She in general does not enjoy waiting.  Here is a pic

3:00 p.m. Naptime - whew.  She falls asleep easily.

5:00 p.m. up again and cranky.  We swing and play and eat and jump.  I am getting tired.  

7:30 p.m. Bathtime, then bedtime.  Naomi is really tired.  She was doing great, we watch wonder pets and then it is time for brushing teeth.  Naomi did not want her teeth brushed.  I forgot to take her tooth brush to my parents, so her teeth were kind of mossy.  Anyway, she gets worked up enough where she projectile vomits her orange vitamin tinged bottle contents all over her as well as the clean sheets I put on for my parents.  Awesome.  

8:45 p.m. Naomi is in bed

9:30 p.m. Naomi is asleep

Sunday 6:15 a.m. Good Morning!  I tell her it is too early to be up and lay down in the spare room.  

6:30 a.m.  She is not pleased.  Apparently I did not get the memo that Reveille was at 6:15 and the General wanted her bottle at that time.  I go to get the bottle. She is very cozy and pleasant then.

7:30 a.m.  On the way to dump.  Naomi and I take our trash there every Saturday/Sunday.  She really likes it.

8:30-12:30 p.m. Good breakfast, then entertaining with walking, swinging, jumping, eeyore, shows until my folks get here.

1:00-2:00 p.m.  Swimming at the Y with her.  Warm pool is working which is great.  She usually loves it and swims for about 45 minutes, but she is tired and last about 15 min.  She has been loving jumping in though, where I sit her on the side and count to three and pull her in.  Hilarious laughter.  I tried to make her stand on the side but Naomi does not do standing.  Then she melted down.

3:00 p.m. Nap time!  I get one too and a run.  Thanks Nana and Grampy.  I almost feel human again.

5:00 p.m.  Naomi gets up and has some juice.  We go for a very nice walk in downtown Hollidaysburg.  Weather is perfect.  Naomi is loving it

6:30 pm.  Naomi gets a late dinner and an extra show while we eat.  She doesn't seem to mind.  I put her patch on her eye since she hasn't been in her stander in a while.  

7:30 p.m. Bathtime

9:00 p.m. Bedtime

Monday 6:30 a.m.  I leave for work - no sounds from upstairs yet.  

8:00 a.m. check in with my folks - up at 7:10 small improvemnt but she is doing great. Ate her oats like a big girl.

11:00 a.m.  I get home later than I thought, and my parents are patrolling the grounds with a girl in her pajamas and sweatshirt.  Naomi is getting a lot of walks.  We get her dressed to take her out - she did not like getting her sparkle sandals on. 

12:00 p.m.  We take her to rails to trails for a walk.

3:00 p.m.  Naptime again.  Anne is en route from New Hampshire and my parents have left.  They gave me a lot of help.  Naomi is a lot of work for one person, and back up is essential.  She was pretty good all things considered, but I am sure she misses her Mommy.  

Joy and Rage

Sometimes I am filled with utterly overwhelming joy over the wonderful little chunk of heavenly perfection that is Naomi.  For example, today, about a half hour before it was time to wake her from her afternoon nap, I decided to crawl into her bed with her and snuggle for that last half hour.  This experience was, as it always is, glorious.  She is cozy and warm, and so solidly there.  I find her to be generally intoxicating and am often drunk on my love for her.  Well, during the good times, anyway.  We have a lot of pretty typical 3 year old moments too.  Then there are other times when I am filled with a seething, white hot, atomic rage over what has happened that is so strong that I feel like I may incinerate most of the state of Pennsylvania with my emotional explosion.  Some of the triggers for this are pretty consistent, and I try to avoid them, but other times it just hits me out of nowhere.  I honestly try not to focus on these things.  Most of the time Rob and I both just revel in Naomi's Naominess.  But I can't control unbidden thoughts from popping in to my head, or unbidden waves emotion from crashing over me.  It's just that I HATE Batten's disease. So bad.  It is so stupid.  So utterly, profoundly, endlessly pointless and stupid.  In fact, I hate all of the lysosomal storage diseases.  And all of the diseases like the lysosomal storage diseases.  Hate it.   Hate them.  But I love Naomi, too, and all of her ways, even if many of those very ways that I love are part and parcel of the disease process that is going on in her brain and central nervous system.  That is a hard dichotomy to deal with.  I try to focus on the Joy.  That's what I was doing today around 5pm.  But sometimes the Rage is here too, like today around 7pm.  It's just the way it is.

Naomi all ready for school on Tuesday.

Happy Easter

Easter came and went at out house.  Once again, holidays with Naomi are tough.  We try to do the things you would do with normal 3 years olds like dye Easter eggs, hunt Easter eggs, Easter basket, but Naomi was having none of it as you can see.

I might be interested in this

Nope

Not even a little bit

I watched a little from outside

Then I got a time out

Don't like the nice dress Mommy made

At all

Looking for my basket

There it is!

Sourpuss on the Easter egg hunt

Still sour

Finding our dino eggs

Not interested

I do enjoy swinging with Mommy

I can be a charmer

P.S. The train didn't go so well either