Monday, April 30, 2012

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.  










Thursday, April 19, 2012

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.

Sunday, April 8, 2012

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