Holiday Photos

OK, so I realized that I haven't put up any pictures from our festivities from the holidays (including Thanksgiving). Our camera has been acting up, so many of the pictures are not the greatest quality, and I missed out on some of the activities. Oh well. Maybe a new camera is in the cards for 2009 - we'll see.

There will be more pictures to come over the next few days.

We have had some wonderful times with family and friends and hope that some of these pictures convey how enjoyable these holidays have been.

Here are some pictures from Hannukah and Christmas (a.k.a. Hannumas)



Here are some photos from Thanksgiving:

Sleep Study = Purgatory

Friday night we had Caleb's first sleep study done. It was just to get some baseline info (data to compare to) for future reference as sleep apnea becomes a problem for kids with MD. He'll probably have this done about once a year...I am now shuddering at that thought.

So, we check in at Children's Hospital at 7:45 pm. Caleb fell asleep on the way there, so I thought, "Sweet! If the technicians are careful enough, he should just sleep right through it." Well, you've probably gathered that that did NOT happen. Things started off fine - we got some of the wires hooked up to him without so much as a stir. A few more, and he kind of opened his eyes, but quickly closed them again.

Then he opened his eyes one more time and the technician decides this is a great time to explain to Caleb what is going on. It goes something like this, "Caleb, my name is Neil, and I'm going to..." "AAAAAAAAAAAAAAHHHHHHHHHHHHHHHH!!!" (That's Caleb screaming). Caleb then goes into hysterics, telling the 2 techs and me to, "STOP TOUCHING ME PLEASE! NO, I DON'T WANT THAT ON ME!" etc., etc.

They decide to clean the spots on his head and face where electrodes will be attached, and attach them after he's gone back to sleep. Well, he calmed down, but 2 hours later he was still awake. Neil then came in and said, "If we're going to do this tonight, we have to hook him up now, or we won't have enough time to get enough data." So I agreed that we've gotten this far, we might as well finish.

I tried to show Caleb that the tape that would be used wouldn't hurt, and told him, "They're just like stickers. See, mommy will put a sticker on her head." Well, it quickly went downhill from there. Caleb then started screaming, now in hysterics again, "NO STICKERS! I DON'T WANT ANY STICKERS!" Have you ever had that feeling that you've ruined your child for life? I think Caleb just might be terrified of stickers after this experience.

So we get everything hooked up, and he finally is so exhausted that he falls asleep around 11:15. I fell asleep around 12:30, but the tech came in at 1:30 to check on something, and that was it...I was up. So, on one hour of sleep, I was stuck in a small room, with my child hooked up to enough wires to look like he was in a Sci-Fi movie, with my cold and cough getting worse, and the air in the room was the driest air on the face of this Earth so the skin on my hands was cracking and I was sooooo parched! Oh, and did I mention that there was one bed for Caleb and a very uncomfortable pull-out hospital chair, which was so great for my back and neck.

I finally got back to sleep around 4 am. 4:45 rolls around, and my good friend Neil comes in and says, "Up and at 'em. The hospital needs the room at 5." Thanks, dude!

But wait, there's more...Caleb was in a very good mood after he got rid of all the wires. On the way home, Caleb tells me that he feels dizzy. He's got blood-sugar issues, and sometimes feels dizzy in the morning, but then takes a few sips of juice and is fine. So we stop at McDonald's and I got him some OJ, which he drank for the rest of the way home. We pull into the garage, and I started unbuckling his carseat. Without warning he throws up all over himself (and me). This was the icing on the cake...vomit icing!

He had the flu all day yesterday, but is fine today. He's keeping down food, and has a new found love for popsicles. I have since caught up on my sleep, and managed to fight off the flu. Jeff has been wonderfully supportive so we could both recover from this horrendous experience. Hopefully next time we will be able to better prepare Caleb for the sleep study and be able to talk him down from his hysterics. *Sigh*

Chocolate Chip Art

Since I've been up to my elbows in chocolate making truffles for family and friends, I thought this post was appropriate. A couple of nights ago I gave Caleb some chocolate chips for dessert. He scrunched them all together and exclaimed, "Look, mommy, I made a tree!" I walked over and this is what I saw.

He then continued to make different things out of the chocolate chips. This was a duck...

this was a horse, but I had to capture him in action because he kept eating the head.

He was quite proud of himself with this one, exclaiming, "I MADE A LLLLL!"

After he was quiet for a little while, I asked, "What did you make now?" He answered with glee, "I made DOTS!"

Where Are All These Hits Coming From?

For a couple of weeks now, I kept looking at the little "Who's Visiting?" map on the right-hand side and thinking it must be malfunctioning, or something. Caleb & Company suddenly went from about 5 visitors to 20+ a day, seemingly overnight. The hits were not only across the US, but international, as well. Suddenly cities from Canada, Australia, the UK, Sweden, Argentina, China, New Zealand and others were popping up.

I found out that we are coming up on Google for Ullrich searches! A Yahoo support group recently found our site and contacted me through the guestbook below. I'm very excited about this, since this was one of the reasons I started this blog - to make connections with others who have been affected by Ullrich.

So, WELCOME, newcomers. We hope you will continue to drop in :o)

Caleb's Latest Trick

Around the holidays, Caleb always seems to give us a gift in his own, unique way. On the morning of his very first Christmas, Caleb started kicking his right leg, showing us that he had use of his quads. It was the first time one of his muscles that had never seemed to work, just started working, giving us so much hope and a little belief in miracles.

This year Christmas came a little early. Caleb decided to surprise his Physical Therapist, Sarah, and me at his PT session yesterday. He managed to complete a feat of strength, Caleb-style. We've been working on this for months, and yesterday was the first time he did this independently. Luckily I had my camera there so you could all enjoy it, too.

The Photo Shoot From H-E-Double Hockey Sticks

My friend Kate, who is a fantastic photographer, and I have been trying to get together for MONTHS to get Caleb's 3-year pictures done. We just couldn't coordinate our schedules, and when we did, something would come up, like Caleb having an unsightly rash from head to toe. We finally pinned down a date, and just in time for holiday cards.

The plan was simple. Jeff, Caleb and I would go to Cousin Cammie's 2nd birthday party breakfast in the morning, then come home and have a photo session with Kate around 12:30. Simple, except for the fact that I didn't take into account the fact that Caleb would eat a sugary and carb-filled, late breakfast, messing up the timing of his meals and, more importantly, totally screw up his blood-sugar, rendering him a total crank-bucket!

Here he is in the beginning. He kept pointing at Kate and saying, "You don't take any pictures, of me. OK?!" You can see him crying in the background.

Such a happy family!

We decided to take a break, take a drive and let him sleep a little, then meet up at the beach. He started out in a better mood (after a few sips of juice to regulate his blood-sugar a little).

Caleb doing his silly face.

Although it was absolutely georgeous and the perfect time of day for pictures, it was cold! Note Jeff trying to keep warm.

Here's Caleb looking a little unsure as he stands by himself. Although he's not smiling, this is picture-perfect in so many ways.

Caleb had had just about enough at this point. Here we capture him being put in time out in his walker.

Here daddy's having the "Time Out" talk with him.

More T-Os

We were able to end on a fairly good note. But I'm not sure Kate will ever want to do a photo shoot with us again.

Although it was a rough photo shoot, Kate still managed to get some good shots.

Cute Story

A couple of weeks ago my friend Kate and I were talking about the blog that she wants to start up, but wants some tips on how to do it. I said I was more than happy to sit down and share the little bit that I know because, as I told her, "I NEED MORE BLOGGING FRIENDS!" Well, Caleb thought it was hillarious when I said this, probably because I said it so emphatically. So the whole way home, and most of that day he would blurt out, "I NEED MORE BLOGGING FRIENDS!" with a huge smile on his face. That was pretty much the end of it.

Yesterday when we took a trip to Costco. He was his typical social self, saying "Hi" to just about everyone we passed by. He likes to add, "My name is Caleb," to anyone who will listen long enough to him, and a few who aren't listening. Yesterday he decided to tell just about everyone in the store, "I NEED MORE BLOGGING FRIENDS!" None of them had a clue what he was talking about, but I thought it was pretty funny.

Happy Hannumas

I thought this was cute. Happy Hannumas, everyone! (Don't forget to pause the music on the right hand side to hear the video better).

I Feel Pretty, Oh So Pretty!

This week was a crazy week between reports, losing reports on my computer (twice...don't ask), holiday parties, etc. So, I did not watch a moment of TV all week. In fact a plane crash happened in my own county and I'm embarrassed to say that I didn't hear about it until the next morning as I was listening to the radio on my way to work. So this afternoon, Caleb took a nap, which is very rare these days. I decided to catch up on a show or two that I had missed. I was watching "Chuck", which is one of my new favorite shows. Near the end of the show, Caleb woke up. When Jeff brought him down, Caleb looked at the TV and said, "Look, it's mommy. Hey, daddy, mommy's on a TV!" You guessed it, that hot blonde was on the screen when he said that.

It's amazing how a child's innocence can boost your self-esteem with one sentence.

Dr. Gold

No, Caleb has not started wearing glasses. Apparently, since we have been seeing so many doctors lately (just when we were done with all of his, it was my turn), he is finding it fun these days to play doctor (get your minds out of the gutter...he actually likes to pretend he's a doctor). He listens to my heart with the "peliscope", takes my temperature under my armpit - you'll be glad to know it was 26-8 today :) he then takes my blood pressure with the "schwee-schwee" (the sound we make to pretend to pump the BP cuff). Then he gives me a shot, but first tells me there will be "just a little pinch."

For some reason, in his mind a doctor has to wear glasses. So when his pretend glasses kept falling off, I lent him mine.

Today I asked him if he was Dr. Caleb. He looked at me very seriously and said, "No, I'm Dr. Gold!" I guess I'm living with 2 Dr. Golds, now.

But, alas, all that doctoring is very tiring work. Even doctors must sleep sometimes.


Here is a photo of the original glasses. Not quite as functional, but still pretty cute.

My Own Personal Roller Coaster

Life is full of ups and downs and is often compared to a roller coaster. However, it is a rare occasion that a person literally gets to do loop-de-loops without being harnassed into an actual roller coaster. It's even more rare that a person gets to walk away from said loop-de-loops.

A few people have asked what it was like to roll in the car. It was pretty surreal. I saw the headlights at the last split second and had just enough time to think, "Oh, *expletive*!" As I was rolling, I was just very aware of the roll. It was almost like I was thinking, "Crap, that's the street outside my window. Now I'm upside down. At least I'm not staying that way - sideways again. Will this ever end? OK, I'm right side up again. Oh, hey, my rearview mirror just landed in my lap. What should I do with that? Now someone's at my window asking if I'm OK. I guess I should roll down my window to talk to him. Oh, the window won't work. I guess I could just open the door. I don't think I have any broken bones or anything. Holy Cow!"

As for how I'm doing now. Well, my back and neck are still pretty sore and I have a few other slight aches and pains. But I'm still feeling incredibly lucky! Especially that Caleb wasn't in the car. Below are some pictures of the results of my personal roller coaster. Thanks again for all your well-wishes and support!

Happy Holidays!

So with Jeff being brought up celebrating Hannukah and me with Christmas, the question is what do we celebrate in our house? Around here, we call it Hannumas (a.k.a. Christmakah). We decided not to choose one over the other, but rather to embrace both. We continue to celebrate both mostly out of cultural tradition, as our current beliefs are more Buddhist and Integral in nature. But the holiday season just brings such a wonderful and warm feeling of togetherness as a community, and creates such a great excuse to spend time with family.

Jeff does not have the desire to decorate for any holiday - he sees it as a bit of a waste of time and energy since we'll just have to take them down later. But years ago, I finally started putting up holiday lights in our home. This is one of my favorite aspects of the holidays. I just love the soft glow of the lights and the ambiance they create. Three years ago, Jeff finally realized how much joy decorating for the holidays brings to me, so he went out and bought me a fake tree (a real one would be impossible for him to justify, as they are so messy and a big hassle).

My compromise, in order to stay true to our Hannumas theme, is that the tree is decorated with silver and blue. We still don't have a tree topper - do you think they make a Star of David Christmas star? Some other decorations we have are a winter bear sitting next to a Hannukah bear. My personal favorite is our stuffed Santa holding a dreidel.

So the other question is, what do we say to other people when out and about during the holiday season? My father, being a person who likes to ruffle feathers, insists on wishing everyone a "Merry Christmas" because he refuses to give in to this PC world. "Happy Hannumas" would not only confuse people, but excludes other holidays such as Kwanza. "Happy Holidays" certainly encompasses everything, so we usually go with that, but I find it a bit generic.

So, this year I think we'll go with, "May you have a very happy holiday of your choosing!"

Tagoramma

Well, my sister tagged me again. She termed this one Mentisms (pl. n.): Musings of a person with questionable mental faculties. Ex: "Three Men and a Little Lady" was full of mentisms today.

So here they are...

I Am: what I am.
I Want: my family and friends to know how much I appreciate them, even if I don't always show it.
I Have: a beautiful boy and a wonderful husband.
I Miss: Jeff (he's out of town at a seminar).
I Fear: other cars crashing into me.
I Hear: The Office on the TV.
I Search: around the house for all the things that I randomly put down without thinking.
I Wonder: how Zicam works.
I Love: Caleb's smile - it can brighten up any room.
I Forgive: pretty easily.
I Ache: pretty much all over lately.
I Always: learn from my mistakes.
I Try: to be a better person than I was yesterday.
I Am Not: comfortable on this couch.
I Seem: Like I know what I'm doing.
I Know: a lot of stuff about speech, but not nearly enough.
I Believe: everything happens for a reason.
I Feel: pretty sore right now.
I Dance: just a little better than Elaine from Seinfeld.
I Dream: of Caleb being able to walk independently, and lifting his head up off the ground.
I Give: way too much energy to my job (I realize I don't get paid for the time I spend awake at night thinking about my kids).
I Listen: with the intent to understand.
I Sing: mostly with Caleb and in my car.
I Laugh: in many different ways. Jeff has classified them. He likes laugh 14-B the best.
I Can't: do anything athletically with any amount of grace.
I Write: on the blogosphere.
I Cry: not nearly as easily as I used to.
I Sleep: very lightly, and wake up way too often.
I Am not always: as confident as I may seem.
I See: my cats, Spaz and Freak, wrestling.
I Need: a new car since ours got totalled. Oh, I also need a massage, and a good night's sleep.
I Should: go to bed.
I Tag: Tanya (because she's the only other person I know besides my sister's family that blogs) and Alicia (in hopes that this will get her blogging again)

Being Silly with Daddy

Jeff often does silly things with Caleb, and this is "Daddy Time". Tonight Jeff was in charge of bath. They came downstairs and Caleb joyfully exclaimed, "Mommy, I'm so silly!" This is what they came up with...