Wednesday, December 31, 2008
Holiday Photos
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:
Sunday, December 28, 2008
Sleep Study = Purgatory
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*
Wednesday, December 24, 2008
Chocolate Chip Art
He then continued to make different things out of the chocolate chips. This was a duck...
Monday, December 22, 2008
Where Are All These Hits Coming From?
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)
Saturday, December 20, 2008
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.
Wednesday, December 17, 2008
The Photo Shoot From H-E-Double Hockey Sticks
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.
Cute Story
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.
Monday, December 15, 2008
Happy Hannumas
Saturday, December 13, 2008
I Feel Pretty, Oh So Pretty!
It's amazing how a child's innocence can boost your self-esteem with one sentence.
Friday, December 12, 2008
Dr. Gold
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.
Saturday, December 6, 2008
My Own Personal Roller Coaster
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!
Wednesday, December 3, 2008
Tagoramma
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)
Tuesday, December 2, 2008
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...
Sunday, November 23, 2008
I'm OK, but...
I decided to take Jeff's Toyota Highlander, to leave him with the car seat in case he decided to take Caleb out anywhere. I was stopped at a stop light, then started to go when the light turned green. When I was almost all the way through the intersection, someone driving a Honda Civic ran the red light, hitting the rear passenger side of my car. My car ended up rolling one complete revolution, ending up back on its wheels.
My back, neck and some other joints are pretty sore, and I'm a little shaken up. Miraculously enough, I walked away from the accident without a single scratch or bruise on my body. I realize there is so much to be grateful for. The car may be totalled, but at least no people were. There were many kind bystanders that stopped to help. One of them was a gentleman who was on a motorcycle, and my car almost rolled over him - I know he's feeling pretty grateful right now, too.
The one thing I'm the most grateful for is that Caleb was not in the car. Not only did the car hit mine exactly where Caleb's car seat would have been, but the force of the impacts could have done some serious damage to his fragile little neck.
This experience has also been a great reminder of the incredible support we have from our family and friends. Everyone has been helping in whatever way they can.
Jeff has also been amazing throughout this. Not only has he been a very supportive husband, making sure I get the rest I need as well as emotional support, but I have also been fortunate to get around the clock supervision from Dr. Gold.
Thank you all for your well-wishes and prayers. I'll keep you posted if anything changes, or if we need anything. For now we're just taking it easy and trying to get back to life as usual.
Saturday, November 15, 2008
How To Play With a Floppy Kid
Friday, November 14, 2008
Although I love Caleb's Doctors, I'm sick of seeing them (no pun intended)!
Monday, November 10, 2008
How Much Can One Family Spill?
Saturday, November 8, 2008
Totally Recommend It!
This weekend we took Caleb to see Madagascar 2. We loved the first one, so we figured it would be a good one. This one was even better! We were all rolling throughout the movie (although the beginning is a little sad). The lemur king was my favorite.
I definitely recommend seeing this movie, even if you don't have kids.
Saturday, November 1, 2008
Halloween Festivities
On Thursday Caleb's school had a costume parade. I wasn't able to get very good pictures because he was crying the whole time - it was hot, noisy, and I think just generally overwhelming for his first day back after being out sick the whole week.
He enjoyed doing the arts and crafts much more.
Here's Caleb with his buddy Hunter.
Wednesday, October 29, 2008
Music to My Ears
Throughout all of this, Caleb has remained in good spirits, although somewhat ornery. Not sure if that's just him going stir crazy, or my lack of patience for the same reason. I've had my share of diarrhea, vomit (both side effects of an upset tummy from the antibiotics), snot and doctor's visits to last me a while...oh the joys of parenthood. Luckily no hospital visits this time around, and looks like he'll be better in time to go Trick-or-Treating for Halloween!
Below is a video of Caleb "running" in his walker, which is just one example of the many ways we have passed the time these last few days cooped up in the house.
Sunday, October 26, 2008
Yet Another Cold!
Saturday, October 25, 2008
Caleb Utilizes All of His Resources
It has always amazed me how Caleb naturally utilizes the limited resources his body provides to their full potential. For instance, before he could hold his head up and look around freely, he would look with his eyes, making them rotate further than what is considered comfortable for the rest of the population.
Since his lower extremities are stronger than his upper body, he has always been quite resourceful with his feet and legs. For instance when he's in his black walker, if he drops something on the ground he will pick it up with his feet (given that it's not too heavy) and bring it up to his hands. When lying on the ground, he will sweep his leg and rake items towards him. Below is a video of how he makes his own little bookstand when lying on the floor. He has done this for over a year or so, but every time I see him do this, it's such a great reminder to utilize what we've been given, and to get creative with your resources.
The Man Cold
And, of course, Jeff is nothing like this when he gets a cold ;)
Happy Birthday Grandma Lou Lou
Grandma Lou Lou decided to celebrate her 60th birthday at Boomers, playing with all her kids, grandkids, and some friends. It was such a great way to commemorate her silly, wacky, and fun-loving 60 years on this earth!
Caleb enjoyed playing some games.
Just before this picture was taken, the girl that was serving our group asked my mom how old she was because she wanted to know how many candles to put on the cake. My mom thought that the number 60 would be sufficient (like the "6" and the "0" candle). The girl looked at her with horror and wonder in her eyes and said, "60 individual candles?!" The compromise was 6 individual candles.
We all had fun playing with these pirate eye patches. Aaaaaargh!Not sure that they're supposed to be used while driving, Hayden.
The biggest hit of the day was the race cars.
Here comes Auntie Shana in her Pinto of a race-car...
And Jeff gets passed by Uncle Wayne and some kid we don't know...
Cousin Nathan with visions of driving the real thing in just 3 short years...
Just check out the concentration.
Haha! Victory is mine!And the unsuspecting victim is Auntie Shana. Unfortunately I was no match for Grandma Lou Lou, who won the next round.
Thanks for a fun-filled day, Grandma. It was certainly a day to remember.