Caleb Painting

A few nights ago Caleb and I had an evening to ourselves. We decided that painting would be a fun activity. We started out painting pictures of happy faces, animals, shapes, etc. When Caleb got some paint on his hands, that was it... The pictures speak for themselves.

After running out of green paint, he found the red paint. He thought it was so cool that you could mix the colors together to make a totally different color! He kept telling me that green and red make brown!

When daddy saw the pictures, he was not all that disappointed that he missed cleaning up the mess.

Caleb's New Way To Walk

We are borrowing a new walker from Caleb's PT. This is a REAL walker, rather than the gait trainer he usually uses. It's not a very safe way for hime to get around, so it's something that we'll just be practicing at home in short spurts. However, it's pretty inc(red)ible!

Our First Outing in a While

We got out of the house today after being cooped up with illnesses for a couple of weeks. Caleb is feeling much better, but being sick for so long seemed to have turned him into a bit of a homebody. The one thing that got him out of the house was NOT the fact that we were going to the aquarium at Legoland, but the fact that Bella-Boo would be there (he is pretty infatuated with her). Even though we had fun at the aquarium, you can't tell from these pictures. it seems Caleb has photo-phobia these days and really does not like getting his picture taken - perhaps he's been scarred by our photo session at the beach (click here to see why). So, all but one picture of Caleb depicts him pointing at me and yelling, "You don't want to take a picture of me!"

Here he is posing so cooperatively with cousin Brookie...

Enjoying the starfish pools

Here's the one picture where he's not crying

Even posing with Bella couldn't calm his photo-phobia

What an adorable picture of all the kids...except Caleb!

I think he's actually smiling behind this tank, but I can't be certain.

Here's the back of his head, so even if he's yelling at me you can't tell.

We had lunch afterwards, where he was loving sitting next to Bella-Boo.

Fine, I'll Do Another Freakin' Tag!

So my dear sister, Shana - a.k.a. Three Men and a Little Lady, tagged me...again. This is called "The Husband Tag." So ya'll get to know a little more about Jeff:

5 favorite things that Jeff loves:
1) Caleb & Co. (better known as his family)
2) observing human and animal behavior
3) observing human movement
4) fascination with the universe
5) music

5 things on his to-do list:
1) get a to-do list
2) growing business
3) raising money for Caleb's Crew
4) travel with his wife (I'm VERY pleasantly surprised to hear this one!!!)
5) find us a single-level home

5 snacks he loves:
1) cereal
2) raw nuts
3) DARK chocolate
4) cheeeeeeese
5) Nano Greens with vanilla protein mix (health nut!)

5 facts you may not know:
1) the man can dance... although if you've ever been to a wedding with him you know his moves - popping/breaking of course
2) he can juggle a soccer ball more than 100 times in a row
3) he was a lefty pitcher in college
4) he has amazingly strong fingers...seriously, he can wrestle me with just one finger
5) he just found out he likes sushi - all it took was a taste of wasabi :)

5 places he has lived:
1) Canoga Park (L.A.)
2) Encinitas
3) San Jose
4) Hayward - funny story. When we were living in Hayward Jeff had just gotten his Driver License. He got pulled over by a cop for speeding and the cop asked if the address on his license was his current address. When Jeff confirmed that, yes, that's where he was currently living, the police officer's response was, "Well I don't know why anyone would want to speed back to Hayward." The cop let him off with a warning.
5) Vista - where we have lived for 4.5 years, which is by FAR the longest we have resided in any one place together!

5 quirky things about him:
1) when a good song comes on that he truly feels deep down into his soul, he can be found "popping"
2) he likes to play around on the piano and create music
3) he has to move or manipulate some part of my body any time he touches me. For instance, if he holds my hand, he has to move the joints of my fingers around, and maybe adjust some joints and stuff.
4) he knows how to "talk" to cats and dogs - he's kinda like another "Dog Whisperer" or something
5) he remembers feelings better than visual images or auditory information

5 people I tag:
Well, Shana forgets that hardly anyone I know actually blogs, so I tag
1) Tanya
2) Jenny McCarthy
3) Gilda Ratner
4) Marge Simpson
5) Jessica Simpson

Finally Getting Better

Caleb is finally "over the hump" as far as his illness goes. It took a couple of injections of some pretty aggressive antibiotics, which he was not too thrilled about. He no longer has a fever and no more vomiting for quite a few days. He still has a cough, but a productive one. His main problem right now is pretty bad diarrhea from all the antibiotics. We're all breathing quite a bit easier around here, though.

Although he's feeling a lot better, we're keeping him home from school for the rest of the week (1 more day at this point) - I just can't rationalize exposing him to that many snot-nosed kiddos yet. Part of me wants to just keep him in a bubble for the rest of his life, but I know that's not very rational.

Thank you everyone for all your prayers and good thoughts. He definitely needed it this time around. Now that he is on the mend I can focus on my healing again, and can start focusing on Caleb's Crew!

The New Walker

Caleb just got a new gait trainer (aka "walker"). It's kind of like the off-road version of the one he's had for almost 2 years. The new one is BIG and will take a little getting used to, but I think is a good change.

In order to commemorate the retirement of the "yellow walker", here is a video of Caleb when he was first learning to use it (Don't forget to pause the music on the right-hand side to hear his cute little voice).


I know I'm a little biased, but man that's a cute kid!

Update on Caleb

Unfortunately Caleb is still not feeling well. Every time we think the fever is gone, it comes back. He's still coughing a bunch, and it did get into his lungs which officially makes it another bout of pneumonia. He's on antibiotics and continues to rest. The good news is we've got more than 24 hours with no vomiting and he actually slept through the entire night last night! No more ER visits, but we're still not out of the woods quite yet.

Thanks for all your good thoughts and prayers for Caleb's health.

Nothing Like a Trip to the ER to Ring in the New Year!

Well, Happy New Year, everyone. Hope 2009 has been going a little better than ours thus far.

After Caleb's flu-bug last Saturday, he seemed to be on the mend. He would still complain about his tummy hurting every once in a while, and got visibly nauseous a couple of times, but no more throwing up. Yay!

Then on Wednesday morning, New Year's Eve, he woke up with a pretty gnarly sounding and incessant cough. This always raises red flags for Jeff and me, since something like that can easily turn into pneumonia with his weak muscles. So we cancelled our plans for the evening and just had a quiet New Year's Eve at home. Caleb went to be early, and so did we.

In the middle of the night I was up with Caleb, giving him cough medication. He also broke out with a fever, so I gave him some Tylenol which did the trick. New Year's Day Jeff and I tag-teamed a football party, so we could still enjoy some festivities, but not have Caleb there.

At about 2:00 in the afternoon, his fever was back and his cough wouldn't quit. I tried to give him some medication, but he vomited it right back up. His breathing was labored and shallow and his heart felt like it was going to pound right out of his little chest. By the time Jeff got home, around 3:30, Caleb's heart rate was at 180 and his respiration rate was at 60 breaths per minute (normal is about 100 and 30 respectively). We got some Motrin in him, packed him up and headed to the ER at Children's Hospital.

Once there, they got us right in. Basically, they got his fever down (it was still 101 after the Motrin) and hydrated him (orally, thank goodness) which brought down his heart rate and respiration to a stable level. They took a chest x-ray to look for pneumonia, but didn't quite know how to read it because he has a funky structure. After a few hours of hanging out, we got to come back home. Luckily we had been smart enough to pack up the DVD player and some movies for Caleb, and books for Jeff and I, so this wasn't a horrendous visit.

Some other positives were that Jeff and I found it refreshing to have an ER doctor that respected our opinions as educated parents, realized that protocol doesn't work for Caleb because he's so different, and came up with a plan of care with us instead of for us. Also, Caleb had a positive experience with doctors this time around. I think this was good after his last encounter with the sleep study, which I had feared would scar him for life (see post: Sleep Study = Purgatory). He even enjoyed all the stickers that the nurses and health techs could hand out. Yahoo, he's not terrified of stickers :)

Caleb's doing well now. He's still coughing a lot, but his lungs still sound clear. As long as we keep him on an alternating regimen of Tylenol and Motrin, that keeps the fever down which in turn keeps his heart rate and respiration rate down. We're going to the pediatrician later this afternoon for follow-up.

Hopefully our first evening of 2009 is not an indication of how the rest of the year will go.

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*