January 29, 2009

Doctor Update & Our 100th Post ...

We made a quick trip to Seattle Tuesday night for our appointment with the neuro developmental doctor yesterday at Seattle Children's. He is not too worried about Caden's development. He is developing in the correct order of events, just at a slower pace then he should (even for an achon). Yeah - good news! We will check in with him again in a year unless we see signs of Caden's development regressing.

Wow! This is my hundredth post ~ Look how far Caden has come since my first post in April!

... and look at him Now :0) It is becoming increasingly difficult to get pictures of my buddy in this chair! *A* - he doesn't sit still, and *B* - he has learned that if he leans forward and leans back quickly the chair rocks - so that is hilarious to him!
Again, I am so thankful for this blog! It has allowed me to meet so many new friends who deal with some of the same obstacles we also deal with! It has also served as a great communication tool for my humongous family :0) I love reading your comments ... and encourage each and everyone of you to leave your thoughts on our blog .... Google Analytics tells me my blog has had over 1,477 unique people visit with a total of 8,748 visits ... Who are You? :0)

I wonder what the next 100 posts will bring?

January 27, 2009

He's on a mission ....

Dan and I are amazed at how quickly Caden has picked up the thing called "climbing" ... after being "stuck" so long developmentally Caden has really kicked things in high gear. Here are a few pictures from his adventures this weekend. Considering he wouldn't even "bear weight" on his legs at Thanksgiving - he is doing great!

I realized I hadn't checked on Caden for a few minutes ... when I walked into his room this is what I found ... he had climbed up on his chair and turned on his radio :0) Guess I need to realize I can no longer leave him unattended for too long!

...and for the best news ... Caden went pee-pee in the potty :0) and being the dork I am I couldn't resist a picture. We sit on the potty before bath time ~ I don't know who was more surprised he went, Caden or I?! He missed the potty a little ~ but that's my fault, obviously we didn't have "things" pointing in the correct direction!

Have a great week!

January 24, 2009

My Adorable Buddy!

We had a local photographer take pictures of Caden before Christmas. Mary came to our house which was super convenient ~ we were able to schedule it around nap time and we didn't have to wait in a waiting room. However I waited too long to schedule our appointment ... and she wasn't able to schedule us until December 13th .... meaning I didn't get the prints back in time for Christmas gifts to the Grandparents :0(

Okay, so long story short ... the prints are sent to the Grandparents and now I can share them with everyone else! I love the majority of them ... however in a few of the pictures I can tell Caden had a cold (darn it!)

Hugs ~ Trisha

January 22, 2009

An Evening With Caden ~

Unfortunately from the time I pick Caden up from daycare to the time he goes to bed we only get to spend about 3 hours together ... but those 3 hours are jammed packed ~ here's a photo recap of an average evening. Thankfully we did not have physical therapy, speech therapy or errands to run today ... which meant more time for play :0)

First off ... this is what I woke up to this morning :0)

Home from Work & Daycare ... "time to play Geo-Trax Mommy"

I left the room for a few ... come back in and he had crawled up on his chair. Seriously, this Kid is developing new skills daily! I truly thing his tonsillectomy was the best thing we could have done for Caden (granted the recovery sucked!!!). He is getting better sleep which leads to superstar development!

Caden's new moves in action (I apologize, the video is a little shaky - and at one point cuts out and back in. My finger slipped when I was supporting his feet so I had to cut and paste the two video's together.)

Time for Mommy to do the Wii Fit ... but she has a "helper"

I ask myself, "why do I make spaghetti for dinner - is the cleanup really worth it?"
"No worries Mommy, I will "help" you clean me up"

To the bedroom we go for jammie's ... at which point I realize I'm out of diapers ... I stick buddy in the crib and head to the garage for diapers ... but before running to the garage I couldn't resist this adorable butt pic!
I return from the garage with diapers in hand ... to find the sheet soaking wet! That's what I get for taking butt pics ... the little sh *& peed! So ... to the bath we go, change the bedding, etc ...

After bath we head to the computer room to check on our LP blog buddies ... Caden is determined to get himself up to the computer!
A little more play time ...

.... and finally, night ~ night buddy!

My Red Wagon

Since Caden was sick during Christmas we were unable to meet up with our friends Kristian & Lily :0( They sent him his Christmas gift this past week ... and he loves it! A little Red Wagon. Ironically one of his favorite books we read at bedtime is a hand me down book and it is titled "My Red Wagon". I'm not sure if he understands that he has a real life wagon now like the one in his book ... but none the less, he loves his new wagon :0)

Our Physical therapist let us borrow this cool little u-shaped gizmo chair. I'm not really sure what to call it ... anyway, Caden thinks it is pretty neat! His arms rest perfectly on it and he doesn't have to focus so much on keeping his balance :0)

January 19, 2009

Caden's in Training for Hollywood ...

At 22 months I'm hoping it is safe to say Caden has hit the terrible two's?! Can it get worse?

Caden is climbing EVERYWHERE (which is good!) ... however along with the climbing he bites! He uses his mouth as an extra hand, so if he is climbing Dan or I he bites on his way up. Those bites hurt! We tell him no biting and I slap his mouth .... oh boy! Does he know how to turn on the tears! Sadly it is quite humorous ..... My response to his crying is, "oh boy looks like we are ready for Hollywood"! Don't worry ~ I don't slap him hard enough to hurt, just enough for him to understand no ... and I know the cry is fake!

The next symptom of his terrible two's goes along with "on, on, on, on" ... if we don't respond to his request of turning whatever he wants on ... he rolls to his tummy and throws a fit! So then we ignore his fit and that makes him even more angry!

The final symptom of his terrible two's is ignoring us. When he decides he doesn't want to hear Dan or I he turns his head and rolls his eyes away. We know darn well he can hear us by the look in his eyes. Also, at bedtime - I usually hold him until he falls asleep. Occasionally if I am looking at him and he doesn't want me looking at him he takes his hand and turns my head away .... little Sh#*~!

Those are the recent challenges in our house ~ overall it was a good weekend minus Caden's orneriness! We went out to dinner Saturday night and Caden sat in the highchair the entire meal - yeah!!

It is so fun to see Caden vertical ~ I am so used to seeing him horizontal!

Meet Thing 1 ~ He lives in our house!

January 14, 2009

bll, dee, ahh, on,on, yeah, bleeee, see ya ...

No that title isn't a typo ... that's my little buddy! SERIOUSLY this kid is developing right before our eyes. I truly think the tonsillectomy was the best thing we could have done for Caden or it happens to be coincidence. He truly is getting better sleep and he is showing it through his physical abilities and language. He has SOOOO much to say even though I don't understand 80% of it. He is also clearly showing he is only 2 months away from two years old. If something isn't going his way he lays on the floor tummy down and SCREAMS! Oh the joys :-)

This picture is so fitting - his shirt says "Little Monster" - I think his expression in this picture is screaming "little monster"!

If you visit our house and wonder why none of our doors have door stops, it is because my little monster takes them off and gathers them together. I had to take this picture ... I chuckled when I walked by and saw his collection of door stops in the entryway :0)

We made it through Caden’s follow up appointments on Monday & Tuesday. Our drive over was an adventure. Blewett Pass is still closed from the storm last week. So we had to take the long way around. It made our drive 3 and a half hours ... ahhh...

I snapped these pictures while driving (I know not safe!) but I wanted to share with all of you the things he does to keep himself occupied. I would also like to know how my little Houdini manages to wiggle out of his car seat straps - no matter how tight I have them. RRR! Caden was having fun talking to someone on his cell phone ... it was quite the conversation!

Caden and I stayed at my parents house on Sunday night and then we stayed at the hotel close to the hospital Monday night. I cannot deal with that Seattle traffic!

Caden was happy to see Uncle Bailey again and even shared his Cheerios's with him. Ewww, grose. Caden would eat a few, give Bailey a few, and then eat a few more himself after Bailey licked his fingers - yuck!
What an adventure it was staying in the hotel with Caden. This was the first time just he and I had stayed in a hotel alone. I had planned ahead that I would take a shower right when he woke up. I would give him his bottle in his crib and jump in the shower then. But that plan failed. He woke up at 4:30 – ready for the day, and I said uh-uh, no way – so I brought him into bed with me. So at 7 when he woke up tackling me I knew my shower plan was NOT going to work. I needed something to keep him occupied – hotel rooms are NOT childproof ... Every outlet is exposed and every lamp cord is hanging. So I developed plan B ... The box of Kleenex. It worked, I took a super-sonic quick shower and the Kleenex kept him occupied – hallelujah!

Notice the "imprint" of where Caden was laying ... the tissue was scattered all around him :0)

Caden thought it was pretty neat to get his own cup of Cheerios's from the breakfast buffet at the hotel ... hey when you're in a hurry, it's what ever is convenient. Even though half of the cup of cheerios is scattered in the backseat of my car.

Monday night we went up to Alderwood Mall, I was burned out on U-Village (the shopping center closer to the hospital). Caden and I had dinner at Claim Jumper .... And Caden SAT in the high chair for the whole meal. This was a first. I was SO EXCITED . Good job buddy!!! - sorry no picture :0(

Alright onto his appointments ...
Appointment #1: We saw our orthopedic doctor and the genetics nurse Practitioner. I love this team. They are fun, easy going and personable. They were happy with Caden’s sleep study results as well as his recent developments. The ortho doctor is not concerned with Caden’s kyphosis at this time. We will take x-rays at his next appointment to follow up. They did feel Clonus in both his feet. This was not present in October when we saw the neurosurgeon. I could tell they were a little worried by this. I told them that I had contacted Dr. Pauli about Caden’s stenosis and that Dr. Pauli felt decompression surgery was needed. But when we saw our neurosurgeron in October he felt the surgery wasn't necessary at the time. I told them I don’t know who’s opinion is best. Our ortho says our neurosurgeon is very conservative. He also said Dr. Pauli tends not to be as conservative. Our ortho says that Caden is really right on the border for decompression surgery and that is why they are following up with Caden frequently. Our ortho said ideally he would like to see Caden walking by 2 (doubt that!). Caden's growth is coming along nicely. On the achondroplasia charts he is in the 50th percentile for height, 75th percentile for weight (uh-0h, we better lay off the Goldfish) and 50th percentile for head size.

Appointment #2: We saw the audiologist. This was just a routine check. Often times kids with achondroplasia have hearing loss because of their chronic ear infections. Caden’s hearing is just perfect :0) We will continue to check his hearing yearly.

Appointment #3: Caden had an ultrasound on his kidneys.

Appointment #4: We saw the urologist. This was a follow up for Caden’s hydronephrosis. His right kidney is doing great and the hydronephrosis has went away. His left kidney is still a grade two, on a scale of 1 to 4.

Appointment #5: We saw the neurosurgeron. This is the appointment I was most looking forward to .... The doctor was running an hour and forty five minutes behind! RRRR!!!! Needless to say my nerves were shot after waiting for him that long with an almost two year old!!!! Then he only spent a maximum of ten minutes in the room with us. I was pissed! and to sum it up ... He is not too concerned with Caden’s stenosis. I told him the Ortho’s concern about the clonus. He checked it, said he wasn’t too concerned. He said as long as Caden continues to develop and does not start to regress he isn’t too concerned. So I’m left confused .... Do I find another neurosurgeon locally to look at Caden? Do I spend the money and fly to see Dr. Pauli? Do I wait until the NY LPA conference in July to have the physicians there look at him. Am I over reacting? The majority of LP’s have a little stenosis. The neurosurgeon see’s stenosis frequently ... Is Caden’s case mild?! Of course I want what is best for Caden! I’m going to email our genetics NP and get her opinion.

So to sum up all his appointments ... We will follow up with each team in 6 months as well as the pulmonologist. We see the neurodevlopmental doctor in a couple of weeks. If that appointment goes well we will not have to return to Children’s for SIX months. Providing that Caden’s development continues to improve. If I notice he is “stuck” developmentally I will need to get in touch with them. It will be so weird to not go back for six months! But I must say it will be enjoyable!!! Enjoyable for Caden. The poor little guy - he starts to whimper as soon as he sees the stethoscope or any other medical equipment coming towards him.

In the last week Caden has discovered he has a tongue. It is really funny to watch him stick it out and roll it around. When we were in the elevator at the hospital yesterday I look down and he is sticking his tongue out. I had to apologize to the others in the elevator and explain to them that he just discovered his tongue.

... and finally. When we got home yesterday Caden's potty chair I ordered him had arrived. We have a long road ahead of us. But he shows interest when Dan and I use the potty - so I figured it's never too early to start tyring :0)
I think this was my longest post ever! To those who stuck with it ~ Thanks, I obviously had a lot to say! Have a great rest of the week!