November 28, 2008

26 Shopping Days!

"the turkey is perfect" ... yeah, those were Dan's words about my turkey. I successfully made our first turkey dinner. The stuffing was the only part that both Dan and I didn't like, so I have room to improve next year. My little buddy didn't want ANYTHING to do with Thanksgiving dinner - not even the mashed potatoes. Usually he loves mashed potatoes. The only thing he would eat last night was Goldfish crackers! Go figure!

It was SO nice to stay home for Thanksgiving this year. We have always traveled to our families (3 hours away). Thank you family for not being offended we didn't make it this year. I got to watch the Thanksgiving day parade on TV and Dan watched football .... we stayed in our sweats all day and relaxed - the way a holiday should be spent :0)

Today we ventured out to the Black Friday madness .... CRAZY! Dan got to Home Depot at 6 this morning - got what he wanted and was back home by 6:30. Caden and I ventured out about 7:30, went to a few stores ... hit Starbucks for an Egg Nog Latte (in a RED cup) for me and apple juice and lemon loaf for the little man ... went to a few more stores and we were back home by noon. The stores weren't that crowded ... however I think we got the new checker at each store we went to. The lines were SLOW! We spent the rest of the day pulling out the Christmas decorations. I have a *helper* this year, although my *helper* is a bit of a challenge :0)

"Blowing Kisses"

My assistant chef

"I'm not eating this Mom! I'm just going to play in it"

"...and dump it out!"

"get me out of here ... I don't like it!"

My *helper*

Looking out the window at the neighbors Christmas lights

I see you!


Tomorrow we are getting our tree ... and with that there's only 26 shopping days left until Christmas!

November 27, 2008

Happy Thanksgiving!

Caden's Jammies say, "Who are you calling a turkey?"

November 25, 2008

No Santa This Year ...

… picture that is. I’m not one bit worried that Santa won’t visit Caden. I have a feeling Santa will leave gifts for Caden at various houses through Washington State, because he is well loved :0) The No Santa refers to a Santa PICTURE. We attempted to see Santa at the Festival of Tree’s this weekend and Caden wanted NOTHING to do with Santa :0( We may try to visit Santa again in a couple of weeks – I have to decide if it’s worth the trauma.

Can the terrible two’s develop at 20 months? Caden has been very whiney lately if he doesn’t get his way and is getting very good at kicking his legs and throwing a fit. It is making me crazy. He does know no though. When the whining picks up I very sternly say NO, and he knows – he stops the behavior. His bottom lip starts to quiver. It’s sad, and I’m learning that is one of the hardest parts about being a parent – disciplining your child. But at the same time I cannot let my child become one of those bratty kids we have at middle school! The other night he woke up with gas, after the gas was out, he was still screaming. Not a scared cry, not a hurt cry but a pissed cry. The scream was so high pitched. I had to tell him to stop the drama! Please!

Developmentally Caden is doing well. Last night he attempted to climb into the kitchen cupboard for the first time. I was ecstatic! I know, most parents would say get out of the cupboard – but hey, he’s climbing and we’ve waited 20 months for that! Now when he starts to climb to the counter – we will say no!

I think he knows he's cute!

Giving his bear a "bear hug"

This kid LOVES the swifter - he drags it all over the house

Did you know - Cars are a food group

I think my Mom has a similar picture of me with headphones on

Caden Loves to "Write"

Yeah, he climbed up!

... and this is what he was after!

How long do we have to play the open/shut door game?

His Whinny Face....ahhh!

Wishing you a Happy Thanksgiving. We are staying home this year and I am looking forward to making my own First Turkey Dinner … Could be an adventure … Hopefully we don’t end up at McDonalds!

November 20, 2008

Dwarfism Awarness!

I encourage you to click over to Tonya's blog, "What is Normal" and read her latest post. Tonya is the mom of adorable Knoah, who just turned two! She is a great advocate for little people - and her latest posts about dwarfism awareness is one I feel that is worth reading! I feel so fortunate to have our blogs to help educate society on dwarfism! What a great opportunity! My goal is to gain enough awareness about achondroplasia that spell check recognizes it as a word :0)

I am so happy to have Caden! As I've said before, who cares that he has achondroplasia. I wanted a child so badly ... and when you look at all the disabilities out there, achondroplasia isn't that bad! Yes, he's cost us a ton in medical bills and his gross motor skills are delayed, but other than that he is the same as any average height child! We don't let his achondroplasia effect the way we are raising him! Yes, he may get teased in school ... but I was teased for being chubby and Dan was teased for being a string bean. I see it daily at work ... kids are kids and the mean one's will find something to tease kids about - whether it's their height, weight or color of their hair - it happens!

"A person's a person, no matter how small." -Dr. Suess

Caden Climbed Me!

Dan and I were very excited last night .... We were playing with Caden, I was sitting "criss cross applesauce" on the floor and Caden rolled over to me, then proceeded to climb up on my lap and pull on my shirt collar to reach/pull himself upright. YEAH!!! This is a big accomplishment for Caden because he has made little effort to climb or pull!
He also sat unassisted (even though I was right behind him to catch him) for about 5 minutes to play with the stereo!
I am hoping his tonsillectomy has helped his apnea, he is getting better quality sleep, and therefor having the energy & strength to work on his gross motor skills - just my thoughts/hopes! We wont know how his apnea is doing until his follow up sleep study which is scheduled for January 2nd.

November 16, 2008

20 Months!

and where has it gone? Buddy will be 20 months tomorrow!



Caden has recovered nicely from the trauma of his tonsillectomy. He had his days and nights messed up last week. He was waking up and wanting to go outside in the middle of the night. Thankfully last night he finally slept through the night and I hope he chooses to do the same tonight. I returned to work last Wednesday and my Mom came to watch Caden - thanks Mom! Tomorrow we return to our regular routine and Caden goes back to childcare!

At 20 months Caden is full of energy and laughs!
* He loves to wave hi and bye.
* He gets around the house no problem - in his own way. He isn't sitting unassisted or standing & walking yet.
* He loves the cats and thinks they are funny.
* He likes to clap, say yeah, and dance.
* He knows "no" ... and isn't afraid to tell you no. He shakes his head and tightly closes his mouth if we try to give him something he doesn't like.
* He thinks everything is funny and has the jolliest laugh.
* He loves anything with wheels and thinks it is hilarious if you race his cars across the floor.
* He loves sticks and the swifter. He will spend all day pushing the swifter around the house.
*He loves to play open & shut door, and thinks it is funny when you knock on the door.
*He likes to write with pens and pencils, he chooses those over crayons. And he loves to "help" Mom & Dad on the computer.


I can't believe we are well on our way to "2".

It's A Reality....

it's no longer a dream! We ARE going to New York in July for the LPA National Conference! I am so excited. My Aunt Louise donated air miles to us ... and with the combination of hers and ours we were able to purchase 3 tickets to New York! This is going to be an awesome opportunity for Dan and I. We will attend seminars on Dwarfism and have the opportunity for Caden to see world renowned doctors who specialize in achondroplasia dwarfism! Caden will get to meet several of his LP buddies .... although he probably won't remember it. We hope to attend many of the LPA Conferences through out the years. This will be Caden's opportunity to meet other friends his size :0)

Now to start saving for the 6 nights hotel ... Yikes! My parent's have a fountain in their front yard that they have marked as "Caden's Coins" and are generously giving us those coins for our trip. So if you go by Grammy & Grandpa's drop in a quarter or two for Caden :0)

November 9, 2008

HOME!!!

We were able to come home last night! I'm not sure who was happier to see their bed, Caden or I! Five nights of sleeping on a vinyl bench sucked!

As we were leaving the hospital all the nurses were saying bye to Caden ... and sadly enough he seemed a little puzzled and we saw a bottom lick pucker. We think he was sad to be leaving. Although he was very smiley when we put him in his crib, and was full of smiles today! Caden is back to about 60% - we can tell he is in a little pain and is very tired, but considering where he was 3 days ago he is doing GREAT!

Breakfast didn't go as expected this morning - I tried yogurt, pudding, jello, and Gerber baby food, and he put his hand up to all of them. So he had pancakes and scrambled eggs with Dad. Who would have thought he got his tonsils out 6 days ago?!
As promised here are pictures of the little munchkin!

A great thing happened while we spent 6 days in the hospital ... the RED CUPS came back! Although I was a little sad that the design is slightly different this year. I enjoyed the previous year's design more ... but none the less it's still the Red Cup!!!!

November 7, 2008

Our Little Champ ...

As easily as Caden confuses the doctors he also amazes them! Caden has done wonderful since his extubation. The doctors are surprised how quickly he became alert after being sedated for 3 days and how nicely his lungs are doing. His respirations, heart rate and oxegyn saturation level have been wonderful all afternoon - a nice clean rythym!

He has drank from a bottle twice, with no problems! He is being cheesey - his smile is funny because his face is still swollen. He is dancing, and literally trying to crawl out of his crib. He is talking, clapping and flirting! His ENT and Pulmonary doctors stopped by this afternoon and are both happy with his progress.

It looks like we will get to go home tomorrow - WONDERFUL! I have one sticky, sweaty little boy that desperately needs a bath!

The Tube is Out!

They took Caden's tube out! Yeah, very quickly after they told me it would be another three hours. He came off the pain medicines and sleepy medicine much quicker than they anticipated so that meant off the vent that much sooner.

He is doing good! His oxygen level is good, heart rate good, and I'm seeing his personality. He is already clapping and flirting with the nurses. That's our boy!

Thank you to everyone who helped us get through this last week! Continue thinking of Caden as we DO NOT want a relapse. I'm keeping him home for a while, no adventures. I have to keep his lungs healthy! We will probably remain in the hospital until Sunday.

Hugs!

Progress!

k - So my Dad doesn't get frustrated for not updating. As of right now, 10:15, they are going to remove his breathing tube in a few hours! Keep your fingers crossed!

... on the edge of my seat!

Caden had a good night. They have had him on test mode the last 2.5 hours - the ventilator is turned down and he is holding his sats wonderfully! His levels tested good this morning. They took an xray at 5 am, 8:20 now, and I am still waiting for the official word from the dr. The ENT docs were in to look at him and they said the xray looked better, still wetness, but better. The respiratory therapist is happy with what he saw. SO we are just waiting for the head NICU doctor to come in and give us the word - can we extubate (take the ventilator tube out) or not?!

I'll update as soon as I can!

November 6, 2008

Update!

... k, I talked to my Dad this afternoon and per his orders, apparently I'm not updating my blog enough! Please understand that even though you may be sitting at home wondering, there isn't a whole lot to update on.

Caden is asleep, and with the help of drugs he has been asleep for the majority of the time we have been here. He isn't suffering from much pain. Only for a few minutes, if/when he wakes up, but they quickly give him meds to help him relax and ease the pain.

Caden's day was relatively good ... no set backs other than the continued wetness in his lungs. His levels are all good, he is peeing out the excess fluid like they want him to, he is relying less on the respirator to breathe and is keeping the food down they are gavage feeding him. SOOO - if the xray in the morning is good they will take his tube out, if it's not a good xray then another day of the tube.

I emailed his pulmonologist/sleep doctor today and she stopped by to check on Caden. She appreciated the email. I had asked a few doctors to let her know we were here but she never showed. So clearly they never asked her. Her main concern is making sure the lungs are ready before they take the tube out! She trusts the ICU doctors and feels we are in good hands.

Cross your fingers for a good night and a great day tomorrow. I'm going to do laundry again tonight ... wish me luck there too :0) Thank you again for all your comments ... and your humor!

... and the wait goes on

Caden had a stable night. They have been able to reduce the settings on his ventilator a little. They are letting him do more of the breathing on his own. They were planning to take the breathing tube out around 10 - but things change by the hour! His xray showed about the same amount of wetness as yesterday so they will wait to take out the tube. The plan now is tomorrow morning ... but again, that could change.

The most frustrating thing is all the different doctors, nurses, residents, fellows, etc. And they all have their own opinion. One doc or nurse will tell us the plan then at shift change the plan changes. I think I irritated the doctor this morning. I asked him, " how much experience do you have with achondroplasia children? I know their breathing tends to be different than an average height child". His response was quite a bit, and then he rambled off some stuff. I can feel my temper starting to boil ... breathe! ..........

The doctors tell me he isn't getting worse .... just in true Caden fashion, he is taking his time!

November 5, 2008

The Waiting Game!

Caden continues to puzzle the doctors. I told Dan, I know under his sedation he is flashing that shitty smile and saying, "I'm having fun making the doctors wonder and making Mommy and Daddy Frightened!" Rrrrr!

They took another chest x-ray this afternoon and that is showing some wetness in his lungs. What does this mean? They aren't sure. It could mean infection ... but he has been on antibiotics for what seems like forever now (4 weeks) or he isn't eliminating enough fluids. They took blood work and that all came back fine, showing no sign of infection. They have been giving him a medicine to help eliminate the excess fluid in his body (which includes the lungs). According to his diapers he is doing a good job getting rid of the fluid. It is amazing how scientific the process is weights, measures, etc. to figure it all out.

They did an echo cardiogram (ultrasound of the heart) on him today and that came back fine!

Tonight his numbers/levels are looking better. SOOO as long as he continues with the trend he has been on this evening and his chest xray in the morning looks better than the one this afternoon, they will remove the breathing tube tomorrow afternoon.

The nutritionist came in today to talk with me about what Caden eats on a usual day. They are going to start gavage feeding him (a tube through his nose - flashback 19 months!) She told me usually they don't ask parents these questions but with Caden having Achondroplasia they are never sure the proportion of food they eat compared to a normal child. (I corrected her and said "average height" child - Caden is NORMAL!) She also said she doesn't have a chart that shows the average weights for children with achondroplasia. So, da, da, dun I whipped out the Caden bible binder and showed her what she needed. She was so happy, she said they have looked and looked for such a resource but have never been able to find a chart. (I think I have Tonya - another LP mommy, to thank for that) She was so ecstatic and photo copied the chart. And I gave myself a pat on the back :0) ... anyway so back to Caden! They just started his first gavage feed of formula ... yes formula, we are regressing - it's easier on the tummy. They are starting him with very small amounts once an hour until 2ish this morning. Since he hasn't ate since Monday morning they are being sensitive of his tummy. Then they will stop because he has to have an empty stomach when they remove the tube.

The anesthesiologist, Dr. Anderson, came to check on him today. I love that anesthesiologist. I email him for all of Caden's procedures. He use to work at a skeletal dysplasia hospital. He didn't think he would be able to do Caden's procedure on Monday, but he was able to change things around and be there. Yeah. He is a very nice man.

... and I found my PJ Pants! I went down to the restroom a bit ago to clean up for bed. And I thought I'm gonna check that laundry room one more time. I walk in, look in the basket on the floor and there are my PJ PANTS! So now I really don't get it. I went back down to the laundry room last night and rechecked the washer and dryer and the basket. Did someone jack them, didn't like how they fit and then returned them? Or is someone pranking me because they know I need some humor in my week?! I got a good laugh out of everyone's comments about them.

I think that about sums it up for the day. I hope Caden has a good night, doesn't take any wrong turns like he did this afternoon, and we remain in an uphill direction. The day's are seeming really long and I'm forgetting every little detail. I think I am developing 8 x 8 room syndrome again. That is in reference to the little room I sat in when Caden was born and had to spend 31 days in the hospital ... believe me you get really tired and everything becomes really funny! It looks like the soonest we will be out of this place is Saturday.

Thank you so much for all of your comments ... they are appreciated! I truly am udnerstanding what they mean by two steps forward and one step back.

and I promise when Caden is well and I have my camera cord with me, you will all get an overload of Caden pictures!

Morning Update

I will give a quick update since I know many of you are wondering. Caden remained stable over night. As I type they have just reduced the pressure on his ventilator. This is a two hour test to see how he does breathing on his own. If he does well, they will put a scope in through his nose, check the swelling in his throat, and if the swelling is down they will remove his breathing tube. Cross your fingers!!!

*10 minutes after I hit publish on this entry* Never mind the above ... the ENT just came in (see how quickly things change!) to check the swelling. The swelling is reducing nicely. It has reduced more than he expected. However to be safe we are going to keep him on the ventilator at least through the afternoon but more likely until tomorrow morning.

He spiked a little fever in the middle of the night. They aren't sure why ... but it has since went away. They took a chest xray a little bit ago and that looks okay.

I did Dan and I's laundry here at the hospital last night. When I went to get my pajama pants on last night I couldn't find them. I think someone jacked them from the dryer. Can you even believe it?! The Nerve!

Sorry I haven't had the opportunity to call many of you who are anxiously awaiting updates. Please know that I will update my blog as things change!

:0)

November 4, 2008

Breathing Difficulties

... the challenges continue. Caden was not tolerating the bi-pap. His CO2 levels continued to increase which was leading to respiratory distress. So they had to intubate him. What that means is they have given him morphine and similar painkillers to make him extremely comfortable and he is on the ventilator, breathing through a tube down his throat. His swelling in his throat was continuing to increase.
Dan and I were quite scared ... however after having it explained to us exactly what is going on we feel better. As long as the swelling subsides, which it should, Caden will come out of this just fine. It looks like we might be here for the remainder of the week. Good thing they have laundry facilities, Dan and I only brought enough clothes for 2 days ... oops!
He is resting comfortably now, hopefully this trend continues and I will not update until tomorrow! Thank you for you words of support!!!

A Loooonnnnggg Night!

Well in true Caden fashion he is keeping the doctors and nurses guessing! He has seemed to gone in a reverse direction overnight. He was content the first few hours and slept relatively well. Around 2am his breathing became more "gunky". At 5 am when they checked his blood, oxygen level it was extremely high. The blood oxygen level measures the carbon dioxide in comparison to the oxygen. To help correct that we had to put the c-pap on him. Since the c-pap has been placed on him his levels have went back down. Not to average, but down. As long as Caden has Obstructive sleep apnea they will never be average. The ENT just came in to check on him and his throat is very swollen. More so then the doctor is used to seeing, so they are going to start him on steroids to help the inflammation. He has quite a bit of clear, goopy, gunk coming out of his mouth, which also makes it hard to breathe!

I haven't been told yet, but my gut tells me we will be staying another night here! I feel Caden is no where near ready to go home!

November 3, 2008

Tonsils are Out!

We have survived so far! Caden's surgery was not until 4:15 this afternoon which made for a VERY long day! He couldn't have solids after 8 am this morning. His surgery went well. The tonsils were removed, the adenoids have not grown back, and his ear tubes are still okay. His breathing is a little "off" which also happened after his adenoids were removed in July. So better to be safe then sorry ...Caden is in the NICU tonight for observation. I am looking forward to a night of sleep on the vinyl bench ... not!

I am SO happy that I have Internet! Seriously ... I don't know what people did 15 years ago before the Internet. I created this Blog to keep my family and friends up to date ... however it has become much more than that! It has become a life line! As an added bonus I have met so many wonderful LP Families who I can relate to! I would feel so alone without them (you!). As much as I love hearing from my LP buddies I also love to hear from my family & friends!

A quick story ... the night Ear, Nose, Throat doctor just came in to check on Caden. He asked how he was doing and I said "he's doing well, he's been content for about a half an hour, when you take the blo-by away his sats drop a little". He asks, "are you a nurse"? I said, "no, why". He said, "I've never heard a parent use the term blo-by". OKAY - Proof, I've spent WAY too much time in the doctor's office and hospital's in the last 19 months! ... (Blo-by is the tube that they put near the patients nose that give oxygen.) My mom and I had a good chuckle ... told you achondroplasia was my new hobby :0)

Hoping that Caden has a good night ... and we get to go home tomorrow! Thank you for your thoughts! Sorry no pictures :-(

November 1, 2008

The Exhaustion of Halloween!

Caden had a fun Halloween! He had a party at childcare. Once we got home Dan and I suited him up in his puppy costume and we hit a few of our neighbors houses to say hi! Dan's sister, her husband and little girl, Lilly, have come to visit this weekend. They live in Kirkland (about 2.5 hours away). Lilly was very eager to hit the streets in her Scooby, Scooby, Dooooo costume! She has quite the Scooby voice. I should try and get it on video. Caden was saddened that every one was leaving without him. So we bundled him up and he got to join in on the trick o' treating fun.

I think Caden is suffering with a Halloween hangover :0) He went to bed a couple hours later than normal last night ... woke at normal time this morning, but now it has caught up with him. He literally fell asleep while eating his mac-n-cheese for lunch. One of the funniest things I've ever seen. So nap time is an hour earlier today, and he is out!


Caden's cool Halloween Present from Grammy!

I love his puppy dog tail :0)

Someone wasn't cooperating with the camera

The Doggies!

Trick o' Treat

Why does Daddy think he has to antagonise Caden with the scarecrow?

Peek a Boo!



Enjoy the rest of your weekend!