April 28, 2008

Eggs n Toast Please ....

It was a great weekend and a great parade! Caden loves a parade as much as his Mommy. Caden was a little scared of the sirens on the firetruck at the beginning of the parade -he cried big tears but quickly got over it. After his little panic attack :-) Caden contently watched each group go by, and would give us a big smile when we looked at him.


After the parade we went to lunch and then took Grandpa to the airport. Unfortunately Grandpa missed his flight. We got him there 25 minutes before the flight departed - but he needed to be there 30 minutes before the flight departed. I am NOT IMPRESSED with Alaska Airlines Customer Service!!! So Grandpa ended up driving home and Grandma flew home Sunday. Grandma couldn't leave Baby Caden a day early, and Grandpa couldn't wait to get home to be with Uncle Bailey (dog) .... yes, Grandma & Grandpa are a little obsessive :-)

I have decided it was a good thing Grandpa missed his flight ... on the way back down the hill from the airport we passed by the baseball field. At the same time my parent's said, "hey there is a little person playing baseball". I said it must be Bob's kid.

(I met Bob on the Parents of Little People message board. Bob is an achon that lives only a few miles away from us. His wife Bekki is average height as well as his daughter Lexi. His son Chase is 7 and he is an achon also. Bob and I have communicated via email but hadn't had a chance to meet.)


I couldn't turn into the baseball field fast enough. We walked over to the field and introduced ourselves to Bob and his family. Chase had just finished his baseball game. It was so nice to meet them. Bob and Bekki are a wealth of information ... and Bekki couldn't get enough of Caden. I think I have found a backup sitter if needed :-) I emailed Bob yesterday and he sent me Chase's schedule - so we can go watch one of Chase's games. For those of you that know me you know how much I love baseball ... and to watch a little person play, yipee!

I told Bob I feel like I met celebrities (I know, I'm a dork). It's the feeling of having someone so close with achondroplasia - just like Caden. I hope Chase can be a big brother to Caden through out the years!

Bob and Bekki also shared with us that the Little People of America Convention is being held in New York next year - June 2009. Yippee! I've always wanted to go to New York and now I have a reason - Donations for our trip will gladly be accepted :-)

Another little tidbit on Bekki - she had seen Caden and I grocery shopping one day and looked at Caden and knew he was an achon baby. She didn't feel it was right to say anything to me. I wish she would have ... I told her she probably could have diagnosed him since the doctors couldn't seem to get it right. You never know who's watching you.

Sunday morning Caden got his first REAL breakfast ... eggs and toast. Caden had more fun dumping the eggs and toast off the plate and hamming it up for Grandma then eating his breakfast. I am amazed how quickly kids learn to show off ... and believe me ... Caden knows how to "ham it up" for Grammy.



Caden loves that the weather is warming up. He loves to have bare feet and scoot around in his onesie.

Caden is still fighting his cold. The sitter called me at work yesterday - Caden had vomited twice. Most likely because he was choking on the drainage going down the back of his throat. I called Dan to pick him up from daycare and I left work early to meet them at home. That little S*&t. I think Caden already knows how to pull the wool over my eyes ... the picture below shows his expression when he and Dan walked in the door from daycare ... doesn't look very sick to me ... I think someone was pulling our leg. Okay, I do know he is sick ... but he hides it well.

I think someone is ready for their first haircut!

Have a great week!

April 25, 2008

Stop & Take a Breath!!

Well ... first off I must say I LOVED seeing the Roloff's on Oprah yesterday. I love Oprah & I love the Roloff's so it was a perfect show! I appreciate Matt & Amy opening their homes to us on their show ... and as Matt said one of the reason's they do the show is to help first time parents of achon's know what to expect. If it wasn't for Little People, Big World and the POLP message board I would be at a lost!

I am having a crabby day ... that brings me to my subject: Stop & Take a Breath! As I said in a previous post they want to do another MRI of Caden's Foramen Magnum. I understand that the Foramen Magnum needs to be watched very closely. But what I don't understand is the scheduling. I wanted to schedule this the day before or the day after Caden's visit with Urology in May. .... but they don't have time available those days. So that means ANOTHER 3 hour trip to Seattle - more days off work without pay, more gas, more hotel, etc ... (these doctors don't understand I am spoiled! and I want it my way). I have emailed the geneticist to see if this appointment can wait 8 weeks. This is a very busy time of year since I am full of end of the year activities at school. But at the same time I don't want to put my son at risk!

I am STILL waiting for Apria Healthcare to contact us to set up the Bi-Pap. I finally called Nurse Susan at our pediatrician's office (who I love! - she is so accommodating!) and she recommended another company we can go with. I called the nurse at Children's and let her know to contact the other company since Apria has crappy customer service and has not contacted me yet. Hopefully they will contact me soon - we are going on 2 weeks since our sleep doc visit.

All this while I'm trying to maintain my Monday through Friday job ... and help Dan with the secretarial side of his business. AHHH!!! No wonder I need to remind myself to "Stop & Take a Breath!"

.... and now the thing that keeps me going! CADEN!!! Our little buddy is starting to bear more weight on his legs which is REALLY exciting! He is mixing up his sounds ... instead of just da, da, da ... he will throw in da, na, na, da, ba all in the same sentence. Last night Dan shared his scrambled eggs with Caden. Caden loved them and proceeded to cry when they were all gone. So I got him a bowl of puffs ... he sat in my lap and ate them out of the bowl like it was popcorn. TOO CUTE!

The Apple Blossom festival begins today. Grammy & Grandpa are coming to visit this weekend. We are going to the kiddy parade tomorrow which should be fun! I think I am long overdue for the weekend! ... Enjoy your weekend!

April 22, 2008

Blue's Clues

Dan and I witnessed the cutest thing last night!!! I normally don't let Caden chill in front of the T.V. But last night I needed a break, I have an awful cold - and Dan wanted to workout. I turned on the NOGN channel and found Blue's Clues. Caden LOVED it! He was laying on his side, chewing on the spatula he found in the dishwasher (don't worry it was clean) and laughing, chuckling and smiling at Blue and Blue's friends. I wish I had my camera - I knew if I got off the couch to get my camera he would get distracted and move by the time I came back. It was TOO CUTE!

Oprah!

An FYI for those of you who are into the Roloff's as much as we are ~ They are going to be on Oprah this Thursday!

April 18, 2008

Where Does the Time Go?

FINALLY - I am getting around to the stack of pictures that have been sitting on my desk since December. My Mom got me all this really cool scrapbooking stuff for Christmas. Sadly it has been sitting in the box since I brought it home. I still haven't figured out how Mommies have the time for scrapbooking ... I'm trying REALLY hard to find it!

As I am going through these pictures I realize I should put a frame together with a picture in it of Caden at each month's birthday. Here is what I have gathered! Enjoy ~





1 Step Forward and 2 Steps Back ...

.... Or is it 2 steps forward and 1 step back? Who knows anymore!

The nurse called from Children’s Genetics yesterday. They have decided they do want to do an MRI with flow on Caden. Which of course has to be done under anesthesia.

Genetics and pulmonary talked with each other after our appointments earlier this week. They are concerned as to why Caden arches his head back so far. The CT scan we had done in January here in Wenatchee doesn’t seem to show a blockage or too much narrowing of the Foramen Magnum. So they are a little puzzled what is causing him to arch.

AND since he is going to have to have anesthesia for the MRI genetics is thinking maybe they should do his tonsils and adenoids at the same time. They are going to talk with the ENT.

I am not against the MRI, I know the Foramen Magnum is something that needs to be watched very closely since the compression can be “silent”. It’s the frustration of traveling to Seattle again. I called to radiology to try and schedule the MRI the same time we will be there in May for Urology. Of course they are all booked up during that time. So that means yet another 3 plus hour drive to Seattle and more days off work without pay (I depleted my sick pay for the school year by February!).



AGAIN – I look at my adorable little buddy and he makes it all better! I look forward to a month when we have NO doctor’s appointments!

April 16, 2008

Check it Out

I found this article to be inspirational ... Caden can do anything he wants to! ...
http://seattletimes.nwsource.com/html/highschoolsports/2004349161_ringer15.html

We Made It!



Our trip to Seattle was successful! Overall everything went well. To sum it up ~Caden is an average size little person :-) He is in the 50th percentile for a little person. We really liked the nurse practitioner and doctor that we saw in the skeletal dysplasia clinic.

His bones (skeletal) everything looks good right now. The narrowing in his spinal canal isn't putting pressure on his spinal cord, so that means no decompression surgery at this time (whew! A lot of little people need this surgery). The extra water in his head is okay - it isn't in the ventricles of the brain, which is good. The gibbus in his back (back bone curves out near the bottom) is expected to straighten out once he starts walking. His next check up is scheduled in 6 months.

The Obstructive Sleep Apnea, that is a little more concerning. On average Caden's airway is collapsing 16 times an hour in regular sleep and 37 times an hour in dream sleep.

We met with the ear, nose and throat doctor. As far as the size - Cadens tonsils are about a 2 on a scale of 1 to 4 and his adenoids are about a 4 on a scale of 1 to 4. The ENT said if Caden was an average size person she would remove the adenoids ASAP. However because of the anesthesia (*see below) risk with a little person she is more cautious. Removing the adenoids and tonsils are also not a guarantee that it will correct the apnea, it should help with it though. She suggested that when Caden's first set of ear tubes fall out and we replace them we could do the adenoids and tonsils at that time. The tubes should fall out in 6 months to a year.

We then met with the pulmonary doctor to discuss the sleep study and bi-pap. The bi-pap is compressed air that is given through a mask while Caden sleeps. The air keeps the airway open. Are you thinking what I'm thinking? Yah, how do I keep a mask on a 13 month old while sleeping. Yes, it will be a challenge. The pulmonary doc said it is about a 50/50 chance that he will tolerate the mask. But it is worth a shot to avoid the surgery of the adenoids and tonsils. However the pulmonary doc is going to connect with the ENT doc. The pulmonary doc feels that Caden should have his adenoids out sooner.

They took blood so they can check a few different levels. Caden did not appreciate being poked. Nor did he enjoy having the tube shoved up his nose so the dr could look at his adenoids. The picture below shows - he was quite intrigued by the green gauze bandage they put on his finger after having his blood taken.


We return in May for a check on his hydronephrosis (kidneys) and also to have an EKG done as well as a chest x-ray. The pulmonary doc wants an EKG because apparently Caden has a high heart rate while sleeping. And the chest x-ray is to compare against the x-ray he had done in January.


*So now back to my * above. After talking with the doctors we saw at Children's the last two days and conversing with the parent's on the Parent's of Little People chat board I have learned a lesson. Caden had his tubes inserted here in Wenatchee in March. I think highly of his ENT doctor here in Wenatchee. (In fact she recommended if we did the adenoids and tonsils to do it at Children's). However the anesthesiologist I am NOT impressed with. On the day of Caden's procedure I met with the anesthesiologist. I shared with him the risks I had heard about achon's and anesthesia. I felt the anesthesiologist blew me off. After the procedure I met with him and he did say they had a little difficulty getting the tube down and his tongue wanted to roll back. Since his tongue is larger the airway was harder to keep open. (DUH-He should have listened!) I now truly understand the seriousness of anesthesia and a little person. I have also learned that I MUST BE an advocate for Caden. Obviously this is a lesson that doctors really don't know everything. Looking back on that day I am so thankful the procedure went fine!

One of the better parts of our visit at Children's was meeting Kelsey. Kelsey is a four year old achon. And she is ADORABLE. This was the first little person Dan, Caden and I have met. Kelsey does not let her size get in the way. While Dan and I talked with her mom Kelsey pulled a chair over to the sink, got up on the chair and washed and sanitized her hands repeatedly (it was a game to her-and very cute to us). Her mom gave Dan and I some tips on things to start doing now with Caden. Her two cents was very much appreciated.

We did get some fun in on our trip. We took Caden to the aquarium in Seattle. It was fun ~ and Caden was quite mesmerized by the fish (see below pic). His BIG brown eyes were checking everything out. However I think he enjoyed the lights in the ceiling more - typical Caden :-)



It is nice to be back home. It rained all three days on our visit to Seattle. So, again I am reminded as to why we moved to Wenatchee .... It's sunny here!!!

April 12, 2008

Daddy is Silly


I got Caden dressed this morning ... I must say, he looked adorable! When Dan got dressed for the day he decided he wanted to look like Caden .

You can't see Dan's shorts ... but they are the same color as Caden's. Silly!

April 11, 2008

Welcome


Hi Friends & Family!

I have decided to create a blog! Why? This will allow you to watch as Caden continues to reach new milestones, visit as often or as little as you wish for updates.



So How is Caden?

Caden is doing good (regardless of what the doctors say) - he is just about 13 months! Wednesday, the 16th, Marks one year since Caden came home from the hospital! Yipee!!

Over spring break Caden swang for the first time. He loved it! He also loves his Uncle Bailey (dog). He likes to pull his tail and grab his paw. Bailey just lays there and tolerates it.



This past weekend he started picking up little Gerber puffs (the size of cheerios) and feeding himself. He chokes occasionally, but that is part of the learning process - correct? Daddy thinks otherwise. It makes daddy nervous every time Caden chokes. This past weekend he also held his bottle by himself while laying on the floor (a first) ... guess he doesn't need mommy or daddy anymore :-)



We head to Seattle again Sunday night for another journey. Monday we see the skeletal dysplasia doctor hopefully for a true diagnosis and the ENT doctor. Tuesday we see the sleep doctor. Caden didn't do to well with his sleep study over spring break. On average his airway collapsed 16 times an hour. It looks like obstructive sleep apnea. Treatment for this usually includes removal of tonsils & adenoids and or a CPAP while sleeping. UGH! But again we will find out more on Tuesday.

We are very lucky to have Caden. He is a VERY happy baby. He smiles from the time he wakes up until the time he goes to bed.

The weather is finally warming up, the tulips are up, and the grass is turning green. I can't wait for Caden to roll around in it. I'm sure those will be cute pictures :-)

So, again, check back frequently as I will try to update this at least once a week!