September 30, 2008

He's Making Progress!

Caden has finally recovered from his FLU - at least I hope! His vomiting continued through Friday. Saturday he only puked twice and once Sunday, not at all yesterday and once today. I feel each of these episodes were a result of too much food, too quickly, on a sensitive stomach! I'm learning we have to go very slowly at getting food back in him. Poor little buddy 4 days straight on Pedialite was not fun. I was lucky enough to wake up Saturday at 4:30 am sick and puking - thanks for sharing Caden! I was feeling better by Sunday afternoon!

I hate to say it but last night we noticed a Caden had a cough as well as a bit of a runny nose which continued through today! Hopefully by November we will be healthy!

My Mom has been here since Sunday - thank goodness! She has been watching Caden while Dan and I work! I can't exhaust all of my sick days the first month of school! We are lucky her job is flexible enough to allow her to work from anywhere. It was funny today when I got home from work. I think Mom was a little exhausted. She hadn't showered yet and was "still" trying to get the kitchen cleaned.

We are leaving tomorrow after work to take my Mom home ... then Thursday morning we have an appointment with the Ear, Nose, Throat (ENT) doctor at Children's in Seattle. This will be a follow up to Caden's awful sleep study. I have a feeling he is going to want to remove the tonsils. Which is fine ... but I'm frustrated with myself for caving in on the fight I put up in June!

I contacted Dr. Pauli's office today. I am asking if he would be willing to review Caden's sleep study results. I'm not convinced our sleep doctor has enough experience working with achondroplasia children. Dr. Pauli's nurse is going to get back to me with an answer.

We are starting to wonder if Caden has a milk allergy ( muh, ma, mia!) (Daddy is allergic to milk) Since he has been vomiting we haven't given him milk. On night two, I noticed he wasn't snoring ... we have noticed this each consecutive night. Tonight he had his first milk bottle since getting sick ... and guess what, Caden is snoring! Is it coincidence? or is he allergic to dairy like his dad? If you have suggestions for a milk substitute that will give him equivalent nutrition I would love to hear it. We know he can't have soy ... he didn't do too well with Soy formula.

Onto happier things ... When Dan, Caden and I went to the grocery store a couple of weekends ago Dan found a way for Caden to sit in the shopping cart. Our grocery store has these small half size carts ... and Caden can sit in them. Very proudly I must say! He doesn't sit well in the front of a traditional shopping cart ... but Daddy discovered he fits well in these. Grammy went to the grocery store with us tonight, so Caden showed off his new trick :0)

September 25, 2008

It's Pouring!!!

"When it Rains, it Pours?!"

As if the stress of the sleep study results hasn't been enough to deal with this week .... Caden woke up at 12:30 last night with a HUMONGOUS Puke! and continued to vomit every 25 minutes till 4:30 am. Dan and I were freaked out. This is the first time Caden has had the FLU! I spent an hour of that time looking online and talking to a pediatric nurse at 2:30 am. At first I was freaked that it could be related to his stenosis. But after talking with the very sweet nurse she reassured me it sounded just like a good ol case of the flu bug. NEAT! The real adventure was filling the nurse in on Caden's health history. The LP Mom's who read my blog can relate!

Our poor little buddy was so green and pale and by 3 am all that was left was flem and suds :0(
I went to work for a couple of hours this morning but Caden vomited a couple more times once I left. So daddy called me back home, as he was overwhelmed and started not feeling so good himself ... I hope I'm not next!

Caden has been sleeping for the last two hours. I am very happy about that. The nurse at our ped's office today said no more than 2 ounces of Pedialite an hour for the first 8 hours after his last vomit. Caden is not TOOO happy about that! I cross my fingers he is on the road to recovery.

As far as the sleep study and seeing the ENT and Neurosurgeon ... I have not heard back from the pulmonologist yet. I sent her an email today.

The last two weeks have held a cold, ear infection, sleep study (with poor results) and now the Flu! This parenthood thing is a lot more than I could have ever imagined! My goodness!

September 23, 2008

Sleep Study Results

Our Pulmonary doctor called this afternoon. And the results are not good! Her exact words were, "I am really surprised, the results are not good, it is much worse than expected". UGH!!! Cadens Apnea-Hypopnea Index (AHI) on his first sleep study on average was 9 per hour. His sleep study Saturday night came back with an average of 33 times per hour. (AHI measures the number of atypical breathing incidents during 1 hour of sleep. An AHI of 5 or less is normal; 5 to 14 is mild obstructive sleep apnea; 15 to 29 is moderate obstructive sleep apnea; more than 30 is severe.) ... Obviously the removal of the adenoids DID not help Caden. The sleep study only showed Obstructive Sleep Apnea ... she didn't see any episodes of Central Apnea. However she is not convinced that there isn't central going on. It may be that the obstructive is so bad that it is "hiding" the central.

She would like herself, the ENT (ear, nose, throat) doctor and the neurosurgeon to see Caden as soon as possible. Maybe as early as this Friday. She will get back to us as soon as she confirms with the other doctors. We will look at surgical options at this visit.

Another struggle with our little buddy ... we remain optimistic that we will get over this hurdle just as we have the others.

... and this is what happens when mommy is talking to the doctor and researching online :0) ... my mischievous monster!

September 21, 2008

Another Sleep Study Down!

We survived! I must say I absolutely HATE those sleep studies! There is not one fun thing about them. This was Caden's second sleep study. His first one was in April - it came back with moderate to severe obstructive sleep apnea (OSA). Since then he has had his adenoids removed. We are supposed to be using the bi-pap but Caden does not tolerate it at all! So ... sleep study number 2, which was last night, was a follow up to see what the OSA has done since the removal of his adenoids. Also, we are looking for central sleep apnea (CSA). This was at the request of the neurosurgeon. The sleep study 5 months ago did not show CSA, but things change. One of the neurosurgeon's factors in deciding to do the foramen magnum decompression surgery is if Caden has CSA present. We follow up with the neurosurgeon after Caden's next CT scan which is the middle of October.

Anyway, so back to the sleep study. For those of you that have never had to experience one of these, first hand, or through your child, you are fortunate! They put all these sensors on Caden's head (aprox 15) with this icky pasty stuff. It reminds me of the the old fashioned white paste in elementary school. Then they put two sensors on each leg, EKG leads on his chest, a pulse ox on his finger, and a couple sensors on his face, plus a nasal cannula. Then they wrap all the wires together and put gauze over his head to keep him from pulling off the sensors. Then they expect him to sleep ... what a joke!!!!

Caden did awesome - I was very proud of him. He only broke down and screamed bloody murder twice during the hookup process, and calmed down within a matter of minutes each time. We bought him a new Backyardigans DVD which helped distract him a little. After he was all hooked up he fell asleep rather quickly. It was two hours past his bedtime once they got him hooked up. Amazingly he stayed asleep through most of the night with all that crap on him. He woke a couple times through the night. The tech came in hourly to change things, adjust things ...I'm not really sure what she was doing ... but I do know I only got a few hours sleep. It is tough to sleep in the same room as Caden because he is such a noisy sleeper, I wasnt in my own bed, I was worried if he was going to wake up and freak because he is covered in wires, and that darn technician kept coming in and out of the room.

We got out of there about 7:00 this morning and were home by 9:30 - thank goodness! He slept most of the way home. Caden immediately went to the bath tub when we got home. There are no bathing facilities at the sleep center. So you get to drive home with your little one full of goopy paste - neat! It isn't convenient for those of us who live 2 plus hours away. We won't know the sleep study results for a few days to a few weeks. After the last study they told us it would be a few weeks but called two days later because the results were moderate to severe.

We are happy to be home ... Caden hung out with Daddy and Uncle Abe today - it was Football Sunday.


Caden & Uncle Abe

... and he's sleeping peacefully now!

September 17, 2008

18 Months!

Today is Caden's 18 Month Birthday! The past 18 months have been rewarding, challenging, exhausting, scary, exciting ... but most of all they have been fun! I am thankful everyday for Caden ... his smile brightens a room and we could not have asked for a happier baby!

Caden had his 18 month well baby check today. I don't take these well baby visits very seriously. Outside of his immunizations the visits really don't apply to us. The questions they ask are geared towards an average height child - of course on the growth charts he's at the bottom for height and weight and top for head (duh!) Caden's ear infection and cold have not cleared up since our visit on Friday so the pediatrician gave us a higher dose antibiotic. I'm crossing my fingers we have this gunk cleared up by Saturday night ... or we will be rescheduling our sleep study (ugh!).

We celebrated Caden's year and half birthday today just the way he wanted. We mowed the grass! Caden has developed a LOVE for mowing the grass. Every time we go outside he whines and leans in the direction of the lawnmower. So we walk over towards it, he gets excited and holds the handle. Only once a week do we actually get to start the lawnmower and mow the grass ... Tonight was the night I put him in the front pack and away we go ... he squeals, giggles, and grins. Seriously, I think it is his favorite thing to mow the grass! I don't know how much longer my back can handle 20 pounds in that front pack - owww! You can tell in this picture he is whining ... the lawnmower was running and the anticipation was making him crazy :0)


September 15, 2008

Hey Dad ...

do you think you can show me how to read this?

September 14, 2008

Caden, You're embarassing me ...

... but I thought it wouldn't begin until he started talking?! The first occurrence was at the grocery store earlier this week. Caden was in the infant seat of the shopping cart flashing the checker his silly smile. The checker thinks he is adorable and gives him a sticker. Caden takes one look at the sticker and hucks it on the ground. Obviously he thought he had no need for the Fred Bear sticker.
Then I'm picking him up from childcare one afternoon this past week and as I'm talking to our sitter I look down and Caden is "digging for gold" in his nose ... ahhh ... As I'm telling him "no, yucky" the sitter is saying "oh, he must get that from Sophia". GREAT! ... So we are at the doctor on Friday, I'm talking to the nurse - look down, and there he is again with his little finger up his nose .... The joys of parenting :0)

Yes, as I said above, we were at the doctor on Friday - UGH! Caden developed a cough earlier in the week, which led to waking up Friday morning with dried snot all over his face. NEAT! He didn't have a temperature so I went ahead and took him to daycare. Dan wasn't able to take the day off work and it was picture day at work for me ... a chaotic day that wasn't easy to take off! The sitter called about 1:00 to say that Caden wasn't doing well. He had vomited from coughing so hard and was just miserable. I was able to cut out of work an hour early and go get my little buddy, which was followed by a visit to our pediatrician. Caden has ANOTHER ear infection (I thought his ear tubes were supposed to prevent those?) as well as a yucky 'ol cold. Another round of antibiotics and the nebulizer. I'm hoping these antibiotics kick in and he is healthy by Saturday. We have a sleep study scheduled Saturday night ... which he HAS to be healthy for.
I'm quite perplexed why Caden gets sick SO often. It seems as if he has a runny nose at least once a month. Out of the other 4 kids at childcare none of them are currently sick.

So when your sick you have to have Chicken Noodle Soup!

Onto other news, my brother called this morning to announce his engagement and to see if Caden can be the ring bearer in their wedding?! (Congratulations Mark & Deborah!) I can picture this adventure already ... 1-Finding a tux to fit Caden and 2-the anticipation of hoping that Caden makes it down the aisle in a civil manner! I'm having flashbacks of episodes of America's Funniest Home Videos in my head right now :0) A date hasn't been set yet ... but I hope Caden starts walking between now and then!

September 3, 2008

Our Evening!

I had a difficult day at work today. There are over 550 students at our school - and a handful of those parents think their child is THE only child at our school, they call multiple times a month with various issues or needs. Today, the second day of school put me over the edge - yes It's only the second day and I've already had it with these parents.

I wonder daily if I am making the right decision by working outside of the home - there are pro's and con's, reason's why I need to and reason's why I don't think I need to ... but I will save that for another post, and in the meantime I will try to hang in there!

Anyway, after a crummy day at work I was rewarded by picking up my buddy!!! Caden had physical therapy after work today. The PT comes to our house once a week. It is convenient that she comes to us. Caden decided to drop out of class again today. The PT and I were talking and the next thing I know he had scooted himself into the next room. He already embarrasses me at 17 months. I look at the PT and say, "oh, I guess he's dropping out?" I hope this isn't an early indication of what Kindergarten holds?!

After PT we went for a walk, ate dinner, had bath time, then we watched the Republican National Convention and then I put buddy to bed. That's a jam packed four hours! Caden absolutely loves bath time. I tried to cover his pee-pee with a washcloth for the video below ... but he kept tossing it off. He can't be mad at me when I show this to his girlfriend down the road ... I tried :0)

video

I've never been into politics - I don't always vote because I don't take time to fully listen to both sides. Our last Governor's race was very close in Washington, and held much controversy... and it was then I realized, yes, my vote does count. Here we are in the Presidential race and this race has become one that will be historic for various reasons. My interest has been sparked by Sarah Palin this last week. I don't know if the Republicans will earn my vote, it hasn't been decided and again I haven't fully educated myself on all the issues ... but I do have to say Sarah Palin put on a good show tonight ... I don't know how much of it was genuine (that's the problem I have with politicians) but her quote below hit home and tugged at my heart!

"Sometimes, even the greatest joys bring challenge, and children with special needs inspire a very, very special love,” Palin said.

“To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters,” she said. “I pledge to you that if we are elected, you will have a friend and advocate in the White House.’’

Will she hold true to her statement? Who knows! - and again I'll save my opinions on health care and accommodating families who have a special needs child for another long winded post - However, she is right about the joys and challenges. I love my little buddy millions! Often times when I tell people I have a child with dwarfism, they look at me with sorrow (it happened again today) but what I tell them is, "I wanted a child so badly - I am happy to have Caden. When I look at all the disabilities out there, having a child with dwarfism isn't that bad. Yes, we will have to make accommodations for him, and yes, he may get teased in school, but I was teased in school for being chubby and Dan was teased in school for being a string bean. "

So with that I am going to bed, so I can wake up and give my little buddy that special love! Sweet Dreams!