Tuesday, December 30, 2008

A White Christmas - YES!!!

For as long as I can remember I've wanted a white Christmas. I've lived in the same town here in Washington all my life and I don't ever remember snow on Christmas. Snow before yes, snow after, yes, but never actually on Christmas. This year in the week and half leading up to Christmas we were blessed with over a foot of snow; almost unheard of here in this area of Washington. I know that a lot of people hate the snow and the inconveniences and even dangers that it causes. To me however, the snow is magical. I love the way it covers everything in its pure white blanket, making everything beautiful no matter how ugly it was to begin with. This was Drew's first real snow. We had a couple inches last year, but Drew was too little and way to sick to really experience it. What a difference a year can make!

Santa Tony and his elf Drew

Me and my little Drew-bear

Ooooooh it's COLD!

First taste of snow, I think I prefer my Cheerios

Tony & cousin Meshayla taking a break from their snowball fight

Break is over!

I can do it myself...

Ahhhhhh! Get it off!


I hope you all did have a merry Christmas; and heartfelt wishes to all of you for a very happy New Year!

Thursday, December 18, 2008

rashes and fevers and appendix's oh my!

So Tony finally had his appendix removed on Friday. We stayed at Children's Hospital in Seattle overnight. I'd thought with all the hospitalizations we've had in the past year with Drew that I'd stayed pretty much everywhere in the hospital but this one was new. We spent the night in one of the "new" observation rooms. The accommodations were not so good. Its probably best I don't go into it. I will just say that its a good thing it was just one night. The staff was great though. We left on Saturday afternoon, the car ride was not so fun for Tony but at least the weather held. I was happy to get home to my littlest monster but upon arrival I noticed the littlest monster didn't seem to be feeling quite his monstery self. I took his temp and he was running a low-grade fever 100.7 soooooo, two sick kids. Arrrggghhh. Then.... Sunday morning Tony wakes up with a very interesting looking rash. In the perfect shape of where they taped him off for his surgery is a bright red bumpy horrible looking rash. Super itchy according to Tony. It seems his skin had a bad reaction to the soap or whatever they used to clean the surgery site. So add benedryl to the pain meds. Poor kid. 4 days later and its just now starting to get better. Drew stopped running a fever Monday, and then Tuesday night HE gets a rash. Much different from his big bro's . I don't know if it itches him since he can't tell me. It looks exactly the same as the rash he got the week after his immunizations, pink and blotchy. It seems better today. But now my dear husband seems to be coming down with a rather nasty cold. Sheesh. When will it end?

Sunday, December 7, 2008

One Step at a Time

Has it really been weeks since I posted here? Shame on me. In my defense things have been a bit nutty here. ok, ok, they are always nutty. I should say nuttier than usual. Here is some of what has been going on these past few weeks.

1. Gobble, Gobble, Gobble

Ahhh, the blessings of a mixed family. We had 3, yes 3 Thanksgiving dinners. Tony had 4! Its a darn good thing we all like turkey! I must admit it's a bit of a mixed blessing. It was just a little exhausting. But really, I feel so fortunate to have so many people who love us and want us around to celebrate with them. We have so much to be thankful for.

Drew and his Grandma Bacon

2. Hot Water for Christmas..

Yes, that's right. For Christmas this year the Dennis family will get to have hot water. Our hot water heater, which was older than me (ancient for a hot water heater) decided now was the time to stop working. I'm sure it was very tired and more than ready for retirement but the timing kinda sucks. Fortunately for us our home owner insurance covers most of the cost, but things were really really tight as it was and a few hundred dollars or so... well, lets just say its a whole lot more than it used be. So, as we all open our dollar store stocking stuffers we will remember that the hot shower we just had was our real present. Maybe I should put a bow around the shower head? :)

3. More Than a Blown-up Appendix?

This is how Tony refers to his current medical condition. His "blown-up" appendix. I still can't believe that he burst his appendix and I didn't know. For those of you who didn't know about this... Tony came home Monday October 20th from his soccer game feeling sick. He said that during the game his stomach was hurting. We thought he was under the weather and had maybe played to hard. He stared vomiting that night and we thought "ok, its a stomach virus" we kept him away from the baby, pushed fluids etc. he was not running a fever. He had the vomiting for a couple days, but still no fever. I was starting to worry a little though, but then he stopped vomiting and got diarrhea. I thought, "ok, its moving its way down, good.." he complained of stomach pain, but I figured it was from all the vomiting, he still had no fever, so I kept pushing fluids and bland foods. By Friday he seemed to be getting better, but then on Saturday morning he woke up crying and in pain, and the vomiting returned. We saw the doctor asap Saturday, went from there to the emergency room, were admitted to the local hospital. They took a CT scan and blood work. The results showed an extreme amount of inflammation throughout his entire digestive system and multiple abscess's, one of them very large. They started talking about things like Crohn's disease. We were transferred to Seattle Children's hospital. The doctors/surgeons there said it was a burst appendix after all. The put a tube in through Tony's colon to drain an abscess the size of a raquet ball. He was in the hospital for 4 days. He was on iv antibiotics for 2 weeks, his surgery to remove his appendix was scheduled for Dec. 12th.

At our follow-up appointment with his pediatrician there was some concern about the fact that he still hadn't gained any weight back (he'd lost 6 pounds) and was still having stomach pain, loss of appetite, low energy etc. The pediatrician ordered some tests. It turned out he had C-dif. a bacterial infection of his intestines caused by the iv antibiotics. He also had elevated markers for inflammation and an elevated liver function. Crohn's disease was mentioned again. We were referred to a pediatric gastro-enterologist. She also mentioned Crohn's disease and ordered some tests to be performed at the Children's hospital in Seattle. After hours and hours of drinking nasty stuff, not eating, wearing a hospital gown, and getting repeated x-rays my little trooper was finally done. The doctor/surgeon at the hospital said things looked normal! YAY! The appendectomy is on for the 12th. All Tony's problems seem to be a result of the burst appendix, peritonitis infection, and then the c-dif infection. The appendectomy should resolve everything. whew.

4. Taking That First Step....

I am constantly amazed at how much I learn from my children. I sometimes think they are raising me as much as I am them. Drew learned something new this week, but he also gave me a bit of a lesson as well.

Drew's daddy taught him how to climb the step in our sunken living room. He basically just showed him it was possible by placing him at the step and helping him kinda scoot up onto it. Neither of us thought he'd be doing it on his own any time soon. WRONG! He saw me sorting the mail (on the floor) and wanted to play with the paper. It took him all of 5 seconds to scale that step and get into the pile of mail. Now he's doing it all the time, even faster. He can now go anywhere in the house as long as there isn't a closed door.

That step is pretty high to a little guy like Drew. He has low muscle tone and it is so much harder for him to move those muscles than it is for the rest of us. It took an amazing amount of strength and determination for him to climb that step, but he was motivated. It just goes to show that sometimes we need the right motivation to take that first and hardest step, and once we take it, it opens up a whole new world :)

Way to go Drew!

Thursday, November 27, 2008

An Attitude of Gratitude


I have been away for a bit. I haven't blogged, haven't been checking in on the blogs I follow (sorry guys) and I haven't even been on the babycenter community board that I normally love. I've been busy yes, but mostly I've just been in a bit of a funk I guess. It occurred to me this morning, Thanksgiving day, that I need an attitude check. I've been so focused on all the things going wrong and not on the many things that are not. So, here is my list of the things I am grateful for....

I am grateful for:

my family

my nice hot cup of coffee

that Drew is still asleep so I can blog

that Paul is safely on his way home from his hunting trip and we get to spend the holidays together, no-one is overseas or in the hospital. I am also grateful he didn't get anything - sorry babe, but it's the truth. I don't really wanna eat Bambi...

that I don't have to cook today

that even though money is super tight, we can still afford basic cable and an internet connection

that discovery health is in included in basic cable

that while my couch is super ugly it is really really comfy

that Tony seems to finally be feeling a little better

that Drew is getting his first tooth

that even though he may irritate the heck out of me sometimes I am married to a good man who loves me enough to tell me so every single day

that Tony is doing well in school despite missing more than a month

that Tony's school and teachers have been so supportive and understanding of his health issues and our family's struggles in general - I must say I am pleasantly surprised at this

that both my kids have doctors who seem to genuinely care about them and their health and that their doctors are pretty good at communicating with me

that the medications seem to be keeping Drew's reflux under control

that while my car is acting up (i.e. dying) it is still technically running, AND has not broken down in and inconvenient spot

my fancy new cell phone with the calendar in it

that I don't have to cook today

that I get to live in the town I grew up in, surrounded by my family who I love

my parents, my brothers, my sisters in law and the "sister of my heart" - yes that's you Jen :)

my nieces and nephews and the new little niece or nephew on the way

my house, my very first house :)

that Drew is making some progress with his motor skills

that we have health insurance

that Paul has job security

that Paul gets the opportunity to go to school to learn welding - something he really wants to do, that he will develop a skill he can use when/if he retires from the Guard and/or decides not to work on Chinooks and Blackhawks anymore

I am so very grateful that despite many many health issues that could have been really really bad - both my kids are still here and doing ok. I am grateful that they can smile, laugh, wiggle, play, give me attitude, give me hugs, and that they know how much I love them.

Oh, and in case I didn't mention it, I'm grateful I don't have to cook today.

Happy Thanksgiving to all of you!!!


Tuesday, November 18, 2008

A pin-prick of light?

At the end of the tunnel that is. I'm almost afraid to type this, I don't want to "jinx" it. I will blame my superstitious nature on my Celtic and Sicilian roots - see? I had no chance there. Anyway, it seems that maybe, just maybe Drew is making some progress with the eating! There, I said it. Typed it. Whatever. Nothing bad happened. Knock on wood.

Yesterday we had an appointment with Drew's GI doc. I was fully expecting to be told that I would need to go ahead and get a G-tube (a feeding tube placed directly into the stomach) surgery done for Drew. He has had an NG (nasal gastric - goes in his nose, down his throat to his stomach) tube for a year now - almost unheard of. At the time of Drew's last appointment he had developed a swallowing aversion. He absolutely would NOT swallow ANYTHING. His reflux had gotten so severe that he was violently throwing up 4-5 times a day. His GI doc prescribed Reglan and he started doing better. For the past 2 weeks he has slept through the night (pretty much). He doesn't throw up any more! At all! Well, except that one time he cried himself sick - darn that separation anxiety. He has just the occasional spit-up now, just like a regular baby. This was all very good news, I know, but he still wasn't really eating, just spitting it back out. So even though he was keeping the tube-food down, I figured it would just take too long to get him eating (like years) and I would just have to suck it up and get the G-tube. Just in the past couple days though he has really seemed to be doing better with eating. He still spits his food back out, but he seems, well, more interested in the food. So I told this all to his GI doc at our appointment yesterday. She feels he is doing very well. It takes some time for the esophagus to heal she said, lets see what happens in the next two months. YAY! I know it may sound nuts to some of you moms who have the G-tubes because most people like the G-tube better than the NG - let's just say I have my reasons for not wanting to go the G-tube route. I was happy, but still a little wary. I was thinking, are we just postponing the inevitable? If he has to get it, why wait?

Well, today we had our feeding therapy appointment. His FT said she sees a definite improvement. A. DEFINITE. IMPROVEMENT. He is actually swallowing a tiny bit of his food! wooo hooo! So, there is my little pinprick of light. It is small. But I can see it.

Oh, and the frosting on the cake ---- as we were leaving the therapy appointment I noticed a tiny crumb of cookie on Drew's shirt. Instead of picking up and flicking it (like a normal person), I stuck it in his mouth (I know, I know, I'm gross) and I felt a little.. bump? ridge? on his bottom gums. Methinks my little guy may FINALLY be getting a tooth!

Thursday, November 13, 2008

Some Background

I feel the need to provide some background on our family. I wish I would have started this ages ago, but I suppose I just wasn't ready. I tend to be a bit long-winded. Permission to skim, or even skip is granted to all readers. - just don't tell me you did :)

Like many other families in this day and age, ours is "blended". I was a single parent to my first son, Tony for 8 years before I met my husband, Paul. I was not married to Tony's father. Tony was not planned. He was the best surprise I ever got however, and from the moment I knew he existed I loved him. I like to tease him and tell him that I've loved him since he was a "dot". I was determined to make the best life possible for my son.

When I met Paul I was a few months away from my 30th Birthday. I had decided that a serious relationship, ie. husband was just not in the cards for me. I was sad that Tony would be an only child, but by the time my birthday rolled around I had reached a place of acceptance. I was working full-time as a adm. assistant in the social services dept. of a retirement community. I was also a den mother to my Tony's cub-scout group. It was in cub-scouts that I met Paul. Paul was there with his then girl-friends son and became my "assistant". We became friends, and more importantly he and Tony became friends. To make a long story a bit shorter, Paul's girlfriend took off with her kids in tow, he stayed on in scouts to help out. He pestered me for months to go out with him, and after 3 months I finally agreed.

Paul proposed to me on July 4th, 2005 during a spectacular firework show over the Columbia River. I said yes. We told family and friends, who were all very happy. We set a tentative date for the following spring. Then, on July 9th, 2005 Paul received notice that his National Guard unit would be deployed to Afghanistan. They would leave in October. I was devastated, scared, angry - you name it. We bumped up the wedding to September. It was a beautiful wedding, I will treasure the memories from that day forever. We had a few glorious days at Ocean Shores and then; we prepared to spend our first year together - apart.

We made it through. It was a very difficult time, but going through that hardship strengthened our bond. Every day apart was a test of our love, our commitment to each other and to our vows. We had promised for better or worse and we had meant it. Looking back, in a way I am grateful for this. If we hadn't gone through this and come out stronger, the next challenge would have been harder to handle.

Paul and I got pregnant in February of 2007. We were trying. It had taken a little longer than we thought it would and we were just starting to get discouraged. We were all soooo happy. Tony too; he had been asking for a baby sister since he was 3 years old. We were all so sure that Drew was a girl. :) We called him peanut; and when he would wiggle around in there, I would say "peanut is dancing". We found out later that peanut was a little boy, I was a little disappointed that I would still be surrounded by "stinky boys" but the baby looked very healthy and that was what really mattered.

I had some minor complications during pregnancy. Really low iron, a thyroid problem, a low lying placenta, and a little extra amniotic fluid. Nothing seemed serious enough to the OB to warrant further investigation. Our insurance didn't cover the screening that tested for things like Down syndrome as I was only 32 and not considered "at risk". Money was tight. We decided even if the test was covered, what would it change? nothing. We would have our baby and love him no matter what. We declined the tests. We were sure everything was going to be just fine. We'd had multiple ultrasounds to look at the placenta, everything looked great. Besides, it was our time to have things go our way. The fairy-tale (modified slightly) was now ours. We had "paid our dues" and it was our turn for "happily ever after".Add Image

Andrew Declan Dennis was born on October 8th, 2007.
He weighed 6 lbs 2.6 oz. and was 18 1/2inches long.

He was beautiful.

His mother, father and brother were filled with such joy!
About 4 hours after his birth, the OB informed us that they believed he had Down syndrome.

I think I'll save the rest for another day.

Tuesday, November 11, 2008

How to Start?

I am new to this. The online world. The world of "special needs" still feels new to me too, even after a year. I don't know how to start, do I just jump right in? Do I provide background? Am I supposed to think things through and say something meaningful or just... blap it all out? Please bear with me readers (If I have any) I'm sure I'll get the hang of it.

Why am I doing this? Not really sure. I think maybe I need a voice. A place to let things out so that my head won't be so full of thoughts, worries, fears, etc. A place to celebrate too, and share those momentous occasions with the family and friends I hope will read this.

If someone had asked me a little over a year ago if I would ever consider doing a blog I would have looked at them like they were nuts! I share myself freely with those I know well, but I tend to be shy around strangers. Drew has changed me so much though, in so many wonderful ways. I guess that's the real reason I'm doing this. I want to share Drew, and our story, with others. Maybe someone out there whose world has been turned upside because a baby they love has been diagnosed with Down syndrome will read this and not be so scared. Having your world turn upside down is a little scary, but I think things look more interesting when you're upside down. Try it :)