Fridge-Worthy Art

Jason took an extra long nap this afternoon (yay!) so Drew and I had some quiet time together. I decided to bust out the crayons and see what he'd do. We have tried the coloring thing a couple times previously and didn't have much success, but today....

We made ART!

And here is the proud artist...

Please excuse the mouthful of crackers

Obviously he is not a "starving artist" :)

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I've Been Nominated!

I'm so excited! I've been nominated for my very first blog award!

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The rules to this award are:

1. Thank the person who nominated me for this award.

2. Copy the award & place it on my blog.

3. Link to the person who nominated me for this award.

4. Share 7 interesting things about myself.

5. Nominate 7 bloggers.

My sincere thanks to Kelly at My little "Son-Shine" for nominating me. I love reading about your gorgeous little Landon and his 2 handsome big brothers. You truly do have a beautiful blog and a beautiful family as well.

Soo.... 7 interesting things about me:

1. I have lived in the same town since I was three months old and I love it here. I am just a couple hours from both the coast and the mountains and enjoy both. I'd love to see more of the world, but the "great northwest" will always be home.

2. In college my plan was to major in child psychology and minor in education. I wanted to be a school psychologist for middle school kids. Instead I had my own kid and wound up working in social services at a retirement community and I loved it! Currently I am a stay-at-home-mom of three and would like to someday go back to school for my teaching degree.

3. I met my husband in Cub Scouts; we both volunteered as den leaders.

4. I have always been "surrounded" by boys. I have three younger brothers and recently added a third boy to my own little family. My husband and I hope to someday adopt a little girl.

5. I LOVE to read. As a kid I would get in trouble for hiding a book in my lap under my desk and reading instead of listening to the teacher. I could even walk home from school while reading. These days time is limited and I read blogs more often than books.

6. If I could have any super power I wanted, I would want the power to heal. If I could have 2 super powers I would also want the power to fly.

7. I hate fresh tomatoes but love ketchup and tomato sauce.

And now for the best part! I follow quite a few beautiful blogs, it was very hard to choose. Seven especially beautiful ones (in no particular order) are:

1. "The Good Life"

2. "Class of 2008 - the real story of a high-school graduate"

3. "A Walk in Lily’s Garden"

4. "The Anderson Family"

5. "A Little Something Extra For Us"

6. "Brennen’s Beginnings"

7. "A Hapa Girl and Her Hapa Family"

Group Therapy

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Our very first pre-toddler group therapy session was today. This is a new group for kids who are not quite at the toddler stage developmentally but are at a stage where they could benefit from a group setting. I wish I could say it was a big success. Unfortunately it was not. Especially disappointing seeing as how my expectations were not very high. I am painfully aware that Drew’s delays are significant. That he is behind not only typically developing kids, but his peers with developmental delays as well. I knew that the other kids would probably be a little younger, and may be a little ahead in meeting their milestones. I was prepared for that. The one thing Drew has always had going for him is his very social nature. He has always liked people, especially other kids (with the exception of his baby brother sometimes). I was excited to introduce him to other kids, to watch him make friends. I figured that watching and playing with the others would help boost his learning. After all, he learned to crawl from watching and playing with his cousin.

Well, my little social butterfly decided to crawl back into his cocoon today. He would not get near the other kids. He would not sit in the two-seater swing with them, he would not play at the rice table with them, he did not want to be within 5 feet of them. He scooted backwards toward the corner and played alone. He would not walk with his walker either. At snack time (a dreadful event when your child has feeding issues) he would not even try the cracker, or the banana, or the drink. He pushed his plate away, tried to throw it, etc. He did slightly better at circle time, but only because momma was holding him. *sigh* Hopefully next week will go better. Maybe he just needs time to get the hang of it. (crossing fingers…)
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Some Perspective (and a tissue warning)

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I was feeling sorry for myself. I was going to post all about my pity party. I even had a title; “Pity? Party of One?”. I had the tv on in the background, the news was on and I was only half watching/listening. I was intent on blogging about my horrible day/week and how frustrated I am with doctors and home health supply people, feeding tubes, babies who won’t sleep, exceptionally bright 13 year olds with not-so-exceptional grades, and husbands being away, etc, etc.

Then something caught my attention. The name Abby somehow permeated my consciousness. Back in August there was a story in the news about a pregnant woman who contracted the swine flu. She developed pneumonia and was hospitalized. She went into respiratory arrest and was placed in a drug induced coma. Her daughter was born via c-section 3 months early and the mother passed away without ever waking. She never got to meet her daughter. The grieving husband/father named their daughter Abby.

Under any circumstances a story like this would have caught my attention, for awhile anyway. I would have said a prayer for the family and then probably forgot it. I didn’t forget it though. Perhaps because I was pregnant at the time too, the story stuck with me. So when I heard the name Abby I stopped my pity party and listened. When they reported that little Abby had passed away (story here) my heart broke for her daddy, still struggling with losing his wife. I said a prayer for him and his little boy and looked at my computer screen and…

And I felt ashamed. I felt ashamed for forgetting just how lucky I am. My husband is alive. My children are alive. I have faced losing two of my children. I have lived in fear while the man I love was deployed to a war zone. I have watched my best friend struggle with the loss of her daughter. I should know better than to take for granted the fact that the people I love so much are still here where I can hold them. So, I will hold my babies, hug my 13 year old (whether he likes it or not) and text my husband, and I will have a gratitude party instead.
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Letter to Sarah

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Check out the Oz Squad blog here for a beautifully written letter to Sarah Palin, entreating her to take up the "spread the word to end to word" cause. Please consider signing. The more voices we have, the louder the noise.
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Just another "R" word blog

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Recent events have prompted this of course (in case you’ve been on a trip out of country or hiding under a rock I am referring to Sarah Palin’s missed opportunity at advocating for her son) but I have wanted to address the whole “R” word thing for a long time and haven’t because I just didn’t really know what to say. I can’t even seem to effectively explain to certain members of my family why it is so wrong to use the word retarded as an insult. They refrain from using it, but they don’t understand why it bothers me so much. I have tried to explain, but I guess I don’t have the right words. So why am I posting this then? Honestly? Therapy I guess. I can’t seem to get some of the people who are closest to me to understand how using the word in that way belittles my child and all children (and adults) like him, and that really upsets me. I need to rant a little I guess. So here it goes.
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WHY IT BOTHERS ME:
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I think people should “say what they mean, and mean what they say”. I don’t like it when people use the word gay as an insult either, or when someone says “you throw like a girl”. When you say “gay” what you really mean is that something is feminine, perhaps flamboyantly so, or sometimes that something is stupid or bad. When you say “you throw like a girl” what you really mean is that someone is throwing badly, like someone who hasn’t learned to throw a ball yet. When you call someone or something retarded you are by definition saying “that’s slow”. What you mean to say though is “that’s stupid” or “that’s ridiculous”. So say THAT then. Why take a word and twist it like that? It’s lazy and ignorant. Notice I said what I meant there? No, I am not perfect. Yes, I sometimes use slang. I do, however, try my best to be conscious of the words I use. I do my best to insult only the person or thing I feel deserves it.
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WHY IT HURTS:
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It hurts because my son is developmentally delayed. You may notice that I cannot bring myself to use the word retarded there. Even though that is the word that the medical profession will use to describe my son’s slowed mental development for the rest of his life. It hurts because using the word that is associated with my son, and specifically with his challenges, as an insult means that WHETHER YOU MEAN TO OR NOT YOU ARE SAYING MY CHILD IS STUPID, BAD AND RIDICULOUS. You are saying that someone or something is so stupid, so bad, so awful that you must insult it/them, and the worst thing you can think of, the most insulting thing that comes to mind is to say they are like my son. Of course you don’t mean to insult my beautiful, spectacular, wonderful child who has just as much a right to your respect as any other person on this planet, but you are insulting him, him and many other beautiful, spectacular, wonderful people. Still don’t see it? Still don’t understand? Try this: The next time something or someone aggravates you to the point that you feel the need to use that word, replace it with the name of someone you really love. When that horrible driver cuts you off in traffic call them an F-ing ______ (fill in with the name of your spouse, child, best friend, mom, etc.)
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BUT EVERYONE DOES IT:
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Uh huh, and if everyone jumps off a cliff…. Yep I sound like my mom. That’s okay. The older I get the less that bothers me, because you see, my mom was right. Those of us over the age of 7 know better. We really do. Just because others are doing something does not make it okay. Especially if we know we shouldn’t. Especially if we know it’s wrong. When we are in the public eye it is even worse. Maybe that’s not fair, I don’t know, but it is. It’s worse because when Joe Shmoe jumps off a cliff it affects and influences only those people who know Joe Shmoe. When someone whose actions are noticed by thousands jumps, it affects and influences thousands. “With great power comes great responsibility” this goes for actors, sports figures, and yes, political figures of both parties. Why are people so especially angry with Sarah Palin for simply condoning Rush Limbaugh’s use of the word as an insult? She didn’t even use the word herself, so why is everyone so upset with her actions? Well, it’s because she’s supposed to “get it”. She’s supposed to understand how hurtful it is to use the word retarded as an insult. We expected her to stand up for her son, and for all our children. Whether we agree with her politics or not (and I am not going to say either way because it’s irrelevant) those of us who have loved ones with any kind of developmental delay expected more. I don’t know whether or not we had the right to expect more. But we did. I know there have been times when I missed the opportunity to advocate for my son, so I will try not to judge her too harshly. I will not say she’s a bad person, or a bad mom. I will simply say that I am disappointed. Sarah Palin was given a golden opportunity to advocate for her child, and all our children. She was given an opportunity that many of us parents of children with developmental delays can only dream of. She had the attention of the country, and maybe even the world. Everyone was listening to what she, a parent of a child with Down syndrome, had to say. I am so very disappointed that she chose politics over advocacy.

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What's New with Drew?

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.....A new baby is not the only new thing going on here. My other little man is growing by leaps and bounds (developmentally anyway - not so much physically). It seems jealousy is not the only thing a new brother inspires. It's almost as if Drew senses that this new "creature" is trying to catch up to him and he is determined to race on ahead!

.....Drew has started vocalizing more, he can say "mama" (comes out ma-ba) and "dada" (comes out dee-da) and of course "bubba" (what we call his brother) which he's been saying for ages. He also says "lala" for love you, "buh-kkkccch" (book), "baby" (which he kinda grumbles) and tah (which means tape - he likes to play with the paper tape I use for his tube, weird huh?). He is able to imitate some animal sounds and has a lot more "Drew words" now too. Does anyone know what un-guh means? We just can't figure it out. Drew says it with such intent, it must be something important. He is also signing a lot more now too, we are still working on his hand control but definitely making progress. His latest sign is "help" which is sooooo nice. Now instead of whining when he needs something he puts his hands together and raises them up. It's not a "perfect" sign of course, but I know what he's "saying". I can't tell you how good it feels to see my baby communicate his needs.

.....Our other big news is that Drew can walk! Okay, it's assisted walking, but heck, he's upright, moving his feet, and going. That's walking in my book! His OT (occupational therapist) brought a push-toy walker for him to use. It's the perfect height, and has a nice sturdy frame. Drew loves it! The look of pure joy on his face as he all but ran down the hallway brought tears to our eyes. Yes, his therapist got a little teary eyed too :)

Go Drew!

It's not the best picture, but the look of joy is unmistakable.

Now, we just need to figure out how to steer...

Drew is a Big Brother

ok, so he's been a big brother for almost 2 months

but I have been just a little busy :)

I will make it up to you with pictures.

Probably more pictures than anyone wants

to scroll through but I have a hard time choosing... so...

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WELCOME JASON!
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Jason Delaney Dennis

11/16/09

7 lbs 5 oz 20 1/2 inches

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Still not sure about this big brother thing...

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My three beautiful boys, who could ask for a better Christmas present?

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Must. stay. awake. must. fight. sleep.must. stay. awake...

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That's all for now.. updates on Drew soon. Promise.

Wordless Wednesday

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A Reason to Celebrate

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Saturday we celebrated Drew’s 2nd Birthday. It was smaller and more low-key than his 1st Birthday was but still very special. Birthdays in our family are always a reason to celebrate, but I have to say there has been an extra feeling of gratitude with these first two Birthdays of Drew’s. Many of you reading this already know why, but for those of you who don’t…

Like almost half of babies with Down syndrome, Drew was born with a heart defect. Sometimes these congenital heart defects are minor ones, like a small hole, or slightly leaky valve, and they remedy themselves or can be managed with medication. Sometimes though, they are more serious. Drew’s was serious. He had what is known as a complete AV (atrioventricular) canal defect. To put it simply, Drew had a huge hole in the center of his heart. Instead of four separate chambers, he had one. His oxygenated blood mixed with the non-oxygenated blood. By the time he was one month old he had started to go into congestive heart failure. He was a very, very sick baby. He was hospitalized 7 times before he had his open heart surgery on March 5th, 2008. He was 5 months old at the time. I’m sure I don’t need to describe to you the kind of fear this causes. Any of you parents who haven’t been through something like this feel an ache in your chest just thinking about it. Those of you who have faced losing your child know first-hand. Birthdays are extra special when you’ve faced the possibility of your baby not having one; they are most definitely a reason to celebrate.

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One of his favorite presents

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"ha ha - you can't get me in here"

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mmmm??

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He'd rather chuck it at my head than eat it :)

- is this kid really related to me?

Blog from the Baby - A Special Day

Today was my 2nd Birthday! My party is not until Saturday, but Mom made sure today was lots of fun. Here are some pictures...

I got to play outside..

and practice my standing

so this is what was in that big box from Nana and Papa - YAY!

ok... now what?

BALLOONS!! MY FAVORITE!

All the way from Alaska, Nana & Papa must love me a lot!
Ride 'em moose-boy!

I needed a little help here...

Thanks Buh-buh (brother)

Happy Birthday to me, Happy Birthday to me...

Ignorance and Awareness

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I started this blog as a way to share my family - to share Drew. It was my hope that it would bring some awareness to others that our lives are not so different from families whose children do not have an extra chromosome, that my child is not so different either. I have not been very good about keeping up with it, obviously; seeing as how this is my first post in months. No apologies though. I have been busy taking care of the real world, my children, my family, my home; I will never apologize for that. It being October, and October being Down syndrome Awareness Month I did decide now was the time to make the effort. I won’t commit to posting 31 for 21 though; heck I’ll be happy with myself if I can get 3 up.

I will be the first to admit that I am no activist. Most of the time I lean more towards being a pacifist. There are times I feel guilty about this, like I should be doing more to educate people about Down syndrome, to bring “awareness”. While I am (almost) always willing to inform the uninformed when I come across them, I don’t exactly seek out the opportunity. The truth is I am not the most educated parent of a child with Down syndrome either. I know enough to keep on top of my son’s health and development, but I am certainly no expert.


ig·no·rance noun

1. lack of knowledge: lack of knowledge or education

2. unawareness: unawareness of something, often of something important

(definition from MSN Encarta)

We didn’t know that Drew had Down syndrome until after he was born. I guess you could say we were “unaware of something important”. We certainly lacked knowledge and education, not just about what Down syndrome is, but about how it would affect our family.

In the two years since Drew was born I have come across quite a few ignorant people. Some so profoundly ignorant that it truly shocked me. Like the hair stylist I came across not too long ago who thought Down syndrome was caused by a mother who “took drugs or something”, or the well-meaning elderly man who informed me that “Down’s kids are so happy and sweet, they’re like angels”. (really? wanna see how angelic he is while I try to change his poopy diaper? ) I usually do not take these comments personally; these people aren’t mean, just ignorant. So in the spirit of education and awareness here is some information for those of you who are currently unaware of what Down syndrome is (and isn’t).

• Down syndrome occurs when a person receives three copies of the 21st chromosome instead of the typical two. This happens at conception (or shortly thereafter depending on the type).



• There are three recognized types of Down syndrome. Trisomy 21, Mosiacism, and Translocation. Trisomy 21 is the most common; about 95% of people with Down syndrome have this type.



• Approximately 1 in every 733 babies is born with Down syndrome.



• While the probability of having a child with Down syndrome increases with maternal age; most babies with Down syndrome are born to mothers under the age of 35.



• Current research shows Down syndrome is not caused by parental behavior or environmental factors.



• People with Down syndrome are born to parents of every race and social and economic background.



• Down syndrome is associated with some physical traits. The most common are an upward slant to the eyes, low muscle tone, short stature, a single crease across the palm and a larger than average space between the big and second toes.



• People with Down syndrome are at a higher risk for certain medical conditions, some of the most common are congenital heart defects, gastro-esophageal reflux disease, respiratory and hearing problems, childhood leukemia, and thyroid dysfunctions.



• Down syndrome does cause cognitive delays, but the effects are usually mild to moderate and vary depending on the individual.



• People with Down syndrome are individuals and possess the same differences and similarities of personality and temperament as those people without Down syndrome.

a·ware adjective

1. knowing something: having knowledge of something from having observed it or been told about it

2. noticing or realizing something: knowing that something exists because you notice it or realize that it is happening

3. knowledgeable: well-informed about what is going on in the world or about the latest developments in a sphere of activity

(definition from MSN Encarta)

The facts listed above provide some knowledge. They help to dispel some of the misconceptions about Down syndrome; but does posting a list of facts really help increase awareness? Am I reaching anyone who wasn’t already aware? I think that true awareness comes with experience. I know for me that having a child with Down syndrome is what caused me to become aware. Were it not for Drew I wouldn’t have a clue, so how can I help others who are not as blessed as I to become aware? I can share my story, my child, with others. Drew will help to increase awareness just by being his wonderful little self. Everyone he meets will be able to see that he is loved, accepted, cherished. Hopefully they will also see that he is neither a “lump” nor an “angel”, but a human being with a unique personality; and that he not only has a place in this world but something positive to offer it.

If you would like to learn more about Down syndrome please visit one of the links I have listed in “Good Links for Information”; or visit one of my bloggy friends from my “Blogs I Like” list.

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So Much..

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...maybe too much has happened since I posted last. Changes not only with Drew, but the rest of my family as well. I'm not even sure where to start. I suppose that's what happens when you procrastinate for so long. I'll try to break it down into manageable parts and to keep it brief (please keep in mind that "brief" for me is a very relative term).

What Drew can do..

Drew is still using army crawling as his main means of transport. Why change something that works so well? If he can scoot away from diaper changes and medicine time and catch the cat, then why rock the boat? He does still get up on all fours - because he knows everyone will cheer when he does. Such the ham my little Drew is. His secondary means of transport is the butt-scoot (or should I have said "hiney"? oops) He has finally learned to push himself up into a sit - yay! Once there he will scoot backwards on his bottom all over the place - it is absolutely hilarious! He looks like a dog itching his behind except he goes backwards. This worries me a little because he doesn't look where he is going and there have been some accidents, but I guess bumps and bruises are just part of growing up. He also learned to pull up onto furniture into a stand. All by himself! Of course he fell a couple times and now he won't do it anymore.

Drew's other new accomplishment is stacking two blocks. This may not sound like much but trust me when I tell you this is HUGE! I'm such a proud mama! Some very good news is that Drew's GI doc is pleased with his eating progress (drinking is still slow but progressing) and has cut back on the "tube-food". She also discontinued his Reglan (the drug he was taking to help empty his stomach) - and so far he is doing great. Last, but certainly not least, Drew has his first word! His first word is "bubba" which is what we call his big brother. "Bubba" is quite pleased of course and hasn't stopped gloating yet.

Drew has also had a number of other firsts these past 2 months - sadly I cannot post pictures as a freak accident with a digital picture key-chain has COMPLETELY fried my laptop and all the new pics I was fiddling with at the time. The "geek squad" is currently attempting to retrieve said pics but no promises. Yes, I know I should save to a back-up device before fiddling. Trust me, I won't forget again.



Other news.....

My parents are moving to Alaska :( Unfortunately that is the only place my father could find a job worthy of him. I have never lived more than 5 minutes away from them so I am having a tough time with this. My husband Paul left for his military welding/sheet metal school in Virginia on May 4th. He is doing very well and getting good grades. Of course. I miss him very much :( About a month before he left we found out...

... I'm pregnant. Almost 19 weeks now. No, it wasn't planned. I was not very pleased at first - of course the throwing up all day long every day didn't help with that - but I am in a pretty good place now and even starting to enjoy it, although I am a bit lonely. I still worry about how I will handle an infant and a toddler and a teenager too, especially since Drew still needs the feeding tube, therapy, doctor visits etc. but I know that lots of others have navigated these waters and lived to tell, so I have faith that I can too.


What if this baby has Down syndrome too? you ask. What if it does? I know now that it's not the end of the world - its the beginning of one. Not to say that I'm not hoping for a little bundle with your typical number of chromosomes. I admit I am. The health nightmares that Drew has had to face and the obstacles he will have to face later in life are not something I would choose for my child. Mostly I just hope that this baby is healthy no matter how many chromosomes. Oh and it would be nice if it could be a girl this time! :)



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A Normal Life?

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Going to the grocery store with Drew in tow can be an adventure. There are usually looks of curiosity, and often questions, the tube in his nose does not help with this of course. I don’t usually mind at all, though sometimes I would just rather not engage. I, like everyone, have my days where I don’t want to be “on”, days where I would rather zone out on the trashy magazine headlines and not speak except to say “debit” and “thank you, you have a great day too”. Yesterday was one of those of days for me. As I filled my cart up with items carefully tucked around the car seat with the sleeping baby, I had more than one stranger approach me. I tried to avert, and it worked for most. A smile, a “how cute” “why thank you” and then on I rolled. Then there was the elderly gentleman who said, “what a precious gift you have” “yes I know, thank you” I replied. He was my favorite. He didn’t even have that look of curiosity on his face about the tube. He seemed genuinely happy to just see a mother with her baby. We exchanged just a few more words, I would have chatted longer but I really wasn’t in the mood. On I rolled to the check-out line, which one is shorter? Which one has fewer kids? (they ask more questions as we all know :) ). I chose my line, behind a very bachelor-looking man buying a lot of steak and some beer. “Almost out of here” I thought. Then it was my turn, and the cashier asked “What is that tube for?” Awwwwwww MAN! I almost made it! “Well, its a feeding tube" I said and then because she looked a little confused I went on to say "He was born with a heart defect and couldn’t eat for the first 6 months of his life, so he forgot how to suck and can’t take a bottle. He’s learning to eat now and is doing very well, but it takes time and hard work.” I mentioned the open heart surgery and what a trooper Drew is, and she asked “So, he’ll have a normal life then?”….um…… I didn’t know what to say. She wasn’t trying to be rude, I know, but I was floored. I hadn’t mentioned Drew’s having Down syndrome. I’m not sure why, I just know I didn’t feel like talking at all, so I guess I was just trying to give the least amount of info that was necessary. “Well” I said “Drew has Down syndrome, so I guess he’ll have as normal a life as is possible” I then went on to say “Whatever normal is. Does normal even exist?” I guess I could have just said “yes, of course he’ll have a normal life” but I didn’t. I could have used this oppurtunity to educate, but I was tired and crabby and distracted and I didn't. As I left though I regretted my words a bit, I felt a little like I'd sold Drew short and I couldn't stop thinking about it.....

Will Drew have a normal life? What is normal? If normal is getting to nurse or drink from a bottle, then Drew hasn’t had a normal life. If normal is only being in the hospital a day or two after you’re born, then Drew hasn’t had a normal life. Is it normal to throw up all your food at least once a day, eat through a tube, have open heart surgery, spend more than half of your first 6 months of life in the hospital, have hundreds of doctors appointments, take 4 different medications and have 3 different therapists, well, no. I don’t think most people would consider that normal. But if normal is having a brother, and a father, and a mother, and grandparents, aunts, uncles, cousins and family friends who love you, then Drew’s life is sooooo normal. If normal is learning new things, (at your own pace of course), being curious about the world, smiling when you're happy and crying when you're sad, then Drew has a normal life.

The more I thought about it, the more I realized just how normal Drew’s life is. How normal it will be. There is actually very little of the “normal” we expect for our children that Drew won’t have. Drew will learn to eat, he’ll learn to walk, he’ll learn to talk, either with sign language or verbally (or both if I have any say in it). He’ll color on the walls, yell at his brother, refuse to take a bath. He’ll push the limits, he’ll get into trouble. He’ll read stories with his mom, play soccer with his brother, and go on fishing trips with his dad. He will go to school, he’ll have friends, he’ll get teased, he might tease others. He’ll have his favorite subjects, and his least favorite. He’ll have his favorite teachers, and his least favorite. He’ll play sports. He may not be the best player on the team, but that’s normal. As he grows he’ll have crushes, he’ll get his heart broken, and maybe even break a heart himself. He’ll go to a school dance, a football game, he’ll graduate. More than likely he’ll have a job, some days he’ll enjoy it, some days he won’t. He’ll have days when the world treats him well, and days when it doesn’t. These things are all normal. Someday I think he’ll find a wonderful girl, fall in love, yes, he could even get married. Perhaps I am naïve, but I think he’s got just as good a chance at making a go of it as anyone else really. Will he be able to take care of himself all on his own? Maybe not, but how many of us can get by in life without ANY help at all? Will he have children? Well, no, that would be very unlikely, but lots of people don’t have children. I'm pretty sure he won’t become a doctor or a lawyer or a professional ball player either, but then most “normal” people don’t. All in all, I realize, Drew will have far more “normal” in his life than not.
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Blog from the Baby

Hi, this is Drew. It seems my mommy is just to busy these days to tell everyone about what I'm up to, so I've decided to take matters into my own hands....

In the past couple months I've had LOTS of doctors appointments. Most of them to try and figure out why my reflux came back. We still don't know why, but I wish someone would figure it out! I HATE puking up all the food I've been working so hard on learning to eat.

I have been a very good boy lately. I've been trying very hard to help mom out....

I offered to take out the trash....

and to help cook....

I thought oatmeal would be good....

So far mom hasn't taken me up on any of my offers, she just shakes her head and says I am "mischievous". I don't know what that means but I think it must be good because she always smiles when she says it.

In these past few months I have also been working very hard on my eating, and I can even sip thick liquids without spitting them back out on accident (I sometimes do it on purpose though, just because its fun). I am also getting up on all fours and rocking back and forth. Sometimes I scoot backwards, which is okay. I'll keep working on the forward. I also can stand with help now, it still feels weird but my therapist says it will get better. I still don't really like to hang out with anyone but my mom. She calls it "separation anxiety" I call it good taste :)

Well, that's it for now... I have a kitty to go chase

~ Drew

Ode to Laughter

...
In an attempt to cheer myself up; I decided to take on a project. Why I thought it would cheer me up to try and figure out how to create a slide-show by myself and then somehow get it onto my blog I do not know. Perhaps I was more focused on the end result than on the inevitable frustrations involved in getting to the end result. Not necessarily a bad thing I guess.

I felt I needed to do something to share the lighter side of things. One of the most important things I have learned in my lifetime (so far) is the power of laughter. As parents in general, and parents of children with special needs in particular I think we have a tendency to take ourselves a little too seriously. Not to say that we shouldn't take parenting, or our children's struggles seriously; but there is always room for laughter. I think one of the best lessons I can teach my children is the importance of finding the fun in every single day, even the "bad days". Laughter is like a band-aid for a bad day.

So here it is... my blog's first slide show. It's entitled "Ode to Laughter", and is just a collection of pictures that have the power to make me smile. enjoy.

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Trying not to feel down..

...is tough for me sometimes. Today I had a "review" phone call about how Drew is "progressing" with the IEP plan. I have a copy of the plan. I looked at it when I first got it last June. I looked at it today during my phone conversation. I did not look at it at any time in between. I keep and review the visit notes to see how far Drew has come, but I didn't want to focus on lists of things he needed to learn. I wanted to just watch him learn and not be a stressed out nut about every little thing. It seems my laid-back attitude may have been holding my son back. He is so far behind :( I've known he was behind, not just other kids with your average number of chromosomes, but his peers who have that extra as well. I tried not to worry about it. I told myself that every kid develops at a different rate, in different areas. I told myself that Drew has faced major medical problems that other kids don't, so of course he is behind. I just didn't realize how far behind he was in the goals we had set for him. These are goals designed specifically for him. Goals that took into account his medical issues, and his "starting point". He is behind in every area. Gross motor - behind. Fine motor - a little better, but still behind. Adaptive/behavior - behind. Social/Cognitive - behind.

I hung up the phone feeling deflated. I feel like I've let my baby down, like I haven't done enough, pushed him hard enough. I think for me this is the thing I struggle with the most. I am not a go-go-go high energy person. I am naturally laid back, not pushy, not assertive. With my first child I did not have to work so hard, he did just fine. For Drew I have had to learn to be someone I'm not with doctors, nurses, even strangers. I've had to question, confront and advocate for my son. Now it seems I have not done enough. I haven't met the goals I've set for myself either, to be the best mother to Drew that I can be, to be the mother he deserves. I know our kids don't come with an instruction manual, but it seemed so easy with my first child, Tony, (so far) that its especially difficult for me to accept that I'm not a "natural" at parenting Drew as well. I really dislike feeling so negative and may not even publish this, but then, I committed to sharing the whole story so.... maybe I have an obligation to let others know that it's not all roses and rainbows. So, yep, sometimes I get down. Sometimes its thorns and rain.

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!

MERRY CHRISTMAS!

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

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?

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!