Sunday, January 31, 2010


I was blog jumping and found these cute sites...check them out!!

Super cute handmade bags!!

LOVE, LOVE, LOVE these t's My kids WILL have the initial t's!!

You will soon see why this site called to me! I am a big fan of the low rise jeans!!

Conversation(s) from another room...

Gracie(4yrs old) to Jake (1yr) the playroom a few rooms over from where I'm sitting:
Gracie: "Stop pulling my hair"
Jake: "Ahhgghh"
Gracie: "Chuggington, chugging, chugging, chugging, chugg...Bubba, stop pulling my hair"
Jake: "Ahhgghh"
Gracie: "Ok Bubba, I'm gonna have to spank your we really have to start our day like this Bubba"
Jake: Silance
Gracie: "Thanks Bubba...I didn't think so"

Hmm...think I've had a conversation like this a few times? LOL!!

Friday, January 29, 2010

For those rock stars out there...

I came across this web site for our little people with designer jeans! It's called Specs4Us. A mother of a 4 year old child with Down Syndrome got tired of her daughters glasses slipping off her face and partnered with a frame manufacture to make glasses for children with Down Syndrome! So cool! If you are interested... check it out!

Thursday, January 28, 2010

We are home!

Time for a nap! I'll be back to posting more of Jake's story in the next few days! I'm starting to realize how many people out there I am reaching with this blog & I LOVE IT! Pass it on!

Wednesday, January 27, 2010

As Dori would say (sort of)...

Just keep eating, just keep eating, what do we do, we! Jakey is recovering really well from his chest/nasal junk, but getting him to eat is not going so well. We were expecting to go home today, only to find out that he is dehydrated. So we spent today trying to get him to drink as much as possible so we don't have to do a IV...but Bubba no likey the bottle today. We'll see what tonight brings!

Tuesday, January 26, 2010

The view from here

Jake just woke up, he's content, all his numbers are ok. I'm comfortable with my Starbucks, Ratatouille in the background, sitting in my nice little chair blogging. The view from here...beautiful. I love you little man.

Monday, January 25, 2010

Better here than Seattle

Yes, we are back in the hospital...but in the Tri Cities. Jake came down with bronchitis a few days ago, was doing ok with it, but last night he started feeling really icky. He didn't sleep all night, and I couldn't figure out why. I took him to his doctor this morning and turns out he has a ear infection on top of the chest junk. He is also running a low grade fever. So with all this combined, his doctor thought it would be best to have him spend a few days at Kadlec. I have to be honest and say that I am a bit relieved this time. He had a really tough night last night & I was a little nervous about putting him to bed and going to my own room. But I did...sort of. He was up about every half hour. Anyway, we are here...Jake is doing ok. Nothing horrible, just more for precautionary reasons more than anything.

After getting some Tylenol & antibiotics (for the ear infection) in the little guy, he took a long nap this after noon. He was pretty fussy when he woke up...then he pooped...and pooped...and pooped...and pooped. Dramatic you say? NO...he pooped 4 times! Then he sat up in his bed and started playing with his toys like nothing was going on!! Geezz...if we could cure the world's illnesses with a few good poops...! LOL! Anyway, The point of us being here is to watch his respirtory rate, keep his fevers down, and get rid of the ear infection. Right now, he is resting comfortably, let's hope for a nice night! Thank you everyone for your thoughts and prayers!

Sunday, January 24, 2010

Super Mom...

Super LAZY that is! Zach was at work today & I was up a good chunk of the night with Jake, so my parenting skills were at their finest today! For breakfast the kids had pancakes. Lunch, Gracie had ice cream, Jake had string cheese and chocolate chip cookies. Oh ya and cheesy poofs. Jake and I took 2 naps today while Gracie, well she did what ever she wanted. Which actually worked out well because she watched movie after movie after movie today! I was so tired from all my napping that I didn't have it in me to slave over the stove (oh who am I kidding, we would have eaten sandwiches)...we ordered pizza for dinner. I figured I should do something somewhat responsible tonight so I made Gracie take a bath...she had been in her jammies all day. But I screwed that up too by not paying attention to how hot the bath water was. She didn't seem to mind for about the first 10 minutes. She eventually got herself out and went and sat on the couch naked...steaming, beat red. She went to her room when she cooled off a little and put undies on and put herself to bed. I am a rock star parent today! LOL...funny thing is, it was kind of a fun day!

Here are a few posts from old e mails...I've decided not to add the ones that don't say much, so if you see a gap in days...we were sitting watching a baby on a vent!

Best April Fool's Day EVER

I just couldn't contain myself and I am writing my "nightly" letter now! Jake has done so well for the last 3 days that he is almost completely off the vent and breathing on his own. They have not actually taken the ET tube out yet because we want to make sure he has the bronchoscope done before they extubate him, and the pulm team can not do the scope until tomorrow morning. So they have the settings as low as they can go w/o taking him off the vent all together. As anxious as I am to see how he will do off the vent, I'm ok with them taking their time! We still have no idea when we will be home, it just depends on what they see when they do the scope and how he does off the vent. We know we will be here for a few more days, but are expecting to be here for another 3-7 days. We don't want to set ourselves up to get out of here soon to be let down, so we are we are just telling ourselves to plan on another week. We have our hotel room until Friday, so I called and had that extended another 5 days after Friday, with the hope that we won't be here that long.

Thank you everyone for your support. Our family could not have made it thru this with out each and every single one of you. Please continue to think and pray for us, as we are not out of here yet! But I do have to say...THIS HAS BEEN THE BEST APRIL FOOLS DAY EVER!!!

It's weird to read back on these notes and knowing that this ride is no where near over. This was day 8 of 28! You will start feeling our frustration soon!

Nice Try

What a day. By noon today we had held our breath so many times that we were both about to pass out. We got here today around 8:30am, like every morning, with pure excitement that today is the day that Jakey is getting extubated and we get to hold and kiss on our little man. We were also super excited that he is FINALLY getting his bronch done today & we couldn't wait to see the results of that! With in 15 minutes of us getting here the pulm team came in and did the scope...which showed exactly what we expected. He has a moderate case of tracheomalacia (a floppy trach) that is fixed with time. His body just needs time for it to grow and get stronger. Jake's cardiologist has been saying for months that he believed that his hypertension was being caused by a airway obstruction. We asked the pulm dr after the scope if he believed that was the case and he said he didn't believe that it was causing it, but was probably contributing to it. So...back to square one with the hypertension. But all in all the scope went well and didn't really find anything alarming. Then we did rounds and the big topic was extubation! We were all smiling, all the nurses were super excited to see his face w/o tubes in it...just a exciting time. Before it all started the dr sat down with us and made sure to make it very clear that kids do not always tolerate being extubated on the first, second, or even third time...sometimes, and to be prepared to see him get intubated again. He said he didn't see that there would be a problem because he has been doing so well for the last 3 days, but you just never know until the tube is out and he his breathing on his own. So about 20 doctors, nurses, RT's...piled into the room and out came the tube. They immediately put a cpap mask on him because the scope reveled that he needs extra pressure support to help keep his right air way open. He did good for about 5 minutes, then he started getting restless and his o2 sats tanked. 15 minutes later he was intubated again. The doctor came out into the waiting room to talk to us and tell us that Jake probably just needed a little more time to let his lungs fully heal up from the pneumonia and that we will make him comfortable and try again in a few days. As you can guess we are feeling pretty blue right now because we had such high hopes that today would be another wonderful day and that we would get to hold and snuggle our little guy...but that will have to wait a few more days...maybe. So that is were we sit for now!

New Week...New Baby

Remember how a few days ago I wrote that we have been holding our breath so much that we were about to pass out? we got to exhale. Jakey got extubated at about 12:30pm and so far has been doing exactly as we had hoped. As soon as they pulled the tube they put him on a cpap pressure support machine to help keep his airways open while he tries to recover. The doctor said the next 4-6 hours will really tell us if this is going to work or not. But so far he looks perfect! He's resting comfortably (tong hanging out and all), his O2 sats are at 100% (with a little help, but not much), and his bp is 88/41 (that's good for him). So with any luck, tonight's posting will be just as happy and we will have more great news to share!

On another note, we had a GREAT time with Gracie this weekend. We did lots of swimming at the hotel swimming pool, played, painted pictures, went for walks. It was nice. We also got to go to the IMAX theater at the Science Center and see Monsters vs. Aliens in 3D! It was way cool! Grace spent the first 20 minutes with her eyes covered, but loved every minute after that! She even ate popcorn for the first time (she usually says "icky" and pushes it away). After the movie we went to the little "carnival" under the space needle and went on a few rides. She is definitely my little dare devil. We had a great time! Zach was thanking God every second that he is too big for those rides...she gets her carnival ride enjoyment from me! Here are a few pics of our weekend!

And then there was this note! I am pretty impressed, looking back...this is the only time I really had a pitty party melt down! And it only lasted a few hours! Rereading it though...puts me right back in that place. I remember exactly how I felt that day! Thank you for the e mail Krista!!

A Star?

A great friend mine sent me a really nice e mail today and in it she called me a "star". I sat here crying & this was my response...

Oh I don't feel like a star today. Or any day for that matter, because yes, we are here doing what any parent would be doing. But today I am not even that. Today I am having a pitty party. Today I walked in and could tell from the second I saw him that he had not slept again last night. But the weird part is, despite not sleeping for 3 days, he's really happy and playful. Which makes it so hard to just sit here and watch. I can watch him from home. In my jammies, playing with Gracie, holding my baby. I am so bitter today (for lack of better words)...tired of all my friends from home telling me to "hang in there", that they are thinking about us, that they wish we could come home soon. Hearing about everyone's Easter plans and inviting us to come over...IF WE ARE HOME. Today just seems like the day that I should burry my head in a pillow and ignore the world...but I'm a mom, with a sick baby, so the day must go on. Some how I just need to find my attitude adjustment and kick my own butt into gear.

So if there are not responses to e mails or texts today, please don't take it personally...just having a bad day.

Saturday, January 23, 2010

Come on little dude...

Tonight was a flash back night...and not in a good way! Gracie, being the thoughtful & sharing big sister that she is, passed along her little cold to Jake! For the last 2 days we have been watching him to see how his new and improved little body was going to handle it. Tonight I got to the point where "sit back and watch mom" got kicked out the door, and "fix it now mom" kicked in. His little cold turned into full on chest congestion. He looks incredibly well. Same ol' happy go lucky Jake, but he sounds horrible. If he were any other kid, I would have held off until Monday and taken him to see his doctor. But he's not just any kid...he's Jake. Jake who has spent half his life in hospitals, most of which were on emergency basis. So tonight I took him to the Kadlec ER. They did a breathing treatment on him (which didn't work), and did a chest x ray. The ER doctor wanted to send him home with antibiotics and see his doctor on Monday. Knowing my son, I requested that the ER doctor call the pediatric hospitalist & get his opinion as well. I was sure to tell the ER doctor that it was nothing personal, but my son's case is A LOT different than typical children. He was happy to do so. The peds doctor came down (who we know well...unfortunately). He was shocked to see how well Jake looked, considering how horrible his chest x ray looked! Comforting ha?! After talking to him about how the last few days have gone he decided to not do antibiotics because he's not running a fever. He did say that Jake's lungs are so wet right now that he could go either way. He could get better like most kids would...OR he could turn and get pneumonia. He told me what to watch for, asked if I was comfortable taking Jake home, and told me to call him if I had any questions or if any of the symptoms came up. If any of them do come up, Jake goes back to the hospital and is admitted. So we are home now, humidifier on high, hoping for a good night and an even better morning. We will see his doctor on Monday, and most likely have another chest x ray done to see if it is getting better or worse. I'm having a little too much de ja vu with this compaired to the last time he had pneumonia and coding in my arms, so I'm not going to attempt to replay the past in my blog today. I'm just going to say, "COME ON LITTLE DUDE..."

Thursday, January 21, 2010

This is it...

I won't change my layout again...for a little while! Enjoy!

Wednesday, January 20, 2010

Dance like a elephant

I'm not sure I could even imagine how an elephant might dance...Gracie on the other hand had no problem! Today we went with DSAMC (Down Syndrome Association of Mid Columbia) to see Eric Herman perform. It was great! We bought a CD and danced all the way home in the car! I'm sure we will be getting many crazy looks in the next few weeks as we dance like elephants and all sorts of other animals in the car! Watch out!!

Monday, January 18, 2010

Sleep is overrated...right?

I am having so much fun with my blog...sleep doesn't seem to be a real big priority right now! I just found a great addition that I will slowly be adding to my blog called MckLinky! It's a site that has lots of cool things to add to your blog. I originally started this blog as "therapy", like old school journal writing, but for the whole world to see. In my first note I said that I started this blog because I wanted to share how our family "starts over" after 16 months of craziness. Part of my fresh start is learning to be a little more domesticated. Don't get me wrong...I'm not trying to be June Cleaver/Martha Stewart...but would be nice to learn to oh I don't know cook! I LOVE to bake & will bake anything at anytime of day or night. Cooking is a whole other ball game for me! On tomorrows menu...Pizza baked on the BBQ! It's not actually a new recipe for me, but I'm still trying to perfect it...tomorrow I'll post pics and the recipe!

Oh, and the sleep being overrated also applies to Zach...he just got a Playstation 3 today. He couldn't text his friends fast enough to tell them the exciting news...he can now join them on Tuesday night game night! Oh boy...what have I started?! The PS3 was a gift from the kids and I for all the long hour and hard work he put in on our house. I probably should have waited until the last piece of trim was put back and learn!

Now to figure out a way to get Jake's story on my blog in a organized way!

Sunday, January 17, 2010

Stay tuned

Bigger and better things are coming for this blog...but first, the kids must nap! My goal for the next few days is to get my blog looking super cool with lots of fun things to check out, and to start posting Jake's TUNED!

It's 10:30 pm...I've been working on this since...well longer than I am willing to admit, so off to bed I go! This is as good as it gets tonight.

Friday, January 15, 2010

Let's see where this goes!

Julie, 32, married with 2 children. I wasn't sure how to start this I went with that! So here is the skinny on why I now have a blog and we will see what happens next! It's been 16 months since my world has been turned upside down, and I just recently realized that everything in my life is the way it should be and I feel like (for lack of better words) I'm starting over. Raising my 2nd child that is! I have been told so many times by so many different people in the last few weeks that I should write a book about what my life has been like for the last 16 months, how we coped, and what I learned. My response to just about everyone that says that,"I lived it, who wants to read it". And the response I get back, "Everyone". I have no formal writing experience, and to be honest with you, I'm not much of a reader (or speller...thank you spell check), so writing a book seems way out of my league. I have been told that my writing is funny, from the heart and everyone can relate to the things I say in some aspect of their life. I decided to start with a blog, and see where it goes.

Let's back up a little before the real blogging starts and I'll fill you in family that is. As you already read, I'm Julie, 32, married with 2 children. I was born and raised in the Tri Cities and don't ever see myself leaving. I love it here. I'm married to the most patient man on earth...Zach. He's a firefighter and saves lives everyday for a living (that was for you love)! I am a girly girl, he is a mans man. I love all things pink and girly, he loves camo and guns. We love our own hobbies, but love being together as a family even more. I love "me" time, he works 24 hour can see how this works. For us, this is a perfect balance...for us. Moving on! Gracie is 4 years old and do not come any more dramatic and imaginative. She is too funny for words. If you asked her what her name is, she would tell you, "I'm Gracie, I'm 4, and I'm a cheerleader". She just started taking cheer leading classes, therefore...! And then there is Jake. Jacob, Jake, Jakey Pooh, Jakers, Jake Jake...he has many nick names because he has won over so many hearts. Jake is 16 months old, going on 80. He's gone thru more in his life than most of us ever will. Which is why we now have a blog! Jake was given to us with Down Syndrome, which is where I got our blog title. I don't like to think of Jake as having "special needs", I choose to think of our lives as "special with needs". We all have needs, and I think my needs are just as special as Jake's. As are Zach's and Gracie's. Chew on that for a minute!

Eventually (probably not tonight) I am going to outline our last 16 months. Some will be based on what I remember, and some will be actual e mails that I sent out, with reflections of what we went thru. I will add lots of pictures because I am a picture junkie & I think pictures help make the story come to life a little better. I hope you enjoy our blog & please excuse the "construction zone" of my work space as I am new at this blogging stuff and may take some time to figure out how this all works!