Sunday, June 20, 2010


Here we come!! We are driving to Seattle this afternoon to jump on a flight (or two) to Florida tomorrow!! We will be gone for 10 days, so there won't be much any blogging for this momma for the next week or two! UNLESS something super cool happens that I just can't hold in! LOL! Have a great next few weeks everyone!

Oh ya...and Jake is standing on his own and taking about 5 really good steps by himself!! Whoo Hoo!!! I'll get video up when we get home!

Wednesday, June 16, 2010

Sleep study

Results are in...they were worse than the last time! LOL. All I can do is laugh. It's laugh or cry...I choose laugh. We are a little surprised that they were worse. We knew that he wouldn't pass the study, but thought for sure he would at least do a little better. Not the case. I asked the doctor why they would be worse when he is getting bigger and stronger. She said that in his case (having Down Syndrome) getting bigger actually works against him. The bigger he gets, the bigger his adenoids and tonsils get, which blocks his small airway even more. Makes sense. We have not heard from the ENT, but we are assuming that the surgery will stay on the books for August 30th & he will start oxygen at night asap. Now to figure out what to do about the oxygen situation & vacation! We leave in 4 days!! Whoo hoo!!

Oh, and Jake wanted to say "Cheese"...while eating his Mac & Cheese!

Tuesday, June 15, 2010

Game on!

It's me vs. tulle vs. hot glue vs. the pop up tent...we'll see who wins!

Here is the start...

Thursday, June 10, 2010

My heart

Is all warm and fuzzy...because I got this in the mail today...

The 3 lines represent the extra chromosome on the 21st set. There are a total of 47 instead of the usual 46...47 dots!

And just to make it special to me...Jake's initials & birthday!

I love it so much & wear it with pride!

If you LOVE it and want can find them here...

Sunday, June 6, 2010


Our normal June weather in the Tri Cities ( 80's & 90's by now), has been nonexistent. Nothing but rain & wind, with a partly sunny day here and there...that ends with rain. So we (the sun lovers that we are) have been cooped up inside, left to our own devices...movies & old toys. I'm usually pretty good about breaking into a craft at this point but I'm so consumed with doing stuff for Gracie's birthday party that...well if I have time to craft, I'm working on the party. And NO the kids can not help me. They will mess it up! LOL. And yes, I do realize that it is for 6 five year olds, so everything I am doing...well is more for my own enjoyment, they probably won't care and will head straight for the swing set. But that's ok. So, on Friday I decided we all needed to get out of the house and we went to gymnastics (open playground at a place that teaches gymnastics). The kids LOVE it! An hour and a half of running around like wild little people, as many "friends" as 5 year old can soak up, and more toys than any one kid could possibly ever play with. Here is where the Really? comes in...I'm letting Jake scoot around on the floor amongst all the other little ones with the baby toys. He stops to play with a ball, & a little girl (probably about 1ish) comes over and sits with him and stats to play with him. I'm thinking to myself, "Ahh, Jakey found a friend", and before I could even finish my thought the little girls mom came over, grabbed her hand and walked her away to go play with another little girl. REALLY? The sad thing is, it happened again not long after that with another little kid. It really blew me away because most people oogle over Jake. That was the first time that I've ever seen the oh no, not with that little boy look from a parent. Zach told me the other day that I am too sensitive to peoples reactions to Jake. Really? I don't know, maybe I am, but how could you not be? Guess it's one of those life lessons I'm going to have to learn. Find the happy medium between wanting people to see Jake for who he is and how magical he is, & letting people believe what they want to believe. I can't make everyone love and accept him, but I can put him out there and hope that people will try. How could you not?

Wednesday, June 2, 2010

In a funk...

Yesterday was one of the most frustrating days I've had in a long time. By far. To the point of not answering my phone by mid day because I couldn't take anymore contradicting news. Ya, that frustrating. It started off with a phone call from the Seattle Children's sleep lab asking who we would like to use for Jake's oxygen service. Ha...what? As far as Zach and I understood, we were not starting the oxygen up until AFTER the sleep study which would be at the end of the summer...IF oxygen was needed! After many phone calls to the nurse at the ENT's office it turns out that the doctor either decided after we left or was very unclear to us at the appointment that he would like Jake on oxygen now. In the mix of trying to figure out the oxygen "miscommunication", I got a phone call from someone else from the sleep lab wanting to set us up for a consult with the sleep lab doctor. That one totally threw me off because we've done 2 sleep studies in the past and have never done a consult first. Which isn't a big deal, except we live 4 hours away...makes it a little tough to just jump on in for a consult. Not to mention, we just did 2 consults 4 days ago at the same hospital! Share your info people!! So this morning I took a deep breath, told's only oxygen, it could be so much big deal, and started returning my phone calls that I put on "hold" from yesterday. Jake is going to have his consult & sleep study on the same day...NEXT FRIDAY. Not quiet the end of the summer like we were expecting, but I can't argue with these people anymore. Although I probably should. Maybe I will make some calls tomorrow. I'm still in a bit of a funk. I hate being in a's just not me.