Friday, April 30, 2010

Promise's promise's

I took Jax back in to the ped today. He is still super junky. So chest x-rays and trach aspirates were ordered. His chest x-ray actually looks ok, for him. Nothing more than the normal lung disease you can always see. Pulmo was called and she wants to start Tobi. So we've added yet another drug to the regiman! Tobi is a very expensive antibiotic neb. But I only paid a 25.00 copay, that works for me.
I promise, promise the auction is starting Monday. I've pushed it back a million times. Buts its a lot of work, its taking me forever just to type up posts for each item. But I'm super excited because we got some great stuff! I think we will raise a lot of money to bring our baby girl home!
Here's a sneak peak at a couple of items.
Of course the great Paul Cardall autographed gift pack, and much more!

Be sure to become a follower of Makayla's blog so you can watch the auction and not miss out on Monday!

Thursday, April 29, 2010

Jax greatest toy!

We are still trying to figure our little man out. One thing we know for sure, he has the Down syndrome stubbornness!
Since his brain injury was an extremely rare type. Hypoglycemia (low glucose) and hyperpyrexia (high temperature), we didn't know what it would do to him. While it did leave him severely delayed, we cannot get this kid to hold things in his hands, or even look at toys! I am starting to think some of it is just his stubbornness!
But this kids hands are constantly going, going at his face. His face has become his toy. And he is starting to do things that he hasn't done before!
He often hides his face from me.

He's putting his fingers in his mouth. Thats new. He will allow NOTHING else in his mouth!

Sucking on the tongue is another good one!

Or you can always resort to the left hand over the eye, one finger in the nose, the other in the mouth trick! Hey, I'll take it!

Ray is doing his final project for his photography class and he wanted to take pictures of our special kids. But weather never permits or we've been super busy. We were thinking this Saturday at West Jordan park, the one with the old time playground. But weather is not supposed to be great that day either. But we will plan on it until we see the weather that day. If you want to come we'd love to photograph your little one. If weather is bad, we may just have to come to my house and do it! Let me know!

Tuesday, April 27, 2010

Pink and frilly things!

I bought a bunch of girl clothes today! I just hope I'm buying the right size. You with DS girls can tell me what size your baby was in at this age, but being in a orphanage, you just never know. Baby Sophia is a tank baby, so we can't assume they are all scrawny! She will be around 10 months when we go get her. Downs kids are generally smaller than normal kids, but I bought 12 month tops. I'd rather be to big than to small! I bought 6-9 month pants, because they also usually have long torso's and short legs. I'm going to have to take clothes with us to Ukraine, because when she leaves the orphanage she will have nothing!
It made me realize that I have nothing for a girl! This is like starting completely over. I need everything down to bottles. You have to remember its been 7 years since I had a "typical" baby. Jax has been tube fed since birth. He did bottle feed a tiny bit when he was a newborn. But with a major heart defect, he only took about 15cc's by mouth before he was sweating and panting. I knew that with my other kids the bottle was gone at a year, but I know DS kids are probably slower, and being in an orphanage I doubt they care to much to try to feed her food! Its so funny, I have 4 kids, one DS kid, and I need advice on what I need for my DS girl I'm adopting. Duh!!
My friend Jessica wants to through me a frilly baby shower. She told me to register at Target and Babies r us. So if you are local and want to come to the shower, email me or go to her blog and let her know you want an invite.
Every day I have a different emotion about the adoption. I read blogs of people that are there right now, and some days its scary, and some joyful.
I know this is going to work this time, everything is falling into place. This is our baby girl! I'm getting my first documents in my dossier sent to Ukraine this week, Eeekkk!!
If you are donating something to the auction, I need a picture by Wednesday. I keep pushing the auction back, and I want to start it Thursday, so get me a picture ASAP. If you still want to donate something just email me.
Make sure you follow the adoption blog. Its been pretty boring so far, but its going to get better very soon!

Sunday, April 25, 2010

My emotionally exhausting weekend!

Carly's death has hit me extremely hard. I think harder than any other death we've endured so far. I don't know if its because we don't know what happened so suddenly, or if its thinking of her heartbroken father having to give his daughter CPR in his own home!

Jaxson is making me crazy!

I hate trachs! I so miss the days of the nasal cannula's and tender grips! We think he has allergies. His ped is pretty sure thats whats going on. He is super junky and coughs all day long. We've added three new meds to his regimen, pushing our total meds now to over 20 a day! Crazy! And the kicker is none of the new ones seem to be helping. NONE. Why? He's on oral steroids, a nasal spray, and Xopenex. We wanted to go to see Oceans today, but I didn't want to take Jax. So we gave him trazadone so he would sleep through it. Nice, I had to drug my baby just to do anything! Its been exhausting.

This little stinker!
If you'll look at his t-shirt, this is going to be in the auction next week. One for a boy and one for a girl. They have different pictures to choose from. This one was given to him on his birthday.

Today he did roll over and worked on head control a little.
Pushing up...

Pretty straight...

Starting to lose it...

Its gone!

Saturday I had a mothers lunch with Intermountain Healing Hearts, our local CHD group. Of course,you may know that Paul Cardall is in that group. His mother spoke about life with a child and CHD's back in the day where they didn't have the technology they do now. And Paul played a few songs, including Gracies theme, one of my favorites. There's nothing like listening to his music live from just a few feet away!
Also if you'll remember he is giving me some signed CD's to auction next week!
My pictures turned out too dark, luckily Kristen took some great ones! (although I do look fat and horrible)

After the lunch we had baseball games for both boys. Both boys won, Carters team is undefeated! We went bowling that night with Michelle for Kylers birthday. We were about 30 mins away from home. When we went to switch out his oxygen tank we realized we didn't have a spare in the car. The first time this has happened in a long,long time. So we had to run home! Sats were 78 when we got home and put him on his oxygen! Oops!

Friday, April 23, 2010

Our DS community has been rocked!

Your going to read this on everyones blog for a while. Our Down syndrome community has been devastated!
Sweet Carly passed away today, so sudden, no one yet knows why. All we know is this sweet girl has been healthy for years now, and went to school yesterday!
Heather called me today and we just sat in stunned silence, wondering if what we were reading was correct. We reflected on how just having that extra chromosome makes them fragile! Even if they have absolutely no medical problems, it can happen in an instant.
No more am I going to mull over how long Jax is going to live, or that his life expectancy has been shortened by all his medical problems.

It just doesn't matter, it can happen that fast. That extra chromosome has made our kids stubborn, made them able to tolerate so much. It makes them glow with something that can't be described unless you've witnessed it. It gives them the ability to know when someone is sad and needs a hug or a smile. But that extra chromosome also makes them so fragile!
I'm still in shock. Shock that I wont see that sweet face and gorgeous hair anymore.

It is indeed a sad day in our Down syndrome community. Hug your DS child tighter, live every day as it comes, and pray for this sweet family that has had such a sudden loss of their beautiful daughter.

Thursday, April 22, 2010

These feelings I have.

I've been feeling a little guilty since we committed to our baby Makayla. I'm so excited to bring her home, and thats what the guilt is about.

When we first talked about adopting to get our girl, it was before we even had Jax. Then I got pregnant and got not only another boy, but a medically fragile boy with Down syndrome. After the craziness of his first two years of life, we started talking yet again about adopting. The discussion came up about adopting another Down syndrome child. I was really back and forth on that. I was dying for a little girl. For a little girl that I could put in dance, that I could go shopping with, that I could talk about boys with. I didn't know if I could do that with a Down syndrome daughter. I still second guess myself sometimes if I should have adopted a "normal" girl.

But I read Sarah's blog, and I'm so inspired! Joyce has the perfect daughter companion! They shop, laugh, and even talk about boys together. I love to read about the fun they have!
So now my guilt has changed. Now I feel like I'm going to neglect my sweet boy that started all this. My Jaxson. I read my friends blogs that have baby DS girls, and I can't wait for Makayla to do those things. Things that Jax never did and will probably never do. Get into things, take her first steps, and walk to the bus with her new backpack!
I don't want to forget about my baby boy, my little miracle that shouldn't even be here today. I'm hoping this guilt will go away when she comes and we get into a family routine. And I see that everything will be ok, and Jax will still be my favorite little man!

Wednesday, April 21, 2010

The botched picture taking!

Little babysitter Carter, the baby whisperer!

On my sisters last day here, we wanted to get a picture of all the grandkids. Oh yeah, let me just say I'm glad we didn't pay someone to do it, it would have been a total waste of money. The girls were so shy, and didn't want to cooperate at all.
Evie is not even in any of them, except the one were you see her off on the side. Little stinker.
These are hilarious!

They would only pose for their moms camera. But no smiles!

The kids love to watch my dad. They are watching grandpa clean out his fish pond. Exciting stuff I tell ya!

Ray saw me and my sister sitting together and snapped a few. And of course, the best pic of me and my sister has the baby barfing at the bottom. I'd say the day was a bust!

Oh, and you'll want to spread the word...Paul Cardall has agreed to donate some autographed CD's for our auction!

Last time

I have beautiful pictures to post, but one last time I have to address this idiot, because they won't show their face I have to talk to them this way.
You may think you know what Down syndrome is, but then you would know that Down syndrome is a fluke. And extra gene gets thrown in there, it is not something the parent carries. Only one type of Down syndrome is genetic, and it happens in about 1%.

Also, You better believe I'm blaming medical profesionals! Jax laughed, and rolled over, and did everything a normal baby did at 4 months. Then while in the hospital were he should have been taken care of, doctors fried his brain by simple mistakes that even I knew they should be doing. So don't leave comments when you don't know what the heck your talking about. Jax would be walking and going to preschool if this hadn't happened.
Also, I know not everyone has a google account, so if it not about being anonymous, then sign your name in big letters at the bottom!

Now go away, because I'm done with you. I won't address your ignorance anymore!

For some cuteness to this post, here's my baby that "lies there and does nothing"

Tuesday, April 20, 2010

Didn't want to do this!

I didn't want to do a post about this, but I guess this anonymous person that is to cowardly to show their face wants a little publicity!
I've been doing my blog for a year and a half, and so far have been lucky to not get any morons leaving comments on my blog. Well now it has happened to me too!
Don't you love these people that have nothing better to do than read other people's blogs and leave nasty comments? Especially when they have absolutely no idea what they are talking about.
First of all, my baby girl that we are bringing home from Eastern Europe is not in a vegetative state. You obviously have no idea what that means. If walking, talking, and learning is a vegetative state than I guess we are all there!
And this last comment on my baby boy being in a vegetative state, now my momma bear claws are out! He is not in a vegetative state either, although he did suffer global brain damage from stupid doctors that are probably about as smart as this commenter! But he does interact, and he does smile and most important, he LOVES. Yes this person thinks all Down syndrome children are in a constant vegetative state. Pretty smart person huh?!
So I ask this anonymous person.. if your son or daughter was in a car accident, lived, but suffered brain damage would you stop calling them a person and call them a vegetable? Think that one over while I bring my Geek squad friend over to find out where these comments are coming from. She found her anonymous comment leaver, and she'll find you too! So giggle your heart out and think you've won until that happens.

So obviously from now on I will be checking my comments first. So I can laugh at this idiot but you don't have to see what they say! Because you know I'm not going private, I would love for this person to see my adorable boys, and better yet our adorable girl that will be joining us soon!

Monday, April 19, 2010

Weekend pictures!

Ok, my computer is debugged, thanks to my baby sister in California! And so far so good. My facebook password has been changed so you shouldn't get any more crazy stuff from me! And I can catch up on everyone's blogs.
First lots of pictures from this weekend. My sister is leaving tomorrow so I have one more day with her and my three nieces. Thats right, my sister has three GIRLS!
Go figure!

My moms face when she saw my sister get out of the car!

Look at these two! And look at the sizes. One is 4 the other is 3 months!

The boys were instantly in love with their new niece. It was so cute, Carter held her constantly. They are going to be so cute with Makayla! This is a nice glimpse into the near future!

We went to the mall on Friday and rode the merry-go-round. Again we included Jax for the first time in this fun ride. He was enthralled by the lights, as were the other kids!
My beautiful sister Kim and Arya.

Saturday we went to the park. This park is at a handicap school, so they have special needs swings. Another first for Jax. I think he loved it!

I love these pics of Carter's beautiful eyes. The first one's my favorite even though his chin is cut off!

Even I went for a swing!

Back off to play with my sister.
I'm hoping to start the auction on Makayla's blog next Monday. Yipee!