Ready to run!

With 2 days left until we leave for California, they are going to be spent running wild trying to get things ready. This will be our first trip with the trach, and while I thought it wouldn't add much to our load, its proven me wrong!
You know we don't let Jaxsons disabilities stop us from taking our beloved Disneyland trips, or any trips for that matter. You just have to be super prepared. We bought a luggage carrier for the top of our car, and we've quickly run out of space even with that. When we bought our Odyssey last year, we made sure to have a tow-hitch put on in case we needed to get a small trailer, and we may just be there already!
Last year I also bought one thing that has been a lifesaver! A tacklebox. Sounds strange, but I use the two plastic bins to put all the little medical supplies we need, and the rest of the bag holds feeding bags and oxygen tubing.

Two things we've added this year that are going to end up taking up a lot of space are our humidifier...

and the air compressor that runs the humidifier.

The new plan is to get another big suitcase and put them both in there so we don't have to make twelve trips to the car to take stuff up to the hotel.

So all together right now Jax has 4 suitcases of stuff! Not to mention the suction machine and feeding pump....
and pulse oximeter, 7 oxygen tanks and a portable concentrator. Oh and a special needs stroller. Whew, thats a lot of stuff. Keep your fingers crossed it all fits in the car! The more I talk about it the more worried I get it won't all fit!

When Jax was in the hospital a few weeks ago we bought the whole family Lifeflight sweatshirts. They were having their annual sale, and we love to support them. The Lifeflight team has transported Jax before, and since we live 45 mins to an hour away from the hospital, its nice to know they can get him there fast in an emergency! But the smallest size they had was a 4t. Now Jax is 4 but we all know he doesn't even come close to fitting in 4t clothes. But we had to get it. This is what it looks like after I washed it. All you can see are those chicken legs!

Oh and maybe an eye!

We've talked about pinning the crotch and making it a onesie!

Picking myself up again!

I'm really trying to pick myself back up the second time around. Its really hard, I can't get that sweet face out of my head. I'm seriously considering calling DCSF one last time and just telling them that if this home doesn't work out that they have for her, please, please consider us! Then I can move on. Many of you said that it wasn't coincidence. What does that mean though? Does it mean I try harder for her or just move on? They already have a home for her, or so they say! I'm also considering putting our home study on parentprofiles.com. I hear lately a lot of people are having luck there. The only bad thing is its 100 bucks a month to post your profile. But it may not hurt to at least try for a couple of months. I do want to know where the 100 bucks goes. I really hope its not just some guy making bank off people who are trying to adopt. I need to check it out and make sure the money goes to something good!

I was trying to catch Jax rolling over. Didn't work so well!
Maybe I'll go right!

Maybe left!

No I'll just look for the bright lights!

My little fat-cheeked, chicken-legged baby!


Check that smile out!

5 days and counting to Disney!

Why doesn't he just rip my heart right out of my chest??

You are not going to believe the story that I'm about to tell you! Your jaw will be on the floor, make sure your sitting down to read this!
I had a doctors appointment up at the hospital with Jax today. As I was standing at the counter to check him in I saw this lady holding a baby. Yeah the waiting room was full of kids, but for some reason my eyes went to this baby. Thats when the back of my mind said, that looks a lot like the baby girl we were trying to adopt. Teeny tiny, tons of dark hair, and her head was a tad smaller than a normal babies head. Not even noticable if you didn't know she had that defect.

But I did,

I knew that had to be the baby! She was with two ladies, I suppose foster mom and the case worker. They walked up to the counter and said they needed to make a follow up appointment for ----. I just about fell out of my chair! It was her! And friends, she is so beautiful! She was just content sitting in the lady's arms, looking around. Simply gorgeous. Why, why did I have to see her? Do you know how this hurts me? I was over her, moving on to find another baby girl. Now I want to call DCFS and yell, "give her to me. You have no idea of the knowledge I have. And that she would be perfect in our family".
The crazy thing is she was seeing the same doctor I was there to see. I knew that because the case worker had told me she was seeing her. I almost cried right there in the waiting room. When we got called back and the doctor came in, she asked me if everything was ok. I told her I'd just seen a baby that we were trying to adopt. She knew exactly who I was talking about. Now don't worry, the doctor didn't violate good ol'e HIPPA. No names were mentioned or diagnosis. I just told her the case workers don't understand how much I know. And that they strung us along. They think the baby is terminal. But they are case workers! They have no medical background. They have no idea that she is a cake walk to me. And the doctor did say that compared to Jax her medical issues are nothing! Urgh, this is so hard! What are the chances of seeing this baby and putting two and two together? Of course it did happen to me, it always does.
I'm just going to close my eyes now and click my heels together and say.. there's no place like Disneyland, there's no place like Disneyland. In a few short days I will see my Ella and my sweet Zoey girl. And hopefully Peanut too!!


Now for pictures.
Jax was not waking up for therapy! No way jose!





And chillin at our doctors appointment today.

The easy life!

Man, rolling around on the floor all day is hard work! Enough to make anyone exhausted! And it really has been for him because he's rolled all the way over onto his belly 3 times in the last two days!!

8 days and counting to Disney/Zoey and Ella hugs!

Hugging my boys tight, and taking their pictures too!

As some of you may have seen on my facebook, my sweet Libby earned her angel wings yesterday. She had come of ecmo on Tuesday, and I don't know what happened. I don't know if she arrested again or if she just wasn't oxygenating well and couldn't go back on ecmo. All I got was a text from her momma telling me she had passed. I will give her a couple of days, but I do want to know when her funeral is. We were tweaking our trip plans, adding an extra day so we could drive up there and see her before coming home. Now I don't know what we will do. This has hit me hard, I've known her for a long time, and I know Liberty was her momma's life! She was her only child and she devoted her life to keeping her well. I know she is in great pain right now and it kills me.
Also sweet baby Kelsey went home yesterday. This also hits me hard because it brings back what the geneticist told me. That Jax was a miracle because most DS babies with this severe medical problems dies in infantsy. I'm finding this to be quite true, as Kelsey is the 5th baby with severe problems to die that we know. A lot of DS kids are born with multiple medical problems, the ones the geneticist was talking about was babies that spend months in the PICU. The ones that can't get off the ventilator, the ones that hang on the edge for months. Ones like Jax. So I kiss him and thank God for 4 years with him, and a couple of other ones we know that were this severe. His buddy Gavin and sweet baby Bella, two more miracle DS babies that spent months like Jax did. And I apologize if I've missed anyone. Although we all know that all DS kids are miracles!! Many are born with heart defects, bowel problems, and airway issues. Then lets not forget leukemia, and now this blood disorder that Jax has, antiphospholipid antibody syndrome, is popping up in many DS kids!
So today we didn't do much but enjoy our boys. We played with daddy's new camera, doing a photoshoot. We are still learning a lot about the camera, it has a lot of buttons to figure out. So some came out with weird coloring or a little blurry, but we did get a lot of great pictures. It was a great first try. Here are a few. Warning, there are a LOT of pictures. Jax is especially hard to shoot, since he can't sit up and doesn't smile and look at the camera, but enjoy!

Calling all wheelchair experts!

I thought I would do a post on the stroller that we have for Jax so A. If your looking for a stroller/wheelchair for your child, and B. Give me some advice on my dilemma with ours.
We got a Kimba Spring for Jax. We looked at all options before choosing this model. The main reason we chose this is because its not a wheelchair! I don't mean to sound rude, but he's so little, I thought he would look funny in a wheelchair. I wanted a stroller, but with the capabilities of a wheelchair. This has to last us 5 years because our insurance only covers a wheelchair every 5 years. I haven't used it around town lately mainly because although its not a wheelchair, its still bulky to take places. But it's ideal for school and our California trips, and since we are going again in a couple of weeks I've pulled it out to make sure its ready.


This is from our last trip to Cali. You can see it gives him the support he needs. And it has a wide headrest for maximum support for a child that has no head control. Also great for when he falls asleep!


The number one thing that made me pick the kimba was the fact that it had a canopy! No wheelchair has one, and it protects him from the sun!

One thing that is kind of inconvenient is the oxygen tank holder is on the side, so it makes the stroller quite a bit wider, so going through small spaces is tough!

This is where I could use advice. One reason why the stroller has been sitting for a while, is it came with a basket underneath that is so small its worthless! I don't have a picture because we've already taken it off. But it won't even hold a feeding bag, let alone the suction that now accompanies us everywhere. The wheelchair shop ordered us a vent tray, so we can utilize the space underneath. With no where to put a suction, the stroller was useless to us. But when we got home with the tray, we found that it still was to small for our suction! Urgh!

If you take the suction out of the bag it fits perfectly. The problem with this? First of all, do people really want to see all the boogies that we've sucked out? I don't think so. Also, if we have to take the suction out and carry it with us on a long ride, how do we carry the dang thing?

Does anybody know of a smaller bag that holds the suction machine? I thought of making one myself, but I don't think I can get it done before we go on vacation. I need something smaller to put the suction machine in so it fits and we can also carry it around.

If your child also has a feeding pump. We hang ours on the side of the stroller, which is what we do with our normal stroller as well. We have a friend that has a wheelchair, and it has no place for a feeding bag either, so this works well.

If your needing a wheelchair but you don't want the wheelchair look, I would recommend the Kimba. It comes in 3 different colors, and it only has a couple of small things I mentioned before that I didn't like about it. No wheelchair is perfect in every way right?

picking myself up!

I've picked myself up and dusted myself off! Now the real hunt begins! The hunt to find my baby girl! I've sent my home study to Spence Chapin and Adopt America, and I'm going to look up adoption lawyers and send letters to them. I will put our name with Robin Steele, knowing that there is already a huge waiting list with her. We will find her. I've put the girl stuff up that I bought. I'm not even looking at it until I have a girl in my arms!
A lot of people asked why I don't do Reeces Rainbow. We just can't do international. I love those kids, and I want to bring all of them home, but there's no way we can afford it for one, and the other, we can't leave Jax here for that long while we go pick the child up. Its not like I can leave him with grandma, we would have to pay a nurse to take care of him. The cost for that would be phenomenal!
In the next few days I'm going to have a raffle to raise money for our adoption. I wish I had a face to raise money for, but of course we don't have that yet! There will be baby legs, blankets, and DS calenders, just to name a couple things!
Now tomorrow night me and Ray are going out. I need a date night!

You want to meet these blankie kids!

These three angels stories are on the blankie blog. Trust me, you want to read them. Some amazing stories this time! From sweet Makenzie who suffered a brain injury from choking on a goldfish cracker! And an amazing cancer survival story! Check them out!

Other great news, Libby is now off ecmo! Oh I couldn't be more relieved than if it was my own child. I was very worried that she had just endured to much. She is still very sick, but being off ecmo is a huge step!

And still no word from DCSF.
Surprised? Nope, me neither!

New Update

I just got a call from DCSF. Its a no go with our baby girl. One thing's for damn sure, I'm never dealing with DCSF ever, EVER again. The case worker said they placed her with a women that has some license to take kids with neuro problems. So now your telling me I have to have a license to raise a neuro kid? So having my own neuro kid doesn't mean anything? Having my CNA and working in a childrens hospital doesn't mean anything? I feel like they totally strung me along. They knew they were going to place her with a specialist, yet they still wanted my home study. Thats why I'm done with DCSF. Its not worth not having to pay to adopt, and getting the free medicaid for them because they are state children. I have fantastic insurance. My boys are going to be crushed! Thats partly my fault, I guess I shouldn't tell them until I know for sure. Now who knows how long it will take to get my baby! The case worker wants me to get my foster license so they can use us in the future. No thanks, I can only take so much heartbreak, and I don't need to do your dumb classes to tell me how to parent. I'm probably already a better parent than your classes teach!

Ready for summer clothes!

First of all, my gripe!
I am so sick of DCSF I could scream! I called today and she said that she got the home study and she gave it to the case worker for the baby. And that the case worker is going to look through it and then call me. Then she says that she has a couple of home studies to look through!

Uh, say again!

First, back in December, there was no families for this baby. Then all of the sudden they have multiple families, so I give up. I call in early January to say we are doing our home study and are still interested and am told that they still haven't found a family for her. She called me a couple of weeks ago to see how my home study was going and if it was almost done, so obviously she wants our home study. Now there are a couple of families again? OMG! I don't know if she's just telling me that so I don't get too confident, I don't know, all I know is that I'm beyond frustrated. So we are back to waiting to hear from DCSF. In the meantime, I'm pursuing other agencies, so if you know any special needs adoption places, or even a baby girl that needs a home, email me please! I want to be ready to go forward if this doesn't work out. I feel attached to this baby that I've never even seen and I feel like my heart is being played with! But now that my home study is done I can look anywhere for a baby!

Anyway, moving on to better things. I pulled the boys shorts out of storage to get ready for our California weekend trip in a couple of weeks! I was trying Jax shorts on him, the determination, this boy needs no summer clothes! All of his shorts from last year still fit! Some he's even had 3 years in a row! The good thing is it save's me money. The other good thing is my favorite shorts of his still fit him. And you'll never guess what size they are?

Yes, my 4 year old can still wear 6-12 month shorts!

Also I found these sooo cute baby flip flops I had to get for Jax for summer! Yes they are a size 1, Jax still wears newborn size shoes!

But aren't they the best!

So Cal here we come!!