One more week!

One more week with no internet. They will be here next Monday to hook everything up. I think I might loose my mind by then. Its funny how much you depend on the computer. I have a heck of a time getting specialists phone numbers without going on their website to get it!

I'm still just super stressed, which means my heart palpitations are back with a vengance! I hate them, they give me headaches and make me feel like i'm having a heart attack! I wish I could explain how stressful it is, some of you know. Even though I think my ped is going to be great, it takes time to develop the relationship like I had before. It makes me nuts that I dont have a cell number or a back line to get into. she returned my call, but I was on the other line, and didnt get to talk to her. Since I couldnt call her back, I didnt get what I needed in the first place! I dont like the feeling of him just floating in the wind. Thats not a good place to be with a fragile child. The heater to his vent is different than what we had before. The therapist said it would be better. But I HATE it! I haven't slept since I got it. It puts out ounces of water into the tubing. Even though there is a trap to catch it, some still gets to him. He actually aspirated Friday night. Luckily, it must not have been much, because he recovered on his own, but he dropped his sats and was breathing super fast. She just told me today that the heater I want has to be ordered, and will take a week. Ahh, I dont know if I can handle this one until then!

Its not that California, or Utah, or any state is better than another. Its what you go through when other places are new, and different. It takes time, and I'm trying to remember that. But its soo hard!

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Ahhh!

We are back from California. Our house is a disaster, no furniture is put together. Way behind on posts, especially the birthday of a certain warrior boy! I dont have internet at the house yet. Hopefully we will soon. Stay with us friends and we'll be back soon

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A tad crazy around here!

Things are a bit crazy around here right now. Yesterday was our anniversary. 14 years! Wow, I swear I just graduated from high school! And the best way I could think to celebrate was Disneyland with our beautiful kids. All decorated for Christmas, we had so much fun, even though Ray, Carter and I got stuck on Big Thunder Mountain, right on the hill, and had to walk off the ride!
We are heading to Utah tonight to get our stuff and finally get moved into the house!! Oh I can't wait. I'm so ready to have my own space, and get Jax stuff organized!
Utah friends, let me know if you want to meet up. Its a quick trip, but we'll try!!

I'll leave you with some pictures from our trip to the beach a couple weeks ago. Arina's first trip to the beach. She had a blast. the water was a little cold for her, but she loved that she had her own, huge personal dirt pile!
We kept Jax out because it was a little chilly for him, and he was still getting over trach infections.

Q&A

Q. Very informative, Lacey. :) BTW - are all your littles blonde except for Jax? I always thought Jax has the prettiest eyes, but so do all of your boys AND your princess! Lovely family you have! :)

A. Its so funny, out of my four of my biological kids, two have blonde hair and blue eyes like Ray. Actually, Tanner is the spitting image of Ray, down to the broad shoulders! Mondo and Jaxson have brown hair like me, and brown eyes that change with the color of our clothes. Sometimes green, sometimes even orange. The other funny thing is that my two boys that look like Ray, are the ones that have the horrible asthma and allergies like he does. Mondo and even Jax with his horrible lungs, have no allergies or asthma, like me!

Q. I have only read your November 8th post so I do not know if you have looked into this. But since he is underweight have you had him checked for gluten issues. If he has Celiacs that would definitely effect his autism.

A. That's a great idea! I'm not sure exactly why we haven't had him checked. I've heard a lot about the gluten diet, but just never did it because he is so limited already in what he'll eat, that I didn't want to even try it. We saw a gastro doc when he was little, but he wasn't much help at all. I'll bring it up to our new ped!

Q. I'm curious, only because my sister is a compounding pharmacist. Can you get the prefilled syringes at any pharmacy? Could you get them at a compounding pharmacy and then pay the compounding pharmacy to re-package the med?

A. We did check into that, and the pharmacist wanted to charge me 70 bucks to do it! With all his meds, 70 dollars a month for that just wasn't doable. I would do that one time if I had to. Right now I'm getting in the pre filled, and drawing it out into smaller syringes myself. I'm getting 4 doses out of one syringe! Now that's cost efficient!

Things are finally falling into place, and life is calming down a bit. Let me say thank you to my wonderful trach friends who dropped everything to ship me some supplies so we wouldn't run out. The feeding supplies were no problem, as soon as they got the prescription, they sent it out the next day. It was the dang respiratory supplies and Apria that were such a pain. Apria finally said they couldn't take him, that they didn't have the manpower. Whatever that means. All I need is a delivery every couple weeks of supplies. It actually worked out for the better, because I don't have to deal with them, and I found a company, Lifecare, that will be great. She gave me some D tanks today, and she'll come out Tuesday and do his admission stuff.

We also found a great rental house! It works out perfect because we were looking for month to month, because we plan on buying soon. But no one does month to month. This house has been foreclosed on by HOA. So we will rent it from HOA until the bank forecloses, which could take months with the number of foreclosures in the state. When the bank takes over, they will give us so many days to be out. Fine with me! Cheap rent, and the month to month I was looking for!

Last weekend we went to Knotts Berry farm with our aunt and uncle we're staying with. Arina went on this car ride, were it whips you around the corner. She laughed harder than I've ever seen! I was crying I was laughing so hard at her!! She is such a funny little squirt!!

Autism

I feel so horrible, Down syndrome came into our lives, and totally steamrolled autism to the back of our lives. I'm not sure why, maybe because Jax is so time consuming, but I wanted to do a post on autism for my Tanner. How he was diagnosed, and how he is now, 10 years old!

We started worrying about Tanner because at 2 years old, he didn't have a single word. Nothing. We checked his hearing, it was fine. So we started having a speech therapist come out once a week to work with him. She was the one that brought up what she called autistic tenancies. He would take a bucket of hot wheels, roll one in front of his face, drop it on the couch, and do that for hours and hours. He would also turn a car over, and spin the wheels in front of his face. When this suspicion was brought up to me, I noticed a lot of other things, even from birth. He was always such a good baby. Never, ever cried. Never played with other children, always played alone. Developmentally he was quite behind as well.
When he was officially diagnosed, we didn't really panic. Kind of the same thing with Jax diagnosis. We said ok, and moved right along with what we needed to do. We went on vacation a few weeks after he was diagnosed, and man, that was an eye opener! He screamed the whole time we were at the beach because he wouldn't touch the sand. Ray had to take him out of the Bugs life show, because the sound and lights had him totally overstimulated.
At 4 he got into an autism preschool at the Carmen B Pingree school for autism. That was what made the biggest difference for him. He started school with only a few words, and came out with full sentences. He wasn't fully potty trained until he was 6 years old. He was mainstreamed into a typical classroom with resource classes because he was so far behind, and for a couple years, he did ok.

In 3rd grade, I think because the teacher he had was not very good, it was a fight to get him to school every day. If it wasn't for his resource teacher, we would not have survived the year. I was ready to re apply for the autism school for him. The next year, his resource teacher made sure he had a great teacher, and that year was much better, and we avoided the autism school.

As Tanner has gotten older, its not really that he avoids people and eye contact. He can actually be quite social. The things I notice are, he doesn't understand sarcasm, he is very literal. You can't joke with him, because he won't understand it. Because he is so literal, he has no filter on his little mouth. This is the hardest part about his autism now. He will walk right up to you and tell you those pants don't match that shirt. He doesn't understand its not nice to say that!
Also he's had really bad anxiety. So much that we had to break down and start medication. If it rains, or is windy, you won't get him out of the house. If it lightening and thunders, sheer panic sets in. I can't get him out of the house if there are clouds in the sky. Because that means a chance of rain, or thunder.
He still likes routine. He gets cranky if we are out running errands for a long time. He also still plays alone, and if his brothers bring friends over, he generally doesn't get along with them. He doesn't have a lot of friends. He's had a couple in the last few years, but thats about it.

The funniest thing....Tanner is a fantastic dancer, and a little actor! You know they say a lot of great actors and performers are not social and probably have autism. I believe it. They are so bright and creative. He LOVES Michael Jackson, and can do all of his dances.

What bothers me is when people say, "are you sure he's autistic?" Oh that annoys me more than anything.
Yes, I'm sure!
He is teeny tiny. Carter outweighs him by 10 pounds, and is about an inch taller. I did notice that when he stood in line with his class, that they are all at least a head taller than him. That really worries me for junior high. We are also quite concerned with his weight. He has fallen off the growth chart, and I'm actually worried that he may have lost some weight in the last few months. He has dark circles under his eyes, and needs a sleep study. My ped said its common for autistic kids to not sleep good at night. I know he grinds his teeth, and even talks in his sleep.

I have no worries that Tanner won't do good as an adult. Sure, it takes him a long time to learn. He is still quite far behind his peers. But I have no doubt he will live on his own, and probably get married some day. He will always have his little quirks, who doesn't? I even see college in his future, if he doesn't get a job acting that is!!
Me and Ray have made it a goal to start attending more autism functions, Tanner knows he's autistic, and I want him to be proud, and meet other kids that do to!

*If you haven't, please consider making a donation to bring Sophia home. They have been working for so long, and I have noticed her account go up a bit since I posted about it. Thank you for that. I made my donation today!

The lottery

I've had this lottery post in my mind for a while. With the problems getting Jax supplies and meds that he needs to survive, I thought it was a good time to do this post.
About a month ago I was watching this show, The lottery changed my life. Its about people who won the lottery and what they did with it. Surprisingly, only a couple stories had people totally blowing their money on mindless things. One actually tragic where a spoiled niece got into drugs and took her own life. So sad!
One that struck me was a doctor, who had a single lottery ticket that was tucked in her white coat, totally forgotten. Of course it was the winning ticket, and this doctor, who already had money, and a nice big home, now had millions more. She bought and even bigger house, and of course lots of lavish cars and other expensive, worldly items. I was thinking, sheesh, why couldn't somebody win the money that could really do good with it?
I know, I know, the lottery is totally random, blah blah blah. But still, you know at night you sometimes think about what you would do if you had unlimited cash.
This is Ray's and my plans:
He wants to start a organization in Arina's name, to help fund adoptions for families that desperately want to adopt, but don't have the outrageous amount of money needed.
We want to start an organization in Jax name, to help families that have a medially fragile child, and are unable to get supplies or equipment needed for them. Do you know it costs 1200 dollars a month to rent Jax vent alone?? And that's a single piece of equipment out of many he uses on a daily basis to live.
Ray desperately wants to build a Give Kids the World for the west coast. It was one of the most amazing parts of our Make a Wish trip, and Disneyland does not have one, only Florida. How great would it be if we could make that happen?
And really, how great if I could have an account for Jax, so that if something is not covered, instead of a complete panic attack, I could just go to the bank and pay it myself?

I have someone extremely close to me, that is struggling big time right now. I wish more than anything that I could have left my house in Utah, and said, move in, its yours for your family, free and clear. A roof over your heads, and some cash in an account, so you never have to worry about food or diapers. The most I can do right now is help with Christmas, so children don't go without anything this year.

Money is not everything, I don't need a big house, and expensive cars. But money does mean a lot with a medically fragile child, unfortunately. Not for the fun stuff, for the survival stuff.
I still don't have Jax tobi, his antibiotic for his trach bugs written a week ago. I asked the pharmacy if I could just pay for a couple days until its pre authorized. He said yes, but its a 6,000 dollar drug. You do the math!
Instead I googled Tobramycin, and got to their website, where they offer their medicine for a 10 dollar co pay. You better believe I'm calling them tomorrow to sign up!
I've done nothing the last few days but argue with Apria. People here in Cali said don't use them, but I needed someone fast. Big mistake! I still don't have Jax supplies, and I'm officially out of trach noses and suction catheters for Jax. My next option, have my child admitted to the hospital because I don't have the supplies to care for him at home. Ridiculous that I should have to go there.
Tomorrow, after I finish screaming at Apria again, and before my search for a new company, I'm going to call a company I've used here for vacations. I don't remember the name, but I have the phone number, and I bet she would loan me some oxygen tanks, and sell me some trach noses. So hopefully I don't have to admit my child to the hospital simply for supplies!

I have already won my own lottery with my beautiful family!

But in my dreams I still can't help thinking how much more I could. Many more orphans would be away from institutions and in a loving family's home.
I have a friend I met back in March, when we came here to drop daddy off. Sweet Megan is single, and adopting beautiful Sophia. She is STILL trying to raise the funds to bring her home. This women has worked tirelessly, and she is not giving up! I think I would have a long time ago! But she knows this is her baby, and it breaks my heart that she is still trying. I want to have a fundraiser for her, but I can't do much until I'm settled in a home of my own, instead of living out of a suitcase. So all I can do for now is make a donation and ask for your help.
Now I know everyone is asking for help with adoptions, I understand that. She has been trying longer than I've ever seen anyone without traveling. I've seen the accounts of other children go to 10,000 in a single day. Consider helping this mommy and daughter find each other, click on her name and make a donation to her account!
What great stuff would you do if you had the money?

Busted!

Busted my dear princess!



So its not a raccoon scurrying around the backyard after all!!

Thank you my friends for your encouragement! I always know that when I need it, you are there!

Yesterday was rough. Really rough!
The biggest issue was getting Jax lovenox, his bloodthinner filled. Sometimes meds for kids are only available through childrens hospital pharmacies because kids have such different doses. I did find out that I was able to get it through the childrens hospital in the vial that I draw up. Then I find out that the vial is not generic, so it would cost me 125 dollars a month for this med! Generic only comes in pre filled syringes, all way over his dose. As of right now my insurance will pay for the pre filled syringes, us dumping 90% of the med out. What a waste, right? I'm still hoping for a better way, because these syringes are bigger needles.But right now I just need the med filled! Its hard enough to poke my child every day, but to use a bigger needle and make him hurt more just kills me!
Then when I tried to fill his Tobi, to kill these bugs in his trach, I'm told it has to be pre authorized. So I have to wait at least 3 days to give my kid an antibiotic! Again, how smart are these people?
I also finally got my insurance info yesterday, which was good news, because I'm in desperate need of supplies. I knew this insurance had bigger deductibles and out of pockets, and I was prepared for that. But the home care company wants my credit card, and they are going to deduct the 20% every month, which will be about 400 dollars! I don't feel comfortable having them do that as if it was my phone bill or something. Doctors appointments, and countless other things will contribute to his out of pocket, so I'm not going to keep paying the home care company and end up overpaying. If they don't agree, I may be switching home care companies already!
It was just a lot to get in one day. I was on the phone so much that my phone died by 3:00. I was feeling like I was going to be paying hundreds of dollars a month for Jax, and I was ready to crawl back to Utah with my tail between my legs!
Thank you to the fantastic pharmacist at Walgreens. That women got to walk a day in my shoes, and we have both been crazy the last two days trying to figure these meds out. She is picking up his robinol for me this morning from another walgreens that compounds. So I don't have to drive out there and get it.
The pediatrician that we've had the last two weeks has also had a crash course in Jax. She's talked to me more in the last two weeks than probably any of her other kids combined! She has basically told me that she can't handle Jax needs, which is ok because I was already looking for another ped. I meet with one tomorrow and I'm really praying she will work, because right now I feel like I'm his only doctor, and that freaks me out a bit. When I sit down with her I'm going to tell her straight out that I need someone who is ready to dive in head first. That we'll be talking a lot, and just to be prepared for the care Jax requires.

I was sitting with Jax in my lap last night. My 25 lb nearly 6 year old still fits snug right in my lap because he is so tiny.
I was amazed that such a little person can be so complicated, and so expensive. How can someone so tiny require so much technology and equipment. Its amazing, isn't it?
But this same little person is so amazing, and so life changing!
And so is his little sister, actually!


I think the boogy in this picture just adds that extra something, don't ya think?

A mothers prayer

Dear God,

Please help me feel peace. I know I'm yet again being tested, and I'm trying to stay strong. But so many tests, so much of the time, and my body is tiring. I know this is a test to see if this was the right move or not, so I'm trying to wait until things calm down and get settled. But right now I'm facing hundreds of dollars a month out of pocket for things my son needs to survive. The expenses just keep coming. I can't find a place to get a lifesaving medication without paying 125 dollars a month for the non generic brand, because generic only comes in pre filled syringes.
Please just help me through this, I'm on the verge of a meltdown. Please.

Amen

Halloween/birthdays!

Before I get to Halloween pictures, I have to say Happy Happy birthday to my little All American boy, Carter!!

He came in to this world so fast, barely waiting for the holiday to be over, and barely waiting for mommy and daddy to even get to the hospital! And the kid hasn't stopped since!
He absolutely loves being a big brother to Arina. Although he is Jax super big brother, he has never been able to do much big brother stuff with Jax like he can with Arina, and she adores him!
Happy Birthday buddy, we love you!

Ok, Halloween.
Halloween didn't start out so well. Sparing you the same ole boring stuff. Basically the time it takes to get new insurance set up is just not fast enough for medially fragile kids. Some of my supplies I'm down to one left! Not a place you ever want to be in with life saving equipment! Today, its coming out, whether we have a policy number or not, I just can't wait any longer.
We finally got Jax cultures back. He is growing two nasty bugs in his trach. We are adding inhaled tobi because the cipro doesn't seem to be killing them both. And surprisingly, his gj tube showed staff. Freaks me out a bit because staff can be nasty if it gets into the bloodstream!

But last night, when we went out trick or treating, I realized that this was the first time Jax has ever gone out with the kids. In Utah, its always been too cold to risk taking him out. Not in Southern California! It reminded me of one of the reasons we moved. Sea level, and getting Jax out of the bitter cold winters that he never handled well. Soon we'll be laughing about how hard it was to get Jax moved, and it will all be a distant memory.

Anyway, without further ado, I bring you Peter Pan and Tinker bell! Trying to get a picture of the two both looking at the camera is nearly impossible!

Tickle tickle Peter!

Princess Tink. (Notice the hazards of being a new walker on her face!!)


Don't ask me why Tanner has a fireman's hat on with his Star Wars costume. He won't wear the mask because of sensory problems!