The golden ticket.

Happy Friday everyone. Jax was quite bright eyed this morning. We've been depending on our Napnanny a lot more with the airway and fluid issues. When he wakes up in the morning, his eyes almost look normal. His cheeks and chin are still huge, but you can see his eyes. Good morning beautiful!

We are heading back to California in a few weeks. I still don't have definite plans, we're waiting to see if daddy can get more time off. It makes me crazy not to be able to plan, I have to have a plan. We know for sure we are doing Disneyland on the 20th. Why, because we have our golden ticket. The 20th is Tanners birthday so he gets in for free, wahoo, any way to save a buck.

Any of our California friends, we'd love to get together. We know for sure we are going to Zoey's house, our favorite friend. We don't have a lot of time, but email me.

Also, I need all of our DS friends to email me a pic of their kido. It doesn't have to be a profesional pic. I just got a great idea when I saw this pic on Emilia's blog.

It was the sweetest thing I'd ever seen. So I'm buying a pic picture frame with 3x5 spaces, and I'm going to put our friends pics in there with a saying. I was thinking "you think we're different, we think your all the same". If you know something better, please give ideas. My email is laceyrugg@hotmail.com

More swimmin

Hi friends, first I'll update on Jax. His ped talked to neurosurgery and his ENT about treating the symptoms were having from the SVC blockage. Of course, still no word from Boston, so we need to be ready if they say no, because his symptoms are getting worse. His airway issues he's having we think are from all the fluid in his lower face putting more pressure on his airway. He still can't have his tonsils and adnoids out because of the bloodthinner issue, so we may be going to c-pap at night. Yah (sense the sarcasm?)

And the only way to treat pressure in the brain is by putting a shunt in. Nope, no way, not going to do it. To me it seems more logical to fix the SVC than all this crap. She still thinks the SVC surgery is going to be to risky. I say let me decide that if Boston ever calls. The shunt would be a huge surgery, infection risk, not to mention another foreign body in his head that he can clot on. So we have lots of appointments coming up. Cardiology, pulmonology, vision. Whew.

Here's some pics from Tuesday night. My sisters went home yesterday. Ugh, I miss my nieces already.

My nieces checking out Sadie's birthday cake. Sadie is the older one.

Evie giving me her evil eye.

Thanks for all your sweet comments on my last post. I was so upset about this baby dying. Here's a couple of blankie kids. Of course I don't have them up on the blankie blog yet. I'm a little slow this week.

Heartbroken

Friends, I'm heartbroken tonight. I had a blankie finished for a barely 3 month old baby girl with holoprosencephaly. They didn't know how long she would live. I emailed the grandma who requested the blankie for her address. When she sent it I saw she lived right here in Utah, and close. So I emailed her and said can I hand deliver it? She emailed me back and said she would ask her daughter. Then she emailed me and said the baby has pnemonia and they don't know if she'll survive the next couple of days. So I was going to go today. But I never got there. The boys being back in school and i had to go get them for a dentist appointment. I was going to go tomorrow morning. When I got home tonight I had an email from the grandma. Sweet Lily passed away tonight. I missed it, missed my chance to see a piece of heaven before she went home. I'm so sick that I missed my chance. Now I'm going to have the blankie embroidered with her name, birth and death date for a rememberance blankie. Please pray for Lily's family tonight.

I can handle this

Just wanted everyone to know I haven't lost my mind (yet) although its eerily quiet here with all the kids in school all day but Jax.
This morning was much better. I forgot to take pics, as today is Carter's first day. 1st graders start a day later, and he was sooo excited. No worries with my mature 6 year old. He's ready for junior high.
Tanner did much better. But we had a talk last night. He gets a star every day that he goes to school good. And after two weeks if he has all stars, he gets a transformer. This morning he got ready, stood with me while we watched Carter go in, and I walked him over to his area. He did walk in behind his class (my hope is to get him to line up with his class and go in with them, baby steps) but he teared up when I wanted him to go in with them while I went to find Ms. L, his resource teacher. So I let him walk with me to find her. Then she walked him to his class, no tears. I'm telling ya, baby steps, thats all I need.
My ped called a doctor she'd been to a conference for. He is an autism specialist, he speaks all over the country about it, and he has a clinic here. He said a lot of autistic kids are having this problem, and its anxiety. Which is totally Tanner. Every time he see's a cloud in the sky he thinks its going to thunder. We will be starting him on anxiety meds that he will take daily. I really didn't want to medicate him (Jax takes enough for us all) but if thats what he needs. The anxiety med that he has now that he only takes with meltdowns is not going to work. It causes major drowsiness and twice he's fallen asleep at school after taking it, so thats not going to work.
So we will start this med, and go see this doctor. I'm excited about it. Its been a while since he's seen an autism doctor, so this will be good.
Tonight we are having a birthday party for my niece thats in town, and doing some swimming, so great pics to come.

Back to school, way to early

As you can see, Tanner was less than thrilled to go back to school today. I feel the same. This is way to early to be going back to school. I hate it, not only are my sisters still in town, and I'm having to run around and get school supplies. It makes me feel like summer is over. And I'm not ready for it to be over. We still have two small trips planned.

Ugh. And then Tanner had a complete meltdown. I had to drag him to the car. I gave him his anxiety pill, because I saw that he was going to meltdown. But it didn't help. Mondo had to pull him out of the backseat for me when we got to school. And then when we dropped Mondo off, he wouldn't go in with his class. I was carrying Jax, sweating profusely, utterly embarassed by my kid, who no one knows is autistic. I left him outside and went to find his resource teacher. We were chasing each other around. I finally got him inside the school, screaming bloody murder. Then I saw his resource teacher running down the hall. She heard him. She has been so amazing with him. She's the only reason he hasn't been pulled out of this school yet. So I left him with her, screaming in the hall.

I am completely at my whits end. I can't do this all year. I'm thinking he needs to be pulled out of a regular classroom. Now its just where do I put him? The autism school has a huge waiting list. I think the only thing is a cluster class through the school district. I do know another autistic child in one of those. Its a smaller class and all special needs kids. I mean, is any kid in his class going to like him when they see him throwing a fit? Its just the right ammo for kids to tease him.

I'm telling you, I'm about two seconds away from a nervous breakdown. I go to my ped today to discuss stuff thats going on with Jax, the fact that we still haven't heard from Boston. Now I get to bring up my autistic son and were to put him in school.

Happy Monday everyone.

An inspiration

A week or so a go our friend Gavin's mom emailed me and said she found something she had to get for Jax. It came yesterday and I agree, it is soo Jax.

I can't believe how many people my little munchkin has touched. That everyone feels the same way I do, he is an inspiration.

Today me and my sisters and mom went and saw My Sisters keeper. Stop reading now if you don't want to hear about it. Although I promise not to give away the ending, I've gotten in trouble for telling too much about a movie in my posts.

I read the book a couple of years ago, so I knew what it was about, but I never knew what an impact the movie would have on my emotions. Its about a young girl who has luekemia, and her younger sister is an invitro baby genetically matched so she can donate bone marrow and other things. The young sister is now expected to give her sick sister a kidney that she needs, but she's tired of being the donor, so she sue's her family for medical emancipation.

Although leukemia is one thing we haven't had to deal with, of course many of our friends have. And even a cousin of mine. It is one thing I'm terrified for Jax to get. It is common in DS kids, and so far he's had every complication you can think of, so I just wait for this to happen. And I know his little body would never survive it. But it also hit home in other ways. The mom will not give up, will not let the daughter go. It reminded me of me. When I met with the palliative care team last month, thats one thing someone brought up. Is taking care of Jax become more like a job to me, something that I have to do, and won't let go of it. Its clear the daughter is ready to go, but mom won't let it happen. I have already been feeling like that lately about Jax. If Boston says they can do surgery but its incredibly risky (if they ever call) am I just doing the surgery for me? Am I putting him through too much. The difference is he can't tell me how he feels, unlike the girl.

Trust me, its an incredible movie, and I highly recommend it. But prepare yourself, expecially if your the mom to a medically needy child. I cried with the rest of the theater, but I was holding back sobs.

Swimmin baby

Whew, its been a crazy last couple of days. With my sisters coming into town, and some of you may know that the 24th of July is a big Utah holiday. For me its an excuse to have a parade and a party. Any excuse for a party.
We had a parade this morning, and of course we overslept. Luckily we had family that had slept down there and saved us spots. We got there just as it was starting.
Later we went to my aunts for a party. At first Jax wasn't liking the water much, which is strange for him because he normally loves it. But he's been cranky lately, its one of the things I'm watching. Along with sleeping a lot, and the turning blue when he cries. I took him out of the pool and put his O's on. When he cries he obstructs, but lately its been really bad and he gets soo blue. I don't know if its obstruction or his heart.

I put him back in a little later and he was very happy. I think he likes the water because his body is free. He just floats. He can't move much normally because of severe hypotonia, so in the water his body can move, its like therapy.

Got my goggles on, lets go underwater.

My maniac child. He figured out how to do front flips in the water.

A lot of you asked if you can buy the calendar. It usually comes out in November. Its 2010's calendar. I will be buying a lot for Christmas presents this year. So I'll let you know when its out and you can get one.

Drumroll please...

Here are some pics from our photo shoot for the calendar. She took a bazillion, so I don't know which one she will use, or how many.
It was done by Julie Williams at www.juliewilliamsphotography.com
I was glad that she didn't mind doing them with his shirt off. He has so many scars and tubes. But thats him, and thats the reality of a lot of DS kids, so I think its ok to show that. Also I worried about them wanting the oxygen off, again, thats part of him, he's had it his whole life and probably will continue to have it.
Man he looks like the michelin baby with all that puffiness in his upper body. We had a blast with sweet Zoey, she was very cute. My guess is our month will be June or July, since its a summer scene.

Oh so cute

Our photoshoot went well today. I just hope they turn out of Jaxson. He was with an adorable 4 year old named Zoey, no not the Zoey your thinking of. He basically layed there and they tried to get her to smile and be cute. Once again I'm reminded of how much my almost 4 year old can't do. She'll be smiling so cute and he'll just be sitting there looking around. The reason I really wanted him in the calendar this year (besides that he's so cute) is I don't know where we'll be with him next year. I promise I'm not being pessimistic, just honest. He may be having a huge, scary surgery in the months to come, and while he was relatively healthy I thought they better do it.

My sisters are coming in to town tomorrow. One from Oklahoma with my two nieces, and the other from California. I'm so excited to see them. I'm going to go girl shopping crazy since i don't get to buy for girls.

I was going through my pics of Jax, I'm sending Kaelyn's mommy some pics of when he had his PDA ligated. She's having that done soon. And I found these cute pics of him from 2007. Enjoy.

This is what mommy does to me when I have long hair.

One of my favorites of him. He looks so angelic.

Stuff from Africa

Ok bloggy friends, I need your help. We bought this sunscreen from coppertone. It coppertone sport, spf 50. I put it on Carter today, because the kid doesn't stay inside for one second. And he came home fried. I'm so angry. I've always been good about keeping my blondie from getting burned, but this is the second time I put this sunscreen on him and he burnt. The other sunscreen I have is a little different but its coppertone. Most of them are made by coppertone. Does anyone know of anything that works well with water and kids? Look at this kid. (although I do love how the sun bleaches his hair more)

We got a package in the mail today all the way from South Africa. Meagan and Keaton send us some stuff from Africa. Some animals and other nic nacs.

Look at these, there pencil sharpeners. The boys can use them in school. The funny thing is when this package came, Jax therapist who is also from South Africa was here working with him. She said a lot of stuff in Africa is wood and painted like this. Too cool.

Also this beautiful book and this cute soccer t-shirt for Jax. The world cup is going to be held there next year. We sent a blankie and some of our Thomas trains to Keatons cousin Deqlan that battled cancer and now being diagnosed with Autism.

Thanks Meagan and Keaton, we can't wait for pics of our stuff when it gets there!

Doin some switchin

Today was a pretty productive day, for a Sunday that it. I've been wanting to change Jaxson's room around a little. His bed was in front of the window and the changing table on the other wall. Well I wanted his bed away from the light and the changing table by the light so I could see. So we did some switchin. I tried to get a pic of his room, but I kept getting a wierd flash. And there's nowhere to stand to get the whole room, but I wanted you to see my decorating skills. My first room I got to decorate, and we kind of had to because when we moved in it was pink. Ya, we can't have that for our boy, and monkey's are kind of his thing. I had a book mark that was a baby orangutang, and its hair was sticking straight up, soo Jax.

We also wanted to get a table put together that we bought Mondo for his birthday. He got the idea when we went to visit sweet Zoey. Her brother Jake had a table with all of his lego's on it. Mondo wanted one too. So we bought a small table from Ikea, painted it black to match his pirate ship bed, and wala, a lego table.

Notice the video camera. We let him have our old camera. He makes lego videos. So cute.

His pirate ship bed. Don't mind the mess, we are in the process of cleaning, and most of his lego's haven't made it to the table yet.

We did go swimming today. Sorry, no pics, it will have to wait again until Friday when we go swimming at my aunts. Daddy didn't want to take his nice camera to a pool were there are a lot of people. He loves his camera and doesn't want it stolen.

Jax is doing better today, not quite so out of it. Yeah. I was watching extreme home makeover and they had this Christian singer. He sang He's my son. I've heard the song before, but listening to it again touched my heart. Its like it was written for us. A dad praying for his son, wanting to take all the pain away from him. Saying we've done all we can and its in his arms now. I want to do a montage for Jax with it, but that will take a while and I wanted to post the song for you. So this video is another little boy, I was hoping to find the lyrics on You tube but couldn't. So here ya go. Go get the tissue box first and listen closely to the words.

A backwards day

We had to get up bright and early this morning to see Ice Age 3. I needed to bath Jax, but he takes longer to bath because we have dressing's to put on. So we skipped the bath. Ice Age 3 definitely a go see, very cute. The boys laughed the whole time.
Around 3 I decided to go ahead and give Jax a bath, his g-tube and c-tube dressings didn't get changed this morning, so I took them all off, was ready to put him in the tub and thought. If I flush him out tonight, he's going to be stinky and I'll have to put a whole new dressing on again. So then I thought I will just flush him out right now. I can't leave his tubes undressed, he has grabby hands. So we did our flush out at 3 and then took a bath. A little backwards, but thats ok.
Jaxson has concerned me a little the last couple of days. He looks super puffy to me, and if he lays on his back for a while his eyes get puffy. He also had a couple of episodes were his alarm went off but when I went in there is O's were in his nose, but his sats were dropping. They came up on their own but I don't know why he's doing this. He also has been more lethargic. He almost looks stoned, which has me concerned for siezures again. Status siezures, that is. Its kind of funny how we were just talking about his status being different and now he is acting like he's in it. I'm going to watch him for a couple of days and wait for the increase in meds to start working, then we'll make a judgement. Cross those fingers for no status though, that would be very, very bad. The pic on the top left hand side of our blog was last time he was in status, not a pretty picture. I was trying to take his pic after his nice bath, he looks a little stoned don't ya think? No hands by the face like he usually does.

We are going swimming tomorrow. Can't wait to take some pics of Jax in the water. We are also going to a photo shoot on Tuesday. Jax is going to be in our down syndrome foundation's yearly calender. I'm so excited, I've been trying to get him in that for a while now. Its a beach scene. How fitting for us, and he'll be in his swimsuit. Sexy baby. I just hope it goes well. He's not easy to take pics of, even though he's sooo cute (I'm not biased) he can't sit up and he won't look at the camera and say cheese. So I'm crossing my fingers he behaves.

Oh and lastly. Today Lily's birthday bash giveaway is gift cards to walmart. We can all use those right. Hurry over and enter, you only have the rest of today.

Jaxson's new ride

You know how you have those days when nothing goes right? Well I had the exact opposite!



Yippee, finally!!!



First of all, Lily's givaway today is a little something for you moms. A 30 dollar gift card for jewelry. We can all use that right? But you better hurry over there because she will draw a winner tonight at midnight.

Next good thing. Daddy got a raise! It was enough to add about 100 bucks to his paycheck. A hundred bucks that we can definitely use. The only bad thing is, we think the raise is because he's thinking about quiting to finish school. And they need him, so they think this will keep him around, we'll see.
Then, the school accepted our appeal! So now we can get financial aid. This will make school life much easier for us. And maybe daddy can get part time work so he can bust through school. He has to have at least part time, because we CANNOT go without insurance. We checked with the school and you can no longer get insurance through them if your a full time student. One of the things that was cut with this yucky economy.
Now, Jax and his new stroller. Its basically a wheelchair with stroller wheels and a canopy. The main reason I got the stroller instead of the wheelchair was for the canopy to cover him from the sun.
Gettin fitted for my new ride.




Man, sittin here is a lot of work, maybe I'll just sleep through it.

The other great news, we ordered a base that works with the stroller seat in the house. It was denied by insurance because its a "convenience item". But we appealed it so it was ordered. Well the insurance still denied it, but since it came, it will cost the wheelchair shop more to ship it back to Germany so we get it for FREE!!

Lookin good, lookin old, yikes, my baby is not a baby anymore.

Neurology appointment

I am posting some pics I came across when going through stuff. It was before I had a digital camera. This is Jax after he'd been intubated for 2 months. Sedation meds no longer worked for him. It was about 8 days before his devastating brain injury. Notice he still has the same hairdo.

Neurology appointment didn't go too bad. He is upping 2 of the 3 siezure meds to see if that helps at all. We talked about how we will find a new med that will help the siezures for a few months, and then they start to get worse and worse again. I just hope we can control them before he goes into status again. Some doctors look at his EEG and think he's in status. Because his EEG shows constant siezure activity. But you have to look closely at the lines to see true siezures and abnormal activity. Plus you can tell by looking at him because he is in neverland when he's in status. Staring off into space. So we'll hope this increase works. If not, they can admit him and try high doses of meds like valium, that has been shown to work sometimes. But I'm not doing anything that requires inpatient right now. We've had 4 admits this year so far, and thats enough.

Tomorrow, I get Jax new stroller, wahoo.
Have you ever seen someone so excited over a stroller?
Stay tuned for pics of him in his new ride tomorrow night.

Its definitely stress

Well now I know that headaches, heart palpitations and neck pain is stress. Its rearing its ugly head today, a day that I took Mondo to the orthodontist and found out that all his stuff is going to cost me 3900 dollars. Yeah, and thats with insurance. The total is over 5000 dollars, and my insurance only pays 1500. Should I call around to ortho's and see if they will give me an estimate on their prices? Or just deal with it. Its a really nice office, but I wonder if all the fun stuff they do causes their prices to be higher. I just want the lowest price possible. But I'm exhausted. I don't have the energy to call around. I also just got a call that Jax can't get traditional medicaid and the only waiver she knows of is the brain waiver, which he has but they have to be 18. I'm sure different states have different waivers, but how can our state have no waivers for kids? Now if we go to Boston it will all have to be out of pocket. Oh, here comes the pounding heart again.

We are trying to find a way daddy can go part time to get through school. But I don't know how we can afford that.

Sigh, does it ever end.

Tomorrow I get to drive all the way to the hospital to meet with a doctor who's already told me he doesn't know what to do about Jax siezures anymore. Remind me why I'm meeting with him again? I honestly don't know. I was hoping we would have heard from Boston by now. Because if someone will fix his SVC problem, then the increased siezures may improve some on there own. I can't wait to hear what he has to say tomorrow. (Do you sense that sarcasm?) The only good thing this week is picking up Jax new stroller on Thursday, and knowing it was covered 100% by insurance. Finally something.

Here's a good way to end a sour post. A cute blankie kido and a pic of my munchkin man.