Getting out!

With all the stress around Jax and all the problems he's had lately, we all needed a fun day in the sun. Not hard to find here in SoCal!



The best stress reliever for me is playing with my kids. Getting down and dirty! Man do my shoulders ache today!!

We are still fighting coughing and tons of junk with him. Our pulmo appointment next week can't come fast enough!

Remember Maggie

Remember our dear friend Maggie?

A year ago today we lost our Maggie to mitochondrial disease. A disease that it took 2 years and doctors in other states to get diagnosed. It is extremely rare, and almost always fatal. There is no cure for mito.

Please watch this video, don't pass it by. Spread the word about mito. We need to find a cure so we don't lose any more friends!

The loony bin!

Still haven't had a chance to check on my friends, so I am hoping everyone is doing good!

Jaxson is going to send me straight to the loony bin! Along with the typical increased seizure's, Monday he had a big retching episode. An episode that led to aspiration. It was a mild aspiration, but that doesn't matter. Yesterday he continued to retch and gag more. 3 days of no poop, even with his suppository. Last night after I put him to bed, sound asleep, he had 5 or 6 more episodes of severe retching. Every time he would desat, and I would hold my breath, praying he didn't just have a huge aspiration. Then he would slowly come back up again. Finally, after zofran, I stopped his feeds and started pedialyte. His heartrate was sky high, even after he fell back to sleep. I had a strong feeling we were heading to the ER. After I started the pedialyte, he finally slept ok. He woke up this morning ok. Sats were a tad lower than normal, again, I think microaspiration. He just doesn't have anything in his stomach to have a big aspiration. Since he didn't have any big retching episodes, I started his feeds normally. He has been ok today.

What the heck?? Why was he retching so much, and now is fine? He is making me crazy! And now, instead of not sleeping, he is sleeping constantly! Only a couple hours after waking up, he was back to sleep. He woke up, and has only been up for a couple hours again.
My ped wants me to do a big enema, he thinks he is backed up. He also says GI needs to get to the bottom of the not pooping issue. That using suppositories makes them dependent.
Well duh! I knew that, but he has to poop, and since he doesn't, I have to make him go somehow!
The only good news is I got into the keto diet team on the 6th of March. I wasn't expecting it to be so soon. I still haven't heard of an admit date for the VEEG. I'm hoping that since his keto appointment is so soon, maybe we can just do the admits together, and try to get these seizures under control!
Since things happen in 3's, here's a couple more.
I took Carter in to the ped. In the past few months, he has gained a huge amount of weight. This is in my son that plays sports, and is outside playing every second of every day. I have a feeling something else is causing the gain. He weighed 83, and just two months ago he weighed 72. From October, when he weighed 67, and was in the 50% percentile, to February, where he's now in the 85% percentile. That is a huge jump! She ordered tons of bloodwork, including thyroid tests. I'm praying something shows up, because there is no other reason he has gained this much weight!

We've also noticed that Arina seems to limp a little, mostly in her right leg, when she walks. I've also noticed that sometimes when she falls on her leg funny, she cries in pain. Usually, again, the right leg. I'm wondering if she has hip dysplasia, and her hip is popping in and out. I have zero experience with this, so I'm thinking a trip to the ped is in order for her also!

Whew, I need things to calm down a bit around here so I can breathe!
Until then, some more pics of our San Diego trip.

quicky but goody

Quick post, its been super busy around here. We went to San Diego for the weekend, to use our free passes from GKTW.

It was a hard weekend because Jax is not sleeping at all. I was emailing the neuro from the San Diego zoo, to try and get a different sleep med called in. We are trying ambien, but I'm not sure if he's having adverse reactions to it. One night he still woke up at 4:30, this morning he slept until 7. But when I first give it, about 5 minutes after, its like it sends him into a seizure. He seizes for quite a while! One time I thought he was asleep, only to find him wide awake, seizing!

He was super junky all weekend. He hasn't been able to go without robinol almost since we moved! It can almost ruin a fun outing when you are constantly suctioning.

Today he had a huge retching spell and I know he aspirated. He went white as a ghost and passed out in sleep. Classic Jax small aspiration. I'm tired of docs not listening to me, its beyond frustrating!

It was just a reminder of the life we will always have with Jax. Sometimes I think it sucks so bad, and then I get pictures like this, and remember how much I love this little man, and how I can't live without him!

His cheetah growl!

To be continued....

My new "thing"

I have a new "thing" that I have fallen in love with!

Cloth diapers!

I know, its nothing new, but its new to me! I always remember people talking about it, but never wanted to add pooper scooper to my already busy routine! I was rethinking cloth, because Jax gets really deep, red lines on his thighs from diapers, and a couple weeks ago I had an epiphany! Jaxson doesn't poop! He poops once a night when I give him his enema. So why in the world have I not been using cloth on him?

So I bought 4 Fuzzibunz cloth diapers, and decided to give it a go.

The size of these diapers are a bit small, they don't go up high enough, so they do leak if he's been given his diuretic. We do need to go up a size, but I'm hooked!

I mean, look how snazzy he looks! (and notice the little stinker in the corner that thinks every picture should involve her!)

Have you seen a cuter tushy?

The best part, his inner thighs aren't screaming anymore! These diapers are super soft! No red marks here!

Cloth diapers are definitely expensive to start, but I love that I won't have to buy disposables any more. I'll use disposables to give Jax his enema, but thats it.

I'm now considering using cloth for Arina! I've been to a couple Facebook pages and bought some diapers there for cheap.

We'll see how it goes with her, I'm still not so sure about the poop clean up!

But its amazing when you think of how much waste goes to the dump from diapers alone! A whole heck of a lot!

I'm feeling pretty environmentally savvy right now.

And the best part... we have one happy warrior boy!

Princess hairdo's

Its a good thing daddy stayed with his sister while in Utah! I can't imagine what daddy's hairdo would have looked like.

My sister in law and my niece had such fun with my princess!

Seizures still suck!

All of Jax appointments with his new specialists are exhausting days! Since they don't know him, we have to go through his whole history, which takes forever by itself! It takes us about an hour and a half to get there, and at least two hours coming home, depending on the traffic!

Our neuro appointment was no different. I told him my concerns about these seizures and how more frequent they are getting. He mentioned there was meds that we haven't even tried yet. My neuro in Utah told me there was some more also. He wasn't willing to try them because they are super strong, and with Jax already fragile health, he felt the risk was too great. I told him I prefer to restart the diet, and if it doesn't help, then I'm willing to try a different med. I much prefer the diet to something that could be dangerous to my son.

So here's the plan. He upped one of the meds he's already on, because he wasn't on the max dose. I'm not holding my breath that its going to make any difference. I honestly think we could probably stop all three of his seizure meds and we wouldn't see a change. He wants a 24 hour EEG. I wait for the hospital to call me with the admission day for that. He also talked to the ketogenic diet team to get the labs they need before we start. That will make the process go faster so we don't have to make a whole other appointment with that team. The doc and the attending both agree that we need to get these under control before we get to another bad place. He performed for them by having a seizure in the clinic.

He also gave me a prescription for diastat in case we have a seizure longer than 5 minutes. I forgot to ask for a better sleeping med, so I emailed him today. I'm not too worried about a med that is a respiratory depressant, because he is on life support when he sleeps anyway!

We spent another 2 hours in the lab. They needed gallons of blood! We had orders for GI labs as well, that we were holding onto so we didn't have to poke twice. Well they poked 3 times, and still didn't get every tube filled.

When they finally managed to get a tiny vein, it took a lot of milking to get all the blood they needed. His arm was so purple it was almost black. I was really concerned that they were going to do permanent damage to his arm!

Look at the aftermath!


I documented this because I'm taking it back to our ped and demanding a port. This is ridiculous!

Mondo is super sick, on day 4 of fevers and a nasty cough. I'm really just praying somehow Jax doesn't get it.

Also daddy and my other two babies come home tomorrow. I miss my princess so bad! She's never been away from me before!! Tomorrow can't come fast enough!

To say things have been crazy around here would be an understatement!

I've been going into Los Angeles a couple times a week for all of Jax appointments. Ray just left today for Utah. His mom is in the hospital, and they think she had a stroke. So he took Tanner and Arina with him. Mondo was going to go, but woke up with a fever and cough, so he stayed home. I just hope he doesn't get Jax sick. I fear the yuckiness that has been plaguing all of our friends may have finally made its way into our house!

Carter had baseball tryouts. We've been thinking for the last couple years that he is being jipped big time, because he never makes all stars, when the coaches "not so good" kids do. Well now we know for sure that its true! He rocked the tryouts! The kid hasn't even picked up a baseball in 6 months, and he had the coaches fighting over him. They want him to play in the Majors, which is 11 and 12 year olds. He is 9! I'm not so sure about it. I know he can play with that age, because he played with 11 year olds last year. I just don't want him to again miss out on all stars because he is the smallest, youngest kid on the team! We'll see how it goes!

Jax seizures are giving this momma a run for her money. I'm just relieved that his neuro appointment is tomorrow. He is having tons of seizures, which means he is not sleeping. He'll take a 3-4 our nap during the day, and is up multiple times during the night. Trazadone is no longer working to keep him asleep because of the seizures. I need something stronger! This appointment will probably bring on an admission. He needs to start the ketogenic diet ASAP. The diet has to be started in the hospital because their glucose can drop super low as their body goes into ketosis. I'm anxious to get this started, because we all know how bad it was last time this type of seizure got out of control!

Along with the craziness is the fun. The boys have been really great lately. They have their days, where they can't leave each other alone! Mondo's teenager-ness seems to be calming down. Either that or I'm just getting used to having a teenager! Every time I take Carter with me I get compliments on what a sweet boy and great helper he is. Just today in Babies R Us when he took the stroller that I was carrying and carried it for me. There was a lady on our isle that said he was such a great kid.

We took Mondo to an airplane museum, where they had an actual pilot that flew with the Red Tails in World War ii. The movie Red Tails about their life just came out a few weeks ago.

Mondo has been a military geek ever since he could walk. I have come to terms with the fact that I have a child that will be in the military. As scary as it is, it also makes me proud! He will be a lifer. He's not in it for the education, but the love of all things military. He is a history buff and World War ii is his specialty. Me and Ray want to take him to Pearl Harbor for graduation.

He was in military heaven!




Don't forget to vote for Arina for the most beautiful baby contest. Click on the second question, and click next to Arina's name!

Arina's new boyfriend!

First of all, before you go any farther, click here and go vote for Arina for the most beautiful baby. Click on the second question, and it will bring up the baby names. Just click on Arina's name!

Go on, we'll wait....done? Ok, now you may continue!

Yesterday was truly an amazing day. We went to Disneyland, and finally took Arina and Jax to see the Disney Junior show. We sat right behind a lady and a Down syndrome boy. When the lady noticed Arina, of course she just went nuts! We started talking, his name is Jonathon, and the lady was actually his sister. She cares for him now that his parents are gone.

The best thing, she didn't just care for him because he is her brother and its her job to take care of him. She truly loves being his caregiver, and she told me they come to Disneyland a couple days a week! Everyone at Disneyland knows them, which is how I think it will become for us. There are a few people that already know us!

Jay has a lot of medical problems, and doesn't have much speech, but the way he interacted with Arina was just too cute. He kept saying baby, and kept giving her kisses. Then he would try to pinky swear with her, because that's his sign for best friends! We exchanged facebook pages, so we can stay in touch, and I'm in love with this sweet boy!

So our kids aren't contributing to society?? Is life all about how much money you can make, and who has the bigger car or best job? I beg to differ. Its about friends, family, and how much fun you can have! We would have never met had it not been for Down syndrome!

Now how cute are these two?

Queen of destruction!

*To anonymous that just left the comment. I know what you mean! Even as the mom of two special needs children, sometimes I even offend people! Everyone is so different in what they see as mean. Even if someone said something to me that I didn't really like, unless it was blatantly mean, I just smile and ignore it! But I know what you are saying my friend!*

I think our princess has graduated from that title to queen! In all areas. We call her the queen of destruction, and also the queen of cuteness. This girl is a serious crack up! I really need to get that video camera charged!

See that smile? That's my, "I'm to cute to get in trouble for dumping all these extra supplies out on the floor!"

She love's my closet mirror in my bathroom. She thinks that cute girl staring back at her is such fun!

Cheese!
Who's got the bigger budha belly?

Oh, she's still looking at me!

We had Jaxson's cardiology appointment Wednesday. Man it was the longest day yet! Since she's never seen him, she wanted EVERYTHING! X-ray, echo, EKG, you name it! She was fantastic. But again, I searched for a good cardiologist, so I knew she would be great.

The best news, his echo looks the best it has in a long time! Still shows his VSD, his heart is still enlarged, but....drumroll please! His pressures are near normal!!

Not even kidding, moving to sea level has not only helped his saturations, but his overall heart function.

She did agree with me that its obvious that he still doesn't get good venous return to his heart, because his upper body is still puffy compared to his skinny legs. Also his EKG still show right ventricular hypertrophy, but that's expected in a kid with as many pressure problems as he's had. She didn't like when I told her how the slightest thing causes such heart failure, requiring IV heart medications to keep his heart pumping like it should and keep his blood pressure up. She doesn't want to wait 6 months to see him again, so we go back in 3 months. Overall I couldn't have asked for better news at this appointment!

I guess he's really chillaxin!!