Life's little things!

We are keeping busy around here with life's little things. Baseball games, running kids here and there, and playing when we can. All the things that make life worthwhile.

I can't wait for summer, we've been waiting a long time to do beach Friday with the Needham boys! As busy as it is, I'm loving every minute of it.





Princess Arina is the most amazing little person. I was thinking the other day, as she was sitting on my lap watching tv, its hard to imagine that she doesn't have a single ounce of Ray's and my DNA. And really, how that doesn't matter at all. She fits perfectly in our family, nestled at the bottom of 4 big, and very protective brothers. Its hard to imagine our life without her, and we love her so very much.

After the start she had, being abandoned, and left to rot in an orphanage, she is turning into this amazing little girl. I think her extra chromosome makes her all the more perfect. Maybe it's because she still accomplishes what every other child can, but it takes a little more work. Maybe it's because she'll never know hate. In my opinion, she is what this world should strive to be more like! Stop looking at what other people are wearing, or what car they are driving, and just love everyone for the individuals that they are!

Yep, life doesn't get much better than this!

Comfort over care

Finally some answers after the hospital stay last week that gave some very interesting news about Jaxson's brain and his EEG.

I immediately emailed the head of neurology, who also happens to specialize in intractable epilepsy, what Jax was diagnosed with in Utah.

He was amazing! He emailed me back within an hour and said he was going to look at his records, talk with the docs that were there, and call me. The next day, we had a nice, long conversation. He really is a fantastic doctor, and took time to explain everything to me.

He does agree with the diagnosis of intractable epilepsy. But the rest of the news is not so great. Because his brain is in chaos, but not specific seizure activity, there is no good way to treat it. He said in a "normal" child, that was regressing in development because of this, they would try some big gun meds. But because Jax already has very little development, and because of his fragile heart and lungs, they wouldn't even consider these drugs. He said with Jax we have to think of comfort over care. Something I already do with him. But when he said that, it just confirmed to me that we should have stayed on track with restarting the diet.

I emailed the keto NP to tell her my regrets with stopping it, and that I indeed wanted to restart it. She tried to tell me that the diet has risks of its own, which include kidney stones, and liver problems. I reminded her that my son was on this diet for 3 years without a single side effect besides high cholesterol. And since I know my son is not going to live to be 60, not even 30, I'm not concerned with high cholesterol. The drugs that he is on, and the ones we have yet to try, have much worse side effects. He did so much better on the diet. He did not have these seizure like episodes, he slept all night long most of the time. All of these started after the diet was stopped. She agreed that we can shoot for June to try again.

The other interesting thing is I still haven't gotten to talk to his old neuro. I talked to his nurse twice, but he has yet to call me himself. This tells me that he is being a coward, which is really sad because I liked him a lot! His nurse tried to tell me that EEG's can change. To which I replied that the docs here looked at old EEG's, and they are just like the one last week.

The only other thing she suggested was getting copies of all of his EEG's, which I had already planned on doing.

It doesn't matter, what's done is done, and we can only concentrate from here on out. I can't beat myself up anymore about agreeing to stop the diet. The brain can only handle so much stressful information at one time!

We'll get my big boy back on track, hopefully soon!

My fetish

Most women have a shoe or purse fetish. I have a swimsuit fetish!

I just bought this little beauty today. This is swimsuit number 3 this year already!

Hey, I actually think I have a lot of self control. There were at least 5 I wanted at the Disney store, but I walked out with only one!

I would have thought my fetish was anything frilly and pink, because of my excitement in having a little girl. But I realize now its swimsuits.

But I think Arina is A ok with this fetish!

Swing update

The great swing debate continues!

Let me say this city council member has been fantastic! After he emailed us saying they were going to table the idea for now, he kept doing research, and we got another email the other day.

this email said that the Eastvale, which is within our city of Corona, does indeed have a park with one of these swings! The greatest news is this is exactly where we are moving, and is where we plan to buy our house next year! Its a very new neighborhood, with lots of parks, and brand new schools. Its very suburban, and we love it. We have yet to go to this park and see if in fact there is a swing there, we've just been too crazy with Jax hospital visit and family activities.

The member also said that he has placed a call to West Jordan, the city in Utah with the swing, to see how they got it and how they work the seat belt issue. I would still like to see another swing in the part of town we are in now. I know there are other children here that will benefit from it. I'm glad that a government official is actually taking the time to help us. Its not like this swing is more expensive than the other fancy equipment in the parks. Like Ray said, if even one child can benefit, there is a need!

Ready for summer

Someone is ready for summer! I'll have to remember to take her swimsuit next time!

Home

Jaxson and I are home.

Home about 4 days earlier than expected.

Why?

We got some VERY unexpected news.

As a matter of fact, I'm still working on picking my jaw up off the floor.

We finished the EEG, stopped the diet, and came home.

All of those episodes that Jax is having. The episodes that sometimes cause his heartrate to drop, are NOT seizures.

That's right, during the whole 24 hours, there was not a single seizure in his EEG. Now, you'd think this is great news, no seizures. Its not so great. Jax brain is in total chaos. It's misfiring, and sending crazy electrical currents everywhere. Very typical of brain injury kids. But not a single one is classified as a seizure. That means the diet is not going to help, and meds are not going to help. Did he have regular seizures in the past? Yes, so we need to be really careful about playing with his meds. The really bad news is these episodes are neurological, and the not sleeping is neurological, but non of it is going to be fixed by seizure meds.

That means all of the EEG's from the old hospital, at least the ones UCLA was able to pull up, were read WRONG!! They all say that he is having constant seizure activity, a non convulsive status all the time. UCLA said all of the EEG's from the last 3 years, look the same as yesterdays. Not a single seizure. That also means the surgery for his VNS last year was totally unnecessary. Its not having an effect on his brain at all.

Jaxson and I feel the same way about this news.

I don't know what to think. All I know is that UCLA is a top rated neurology team. People travel here from all over the country to see their doctors and get answers. That is one reason I wanted Jax seen there.

I think I'm still in shock a little bit. I put a phone call into our old neuro. I want to give him a chance to explain what happened. I also want all of Jax EEG's since birth sent to UCLA to be read. Not just the report, but the actual video EEG.

For now neuro wants to wean at least one of his seizure meds. Phenobarb will be the one. We will wean extremely slow, he actually won't be off until August. But this is one of the stronger meds, and we'll keep our fingers crossed that off this med, Jax may gain a tiny bit of development.

We have a follow up neuro appointment next month. I will get a list of my questions together, as I get a chance to clear my brain a little bit.

One question I already have is why did these episodes start back up after stopping the diet? And the episodes, and the not sleeping, have slowly gotten worse in the last year since stopping. Could the diet of helped, even if they weren't considered actual seizures? Could it have still been having effect on some of the chaos in his brain? I really hope they can answer some of our questions!

Oh, and I have no idea why the font randomly changes in my posts?

Ready to go

We are settled in to the PICU at UCLA. So far so good. Everyone has been fabulous and fast. His EEG is on and the first little bits of the diet are running into his gut. They will start with a very small amount of ketocal mixed with his Peptamen, and slowly increase to full ketocal. They will check his glucose every 6 hours and increase that if his sugar starts to drop. One new thing we've noticed is that he drops his heartrate with these seizures. Everytime I see a seizure and push the button, his low heartrate monitor goes off. Not scary low, but a big enough drop to make his alarm go off! An interesting new find!
The only problem is the room is tiny with a bed that when I pull it out, is right on top of his bed. No bathroom, and definitely no privacy! I never stayed overnight with him in the PICU in Utah, because it wasn't allowed. But being in a new place, that I don't know, I don't really want to leave him. Especially since my commute can be two hours or more with traffic. At this point I haven't decided what to do yet.
I'll be posting from the iPad so all pictures are iPad camera pics!

How was your Easter?

How was your Easter?

With the exception of more than normal seizures, ours was pretty close to perfect!

Trying to eat the egg right out of the dye!












I'm the luckiest momma in the world!

Jaxson goes inpatient tomorrow. Anxious to get it going. Prayers are greatly appreciated!

There will always be a fight!

There are some days when you wonder if you should just give up the fight.

You sit back and realize, there will always be a fight, there will never be a day when my children will be totally treated as equal human beings.

But I have to keep fighting, each and every day, because a little boy depends on me. He depends on me not only for his total care and medical care, but his happiness, and his equality.

When we moved to Corona, we noticed that there is a park on every corner. It is very family oriented. We loved that immediately. What we didn't love, however, is that not a single park has a handicap swing.

Jaxson loves to swing, but he can not swing on a typical park swing like his little sister can.

There is just no way around it. No way to rig it to fit him. Jaxson has zero neck and zero trunk control. He needs a swing that will support his whole body.

At Carters opening ceremonies for baseball, Ray bumped into a city council member. A city council member that happened to be over the parks!

What a stroke of luck. He asked the member why no park has a handicap swing. Of course he had no idea. He got all of Ray's info, and asked him to send a picture of the swing. They talked back and forth. The member was fantastic, he stuck to his word, said they were looking up prices, and asked which park would be best to put it.

And then, of course, the ball dropped.

He emailed Ray and said that they were going to table the idea for now. That they were worried about vandalism, and wanted us to find other people that would benefit from the swing.

The only reason I can think of this swing having more vandalism, is because it has a seatbelt. In Utah, they keep the seat belts at city hall. You can either buy one, or rent one for the day. It works out great. I don't need a seat belt for Jax, he isn't going to jump out of the swing, but I'm sure other people will.

I'm very upset, sometimes I feel the only way it will work is if we buy a swing for our own backyard. I'm not even sure if it will fit on a typical swing set. But my son deserves a swing. He has a right to have fun just as any other kid does!

So for that reason, we keep fighting. We will stay on the city until at least one park has a handicap swing. We will start our search for other families in our city that have children that would benefit from a handicap swing.

We will prevail, we have to! Our children depend on us!

The fun of a girl!

I know I've said it a million times, and I'll say it a million more.

Having a little girl is SO much fun!

Remember, I've waited 13 years to have a girl, and I tend to go a little crazy in the girl department, specifically clothes. She usually has 3 or 4 swimsuits every year. This year I've already bought two, and I'm sure I'll find a couple more we can't live without!

Last weekend at Costco, I found the cutest Minnie swimsuit, I had to have it.

After all, look how cute!

And no one can resist a ruffle bum!!

Her other new thing, beads! We saw another little girl at the store with some, and we had to have some as well!

She loves to put them around her neck and shake her whole body so they swing around!

Now if I can get my so cute, so naughty two year old to actually sit still long enough to take a cute, in focus picture!