Happy Birthday Max...

6 amazing years, with the most incredible boy I know. Happiest of birthdays my son...the most wild thing of all...

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Monsters...

Got a visit from our littlest monster today. She played and took the doggie for TWO walks, and hugged and snuggled her big cousin.

After her nap this afternoon, she wanted to join in the snuggle in Auntie's chair, where she and Max giggled and played for quite a while.



Before they left, we found a last minute costume for Addie, so she can look extra silly for her cousin's birthday tomorrow!



Addie...say cheese!!!!




CHEEEEEEEEEEESE!!!!!!


I remember another little monster in this costume...for his first birthday...

Pumpkin man...

We've had a fun day! Baby Adeline and Angie came over for a visit before the big snow storm blasted through. Addie was having fun pulling everything out of any and all closed drawers and cabinets, so I set up her own little kitchen to play with.

It kept her occupied for 5 minutes. ;) She really was cute playing with it. She even fed Max a few times with her imaginary foods. Here's a video of her stirring her food.


Here's another one of her playing...she has such a fun little personality!


After they headed home, I got a video of Max playing with me. He usually peps up once little one leaves. He wasn't too talkative in this one, but playing all the same.


Shortly after I took that video, I went to take Olive outside, and it was blowing like crazy. About an hour later we had snow. And right before I went to bed we had this...


It's supposed to snow until Thursday night. Oy! It's really going to add up out there if it keeps coming down this fast! I just hope it doesn't affect Steve's flight on Friday.

Maybe I'll have to make a snow-pumpkin-man for Halloween this year!

House motto...we hate seizures!!!

A week has passed since we made it home. And what a week it has been.

Max's first couple of days home from the hospital were really great. He slept all night, and played all day. But on last Wednesday night, his seizures started up again.

We made an appointment for an EEG to see if maybe something new was happening in his brain that we just weren't figuring out. We went in Friday morning for the EEG, and Friday afternoon his neurologist called with the results.

The night before, Max had had four seizures, and he really expected to see a poor reading on the EEG. But in fact, he said it was one of the best looking EEG's Max has ever had. (And boy has he had a lot of EEG's!)

He said the background EEG showed little to no spiking...that's neuro talk for no quiet seizure activity going on. And that he saw no signs of the lennox gastaut syndrome, that he was concerned the infantile spasms could be turning into.

I've also had to email him to clarify this bit, but there was a number of measurement that can help show them the level of development in the brain, based on the background noise. He said that this measurement by age 8 should be around an 8 in a typically developing brain. Max was at a 7.

So all this to say...neurologically, he is doing...much much better than we thought we would find after all the seizures he has had lately. These are not affecting his sleep, they are not affecting his development, they are not affecting his health.

They are just wearing me smooth out!

We have thought for a couple of years now that stress and too much change can cause Max to get into a bout of seizures. I think we're in one of those times right now. Steve has been traveling quite a lot lately, and Max doesn't like it.

We're really trying to make an effort to remind him when Steve will be home. Let him call him, and he's sleeping in Daddy's bed tonight. (I'm just a side fixture!)

This Saturday is his birthday, and I'm trying to think of something fun to do. We're supposed to be getting snow for a good part of this week, but then maybe it will be sunny and nice and we can go to the park, or I found a beach at a reservoir not too far from us. It would be a place he could kick his feet in the sand...that is if it isn't covered in snow!!

I'm having a hard time getting too far into any planning, because we just can't go anywhere where there are crowds, we can't have a bunch of friends and family over for dinner. We just have to keep it low key for multiple reasons. He's been having such a weird couple of weeks with the seizures, and he is still at a higher risk than the rest of us for catching H1N1.

I still wish we could just have some corporate jet pick us up and zoom us off to the ocean like I wanted to do for his birthday. He was really excited about it...or maybe I was really excited about it. I don't know if he's understanding that we're not going to California for his birthday. I've been telling him for over a month now that it's what we're doing for his birthday, and now we're not. Blagh! See what I get for making plans!

I think we'll figure it out, and in the end, he won't care what we do. I just want it to be a special day to celebrate the life of such a special boy. Who is, by the way, asleep now. And since I only got 4 hours of snooze time last night, I just might have to join him now!

Head'em up...Move'em out...

Quick note to say we should be heading home soon. We had to rattle some cages and do some major coordination of departments to get everyone on the same page, but we got across to them and we'll be discharged this afternoon.

Max is doing loads better, tolerating his medicine fine, and so hungry! I've been up since 3:00...and I am so tired.

I wanted to say a big thank you to all of Max's friends around the world that sent him a special hospital card. We got them just a bit ago, and the volunteer that delivered them told us that Max was the most popular kid in the hospital! ;) They are each and every one very special to us! Thank you!

Steve caught this photo of our giant boy snoozing in the sunshine...

Holding down the 8th floor...

We have entered into a surprise visit to The Children's Hospital. Max is not sick, that we know of. He has no fever, no infections have shown up on the cultures, no sneezing or coughing.

He woke us up at around 3:00am today with a wretch, that made us fly out of our bed to him. He continued with that wretching, and then added on seizures for the rest of the morning.

Early morning, around 7:30, we gave him his Diastat to stop the seizures. It worked, and stopped the vomiting. I got back into bed for a couple of hours since he was knocked out. I woke up to him wretching again.

That's when he started in with the wretch, then seizure, every 2 minutes. He didn't keep his food down, didn't keep his medicine down, and didn't keep his special "sick" liquid mixture down. (It's basically sugars and water)

Between Max's neurologist, and his metabolic doctors, we were in the car and on our way to the Emergency Department around 1:00pm.

We met my sister here so she could watch after Abbey with us while we took Max in. Abbey was due to be at the airport in another hour and a half. So we had all her stuff with us too.

Steve carried Max in, and "thankfully" Max was having a seizure, because that got us into a trauma room right away...away from all the flu ridden people in the waiting room!

They cut his shirt right up the middle ((frustrating)) and started sticking him anywhere a vein could be found. Steve helped with that part, I started getting his emergency letters and medication lists out, while talking to the doctors.

After his oxygen stats dropped because he was seizing so much, they pushed in a heavy duty drug, ativan, to stop the seizures. It knocks him smooth out. In fact, as I type this, it is almost 5 hours later and he's still sleeping it off.

They've got him on IV fluids, and monitoring him overnight. I have no idea if he's over it because they've got him snowed under so much. We haven't had one of these episodes in almost 2 years. Metabolically he is absolutely stable. Which is fantastic. There is always a risk of him getting sick because the seizures make it so he can't keep his food in.

Steve is off getting our first meal of the day...then we'll figure out what to do with little Olive...who is probably doing circles in the bed right now!

I'll keep you updated as we know more. I'm pretty exhausted right now, and I don't feel like my mind is making the sense it should, so I'll stop writing for now. Thank you for all your prayers and support.

If you want to send Max a get well card, you can go here: Cheer Cards from The Children's Hospital

Bundled up...

I do love this little boy...


We had a cold snap this weekend, and we had to dig out the hats and gloves. And for the first time since buying this almost 5 1/2 years ago, this hat fits. I got it from a little store in California when we went for his first vacation at 4 months old. Just a week before he was diagnosed.

It's ridiculously cute...or maybe it's him that makes it so cute.

Hand-me-downs...

Baby cousin came over to play today. She's an absolute fireball. So much energy...and fun! When I sent Ang to get dinner, she was ready to run wild. But Max was feeling a little sleepy. So I did what any Auntie in this situation would do. I gave her my phone and turned on Ratatouille.

Since Max was up in Mommy's big chair, little one climbed right up into Max's chair. And I took pictures.



Addie giving me the skunk eye...


Big fish...little fish...


She loves Auntie's phone...I'm still hoping she'll break it. (kidding kidding...only kinda)


On this shot I was trying to get her AWESOME outfit. She got here and caressed her half eaten pear for a good while, leaving her shirt a mess. So, we went through Max's old clothes to try to find a shirt to put on her. We found his tattoo "Mom" shirt. We also found his old furry boots...which she loves. I can't believe these things fit her!!



I was so glad to spend the whole day with them both! It made a quiet Friday fly by!!

Old chair New chair...

I brought my chair downstairs today. Actually, Steve brought it downstairs, because it is heavy.

I've been trying my hardest to tolerate my Ikea chair...but really...when Max is in his chair, I need to be right by him. And that means I would like to be comfortable while sitting.

My chair is so so so special to me. My Grandmama's baby gift to me was to buy me a rocking chair. When I had Max and it was so difficult to feed him, I knew I would need a comfy rocking chair. Steve and I found this blue leather recliner at Foley's.

We got it home, and it was where Max and I lived the first 5 years of his life. He ate every meal there, I ate almost every meal there. I rocked him when he was at his weakest moments...and practiced sitting him up when he was feeling extra big and strong.

Max on his first birthday...he was a sick little guy here...


Max 2006 chillin' in the blue chair...


Max and Abbey using the blue chair to get in a snuggle...


At some point in all of our moving last year, the blue chair went to live with my sister. She was about to have her own baby, and Grandmama wasn't around anymore to get her a chair to rock her little one in.

This year, it made it back to me. And it's been up in the guest-room since we moved into this house. I've been holding out for just the right chair to replace it. I don't have to hold Max to feed him anymore. And it's not the most glamorous piece of furniture I own. But today, it made it back down to it's rightful place.

And so did Max.



He's grown since the last time he sat in it...


But he got right back into it...


Looks like Goldilocks found his chair that's just right...

Meeting the Moms...

Yesterday, I got out by myself for a breakfast meet-up with mom's who have children with similar diseases to Max. They all fall under a category called Organic Acidemias. Two of the mom's live here in Colorado, and we've meant to get together all summer, and one lives in South Dakota, here on business.

We chatted and laughed and gabbed for a couple of hours. It was great! We talked about our kids, and there was so little explaining. Even amongst friends with special needs kids, Max's disease is so rare that there is explaining that has to be done to new friends. Heck...even to family there is explaining to be done every time.

So to sit down and start rambling about our kids medicine, and formula, and blood levels, and just knowing immediately, it was so comforting. Plus they are all quality people...and we had a great time.

Towards the end of our meeting though, one of the moms says, okay let's see the pictures. I was totally taken aback. I only had one measly photo of Max on my cell phone, and one of Abbey. In my lame defense, I usually have more on my ipod touch, but this was the first time ever that I was with people who would want to see Max, that I didn't have a picture of him. Not because I usually carry photos around of him...but because he is ALWAYS with me.

I thought it was crazy that I didn't have a picture of him, but then again...it's crazy that this is the first time I've done an outing like this. I understand that mom's get out and have their "girl's nights", they may talk about their kids and have fun just the same. The closest I've come to that was a movie and dinner with a friend...who already knows Max inside and out...his old occupational therapist!!

I hope it is the first of many visits together...and next time...I'll remember the photos...or maybe I'll just bring MAX!!! ;)