Just call me Dagwood...

Yesterday I got a taste for a sandwich...but I didn't have all I needed for this sandwich. So last night I went to the store and picked up what I would need to build the ultimate sandwich and made it for lunch!



That's sourdough bread, mayo, lettuce, tomato, cranberry sauce, swiss cheese, sprouts, turkey and bacon.



I ate it with Balsamic and Rosemary Crisps! Oh man oh man oh MAN was it good!

I'm currently feeding Max a bottle, blogging, and watching an Anthony Bourdain episode on Saudi Arabia(Loving it!)...I am the QUEEN of multi-tasking! Once Max eats, I will start folding clothes and putting them away in our wardrobe shelfs we got last weekend.

Better get to it!

I don't have a title...

First...let me say this...my legs hurt like nobodies business tonight! Like I've been on a hike up and down the mountains! I have no idea why they hurt so bad...but I took some medicine, and I'm mostly just hoping it is sympathy pains and that Ang will be going into labor at any moment. Hoping...just hoping! (Don't start driving mom!)

Second...I met Sally last night! Yippeeee! She was very........Sally! We had great conversation, and yummy dinners! Now we'll just have to do this more!

Here's the only picture that came out okay...it's still a little blurry...


And Third...I am really glad to be back home. Abbey went back to Tulsa on Friday. We did a few things this weekend, nothing fancy. Yesterday we had the upper GI for Max. He swallowed the junk like a champ, and sure enough...he's got a stomach...we've got the pictures to prove it now! Seriously though, his anatomy is all where it should be, things moved through perfectly when he swallowed, and there was no reflux, so that means we won't have to do the extra surgery to make a nissen wrap to stop reflux.

I've been having fun getting out and about in my car. Today Max, Olive, and I got out and went to get some of Max's medicines. I drove all around...skipping off the main road a couple of times to wander around neighborhoods looking at houses. All the while making a mental note that I knew exactly how to get back to where I needed to be. I am glad to be back home!

He has an EEG in the morning, which I will need to try to wake him up early for, so he's grumpy and tired for the test! He never sleeps for the EEG tests, and he's supposed to. At least he's consistent!

Luckily, that's all for this week. Next week, we don't have anything until Friday. But Steve will be out of town for a day next week. And since it's the last week of the month, I am sure hoping that someone wants to look at our rental in California and rent that!!!

Max is asleep, and I guess I should head there soon too.

Peek a boooo!!!

How about some cute pictures of Max?

You can't quite see it in this one, but he is peeking at me through his fingers. He was ready for bed, and I wasn't ready to turn the light out.



But he got creative and turned them out himself...


And yes, that is a hand towel he is hugging. I had it to wipe his itchy face and he grabbed it for his very own, so off to bed it went with him!

Today was a full day. Abbey is back in OK. It wasn't a rocky good-bye. That was helpful for everyone. But I do miss her already. It was a really great summer with her.

Part of our day today was doing paper work on This...we chose Galaxy Grey.

It's the same car we sold before coming back from England...and getting the volvo to drive to CA. Max outgrew the volvo WAAAAY faster than we thought. So getting back here we knew we needed to get something a bit bigger. I really loved driving our last Mazda 5, and there is still plenty of room for him. We are looking into lift systems or special seats that will come out to allow us to put him in a bit easier. The deciding factor for me was the other day when I went to put him in the car and I couldn't figure out a way to get him in without dropping him, or breaking an arm. Good thing Steve was there to take him for me.

So I reckon this weekend we'll go zoom zooming around Denver!

Why a G-Tube???

Some may be wondering why we're moving on to the feeding tube. He still eats by mouth, so why put a tube in his stomach to feed him?

On any given feeding it can take anywhere from 10 minutes to an hour and a half for him to eat a 6 oz. bottle. It is likely Max will ALWAYS need formula. It is the best way for the doctors to monitor the amount of protein he gets.
This morning it took me about an hour and a half to get his first bottle in. He just wasn't in the mood to eat. We started at 9:00 and it was almost 10:45 when he finally finished.
Because he was more into sleeping this morning, than fighting, I got some pictures of the process through my computer camera.

As you can see, he was nowhere near interested in eating. He HAS to eat morning bottles because his appetite is the best in the morning. As of 3:15 today, he's only had 2 cans. I don't think we'll get more than a couple more in.

As he gets bigger, he will need more protein, but it will always need to be closely monitored, as his body doesn't know how to break down proteins properly, but we all need protein to survive.

Right now, the doctors would like to see him getting 5 cans of formula a day, plus any solids we can get in. He fights me with 3 cans a day, and ONLY wants solids. By fights me, I mean he literally bucks up and down throwing his whole body around. He kicks and hits the bottle out of my hand. He spits the formula at me, or just lets it dribble down the corners of his mouth. Most of the time feeding him I am pleading with him to finish the bottle. Most of the time he just gives up and goes to sleep, I think because he knows I won't feed him while he's sleeping, or he's exhausted from all of the fighting.

There has always been the possibility of needing a feeding tube, but up to this past 6 months or so, he has done really well eating for me. Once the increase of fluids and calories came into the picture, we started re-thinking our decision about a g-tube. I've largely been opposed to the idea, because the argument "for" it almost always started with how much EASIER it would make our lives. That was a stupid argument to me. We aren't interested in what is easiest...we want what is best for Max. If given the choice again, we would do it the same way. Eating by mouth for so long has developed him in ways he would have missed out on with the tube doing most of the work.

We came to the decision of the tube, and started asking his doctors about it. They all agreed we had given it a very valiant effort, but Max made the decision for us. Which is what led us to meeting with the surgeon yesterday. He needs to eat more than he does. He needs to learn to eat out of something other than a bottle, and right now he can't practice that without sacrificing the caloric intake. And he needs to start trying new solids, again something we can't do while forcing the fluids all of the time. The tube will allow him these things. He will be able to eat what he wants, while practicing with new utensils to feed him. Cups and forks and fingers!

We will also be able to give him feedings at night, or during the day without his help. He can be playing or sleeping and still being fed. He can receive his medicines without having to taste them every again. And he will get ALL of the dose, instead of it sticking to the bottle, or him spitting it out, or deciding he won't eat it. We will be able to feed him while traveling, either by air or land.

It certainly hasn't been an easy decision to make. But the peace knowing how much better his and our lives will be because he is at this point is worth it. I have a hard time picturing it on him...him having something artificial on him all of the time. Him having a hole in his stomach, that yes, I will see when I have to change the tube out. But we made a deal with him several years back...we'd help him fight as long as he wanted to. This is another step in that fight for his life. Our only goal with Max is to give him the absolute best life he can have for as long as he's with us. That means giving him this tool to help him eat. And it will mean things down the road that may be more difficult of a decision than this one is.

As long as he's still the king of the wild things, and has the roar in him, we'll keep giving him every opportunity to roar his terrible roars! This is just all still a part of the story of Max. What a story...

gtube...

We met with he surgeon today. We will do the surgery on August 12th. They'll keep us for a couple of days to make sure it is all working correctly and we know how to work it okay.

I can't say that I am excited about it...it's something I wished we would never need. But I am ready for it. I am ready for him to get the nutrition he needs and wants. I am ready to stop fighting over every single meal. I am ready to feed him yummy things he wants instead of his formula by a bottle. I am ready to try new foods and try different cups for him to drink out of.

I am not so ready for the "nursing" that goes along with it...yuck! We will be getting a Mic-Key button. http://www.mic-key.com/

I've been watching videos tonight of changing it out every three months or so...and I'm sure i'll get comfortable enough with it...but just tonight it is giving me the heebie jeebies. If you are so inclined, you can search on youtube for g-tube changes, or mic-key button changes.

He will be able to do everything he does now...might take him a while to get comfortable with it, but he will get used to it, just as we will. And I do know it is the right thing for him now. I just have to keep reminding myself that and we'll get through this new part of life just fine!

Running on Empty...

It has been a really hard day to keep my eyes open. But I have got a lot done!

Called Max's case worker with the county, and they reinstated him right away. This will pay for diapers, medicine co-pays, and dr co-pays! One phone call! Of course we have a history there, so that helped a ton.

Then called to get him set up for a pediatrician visit, they'll call back by the 29th to schedule. Also called metabolic docs to ask them to write the script for his therapy since we don't have a pcp yet here. Once that's faxed in, therapy will start back up.

I also called on medicine refills, since we have to take in all of his prescriptions in their original bottles to the surgery appointment tomorrow. I am thinking so they know what kinds of meds will go in the tubing. Just a guess though.

I did all of this on no caffeine...but a big ol' honking brownie and a Dr. P sound pretty good!

Go to SLEEP!!!!!

It is nearly 4:00am...and I have yet to sleep.

Max has been awake and talking for the whole stinking night. He'll doze off just long enough for me to think I can too...then he wakes right back up, talking at the absolute top of his voice.

How can he still be so not tired? Better yet, how can everyone else sleep through it? I am going to be absolutely useless tomorrow...I hate nights like this.

He wants me to be laying right by him...but not touching him...and if I get up and go to my own bed, he starts fussing...then I go back to his bed where he is mr. smiley and talking again.

I keep telling him this is not a funny game, and he says it's "good", I don't agree. It doesn't help either that we are in one room together, with Abbey in the conjoining game room sleeping.

That house in California can not rent out soon enough...I need some space soon...real soon!

THIS AND THAT...

Have I mentioned lately how happy I am to be back where I know how to get around?

Yesterday I went to Costco with the kids to get some diapers and fruit. So easy...so mindless to get there and back!

Then today, because it was overcast and only about 85, I took them to the mall with me to look for Aunty Angie a robe to wear at the hospital. We weren't there long, but it was totally fine, because it didn't take all of my energy to get there!

Tomorrow we are having dinner with our friends Larry and Katie. I'm so excited to see them, we haven't seen each other since March!

The only other things I have going tomorrow is to hound the new pediatrician's office for an appointment, and do laundry....oh laundry...how do you pile up so??

I'm also hoping for a baby to come tomorrow...or this weekend. Yes this weekend will work just fine for us! Haha!

Happy Birthday Eus Annerb!!!

Happy Birthday to my only Big Sister! I love you...even though you stabbed me in the hand with a fork, and cut my fingers apart causing me to get stitches, and made me hit our brother only to tattle on me, and put the car in reverse while mom wasn't in it, then told her it was me. But those aren't the times I remember and think fondly of. No it was times like this....at Gma and Gpas where we would dress up in ridiculous outfits and laugh until we hurt. Those are the moments that make me glad I grew up with you as my big sister!

Down home cookin'!

Tonight was a regular summer-time feast...straight from the books of my childhood!

We had green-beans with onions and bacon, cornbread(baked in a cast-iron skillet), summer squash, and cucumber-tomato salad (the kind with red wine vinegar and oil).

For dessert...Nanny Cobbler! We had a lot of berries that needed to be used up, and in my book, that automatically means pie or cobbler. Steve would just eat them straight from the container, but Steve's not here. Hahaha!

This may be the easiest dessert you'll ever make. Give it a try!

First, melt one stick of butter in the microwave. Yes I said ONE STICK OF BUTTER...the real stuff too. Once that's melted, set it aside.

Take 1 cup of self-rising flour and put it in a mixing bowl. If you don't have self-rising flour, just take your cup of flour and add 1 1/2 teaspoons of baking powder, and 1/2 teaspoon of salt, it does the same trick.

Next, add one cup of sugar to the flour, and whisk them together. Then comes the milk, 1 cup of milk, add that and whisk it all until smooth.

Now you'll take that ONE STICK OF MELTED BUTTER and dump it in. Give the whole bowl another good whisk until the butter is blended in with the rest of the batter.

Once it's all mixed in, pour it into a buttered (just use the wrapper from the stick you just used) baking dish.

All you have to do now is add the fruit...that's what makes it healthy. I chose, a cup of raspberries, a whole mango, a heaping handful of blueberries, and the rest of the blackberries, I am guessing about a 1/4 cup. This is the first time I've tried this with berries, any time I ever ate this as a child it was full of peaches....mmmmm peach cobbler.

Okay...back to the cobbler tonight.
Here it is before I put it in the 350 degree pre-heated oven.


Oops...I forgot...add another 1/4 cup of sugar on top to give it a shiny top.

THEN stick it in the oven.

You'll bake it for an hour. And don't be like me and go checking on it every 15 minutes to see if it is still there. It will still be there...take my word for it.


With about 10 minutes to go, I put another spoon of sugar on top. I think next time I will skip this step. It didn't make it too sweet, I just didn't like the way it looked in the end.


I got myself a little bowl once it had cooled a bit. Normally I would eat this with vanilla ice cream, but I wasn't feeling like scooping it. (That's what my husband is for!) So I went instead with the Redi-Whip. It did the trick just fine!


There it is friends, the best cobbler IN THE WORLD! I challenge you to make a better tasting, easier cobbler than this! I think I would have made Nanny proud with this one! Of course, I'd take her peach cobbler to just about any dessert any day of the week! I sure hope there is some left for Steve tomorrow night. If not, I guess I'll just have to make another one just for him.

What a week!

It has been quite the welcoming week back to Colorado! I have meant to sit down and write a blog, but my days disappear before I know what has happened!

Max is doing much better. Thank you all for your prayers and asking about him.

The doctors monitored him over night and through their intense treatment in the ER, they successfully knocked him smooth out to stop the seizures. We went home on a higher dose of medicine, and a very sleepy little guy.

He woke up Wednesday morning with plenty to talk about. In fact, today was the first day that he didn't talk non-stop all day long! We are to see his neurologist again in a week or so to make sure he's still doing okay. We'll have some tests coming up to see if he has another spot on his brain to watch out for with the seizures. He told us that the seizures were coming from the same area they did surgery on. And that Max hasn't had this kind of seizure since before surgery. When the doctor said that, it made me feel so so good knowing that he knows Max so well, and how special it is that he knew him from the beginning.

On Tuesday, once we got word that Max was okay and that we would be going home, his neurologist stopped by to visit with us before we went. Up to this point we were so into the emergency of his treatment that we just exchanged hugs and got right down to business. But once we knew he was on the mend we could relax and visit. One of the first things he said was he was so happy we were back. Truer words have never been spoken. I couldn't have imagined doing this from another state, or country. We are here, where we need to be for Max...and for us.

It was amazing how confident we felt in telling the emergency dept. staff what to do for Max. And calling his doctors, and all of them knowing exactly what he needed. Not because of his diagnosis, but because they KNOW Max!

So that is behind us. I'll work next week to get him a pediatrician hooked up, his formula sent here to CO, sign him back up on the Medicaid Waiver(that we had to give up to sign up for it in CA!), and get his therapy started again. The week after next we meet with the G-Tube Clinic to talk about surgery. It is SO time for that to happen. I've been having to give Max all of his medicine by syringe since coming home to make sure he gets it all in, and it is so difficult! I'll be glad to get back to a point where he enjoys eating. Right now it is just a chore for both of us!

On other fronts, we heard from our land-lady in CA today. She showed the house to a couple who absolutely loved it, but didn't know if their parents' could handle the stairs. So they declined it. I'm hoping they look around and come back with nothing in that price range, or anywhere near as nice and want it after-all! We can't get our own place easily without the monthly rent from that one being gone.

We're enjoying the time with our friends, and Angie and Dan. It's so good to be back...discovering new things, and old things alike!

Hopefully next week I'll be more on top of updating!

Admitted...

Let's see...7 hours later, and I am finally sitting down to "relax".

Max woke up at around 9:00 this morning with a seizure. Not uncommon for him while waking up, especially after traveling. But then a couple of minutes later, he had another, then another and another. Until it was too many to keep count.

We called his neurologist and he got some Diastat (rectal valium) ordered for him from the pharmacy up the street. Steve went and got it, and I gave it to Max as soon as he got back. This put him out almost immediately. At the point of giving it to him, he had been having seizures for 2 1/2 hours. I took a shower and when I got out, he was hard asleep.

I called our neurologist to let him know the medicine had put him to sleep, and he wanted to know if the seizure activity had stopped. At that point, Max was still having a bit of seizures, so he told us we could give him another dose, or bring him in to the hospital. I called his metabolic doctors, and because he had not had any fluids or food all day they wanted to make sure he was stable on their end. So we decided to bring him to the hospital.

We got here and got into Emergency where they started him on IV fluids, and started watching him on the EEG test to see if he was still having seizures. That's when they noticed he was having a continuous string of sub-clinical seizures. Meaning his brain was being too noisy, but not showing up on his outward appearance. His doctor is not the doctor on call this week, so we are dealing with another doctor now, but thankfully they are keeping our regular doc in the loop.

He started him on a dose of ativan which is an acute medication to make the seizure activity stop. Then they gave him a dose of dilantin, which is one they'll keep up for a bit to get the seizures back under control. They also increased his regular seizure medication. He is one doped up little dude right now!

They wanted to watch him overnight and check the EEG in the morning to see if the medications have stopped the seizures. Metabolically he is good, and not all too hydrated. He's still on IV fluids since they've doped him to the point that he couldn't eat even if he wanted to. Plus he's got all of his medications on an empty stomach.

I started this post almost two hours ago. Really...don't these doctors know I have a blog to update!!!? Max is sleeping very soundly right now. Steve's gone back to the house to check on Abbey and probably to sleep for the night. I am up here with Max, probably NOT to sleep tonight, but I don't like leaving him while he's in the hospital.

I can't even begin to tell you how many times today we've said or heard, I'm so glad we're back in Denver. As soon as both of our doctors came in they told us they were so glad we were home for Max. I honestly can not fathom doing this is California right now. Abbey spent the day with Susan, and the evening with Angie and Dan, and now is having a "slumber party" with Olive and another friend who is in town and staying with the Clark's too.

How would I have done this there? We came in for a few seizures and dehydration and found that he needs more attention for a while with the seizures, something that has been very quiet for years. Spoke with the Metabolic doctor about the g-tube, and are going to get that going quickly, for days just like this. She's also recommeding him to the rehab doctors to get him into intensive therapy soon.

When I woke up this morning, before Max started having seizures, I read this :

"Help and peace and joy are here. Your courage will be rewarded.

Painful as this time is you will both one day see the reason of it, and see too that it was not cruel testing, but tender preparation for the wonderful life-work you are both to do.

Try to realize that your own prayers are being most wonderfully answered. Answered in a way that seems painful to you, but that just now is the only way."


I thought to myself, boy I hope that doesn't mean Max is going to get sick again now that we're home. He woke up about 15 minutes later having seizures. But we know we are where we are supposed to be, just as we have felt like we were where we needed to be all along the way. We are here now, and Max could not be in better hands. They take care of him as if he were royalty. And I know that is only because God knew almost 5 years ago that this little boy needed to be born in Denver to find these doctors. They care so much for him. His neurologist just called a few minutes ago, once his own kids were in bed, to check on Max and to talk to us to see if we were okay.

He reassured us that he would take care of Max and would not let him be overlooked. And I know it's true. I know he will do whatever he needs to do to take care of Max, and us. It's always fun to watch the nurses and "under" doctors faces when one of the head neurologist comes in and hugs us and Max too. It's not a usual connection we have with these doctors. It is special and we are so blessed.

I will close for now. I think I'll get caught up on my web surfing! Or just stare at the walls. Thank you all for your prayers. There were many times today I thought of you all, knowing you would have checked my blog and would be praying for us. It's something amazing really, to be cared for by people you've never seen. While my every breath is a prayer in the moments of emergency, to know that there are friends and family stopping and praying for Max and for us is just so humbling.

Thank you.

Our boy...

He woke up with seizures this morning. He's had about 15 so far. Please pray they stop so we don't need to take him to the ER. I'll update later.

(oh and we're back in colorado, i forgot to update here...it's on my xanga)

Now...

This is just one of the many "Abbey Today Shows" that Abbey has been posting on her blog. If you follow the youtube over, you can see more of them. She gave me permission to post it here, as she is getting to that age where she wants to be in charge of how she is perceived. We took several takes on this on to get it to the point she wanted to post it.



We're in Sacramento now, Steve is working during the day, and we're hanging out at the Residence Inn. Abbey has declared that this is the BEST hotel room in the WORLD! I told her we needed to get her out more. ;) I guess it is just a novelty to have a kitchen and couch in your hotel room.

This evening we spent with Vijay and her family while Steve had a dinner meeting to attend to. It was Vijay's first time meeting Abbey. Of course Vijay made awesome food that I filled my tummy with! Abbey gave everyone "tattoos", and Vijay gave us some of her beautiful bangles. They are all so unique and special.

Tomorrow, Steve will work again, and I may take Abbey back over to the pool. It's inside, so it feels like a steam bath when you walk in there. But it's either go in there and Max and I sweat, or stay in the room while she runs in circles because she's bored. Choices...choices! Maybe Max and I will try to get in the water tomorrow...but probably not. I hate public pools of all kinds! They are so gross to me! I'll just put him in his swimsuit and pour a bottle of water on him from time to time!

We will leave Friday early in the morning to head for Salt Lake City. Then Saturday morning will head on to Denver. And then I will sing "home...home on the range!".