Sunday, September 28, 2008

Leafy goodness...

This weekend has been a major letdown.

We went into it with high hopes of finding the "perfect" place to rent. We are wanting to rent right now to save up before we buy again. But we have just not been able to find anything in the areas we are looking, in the price range we are wanting. Add all the things we have to have for Max...one story, attached garage for the winter transport, bathroom with a tub just for his bath chair, make sure it is indeed a house instead of anything with shared walls, and we've got quite a laundry list of things we have to go through on each house!

We finally decided to give up this afternoon, and come back to our friends' house and just try to see if there were any new listings online. When we pulled up I saw my sister was here. When we went in, I saw squishy baby Adeline looking bright eyed at me! Ang had come over to see our friend, and was just hanging out.

That's when the day started to turn around. We played with Baby A and visited with our friends a long while, something that, even though we live in the same house, due to schedules doesn't happen all the time.

As we were sitting in the living room talking, I noticed a tree outside with leaves glowing and I told Ang that we didn't get up to the mountains to take pictures for the family blog. I asked if she wanted to take the kids out there to the greenbelt and take some pictures of them for the Grandmas.

And now you, my blogging friends, get to join in the fun of pictures with Max and Adeline!

Where's Adeline?
Bush Baby

Now check this sequence out....
Hello Adeline!
Hi Baby Adeline!

I will kiss you (click on it to see the bigger version and you can see the slobber down the side of her head!)
Kiss Kiss Kiss

Then the smile...pretty proud of himself!
I gave her a kiss!


We stuck the kids in the leaves...
i can stick my tongue out!

I am still getting leaves out of his bed and diaper after this!
yeah for fall!!!

And the money shots of the day...
Does he have horns?
What a face!

And come on everybody...all at once...AWWWWWW...
Smiling for Uncle Steve

Thursday, September 25, 2008

I watched The Office tonight. I know it might sound shallow...but I am happy to have good tv back on! "Good TV" is all a matter of opinion, but I do like that show.


I got a call from the medicaid case worker today. She only needs one signed form and Max is back on Medicaid. Yippee! It's especially good because Steve's work has decided to not sign back up with the insurance we have, so there will be some new hurdles to deal with there. We've got to choose a new plan, and see what all they cover, but at least with the Medicaid back in place we don't need to worry if he'll be covered.

I'm still looking for houses online. I think I could do a townhome, if it isn't attached. What I would love, we both would love, is a huge brick walled loft downtown overlooking the river! Just section off a little room for Max and Abbs. Aaah! Oh well, we'll see if that happens!

I need to look at the Colorado State Parks webpage and see how the foliage is looking up in the mountains. Don't want to get up there before they've changed, but don't want to wait too long and find them all on the ground either!

Steve should be home soon from his month o' traveling! I'm glad he'll be here for a while now!

Hope everyone has a great Friday. Just for kicks...here's a throw-back to old blog times. A question...

What is your favorite autumn activity?
I'll answer in comments...you do the same!

Wednesday, September 24, 2008

Too warm!

Anyone else ready for cooler weather?

It is beautiful outside, but I am still having to dress for warmer weather. And friends, I am no fan of dressing for warm weather. I love my sweaters, and jeans, and scarves, and boots, and hats. LOVE THEM I SAY!

I think we will head up to the mountains this weekend and try to see some of the leaves before they fall off of the trees. And we'll be looking for a house.

I'm started to get stressed thinking about all of this house business! To rent or to buy...2 bedroom or 3...this neighborhood or that. This is what I would like...someone to please contact extreme home makeover and tell them we need a brand new house in the Downtown Denver area that is accessible for Max, and close to a grocery store and parks. YEAH RIGHT!!!

It is nerve racking with all the market money mumbojumbo going on. I just feel sorry for the poor people who bought our house and put it back on the market 3 months after buying it...where it is still on.

Well...guess I'll go feed Max. Then maybe eat something, and then watch a little tv before bed. I have to do something to rid my mind of the jealousy I have towards my husband who is eating dinner in San Francisco tonight.

TTFN!

Tuesday, September 23, 2008

Big Ol' Long update...

I have been much too quiet. But I've also been quite busy. QUITE busy!

Let me break it all down so I can get all caught up...

House:
Last week we got word that the house we were renting in California finally got new tenants. That has freed us up to start the search in earnest here. We are looking in a very different area than we have lived in before. It is in Denver, rather than the suburbs. We're excited to look, but nervous with the money establishments right now, not knowing if it is the best time to buy. Either way, we are set on this area, and will rent if it seems foolish to buy right now. We're hoping to hear from the lender soon. We're playing phone tag for the past couple of days. If we get it all set up to buy, we will get right on that, but if we are renting, we will likely have something by the middle of October.

Steve:
He has been traveling for work all month long! He has been home on the weekends, and then back out on Monday this whole month. He gets back Friday, then hopefully the travel will slow for a while. Nothing is scheduled for now anyway! I think he likes being able to hop on planes though...he just wishes we could hop on those planes with him and go along.

Abbey:
Big stuff going on in her life in Tulsa. Hoping we can get her here soon, thinking of her through all of the house hunting. She'll come for sure on Max's birthday. She's been accepted in the Strings group in school, she's hoping to play the cello.

Max:
He's been a little naughty at nights with Daddy gone. If he's not fussing all night, he's up playing and talking. We have been so busy with therapy and doctor stuff. Seems like since his g-tube it's been non-stop. Both therapies have started up again, which is Tuesday and Wednesday. We've been going down to Children's for pediatrician check-ups, and if we're not in an office, I'm on the phone or emailing doctors and case workers to get his medicaid finalized. I'm hoping that will be all finalized this week. Next week we will be trying out more wheelchairs. And I might need to take him in to see his pediatrician about his belly button...not infected anymore...but very very red and swollen. And we need to see what he weighs and if we need to up his cans of formula, but we may wait on that until October.

Me, Myself, and I:
Look at the above 3 paragraphs. I am pretty spent. Pretty tired. Pretty unenthusiastic about sitting and blogging about the craziness that is going on in my head. Will we find a house in our price range, in the area we want? Will we be able to buy so we don't have to fuss with renting?

Wishing Steve was here to keep me company, and help with Max, but thankful for his job and the fact that he gets to work from home.

So happy that Max is back with the therapists at Children's, but really feeling it getting him in and out and in and out and in and out of the car into his chair, and into therapy, and backwards. Up and down stairs with him...bathing him...breaking my back. Having to keep track of all of the

receipts to turn in for reimbursement to the county until the medicaid kicks back in. Laundry, keeping our room picked up and things in order so I don't go crazy, trying to get out all day every day on the weekends looking at houses. Feeding Max, trying to figure out the best schedule for that. Ready for my own space...and still so thankful for friends who have offered their space to us.

And remembering this week a couple of years ago I was here...having breakfast with two of my favorite people...talking and dreaming...
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and starting to think...what if we left it all behind and moved there. And now seeing how the road has lead us right back where we started...and just trying to see what in the world it all meant. And feeling like a right nut-job for not coming up with anything.

So there you go...all caught up.

Monday, September 22, 2008

Happy Autumn!!!!




Your Autumn Test Results



You are a dynamic, vibrant person. You aren't afraid to pursue your passions.



When you're happiest, you are outgoing and expressive . You love celebrations, and you enjoy showing off a little.



You prefer change to come slowly. You need a long transition period when your life changes.



You find love to be the most comforting thing in the world. You feel at peace when you're with your loved ones.



Your ideal day is chill and uneventful. You prefer to kick back and take it easy.



You tend to live in the moment. You enjoy whatever is going on, and you don't obsess over the past or future.

Friday, September 19, 2008

I love to ride my bicycle....

Yesterday I had a meeting with Max's new case worker for the pediatric medicaid waiver. This is the special Hospice Waiver he's being put on, because by definition he has a life limiting disease. It was a great meeting, and she said it shouldn't take more than a month to get it all finalized, and Max back on medicaid. Yippee!

Once she left, I was looking forward to a dull day of doing nothing. But I got a call from Max's physical therapist asking if I could run up to therapy because there was a vendor with bicycles there for special needs kids. We've wondered for a long time what Max would do on a bike, and how great it would be for him to get to use his legs in that way, so I got Max ready and headed up there.

The first thing I saw was a very colorful chair. It looked like a kid's recliner, but was much more substantial, with more support for low tone kids like Max.

Here is Max in the Chill-Out chair. He really liked sitting in this chair, and I think it is one thing we will order as soon as we get into a house!
Chill-out chair

Then we got him situated in a bike. He liked it, and we'll contact the people who were there offering funding to see about getting one. Insurance and medicaid will not pay for these because they are not medically necessary. But come on...every kid loves a bike! Which is where the organization Variety USA comes in and gives grants to families to help pay for equipment insurance won't.


(The vendor is pushing the bike, like a stroller, and it makes Max's legs move with the pedals.)

After riding on the bike for a few minutes I mentioned to his therapist that his legs looked dark, and she said, yes, that's called blood circulation! Ha! Steve was out of town so I took pictures and the video, and had to show him last night before I could post it here!

(Max on the bike, notice his hands are being held up to the bar with the gloves)
Max on a bike

It was a pretty sweet moment when I looked around and ALL of his therapists were out there cheering him on. His Occupational therapist, and Physical, and Speech. All of them came out to see Max on his first bike ride.

I'm glad we're back.

Thursday, September 18, 2008

Golden Rule...

Golden Rule

Painting by Norman Rockwell, Golden Rule (1961)

Tuesday, September 16, 2008

Monday, September 15, 2008

Yippee!

The house in California is no longer our responsibility! I am so happy they got a tenant to fill the lease. And now we know to not ever sign a lease without an easier out! But really, they have been so good to us, and I am happy to have met them. They definitely played a role in the journey.

Now on to our next house! I have a call into the medicaid case worker to ask about the estimated time of his approval. If it is short, we will likely wait it out here until it goes through, then transfer to another county. If it is still months away, we will likely just try to get it going in Denver county. But we'll just see what they have to say when she calls me back.

Steve heads out of town again tomorrow. And I get to play with Baby Adeline all day tomorrow while her mommy and daddy work! Max is already excited about waking up and baby Adeline will be here to play with him!

Speaking of Max, tonight we had a pretty cool moment. Well...he was sleeping...but it was still a cool moment for us both. I needed to get another can of formula into him before I went to bed, because this afternoon he was in no mood to cooperate. So, on the sly, I hooked him up and poured the can in without so much of a budge out of him. I unhooked his tube and covered him back up. He slept through it all! Pretty snazzy!

That's all for tonight. Plenty of activity tomorrow...and hopefully plenty of pictures to share tomorrow night!

Sunday, September 14, 2008

Hoping...

New tenants are supposed to be moving into our house in California on Monday............

I guess we'll know sooner or later if that happens or not.

Thursday, September 11, 2008

More therapy stories

I love going to Max's Occupational Therapy. Mostly because I just chat it up with his therapist the whole time. She and I work together with Max, and talk about the kids, or good restaurants, or movies, or tv...just normal friend things. He has seen her since right after his brain surgery, and I was insistent on him going back to her when we got back to CO.

Today, she wanted to try something new. We put Max in a little chair and put a table up to him. Then she opened a little container of bright slime green play-dough. He smooshed it a bit in his hands, and we rolled it around and poked his fingers in it. She made a little tube with it and wrapped his left hand around it to see how long he would hold on to it.

She and I were talking politics, when Max let out this HUGE scream, and a look of shock was on his face. That's when I noticed the green play-dough on his lips. My boy took his first taste of play-dough today, and thoroughly hated it. Oh he cried and cried and let that stinking play-dough drop out of his hands.

I have to admit, it was so funny. He was being such a good boy, practicing bringing his hands to his mouth while holding something. A task even baby Adeline can do, but Max is still learning. And it was so gross to him.

He did keep playing with it, but just wouldn't put it back up to his mouth. I guess I'm going to have to give him some marshmellows to play with, so when he brings that up to his mouth it tastes like sugar...something he'll never turn away!

Tuesday, September 9, 2008

A special heart...

You Are Blessed

Today was one of those days. It was a day where my head was in a fog. Steve is gone this week...really he's gone all month...save the weekends. But last night was his first night away from home. And Max was happy to keep me company...all...night...long.

Because of this, I was slow going all day. But I had plenty to do. I had to get Max ready for therapy, and me ready. I had to feed him, and something I neglected far too much last week, I had to feed myself. And it felt like my early day was me literally telling myself out-loud what to do next. Just, one of those days.


When we got to therapy today, my back was really hurting. I got Max out of his car-seat, and into his stroller. I noticed a mom next to me doing the same with her son. I wondered if her back hurt too. I was sure it did. He was bigger than Max, and his chair was definitely a lot heavier.

After I signed Max in, I went over to ask this mom about her son's wheelchair. It was the exact one we tried Max in yesterday. I thought it would be better to get this mother's opinion, rather than the salesman who was trying to sell it to us. When I asked her if she liked the chair, she smiled and said, "I hate it.". Then she laughed. She told me that she was only kidding...kind of. She said, "it's just so heavy!" She said, "but look at him...he sits so well in it! and of course one day, maybe he'll sit on his own...but for now he needs help...and this is the best choice."

That's when her son's therapist came out, and ours came out to meet us. Max did amazingly in therapy. He didn't cry, and sat up by himself twice. He worked hard to stand up, and was generally happy the whole time. But there was a moment. A split moment that made the foggy first part of the day go away. And made me so proud of my son I could burst.

He was sitting facing me, with his arms resting on the table in front of him, readying himself before he chose if he was going to play the piano toy, or the drum toy. And it struck me, what a very simple task this was for a nearly 5 year old boy. In that same moment, I noticed in myself this urging...this silent cheer...a cheer for him to try...try harder...you can do it. Reach out your little hand and hit one of the toys. Either one, it doesn't matter, but I know...I KNOW you can do it.

And then he did. He made a deliberate, although quite disorganized movement towards the keyboard, and slammed his hand down. And it was an awful noise. A terrible racket. But it was such an accomplishment. And he knew it. And he was proud. He turned to look at his therapist and he smiled. And turned to look and me and then my cheer was heard. "Great job buddy, Mommy knew you could do it!".

And tonight as I think of that, I remembered the mom in the waiting room, KNOWING that some day her wheelchair bound son would sit. And then of all the parents I see from day to day in the waiting rooms of doctors and therapists. We're all in this secret club. No one knows the secret knock to join, but once you've fallen through the trap-door, you're a member for life.

I thought of the unimaginable hope that parents with special children have. It is an incredible love. An unmovable patience. A complete unyielding to the idea that maybe one day...they'll walk, or run, or sit on their own, or talk, or feed themselves...but an absolute realism that it may never happen...and that's okay too.

Because we're the lucky ones. We're the ones who get to see the everyday miracles. And in those waiting rooms, and in those hallways passing, we share the victories, and with a little smile, cheer our silent cheers to them, and to their kids...Keep trying...I know you can do it.

You Have A Mission

(To read through all of these inspirational posters to parents of special needs children, just click on the pictures.)

Sunday, September 7, 2008

Hooray for Max...

First off, today was a really great day! We left the house around noon, and didn't get home until about 7:00pm. What's so great about that is that Max lasted ALL DAY without a melt-down! Something that we've been working on since we got back to Denver in July. After being out all day, we had dinner with friends out and he was happy and good the whole time!

Max had a rough day yesterday with his tummy feeling pretty nauseous from all of the new medicine. He wouldn't eat anything by mouth, and even feeding him with the g-tube was difficult, as his stomach was always full. He slept really hard last night, and woke up ready to eat! Daddy gave him his first can of formula, and let me sleep. Tell me again while I was hesitating for this g-tube? ;)

I promised some better pictures of Adeline and Max. I think these will live up to that promise! We went over to spend the evening with Ang and baby Adeline yesterday, on Saturday, and got some sweet shots of the kids.

I mean really...
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Max hugged her...
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And gave her kisses...she's still learning...
(BTW: She looks EXACTLY like Ang in this picture!)
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And here are the best shots from the night!

Steve put Adeline on Max's lap...
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What's going on Mommy? What...you want me to be sweet to her?

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Too bad!
DSC_0091.JPG

SURPRISE!!!!!!!
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Friday, September 5, 2008

12 hours later...

We left for our appointment with Max's neurologist about 12 hours ago. We had a great visit with him, and he and Max chatted it up. Max even played a little game of acting like he had no muscle strength in his legs while the doctor was checking, then kicking with all of his strength! It was a funny little game!

After that appointment we went to our nutrition appointment. She said he has gained weight, and wanted to increase his formula intake by a half of a can a day. No big deal there!

After seeing her, we saw his pediatrician. She took a look at his belly button(the one he was born with) and told me it was infected. The surgeon was messing with it the other day and must have opened it up and maybe some urine got on it. So she wrote an anti-biotic prescription for that. Then she looked under his g-tube button and saw the granulation(which is part of the stomach lining making it's way out.). It doesn't hurt him, and doesn't harm any part of the tube. But it can lead to more leaking, and can make it scar around the site. So she gave us some silver nitrate to "burn" it off. I asked her to watch me do it, since I will have to do it once a day until it goes away. Ugh...not a fan of that job...but it was quick and it didn't hurt him at all.

Once we got the belly issues handled, we went over just a few more things before we had to hurry and take Steve to the airport, as his flight left at 4:45, and it was nearing 3:00. One of those things was to give him his vaccines, MMR, Polio, and Chicken Pox. The nurse came in and gave them to him, while I finished up with the pediatrician. We got loaded up and to the car, in the cold...48 degrees here today!

When we got to the car he was really fussing, and we noticed he was having excessive amounts of saliva. I held him, and he was bucking and screaming. He started gagging and gurgling, and we thought it best to take him back into the clinic, because this was an awful lot like his reaction to the flu vaccine. We got him in his chair and he vomited everywhere.

We picked up the pace and ran him back into the hospital, where they hooked him up to the monitors and checked his lungs, heart rate, and blood pressure. All his stats were fine, but he was as white as a sheet, and still had the saliva and now was sneezing. When the hives started to show up they gave him an epi-shot.

That calmed it all right down...but got us a fast track trip to the ER. Which is where we were for the following 7 hours.

We are home now. He's sleeping quite soundly. He really was doing fine after he had the epi-shot. But now there's been a can of worms opened as to what in the world happens to him with vaccines sometimes. Our pediatrician is getting the doctors at National Jewish Hospital involved, and has told us that any other vaccines he has will need to be done in a trauma room at Nat. Jewish in case of a severe reaction again. We will also need to do some more extensive testing to see what it is that he is allergic to. We had started some testing because the flu vaccine set him off last year, and we wanted to get it checked out before giving it to him this year. Now it seems it wasn't specific to the flu vaccine.

So 12 hours later...I am going to bed. Steve missed his flight to Tulsa to see Abbey this weekend. I know she is disappointed, but we're hoping he'll get to go next weekend. So I guess we'll lay low this weekend and make sure he's all better before we start all over next week!

Thursday, September 4, 2008

Kiss Kiss Kiss...

Max and Addie May

Max is learning to love baby Adeline. At first he wanted nothing to do with this new attention stealer. But now, he asks where she is, and wants to give her kisses as soon as he knows she's around. Today was his first time holding her, with my assistance.

As soon as he felt her weight on his arm he brought the other arm around to hug her, then reach over to kiss kiss kiss. He's just learned in the past couple of months this kissy face noise, and saves it only for his most favorite people and things! Addie just looked up at him. Good thing Ang had her iphone camera ready to snap the shot. We'll have to get some good photos of them this weekend playing more.

It has really been a busy week, but I am hoping for a really low key weekend. But before the weekend can start, Friday has to happen...and this Friday is a doozy! Neurology, Pediatrician, and Nutrition all before 1:30! Then I take Steve to the airport where he catches a flight to Tulsa for the weekend to see Abbey.

Hope you all have a great Friday!

Tuesday, September 2, 2008

Busy busy busy!!!

This week is FULL...and I do mean FULL!!!

In a couple of hours, Max has physical therapy. Which he hated last week, so I'm hoping he's feeling more cooperative this week! Then I need to get a call into the formula, g-tube suppliers for more supplies and the correct formula, they sent 2 pallets of the wrong stuff! I'm hoping they will send it today! **stopped and called on this...they will send it tomorrow!**

Tomorrow, we have a post-op appointment with the g-tube surgeon. I'm hoping they will give us some ideas about how to better cover, and pad the site, as it is getting irritated in his car seat.

After that appointment on the far east side of town, we have his Occupational therapy on the far West part of town!

We have a free day on Thursday, but I'm hoping by then I have his Medicaid papers filled out. And then Friday we see his pediatrician and nutritionist. We will also get to see how much he's gained!

Hopefully some mountains and park time on the weekend, then Monday morning we will go to seating clinic to try to fit Max in a new wheelchair, feeding seat, and car seat. We'll also see if they have any options for lift systems in to the car. Did I mention he is getting HUGE!?

Okay...off to shower and eat before our appointment.