Be vewy vewy quiet...

I haven't updated in a while. And I have a good reason for that...really I do.

I've been sleeping.

All night.

Every night.

For almost TWO WEEKS!

The new medicine, clonidine, I spoke of a couple of posts back is the magic sleeping drug for Max. We get him in bed, give him his regular night-time meds...and his melatonin. And let him sleep what he will until we go to bed. Then we give him the clonidine.

The first week he was still waking a couple of times for a diaper change. But sleeping really solidly in between his waking. And Steve and I consistently felt like we had been hit by trucks in the morning. Like stumbling out of bed crazed people in the mornings. We finally figured it was because we hadn't slept in ALMOST 6 YEARS!!

This week, he goes to sleep, then I give him his medicine at his first wake-up (around 11:30pm), and then he sleeps until about 6:00am, waking only for a diaper change, then back to sleep until 8:30am!

I don't even know what to do with myself! It is so nice. I am just hoping I'm not jinxing it by writing about it! I somehow think we're finally on to something though!

Talker...

From 80 degrees to 40 all in a few days...welcome to Colorado! We've had a snuggly few days! Especially for Olive...




Max snuggled too...but he had to keep his feet free!


I think we're going to creep back up to warmer weather this weekend. But we're headed up to the mountains to get some fall leaf pictures.

Okay...on to much more amazing things. Max has FINALLY received his speech generating device...or his talker as we call it around here. We have literally been waiting a year to get this. And it came this week! We set it up yesterday, and he hasn't shut-up since! :)

It's a TANGO!, provided by Dynavox Technologies.

We're waiting on the vendor representative to come and really get it set up and specified to Max, but as it goes, he's been sick for the past week and a half, and still fighting it off. So we set it up as much as we know how, and got it attached by Steve's ingenuity. We may not need the vendor to come, and may be able to just have the speech therapist set it up for Max's specific needs.

Out of the box, as he was playing around on it, the first thing he said to me was, "Let me try, I can do it by myself.". He also told us last night he "didn't want to go to bed, and wanted to stay up". Then wanted "one more thing, a story". Then chose "give me a hug and kiss" before finally saying goodnight.

Here are a few pictures of Max figuring out his new voice...


Waiting for the choice he wants (it scans through 6 choices and he waits to hit his blue switch to choose)


Making his choice...it's lightening fast so I got it with his eyes almost closed...


It is just so cool. I can't wait until we can get it really tailored to fit his talking needs. And be sure, there will be plenty of videos to come!

Short and sweet...

Sometimes, posts just have to be short and sweet.

Max got his stander...


And he loves it! We still need to work out how to get him in it the easiest, as he likes to get excited and jump out before we can get him all strapped in safely!

AND

Today I took my skills test and PASSED!!!!!!!! Woop Woop! This means I will be able to get back to working as Max's CNA...because of course...I am a CERTIFIED nursing assistant now! I went in confident, and knew that all I really had to do was to stay calm and I would pass. It's a huge weight off my shoulders!

Hopefully I will be posting something more in depth at the beginning of the week...but for now...I'm just plain tired! The house needs a good cleaning, laundry needs to be done, and my bedroom looks like a hospital room from all of the skill practicing I've been doing in there!

Check-up...

Today we had a full day at the hospital for regular check-ups. A pain to be up at the hospital, but glad to get it all done at one time.

When we got to The Children's Hospital Dental Clinic, I checked Max in, and told the front desk attendant that we would be waiting outside, because Max couldn't be around anyone sick. She took us back immediately to a conference room to wait...now THAT'S how we like it!

Max was seen by the dentist quickly, and she cleaned and checked his teeth. Still no cavities ((holler!!))...and just a bit of calcium deposits on his bottom front teeth, which is common in children who are g-tube fed. She said we can watch for his teeth to loosen, and once they do, they will pull them for us. Max was ready to be done though...as he hardly lets me brush his teeth every day...let alone the dentist picking away at his teeth to clean them!

After the dentist appointment, we had lunch with Max's neurologist. This was a friend lunch...not a doctor visit...but they always seem to mesh. We mostly talked about pictures (he's an amazing photographer), but got to also talk over Max's MRI and PET Scan results, and medication changes. His MRI looked great, with no evidence of damage from the medication he's on. And the PET Scan did not show any seizure activity in the area of his brain that they did surgery on. So they can say now they had a complete resection. In other words, got all the seizure focus the first time around! The only thing it did show was an increase of metabolic concentration in the temporal lobe. (Not too stunning since he has a metabolic disease.)

Our last visit was in the Special Care Clinic with Max's pediatrician. We had a mask on Max while we waited, because the waiting area was FULL! Thank God we weren't near any sickies! We have our little hide-outs while we wait, and no one was around us. When we got back to the intake room it was reeking of sani-wipes! Our nurse said..."I just wiped this place down from bottom to top for you, we don't need him getting sick!". So nice to be known...and to know that Max is so cared for by everyone there. When Max was seen 3 weeks ago at the same clinic for his sleep issues. At that time he was 45 pounds. Today Max is 50 POUNDS!!!!! In 3 weeks he's gained 5 pounds! And grown 1.5 inches! So that's a total of 50 pounds and 47.5 inches tall.

Our first item on the list was to re-calculate his caloric intake. He's chunking up...but doesn't need to gain any more weight for now. That's right...our little guy has turned the page from always too skinny to too tubby! Who would have ever thought?! They decreased his calories by 15%. We want to maintain his weight, so if he loses any, we have to readjust.

We also talked about his sleeping...and are going to start a new medication Clonidine that is safer to try. (The other one suggested a few weeks ago had too many side-effects for Max.) She was going to call it in to our pharmacy for us to start tonight...but it has to be made into a liquid to go through his g-tube so we'll start in a few days, once we get it.

And lastly, we talked of the dreaded H1N1, or Swine Flu. She also got a note from Max's allergist/immunologist that Max was NOT to get the flu vaccine. (In case we tried to go through her! HA! Like we're that sneaky!) But she also stressed how important it is to keep Max out of big crowds, and away from anyone who is sick or has the flu. Then gave us a prescription for Tamiflu, to fill if any of us gets sick to give to him. There are some kids they are giving it to UNTIL they can be vaccinated, as preemptive measure. But that is not needed for Max, so we'll just keep it on hand in case we do need it.

She said Children's would not be getting the H1N1 vaccine until the end of October to the beginning of November. But it is possible that other clinics (like Walgreens or grocery stores) will have it sooner for us to get. Until we get it, we just have to stay away from the germs as much as we can. She did mention the flu they are seeing (about 5 cases a week in their clinic alone) varies in it's strength from case to case.

Overall, Max had a great check-in with nearly every one. He only has one other check-up with metabolic in November. Beyond that, we are hoping to stay far far away from the hospital through the cold and flu season!!!

Tomorrow, Max will be meeting his new occupational therapist. I do hope they "click"...and she is able to stick around! Then Thursday, the happy day, Max gets his new stander!!! I'll post about it once we get it!!!

Our little Picasso...

We picked up a used easel today for Max. As he continues to develop, I'm finding he is getting bored with the "baby toys". So we're trying some more age appropriate toys and activities. We'll have to get him some bigger and better paintbrushes, but he did enjoy his first painting!

Here he is choosing the colors...


I helped with steadying his hands, but he made all the paint strokes...


Here is the finished masterpiece...


Max's signature...his little thumb-print...

Flu Schmu...

Sunday afternoon, as we were getting ready to walk out the door to take my mom to the airport, and head to the wedding, we got a call. A call from the head pediatric allergist and immunologist at both The Children's Hospital, and National Jewish Hospital about flu vaccines this year for Max. As is often the case, we get these calls when it is most convenient for our very busy doctors. So we stop what we're doing and take the call...because who knows if or when we'll get the call answered if we have to return it!


He spoke with Steve, but the run-down was, Max will be allergic to this year's vaccine, as well as the new H1N1 vaccine. They can not take the gelatin out of the vaccine, and that's what Max is allergic to. The doctor also put it in terms of not which one was worse for Max...getting the flu(either one) or getting the vaccines. We can't put it in terms of which is worse to get. Either could kill him. And that's a reality. Max has had a severe allergic reaction to vaccines, each time by vigilance on our part and prayers being rushed and answered, we've gotten him the treatment he needed to reverse the reaction. But in the case of severe allergic reactions, there are times that it can't be reversed.

And this year, he would not need to get one injection he is severely allergic to. He would have to get THREE. And he wouldn't be able to get those at a flu clinic. For each individual vaccination, they would have to admit him to the PICU at Children's or National Jewish(the lading allergy hospital in the nation) to administer the vaccines over a period of time to try to avoid the anaphylaxic reaction. A PICU where they already have children with both seasonal flu, and H1N1 flu.

So as we weigh out the risks...that he could have a severe reaction from getting a vaccine he could not recover from...or he could contract seasonal or H1N1 flu, which could also be detrimental to his health, we have to ask ourselves, which is the best decision to make for Max?

And we've come to the decision that this year again will be spent indoors. Away from crowds. No travel. No vacations. No sick people around Max. And anyone who does come into regular contact with Max must be vaccinated with all of the flu vaccines.

This is where it is cramping my plans. You see, I was planning a trip to see grandparents. That trip is off. Flu is already here. He can't be exposed. And hugs and kisses aplenty come from family visits. And while we all love hugs and kisses...they have germs attached. Germs that could slide right off you or I...but Max just can't fight off the little things like a typical almost 6 year old can.

We were also planning a trip to NIH for the study Max is a part of for his MMA. Another plan scrapped. We can't get there by air...and even if we drove, he would have to be admitted into the hospital or we would be staying in Children's Inn, and while very clean and nice...still germs and the risk of being exposed to flu.

Holidays will be spent at home...and because H1N1 vaccine won't even be released until November...to the highest risk people...being around groups of friends and family will be out.

We'll see how it all unfolds. Right now I'm feeling kind of "grounded". And trying not to let it get me down. We're always careful...and try to keep him healthy. But I sure get annoyed when things are so much out of our control!

Long weekend catch-up

It's a long one folks...you know the drill...

We had quite a long weekend! My mom got here Thursday, and we did a lot of catching up and playing. Saturday morning, Abbey got here and we celebrated her birthday before doing anything else! It's always difficult not spending her birthday with her, so we're always anxious for our time to do so!

After celebrating, we went as a family, minus Max, to get flu vaccines. After talking to his immunologist/allergist yesterday, we are now officially on self-imposed lock-down. They are already seeing kids in the ICU with seasonal flu, and H1N1.

Saturday evening was spent going over Max's feeding schedule, and medicine schedule, and how his lift worked. Because Saturday night, Steve and I set out for a night away, our very first night away from Max.

We headed to get my hair cut first. We talked about it at lunch, and I thought, why not! It was boring me terribly, and I had been trying to grow it out, but after a cut where the gal got a little "layer happy" it hasn't been the easiest of tasks.

Here I am right before...


And after...


As the gal was cutting it, I thought...oh man...it's like my Great Grandma's flapper cut!
(not quite...but close!)


Back to the weekend..
We got checked into our hotel downtown Denver, and set right out to walk to somewhere WAY too impossible to take Max to! We settled on India House, and ate too much! We walked all of downtown. Up and down our favorite streets...remembered what it was like when we lived down there. And wondered why we left!

After a very fitful night of hard sleep...wondering where in the world Max was every time I woke, I was greeted by the sun rising over the buildings, and the sound of church bells ringing.

We headed home and had a nice day with mom before having to take her back to the airport, and then Abbey and I went to our friends' wedding, while Max and Steve stayed back to avoid getting Max in the crowd.

And now we're at today, where we played as much as we could. And hugged and did homework...and ate at our favorite pizza place before Abbey had to go back to her mom's.

And now, my house is begging to be cleaned. And laundry is piling up to be done. So now that you're all caught up...I guess I should get to catching up with all of the house work!