Tomorrow...

... we start a very crazy day! ROADTRIP!!! We are driving to see my older brother, Ben, graduate from Captain's Career Course in the Army. Both Parker and I are VERY excited as he LOVES uncle Ben :) And, Uncle Ben is pretty crazy about him too! However, there is a damper on the entire thing as Parker is sick. Yep, the first illness of the winter months has STRUCK! No idea exactly what it is, but he is one miserable baby... I will be posting pictures and tips as we go through this trip. I have some pretty awesome organizational ideas that I'm excited to share! But in the meantime, enjoy this picture from the other day as Parker was learning to paint with water colors :)

Holy Busy-ness batman!

SO, I've been one VERY busy little beaver :) Here's the rundown:

1. Started home-preschooling Parker. We spend 1 hour a morning (before snack) working on coloring or little fine motor skills. About 1-2 times a week, this is replaced with OT or ST, which I agree is an appropriate substitute :) So far, he can successfully count to five, but counting objects and toes are still coming ;) He can also draw and recognize circles and squares. His favorite activity are puzzles!!!

2. I've begun to sell Scentsy (https://catmayhew.scentsy.us) and make weighted blankets!!! It began with making Parker one, and it turned out so nice that I had orders begin pouring in! I'm loving this new creative outlet, though I need to make some Fleece PJs for us as its getting rather chilly!

3. Parker's new favorite activity is going to the zoo. He wakes up every morning saying one of two things, "where Steamer go?" (refering to his GeoTrax train) or "see Am-nals". The latter usually wins and we've been visiting the Zoo about once a week! Below are some pictures from our most recent visit.

4. The fits aren't as frequent with Parker, but they are getting bad again. He's also begun to consistantly tip-toe walk. All of things put together are not great signs, but the Doc's are keeping an eye on his psychological development.

5. Denver- oh Denver. The insurance company came back and denied everything. They are allowing us to consult with a doctor out there, but they are not allowing any proceedures to be done. So, we are in a full appeals process, and it is going soooo slow!! I will keep you posted on any developments.

Beyond that, we're doing ok :) Progress on Parker's room has been haulted as we need to finish the downstairs rooms and the porch before it gets too cold. So, that's the skinny :) Lover you!

Dun Dun Dun! The construction begins!!

Wow, what a week! And it just zoomed right past!! I have several 'must do' projects before we go to Pittsburg and getting this room done is #1! I'll be working on house clean up tomorrow as I axiously await my Scentsy order from my dear friend Lesley! (shoot me a comment, I'll send you her website. She rocks!) I've really let this place go to crap as I finished these last two weeks in school. Now that I have the week off, I'm going to get this place back in order and ORGANIZED. Y'all know me and my incessant organization... I have a 6 inch thick pile of papers to be filed.. this must be done before I loose my mind! Here's what Parker's room looks like right now:



These are the colors as they will be. The white is the woodwork, a semigloss, this will also be the clouds in the sky over the blue. That's the ceiling. And the "Aged Parchement" is the walls. Its a very pretty LIGHT creamy brown. I'm tempted to go a shade lighter than that, but wanted the room to be 'warm'

More Parker Room Pictures

Some more preview pictures :) The Green Wall is what I'll be working on today. His floor screen is acting as a 'containment' for his toys right now!






And Preview of what his room will look like from the door. I set it up to see how I would like it :) And I do!!!

Parker's Room-- IT BEGINS!!!

So, I got a bug up my shorts yesterday and decided this was it. I'm starting on Parker's room regardless of if the other rooms are done. Personally, I think he has priority ;) So, I will be creating an abaitment enclosure later today within his room to start on his West wall, which is the worst shape. Stay with us... this is going to be aweseom :) The pictures are what's done so far... Including Painting of the milk crates which are ultimately toy storage. I bought the first of the citrus trees, there will ultimately be a 'grove' of dwarf citrus. His room has THE BEST light in the house. I've grown many things in there :) And even gave the hallway some love!

We're going to Denver!!!

So, I should probably blog about this... and keep you abreast of what's going on :)

In Denver, is National Jewish Health which happens to be the #1 pulmonary hospital in the NATION. And they want to see Parker. As is the tune of no one has any clue what's going on with him, they want to figure it out! So, we are going out there for a two week (or more!) diagnostic adventure at the beginning of October. Right now, I just got a call back from the Coordinator and they are sending his file from the main team (which they accepted him) to the Pulmonary department (kids, that is) where they have an intense review of what the heck could be going on with Parker! In this time, they will go though his chart and decide which diagnostic treatments they are going to do, and how long we are really going to be there. So, that's what's going on now :)

On our end, I'm waiting for my Felt to get here so we can start Parker's felt book for our trip!! That should be fun. I'm also gathering all the medical records and having them sent out there. Oh so much to do...

The Vest. The craziest medical contraption I've ever seen for home use, and the one thing that's kept Parker so healthy!!

We got the vest back in May 2010 and have been using it twice daily since. Parker has gotten used to it by now, but at first it was a battle that usually ended in me holding him in some awkward position that would rival most professional wrestlers. Sometimes this still is the case, especially when having to give predisolone! Uh, that stuff is NASTY.

The Vest has been an intricate part in keeping Parker's lungs clear of stagnant mucus and building up on his lung walls. In normal healthy lungs, you have cilia that function and 'beat' many times per second as you breath in and out. You also have cilia in your ears and sinuses. They also assist in the coughing reflex. In Parker's lungs, or any child with Primary Ciliary Dyskenesia, these cilia either have limited function or a paralyzed completely. It is unclear yet how Parker's function, but they aren't functioning adequately at this point. So, the Vest 'beats' for him! It pulses air in and out of this vest at a very high frequency and squeezes his chest some to allow the 'beating' to work more effectively. Parker is on a ramp system, meaning he starts out on a low pressure/low pulse rate (level 1 pressure and level 10 pulse rate) and then ramps up to level 4 pressure and 16 pulse rate over the course of 10 minutes, and then he stays at this high rate for another 10 minutes. This is called a Michigan style if I remember correctly, but this also allows Parker's chest to get 'comfortable' before the real work begins!

We have noticed a significant difference in Parker's ability to cough during this process, and its a good 'huffing' cough that allows him to clear his lungs. During the day and between treatments, he is coached to 'cough' if he starts to sound junky. He does a pretty good job of getting some good coughs out, and if that's not enough, then we go up for another quick treatment. This is also Parker's time to watch TV during the day, or his favorite movie. This morning, we finished Tangled that we've been working on for 2 days. I think he just has a thing for Repunzle ;)

During the initial ramping process, Parker gets a DuoNeb treatment (albuterol/atrovent). This opens the airways (albuterol) and breaks up the mucus (atrovent) to allow the high pressure to work efficiently! After his vest treatment, he gets his long acting brochodialator (Advair 230/21) to keep him open and clear, along with a cocktail of other medication for the day or night. This happens twice a day at minimum. And this allows him to be able to run and jump and play like a normal kiddo for the rest of the day :)

He is definitely coping very well with all this medical crappola he has to go through, and hopefully someday we can back off some of the medication and treatments necessary as we get closer to finding out what's caused this and continue to fight for a cure for PCD. The only known cure right now is a lung transplant, and this only happens in the most severe cases. I hope and pray Parker is not included in this category, but we take it as it comes. Until then, the Vest is a permanent fixture on our routine :)