COUGH, SNEEZE, GAG, SMILE

This kiddo is definitely in the running to be the next Energizer Bunny. He just keeps going and going and going. Amazing!

He's coughing, sneezing, and gagging like crazy, yet he still manages lots of smiles and giggles. That is certainly reassuring.

We went to the doctor today, and as I suspected, he prescribed the steroids. He also put him on a long dose of antibiotics. His lungs are quite wet and with this congestion lasting for two weeks, they said it has turned into more of a bronchitis/sinus infection. We need to make sure it doesn't turn into pneumonia.

He wants to keep a very close eye on his breathing. If there is any turn for the worse, he thinks we might need to put him in the hospital. I really don't think it will get to that point...he just needs to turn the corner and get the "junk" out of his lungs.

I am hoping this weekend's visit to the hotel doesn't hinder his feeling better soon. Unfortunately the weather is pretty crummy right now...cold, windy and rainy. It won't be very easy keeping him bundled and protected and at the same time, transporting all of his medical equipment (O2 tanks, feeding tube, monitor, medications). But we'll make it happen.

Tomorrow I was supposed to attend a training for our local Parent to Parent support group. They train us (the parents) to support parents of newly diagnosed special needs kiddos. This is only offered once a year, and I was really looking forward to it. But I am nervous to leave him with the nurse when he is feeling crummy, especially since his hotel visit is tomorrow evening too. We'll see...this kiddo is pretty amazing and resilient. So who knows...maybe Max will wake up tomorrow all better!!! :)

ROUGH NIGHT

Maxwell has been unable to kick this cold and the past few nights have become increasingly difficult for him. Poor lil' guy. For the past hour he has been coughing so hard, which of course leads to gagging and vomiting. Oh how it pains to see your lil' one not feeling well, doesn't it?

We have been increasing his inhalers and I've been doing a lot of CPT tonight to loosen up the congestion. Thankfully we have a nurse later tonight, because it's definitely going to be a long night.

I am going to take him into the doctors tomorrow, and I have a feeling they will once again prescribe Prednisone (a steroid) to help him through this.

GREAT NURSE REVIEW TODAY

We had our appointment with the DDD nurse today. She is evaluating Maxwell's need for the Medically Intensive Program.

The meeting went really well. It's never easy to review all of Maxwell's medical conditions, but it did adequately illustrate how fragile and complicated his medical status is.

The nurse was supportive of our efforts and definitely in favor of us having home nursing. And actually she is going to fight for us to get more nursing! Wow, that would be so helpful! Our new DDD case worker joined us too and was really urging more support for us.

We are blessed to have such a caring team backing us up! I hope the nurse is able to make these extra hours happen. :)

FRUSTRATING WEEKEND AHEAD

Maxwell's father is coming this weekend...and the plans thus far are a little bizarre and frustrating.

I was really hoping we could set aside our differences and be cordial for the benefit of Maxwell. I tried, I really tried. I offered up our home for his time with Max, I offered up our nursing hours, I offered up as much time as he wants.

How much easier could I make this for him? But he just refuses to be even remotely pleasant. I mean, come on...this man has not seen his son in nearly a year. Shouldn't he be responsible enough to ask me what I think is best for the visit? Shouldn't he care what is best and most comfortable for Maxwell?

There is so much more I could say on this subject, but enough for now. His visit is only for a few hours so it will be over before we know it.

HALLOWEEN FUN!

Some fun snapshots from Halloween...enjoy! :)


Stopped by Aunt Eliz's store to show off how super cute I am! (I wore my costume all day...even to my therapy appointments!!!)














Hey Mom, this is fun! :)


















We went to the downtown "trick or treating" festivities...so many funny people to watch! And look at me enjoying my very first Tootsie Roll. (Mommy just let me suck on it for a minute, but yummy yum yum!)













Time to play the light game! (Note the raised paw...signal to turn the lights on and off.)






Mmmm...I think I still have yummy Tootsie Roll on my lips.

TRICK OR TREAT!

That was then...

Halloween 2005 "Robot Boy"

This is now...

Halloween 2006 "Lil' Pumpkin"

And Mommy's very favorite photo of all...

As you can see, I enjoyed my photo shoot and I especially enjoyed being a sweet little puppy! And Mommy was loving it too. She was totally giggling and crying during our entire photo shoot...she was so happy to be having such a "typical" baby experience! What a change from last year...woo hoo! So exciting! Plus, could I be ANY cuter? :)

Hope everyone enjoys some yummy yummy Halloween treats! :)

ONGOING MEDICAL ASSISTANCE DISCUSSIONS

On Friday, Max and I met with the DDD (Division of Developmental Disabilities) and worked more on our medical coupon waiver. They periodically check his progress, medications, medical status, etc. The coupon has not officially started, however we are in the final stages. This should help out tremendously with our medical expenses. Just the bills from the last few weeks has been staggering. All of his heart tests from a few weeks ago could pay my mortgage for the year...ok, slight exaggeration, but they are definitely expensive!

There is a nurse from the Olympia DDD office coming to meet with us on Wednesday. She will review our need for extended home nursing. I am a little nervous actually because to qualify for home nursing, your child must be VERY medically fragile. If the child's needs even fall slightly short of that, they expect the parents to handle the care and take shifts. One stays up at night while the other sleeps, etc. While I don't even think that level of care (gtube, oxygen dependent, medications, sleep apnea, heart issues) is manageable for a two parent household, it is nearly impossible with only one parent. (I totally understand the need for the government and insurance companies to be fiscally conservative, but I also refuse to put my son's health at risk just to save money.)

The local DDD office does not think this should be a problem, but it does have me worried. I don't know what we would do without our nursing. She thinks this is more of a formality in the final stages of this process...hopefully she is right. (Because this level of medical waiver is quite rare, there is some confusion in the process. Our social worker has not been able to get anyone the waiver since 2004. Yikes!)

We'll see. But for now, I must run. Gotta go wake Mighty Max up for his physical therapy appointment. He did sooooo great at playgroup this morning (I will try and post photos later) and I am hoping, hoping, hoping that he shows off for Jill (PT) too. :)

ANOTHER "INTERVIEW" FOR MIGHTY MAX

We all know how great Maxwell did in his television debut last year...but his "stardom" continues.

This weekend, Mighty Max and I were filmed for a feature to be used at church. (Our church is HUGE, so it's kind of weird to think of our story being seen by thousands. But we wanted to help...and this is what they wanted us to do.)

This will launch the second year of the "Christmas Blessings" project. The project helps embrace single parent families during the holiday season. Last year we were a recipient of a "blessing" upon Max's homecoming the week of Christmas. It was such an incredible, special gift to know that the church was embracing us with such love and support!

So basically that is what we talked about on camera and then there were clips of me and Max playing and loving.

Thank you Christ the King for being so wonderful! I hope Maxwell's story will help your effort! :)