Thursday, September 18, 2014

Officer Max...



At the beginning of school this year, Max's home teacher told him about a project he and his classmates would be working on where they would need to choose an occupation.  Max mulled it over, and said he would like to be an Officer, since he couldn't be Batman.

That evening, I sent an email out to our neighborhood email list asking if we had any police officers who lived in the neighborhood.  We have an exceptionally close knit community, and I had high hopes for finding one who could pay Max a visit so he could ask some questions for his project.

With that one email, word spread like wildfire, and before I knew it, the Chief of our city's police department was emailing me to get us in touch with some officers to come out to see Max at home. We set up for them to come this evening, and knew they had a few surprises for Max, but we were not prepared for the outpouring from some of Colorado's finest.

The Sergeant called a few minutes before they were to pull in front of our house to let Max get situated out front.  Thank goodness I let our neighborhood know ahead of time this was happening tonight, because I would have been quite concerned to see this many police show up without knowing what was going on.

They were staging along the outside of the neighborhood to give Max a good surprise. 

He waited patiently. 

And then they started down our street with lights and sirens going!  It was a parade for Max!


Wait, there is a familiar face!

Gotham's own Caped Crusader! 


BATMAN!!! (Who happens to be one of the officers who wanted to dress up as Batman for Max.)


They just kept coming and coming!  Our street was empty when they started, and by the time they all parked, there were around 20 Westminster PD vehicles on our street. 
It definitely brought the neighbors out! 

Officer Batman talked to Max while the rest of the officers were filing in. 

The k9 officers came out, and were very excited to see what all the commotion was about.  I wish we could borrow them to take care of the bunny infestation in our neighborhood! 

Max was made an honorary police officer, and an official crime stopper.  They also presented him with t-shirt, and hat, a squad car model, a badge, and a Bat Mobile. 





Max's friends gathered around at the end and he was very happy to see they were there to share in the fun with him. 
Max asked the officers questions he's been working on in speech and with his teacher. We may have to have another visit as the project gets closer, but we'll just keep it down to the couple of officers who live in our neighborhood for that. 
Those of you who have followed Max's story for a while know that we have had to stay in Colorado for Max's care.  We have tried to gather a tribe around Max where he is., when we as a family were suited to travel the world and live in far off places.  These officers are part of that tribe. We live in an incredible community, who care about making sure Max has a wonderful life, they are part of that tribe.  The friends from his school who came to be a part are part of the tribe.  Max's nurse who came on her day off to see him happy is part of that tribe.

We are simply always in awe of the incredible things that happen for him.  We are so grateful to the Westminster Police Department,  and the neighbors who contacted them on our behalf to make today happen.  Usually a turnout like this is for a solemn event, or terrible tragedy.  Today, it was in celebration of our son.  He may never grow up to be a real police officer, but today they made him feel special, and like he could do anything he sets his mind to.









Friday, September 12, 2014

Sneezy Max...

Max has had an itchy, runny nosey, sneezy kind of a week.  Thankfully, it wasn't the wicked virus making it's way around Colorado.  Instead, we had to stop his allergy medicine which made his allergies go crazy.

Look at that red nose, rash on his face, and droopy itchy eyes. 



We've known for a while that Max is allergic to beef and pork, but we also know that Max needs allergy medicine year round, and want to find out why. It took almost 6 months to get in with his doctor.  Max mostly sees the top doctors in their departments...this means it's sometimes difficult to get in with them since they're teaching, and in meetings, and at conferences it seems more than in clinic!

Dr. A. is the one who found Max was allergic to beef and pork, and said he couldn't have any more vaccines because the risk of death from the vaccines was greater than the risk of getting the flu.*  We haven't seen him in a few years, and were anxious to see if we could figure out what's been bothering Max so much.

Since we last saw Dr. A., Max has had two new diagnosis, Cobalamin X, and Eosinophilic Esophagitis (EoE).  The EoE is what brought us in to see allergy again.  EoE is basically an allergic reaction of the esophagus due to an allergen in either food or environmental allergies.  We have been wondering if some of the foods we feed Max in his blended diet were causing problems.

We had to take Max off of his allergy medicine for a week leading up to the testing.  They tested for a lot of the foods in his diet.  Again, we saw he's still quite allergic to beef and pork, but also has some markers for a few other foods.  I will wait to post what he's actually allergic to until we have all the results in.  We have to do this whole thing again in a couple of weeks with all the actual foods that go into his blend each day.

For the skin test, the nurse pricks Max's back with little plastic sticks that look like toothpicks, then touch with a drop of the allergens. Then we try to hold a very agitated and itchy Max safely on the table while we wait for the spots to react.


You've not seen quick action like nurse Kathy applying allergens in the scratch test!

It was quite a reaction with the beef and pork, and a few others causing enough of a reaction to do more testing.  

The two bright spots in the middle of his back are beef on top, and pork in the middle.  

The pork ended up being a bigger reaction than the "control" histamine scratch they applied on the far side. 

We were able to treat with Benadryl after the test was read, then had to go get more tests run with a lab draw.  Along with Max's standing Metabolic orders, they took 8 vials.  Needles to say, he was very tired the rest of the day yesterday.  Hopefully we'll get some better ideas of what he's allergic to, so we can avoid giving it in his blended food.  For now, we'll keep giving his medicine and he'll be back to his non-sneezy self soon!

*"risk of death from the vaccines was greater than the risk of getting the flu."  This is the case for Max.  We don't get in the middle of arguments on either side about the reasonings why people do, or don't vaccinate.  It is important to us to vaccinate ourselves,  because Max can not.  The only reason we don't vaccinate Max is because he is so allergic.  The vaccines Max received early in life did not cause any of his medical issues, that has all been due to the faulty HCFC1 gene.  

Thursday, September 4, 2014

Photo Mash-up...

We've been getting into the swing of school, but I want to end up this summer with my catch-all photo post.  These don't necessarily go together, other than I don't have any other post to put them with.  So, bare with me while I share a few of Max's happenings. 


Max wanted to make and EAT chocolate chip cookies.  Max rarely wants to eat something by mouth.  But when he does, chances are it's pizza or chocolate. 

We found some splash fountains at the art museum to run his feet through on one of our last hot days of summer. 


Cleaning up his school room, I found his little baby "Livestrong" bracelet.  One of the PICU nurses gave this to us during one of his "fight for his life" hospital stays.  Boy, that seems like a lifetime ago, and still so close. 

Max was ready for art therapy, and thought he would like to wait at the door for his art teacher.  I think a new project will have to be how to get him out on the front porch easily with a little ramp.  



They're a blur, because they were moving so quickly!  Max got to go to his first skating party for school.  He got to see a few friends, and had a great time skating.  Next up, ice skating!

Max went on a field trip to find gold.  Well, he went to the creek that the first gold in Colorado was found.  

We didn't find gold, but it was a beautiful creek. With parking, the sign with all the information about the significance of the place and a bridge over the water it made for a very easy history lesson/field trip for Max. 

Again, he's a blur of movement, but he's working telling his teacher which pizza is the correct fraction answer.  But, pizza was involved, so he was very excited!