Sunday, May 10, 2009

My son.

Dylan taking his spirometry test, he loves his nose clip, cool dude!

Just hanging out waiting for the dr. This is how we spend many days.

Time for bloodwork-- he asks, what color today ladies? purple top?

Then he gets to get the vial out of the box and helps. then he says thank

you. what a guy!

Tonight on Extreme Makeover Home Edition they focused on a family with two daughter who have Primary immunodeficiency, which is what my son has. It was an amazing show and I hope it gives people an idea of what we go through. I posted before on this blog about some of the things we do for dylan,

and some pictures. I am going to post a couple more pictures today and kind of give you an idea of what we have been through in the past 8 weeks with Dylan. It will give you an idea of a typical couple of months. I am trying so hard to raise awareness of this, so many people have said to me, well, he looks fine, you are making it up, blah blah. Or they try to push me into taking him places that arent safe. I really and truly am not trying to be an overprotective mom, just a cautious one and one who follows the drs orders. Here are some pictures, then a recap of these past two months.

Dylan, the past two months:

Infected Lymph Nodes- hospital and antibiotics

Ear infection- antibiotics ( different from lymph node antibiotics)

Fungal infection on leg that developed into staph

Bacterial infection on scalp

Blood sugar elevated and had a fun er trip

Stomach flu

strep throat with fevers of over 104 and rash more antibiotics

Asthma attacks- five in four days, ended up at hospital, steroids for 7 days and albuterol every 4 hours

Now is running fevers today, not sure why

This is life. He has to play inside most days, because of the pollen and his allergies, the enteral formula that he drinks three times a day to maintain weight, he is now allergic to, so we have to find something else. We are thankful because there is an amazing pediatric immunologist in st louis who is willing to take him on as a patient, so we are off to the dr yet again, to see what can be done. He is so brave. He is my hero. I love him.

1 comment:

Miranda said...

My heart goes out to your family. I can't imagine what it must be like having to deal with these things all the time. You're always so positive and upbeat. I'm sure that's why Dylan handles it so well. He has a great example.