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Saturday, September 4, 2010

Will's Story

When my little buddy Will was born almost 4 years ago he spent his first week of life in the NICU at Georgetown University Hospital because of the threat of bacterial infection.  He was only a week early but when I went into labor I came down with a high fever and the doctors were concerned about infection.  They gave him a spinal tap quickly after I held him in my arms (that was scary) and then he stayed in the NICU all week so they could give him antibiotics and make sure he was strong enough to go home.  They decorated his isolet with a polka-dotted sign with his name on it and did an amazing job of welcoming my sweet baby into this world while caring for babies who were seriously fighting for their lives.  The nurses called Will the "little line backer" in the NICU (at just over 7 pounds) and they said they loved holding him and snuggling with him because so many of the babies that were there were not able to be disconnected from their tubing or taken out of their isolets for more than a minute or two.  It was an amazing experience and I was so very grateful for the angels who cared for him and for the fact that my baby was home in just one week.  I met a lot of moms who had been visiting their babies there for months and still had a long road ahead of them before they could bring them home.  These women were incredibly strong and so supportive of me which I simply could not believe given all they were facing compared to me.


After we brought Will home from the hospital we started to notice his skin was incredibly red and itchy.  He had awful eczema all over his face and body.  We had to put tiny socks on his hands so he wouldn't scratch himself during his sleep.  We had to slather him in Aquafor a few times a day (he was always pretty greasy looking!) to protect his skin.  He developed a horrible skin infection at just a few months old and this recurred every couple of months during the first two years of his life.  He was on a LOT of antibiotics.  Will also was the "spit up king" and seemed to have really bad reflux.  Despite all of the discomfort I was sure he was in, he was a trooper.  Always smiling, always chill.

When he was around 8 months old I began to feed him solid foods.  I immediately noticed that something was not agreeing with him...he would get hives all over his face and vomit.  I called the pediatrician and he told me they don't like to test babies for allergies before they are one year old and just to avoid giving him foods that caused any kind of reaction.  The problem was, almost every food I gave him seemed to make him uncomfortable in some way!  When I went in for his 9 month check-up my doctor took one look at him and said "wow, he has a lot of bug bites"...um no those are hives and he has them daily I replied.  So my pediatrician broke his rule and ordered a blood test right away.  Turned out Will was severely allergic (life-theatening levels) to 7 of the top 8 allergens (dairy, egg, wheat, soy, peanuts, tree nuts, shellfish) so we were referred to an allergist and tested further to find out that in addition to these 7 he was also very allergic to peas, garlic, bananas, beef and tomatoes.  Yikes.  It was tough.  I was nursing him so had to take all these things out of my diet as well.  I kept a food journal for both of us so we could figure out what he was reacting to.  When he was one and it was time to introduce him to milk we switched to rice milk instead since we was so allergic to dairy and soy.

We got used to removing all these foods from our diets, to keeping them out of our home, and to not going out to eat as a family.  I'm not going to say it wasn't hard - because it WAS - but we eventually got used to it and became vigilant, but relaxed.  I made it my mission to learn to bake without butter, milk and eggs and got tons of excellent cook books and great advice so that my kids could enjoy food the way kids who don't have any allergies enjoy it.  My husband is an AMAZING cook and he came up with lots of great creative recipes - even made rice milk ice cream that we all loved! - and he continues to do so.

When Will was about 20 months old we were in a groove and felt really good about how we were handling everything.  On Abby's third birthday we had a few close friends and family over to celebrate.  All the food in our home was "Will safe"...to our knowledge.  But during the party my little baby developed horrible hives and was irritable.  I gave him Benadryl right away and took off his clothes so I could see what was happening with the hives.  I did not see any signs of difficulty breathing but we were all watching him closely to make sure the Benadryl was working.  A few minutes later I was holding him in my arms and he began to vomit - violently - and it terrified me.  Then he started to pass out in my arms and we called 911.  The ambulance came right away and my baby would not wake up.  It was so scary and I could not believe it was happening.  Once we were in the ambulance they gave him a shot of Epinephren and he immediately came to consciousness screaming and terrified.  My mom stayed at our house with my sweet Abby while Robert and I headed to the hospital with Will.  He was fine - but had experienced an anaphylactic reaction to something IN OUR HOME and we had NO IDEA what it could be.  After visiting the allergist and doing more testing we discovered that in addition to all the allergies we were aware of, he was also severely allergic to both mustard and sesame.  That day Robert had made a vinaigrette that had mustard in it.  Will didn't even eat the salad, but he was picking food off of my plate and must have gotten some that way.  In retrospect I should have given him the Epi pen as soon as he started to vomit, but I was looking for distress with his breathing and didn't see any so I thought he was ok.  Now I know that if more than one system is reacting (hives, vomiting, loss of consciousness, swelling lips/mouth, breathing distress....), whether it is involving his breathing or not, that is a sign of an anaphylactic reaction...so if there ever is a "next time" I now KNOW what to do.

That was two years ago and thank God we have not had any other scares even close to that.  I don't even think he has had hives worth mentioning since then.  We see an incredible allergist (Dr. Robert Wood at Johns Hopkins in Baltimore) and test him each year and monitor things very closely.  Last summer Will outgrew his wheat and soy allergies and we had a big celebration at our house!  Our world completely changed when we could add those foods to our diet!!!  All the other allergies still seem to be trending worse, but we are used to this lifestyle and as long as we're not adding new ones to our list I am OK with that.

I know this post has nothing to do with my running really, but I wanted to share.  And actually, I will say that I hear all the time from friends and family that they admire how calm I am about everything and I feel that I owe a lot of that to my running.  It keeps me cool...helps me put everything into perspective.

I am SO PROUD of my little buddy.  He is strong.  He is happy and secure and silly and fun. I'm also so proud of his big sister, who looks out for him and gets excited about recipes that are "Will safe."  When we go to a friend's birthday party and I have to bring Will his own cupcake, Abby wants me to bring one for her too.  She wants one that is safe for her brother.  She could not be a more sensitive or supportive big sister.

So this morning I made some delish "Will safe" vegan banana chocolate chip muffins and I thought I would share the recipe with you guys.  It is EASY and they are so yummy!!  Another great thing about baking this way is that since there are no raw eggs my kids can lick that bowl like crazy without me worrying about salmonella or any other gross things that could happen when eating raw eggs.

Enjoy!!!

Banana Chocolate Chip Muffins

ingredients:
2 cups unbleached all purpose flour
1 1/2 teaspoons baking soda
1/2 teaspoon salt
1 cup sugar
1/3 cup canola oil
4 ripe bananas, mashed
1/4 cup cold water
1 teaspoon vanilla extract
1 cup nondairy semisweet chocolate chips (Enjoy Life brand is our favorite)

Preheat the oven to 350.  Lightly grease muffin tins or use muffin papers.  In a medium size bowl, mix the flour, baking soda and salt.  In the bowl of your electric mixer, beat the sugar and oil, then add the mashed bananas.  Stir in the water and vanilla and mix well.  Add the flour mixture and the chocolate chips and mix.  Fill each muffin tin and bake for 20-30 minutes, until they are golden brown and a toothpick inserted comes out clean.  Makes about 12 muffins.

4 comments:

I'm not a stalker, I just saw your comment about the link not working, so here's a link to my blog... http://nofsahmof3.blogspot.com/

and then I looked at YOUR blog and said, look, the gods have brought me to a banana chocolate chip muffin recipe... YEAH!

Amazing story. I think a lot of moms would seconds guess themselves after the fact, but it sounds like you really just did what we should all do - take life as the learning experience that it is... Take care! g.

thank you so much - for the link and for your kind words. i love reading all about your running adventures with Tonia on her blog and will now look forward to reading yours too! Have a great weekend!

This is so incredible - I can't believe that he is so severly allergic to so many things! I would be terrified of letting my child out of the house.

How scary! My first son was allergic to egg and dairy and my second turned out to be allergic to black beans, raspberries, and lima beans. I went on a major elimination diet before we had him tested at 6 months and figured out what his allergies were. We were lucky though, both our boys outgrew their allergies.

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