Finding the positive in the negative positives

I took Thomas to the allergist last week and he was scheduled to have skin testing to see if anything had changed in the last two years (two years ago he was negative to all tested foods and environmental allergens except for peanuts).  But I forgot to have him off antihistamines for five days before the test and we had to reschedule to today.

He didn’t enjoy the “pricks” (it was only two panels though…I’ve seen much worse for myself and my brothers!), but at least it proved to be something worth doing.

What that poor-quality phone picture shows is four positive reactions.  In the middle of his back is where they placed the two panels of various environmental allergens (dust, weeds, grasses, molds, trees, cats, dog, cockroach (?!?!), feathers and ragweed.  Of those, his only positives were to “grass mix III” (which includes johnson and bahia – apparently these are not the type of grasses you would plant in your yard, but those that just grow in ditches and other areas and spread rapidly…weed grasses); “tree mix III” (which includes oaks (white oak), pecan and east cottonwood); and bayberry (which includes wax myrtles).  He almost had a positive to cockroaches (I think he said…but it wasn’t quite there). 

Below those are the different control readings.  And below that, on the lower right corner of his back there, under the marking that looks like a circle (but is actually a “P”) is where he was tested for peanuts.  As you can see, since it’s larger than the spot under the “+” sign on his lower left back, it is DEFINITELY positive.

The doctor said that since this skin test showed such a definite positive to peanuts, and his last blood test two years ago also strongly indicated an a peanut allergy (mostly the fact that it had increased so rapidly over a six month period), he didn’t see much point in doing a blood test on his peanut allergy at this time.  While it’s helpful to have a “number” to monitor, I think he basically felt like it was highly unlikely it would be any lower than before at at this time, and it might even be higher.  He wants to give it 6-12 months and then we’ll do the blood test to check the peanut allergy.  He said if it is higher at that time from his previous number (which was almost a seven), he doubts it is an allergy he will outgrow.

That said, he talked with me about ongoing research in the US and abroad to try to treat peanut allergy with allergy injections or oral treatment and he feels confident that in the next few years, it truly might be something that can be treated and improved.  AND, he also said that because Thomas’ three peanut exposures have all led to a “GI reaction” (he has vomited), those are the types of allergies that tend to be “more persistent” (meaning less likely to outgrow), but they also tend to always have the same reaction (meaning he would always “just” throw up and not have a life-threatening anaphylactic reaction).  So in that negative (never outgrow), there’s a slight possible positive in the possibility that he would never have his life in danger from peanuts.

Anyway, now we know Thomas is allergic to more things, but it could be worse (I was always allergic to about 70% of the things tested), and it also explains why he has been sneezing, coughing, sniffling and complaining of headaches at certain parts of the year.   So even though these positives are a negative, I’m trying to find the positives in the negatives! He is now taking a daily medication and it seems to be helping. 

And as for the peanut allergy, we’ll just keep hoping and praying that someway, someday it won’t be a limitation for him.  And in happy news, Parker had his first peanut butter & jelly sandwich today and had no reaction!  I knew he was not allergic to peanuts, but I’ve still been terrified to test it by actually letting him eat it.  I know that sounds crazy, but I’ve spent the past three years looking at peanuts/peanut butter like poison.   I think Parker prefers almond butter because that’s what he knew first, but it’s good to know he can have a PB&J if he needs to!

Coach to Cure MD Ad 2011

Today is the day when college coaches across the country will wear special armbands to show their support for curing Duchenne Muscular Dystrophy. Duchenne is the most commonly diagnosed fatal disorder among children and their currently is no cure, but much hope. My friend Emily's son, Jake, has Duchenne. He is doing great, but fighting Duchenne is something he has to deal with every day of his life. Research is showing REAL strides. A new trial is about to start to try to skip the exon Jake needs to skip. It is really promising.

I think it's great that this has become an annual event.



I hope the football players across the country today take a moment to realize what a gift it is that they can be 18-22 years old and they can run down a football field playing a game they love in front of thousands of adoring fans. This is a privilege a child with Duchenne will never know unless a cure is found. Please consider using your cell phone to text the word CURE to 90999 to make a $5 donation to this worthy cause. The charge will appear on your next cell phone bill. Five dollars from you is not much, but if everyone gave $5 researchers might be catapulted to finding a real cure for this terrible disease that robs too many young boys of the chance to do what boys want to do most...run, walk, play.

Thank you!

Getting a smile

Earlier this year I participated in and shopped at the local semi-annual consignment sale here and scored a huge lot of Thomas trains and tracks and the boys were completely satisfied and excited.  It is that time of year again and this time I scored a few Imaginext play items they had long wanted (like the Batman Batcave).  The boys have been acting like it’s Christmas they have been so excited to play with their new toys.  And since Thomas (and Parker) just LOVE to dress up, Thomas was SO happy to see the new costume I managed to find for $8. 

Yep, that’s our own Mr. Incredible.  He was so excited.  He loves all the muscles it gives him.  Ha ha.

So that new costume surely did lead to many smiles from Thomas. 

As for Parker, every time he gives me an adorable smile I say, “That’s it!  That’s how you smile!”  You may have noticed that in many pictures he is squinting and giving a someone pained look.  He thinks he is smiling.  So we frequently talk about how to give a picture-worthy smile.  It’s not easy.  Here’s what we got today though:

Definitely improving!  He’s such a cutie.  And such a wild boy.  I know why he’s my curly-haired kiddo…it’s a symbol of his personality….wild, crazy, and ALL OVER THE PLACE.

While I was taking a few pictures of him, I got one that gives a little glimpse at how the back of his throat is doing these days.  I’d say that this (you may have to click on it to see it better):

…is QUITE the improvement from this:

His breathing has improved tremendously…I can’t even hear him breathing at night (or ever).  He is still waking at least once during the night most nights, but I’m hopeful that that will eventually improve.  If it does, that will certainly bring me a smile.

Superheroes

Most days Thomas will dress up as someone.  Yesterday he was a construction worker and today he was Robin.  He wanted to be Batman, as usual, but Parker asked for that costume first. 

After a busy day at school and then lots of play when he got home, I guess Thomas (or Robin) was pretty tired.  He laid his head down on the table during dinner and matter-of-factly said, “Mommy, I’m just a tired, tired superhero.”  I couldn’t help but laugh.

Here’s our tired superhero taking a break from playtime a few hours before dinner:

I love his eyes in that picture.  You should click on it to make it bigger so you can see it best! :)

 

And here’s his sidekick (though I guess Robin is technically the sidekick), Batman.  Parker was quite happy to get his turn as the head superhero.

After a while, Batman even let Robin drive him around in the “Batmobile.”

I’m so thankful the weather is getting a little bit milder and the mosquito flocks seem to be lessening.  It sure makes this outdoor time with my superheroes much more tolerable!

Just a little snip

I took the boys for a much needed haircut/trim on Tuesday.  The only person who has ever cut their hair recent started her maternity leave, so I was a little nervous to go to someone new (at the same place).  But the other person recommended this person (and I think she’s who cuts my niece Eliza’s hair). 

Knowing the boys have their pictures coming up at school (I thought Thomas’ were at the end of the month, but I had them confused with Parker’s and they are next week!), I asked the girl not to cut off too much. 

She did Parker’s first and did exactly what I wanted…you can hardly tell he had a trim at all.  Then it was Thomas’ turn.  She didn’t quite cut it as I wanted (it’s too short and not all one length in the front like I like – which makes it do all sorts of crazy things in the morning), but that wasn’t the problem.

Halfway through his haircut, she was trimming near his ears when I noticed this shocked look on Thomas’ face.  He wasn’t crying, yet, or saying a word so I asked what was wrong.  The girl said, “Oooh, I think I almost cut him, but… (she’s frantically checking his ear as she talks)…I don’t see anything…he’s fine.”  I was looking at the same time, and asked her to move her finger.  Yep, underneath it was a flap of skin and it was starting to bleed.  Who knew ears could bleed so much!?!?

Thomas’ shock quickly moved to a minor meltdown, understandably.  I was trying to console him, get the ear to stop bleeding, and not let the girl feel too bad.  Accidents do happen…but I’m thinking perhaps I shouldn’t have to pay for them.  Oh well!  She just kept telling me, “I’ve been cutting hair for 15 years and I’ve never cut anyone but myself!”  Well, leave it to us to be her first.

This was his ear last night…a day later.  It’s healing fine, but I’m not so sure he’ll ever let that girl cut his hair again (nor will I!).