Dear Madison: Treatment 2, 3, & 4

Dear Madison -

You are more than half way through what we are calling the "The Magic 6".  The goal is to infuse 6 treatments as quickly as possible to get your immune system up to a theraputic dose that will keep you nice and healthy.  Treatment #2 was a little rough getting you to the dr. office but once you were there you were a total trooper.  You hit your stride at treatment #3. We put the numbing cream on your legs at the house, we went and got a movie (Gnomeo and Juliet), and when we got to the office you jumped out of the car and told me to "hurry up".  What? Two sessions ago you were crying and screaming that you weren't leaving the house. This is when I recognized your "power".  I have noticed it before but it came out strongly this day...the day you made Dmitri blush! I don't know if I am supposed to talk about fabulous people without there permission but this man is fabulous and Madison, you have him wrapped around your finger (and vice versa which is equally important to me). The whole office loves to see you and Dmitiri interact because it is so special! We still have to get through 5 & 6 but I know that we will because Dmitri has unofficially joined "Team Coolidge" whether he knows it or not!  We should probably tell him at some point - he may already know! Thank you so much Dmitri!

Treatment One: Dear Madison...

Dear Madison,

Your first treatment is behind you and I know you are already dreading the next. I know what you MUST be thinking:  How could your parents, people who are supposed to love you and keep you safe, allow you to be poked with not one needle but TWO needles (one in each leg), and infuse some kind of crazy medicine into you that makes your skin itch and swell at the infusion site and then makes you so sore that you can’t even walk up stairs.  Believe me; we are weighing the pros and cons of all the treatments side effects against the consequences of not giving you this treatment. 

Maybe a little background on the treatment will help you understand.  This treatment, this medicine, Hizentra, is used to boost the body's natural defense system against infection in persons with a weakened immune system.  That is you…You have low levels of IgG and that is why you get sick so easily.  You can’t help it but you can help your immune system with this SubQ IgG replacement therapy.

So you may be itchy and a little sore but we will give you Benadryl and ibuprofen for those things.  I would rather handle those side effects then have your body work so hard every day trying to stay healthy!  That has got to be hard work! Your body temperature is not supposed to run at 99.9 every day.  You shouldn’t have to take antibiotics, and steroids and breathing treatments all the time.  These treatments should give your body a little break from having to fight so hard all the time.

After 6 total treatments you will have enough of the medicine built up in your system and then you will only have to do the treatments once a week (at home).  So let’s hit magic # 6 so you don’t have to worry about:

·       Going to school

·       Going to gymnastics

·       Going to Sunday school

·       Going on an airplane

·       A sneeze

·       A cough

·       Drinking out of a water fountain (I still don’t think ANYBODY needs to do that)

·       Taking a prophylactic antibiotic

·       Taking steroids

·       Taking nebulizer treatments every 4 hours

·       Growing

·       Swimming in a pool

·       Having a teacher ask if it’s ok to touch you

·       Playing with friends and family

You are one tough cookie, little Madison.  Thank you for your smile, your resilience, and for understanding why we are doing this (maybe not today but someday)!

But don't Google it!

That is what the crazy hair specialist told me after he handed me the piece of paper he had written  "trichothiodystophy".  This was the diagnosis that he thought Drew had but wasn't sure because he didn't have the right type of microscope.  Drew was 2.5 and Madison was 4 days old and still in the NICU at Presby Plano. So what is a 4 day, post-partum mommy going to do when she receives this kind of news? Cry...  but do you know what else I did?  I ...  GOOGLED! 

I understand why the guy told me not to google. You can find a lot of scary stuff on the web and I found alot of SCARY stuff. But after scary I found "F.I.R.S.T". which is the Foundation for Ichthyosis and related skin types.  This group led me to Dr. Kramer, Dr. D. and the best of the best, Debby T. at the NIH. What if I had listened to that "specialist...