Good Riddance 2011!

Dear 2011, I attempted to outreach to you at the beginning of the year to address your aggressive and confrontational attitude toward the Coolidge Clan, January 25th to be exact. I knew early on that there needed to be some additional training/counseling/interventions between the two of us to make our working relationship run a little smoother. I never heard back from you and I guess the lack of communication was answer enough. 

So with the 2012 waiting eagerly in the wings, I am happy to wish you... good riddance. You were difficult, some would say "challenging" but that is too positive a word to describe you.  You were relentless and downright aggressive.  You didn't just affect us; your hostile attitude got Team Coolidge all riled up.

You forever changed me and you brought me to my knees but after a nice lunch, with a dear friend, I recognized that you did not break me. You tried.  You tried really hard and I do not appreciate that type of style.  There are books that address this... just saying.  But YOU. DID. NOT. BREAK. ME!
 I endured all of it. Stuff I can't even remember and the stuff that I can, like: 

• Chase's school schedule
• The decision for Andy to stay at home
• Traveling with Chase
• The weekly Hizentra treatments for Madison (at home and in the office)
• Endoscopies
• Swallow studies
• Funky ear infections
• The new diagnosis that Chase and Madison both have additional immune system issues
• Pulling Madison out of school... again
• Conversations of pulling Chase out of school b/c he is an "immunologic time bomb"
• The need for a Hematologist
• Drew's stomach bug that turned into IV fluids
• The stress of keeping my job while balancing all of these crazy appointments

 I sweep you under the rug, 2011!  I have a few more gray hairs, a few more wrinkles, a few more pounds but I have a bigger, badder, tougher, stronger Team Coolidge that if 2012 doesn't understand that, she is in for a world of hurt!

P.S. 2011, I am done with you - you made me want to cuss...Which should be a country song if anybody would like to write it!

Christmas of Experience!

The Christmas of Experience turned out to be quite the experience!
Sometime between Halloween and Thanksgiving I got fed up with all the "stuff" in our house. It was actually probably long before that but I just didn't realize what it was that was bug'n me. I was tired of the girl's telling me they were "bored", I was tired of the playroom being covered in toys that had been dumped on the floor, and I was tired of the TV being the "default" activity. Once I realized what part of the problem was, operation "Less is More" started. The upstairs was cleared out. Closets were purged, toys were donated and whatever was left over was organized and put away. That's when I decided on a "Christmas of Experience" for the Coolidge clan. Instead of "things" I wanted to get the kids "experiences": horseback riding lessons, rock climbing, tae kwon do, tickets to Peter Pan, stuff like that. No clutter, no mess and maybe even fun!

I was expecting the "Christmas of Experience" to have the most impact on the kids and to start after Christmas was over and the gifts had been opened. I was wrong! The kids were definitely impacted but the most impact was had by me.

Our Christmas was jump started by a VERY' generous family at the church that had heard about the kids and the year they had medically. They knew we could pay the mortgage and that we weren't at risk of having the power turned off, they knew all that. They just wanted to make our Christmas easier. What an overwhelming concept to process. I said 'no" initially to the generouse offer...We are not worthy of this, there are other people who need this more than we do... but when this family walked in our house with boxes of gifts (multiple boxes of gifts!) and their 3 super-nice boys carried in the full size bed that would allow me to sleep with Madison when she is sick instead of Madison sleeping with me downstairs, displacing Andy to the couch for days, sometimes weeks; when this family removed the burden that I didn't even know I had... I had a huge sense of relief. I still am not sure that we deserve this generosity but this "Christmas Experience" made a personal impact!

And if that wasn't enough, the "Christmas Experience" continues. The very next night, we receive a text asking us to "check the front porch". And what do you think is waiting on the front porch but a GIANT bag of presents. These presents weren't just for the kids; these presents had special treats for Andy and me too. These present came from the "elves". So the kids are nice and excited when the next night, a new text indicates to check the porch, this time the bag of wrapped presents (everybody knows that Santa doesn't wrap) are from Santa! Chase can barely contain himself and everybody believes in Santa (I guess Santa DOES wrap); another AMAZING Christmas experience.

In December we had blood work, weekly infusions, IV fluid replacement, new diagnoses, referrals to new doctors, swallow studies and very little PTO. The year of the "Christmas Experience" with multiple people SWOOPING in to take care of things that I didn't even recognize that I needed help with... was a truly AMAZING experience. I know that the kids will have an amazing 2012 and I hope that someday I can duplicate this experience for someone else’s family. 

Thank you special family, special elves and a very special wrapping Santa.  The Christmas Experience was a HUGE success!!!

Treatment #17

Madison and I just completed Hizentra treatment #17. I include myself as completing the treatment because I am the one administering it - I feel that counts for something. There have been several weeks where it took everything I had to maintain the required perky, happy, "this is no-big deal" attitude. The calm-cool-collected act is not always easy to maintain while drawing up a syringe full of thick, sticky medicine with a 9 year old screaming that she doesn't want to do it and, in fact, she WONT do it, and then attempting to stick her in the leg with the thick, sticky medicine while she is swatting at your hands and hoping you get the stick in the right place. 

It's about control - I totally get that. She can't control when she gets sick so she just wants a little say-so on these treatments.  These treatments are still a little unsettling to her.  She takes the weekly infusions and still gets sick, how is she suppose to understand that?  I see the improvements.  Her lab work shows that her IGg levels are more than doubled, they are in the middle of the normal range and when she does get sick it resolves quicker and with less RX intervention. But showing a 9yr old a piece of paper with her IGg levels isn't going to make her understand the benefits of the medication. 

The solution for now is to take the infusions back to the doctor's office.  This will let "Mom" go back to being "Mom", let the house go back to being a "home" and let he FED EX truck go back to being a truck that delivers fun stuff - not medicine. We will have an "appointment" at the doctor's (we had "appointments" when we did them at the house but Madison wanted control so there was always drama with the home appointments).  She will miss a little more school, I will miss a little more work, we will pay a little bit more, but my hope is that she will feel more comfortable in her own house, around her own family and not have to worry if she is going to get stuck today.   Madison, you will not get stuck today!

I am not a nurse

I am not a nurse… I don’t think I ever thought I would be a nurse and I don’t play one on T.V.  I had a friend tell me today that I have earned my “honorary” nursing degree.  No offense, but I do not  want the honorary title of R.N. but this Hizentra infusion thing has made me wish I had some form of medical training!  Why am I freaking out about doing this infusion at home, you ask?  Do I have a fear of needles? Nope, I do not! Do I have a problem with sticking my child with 2 needles?  Nope, because I don’t even have to do that because she does it herself. What makes me cry (literally) is having to get the medicine from 2 vials to one syringe.  And here is why, my problem is that I am Rachel Ray (a mess in the kitchen) and Hizentra needs me to be Giada De Laurentiis ( a little more precise)

My example; I decided that I would prepare Boston Cream Pie Cupcakes for my dad’s birthday.  This is his all time favorite dessert!  I made the butter cream cake per the instructions and then started on the vanilla cream.  By the time the cake had completed cooking… ooops, I had a little problem getting the cake out of the pan.  Being the flexible person that I am, I decided that these Boston cream pie cakes would be Boston Cream Pie Balls!  Let me take you back to Hizentra… you can NOT make Hizentra cream pie into Hizentra cream BALLS!  You have to measure precisely; you have to get all the bubbles out to make sure your measurement is accurate.  I have to measure the content of one vial and then measure half a vial of the other one and throw away approximately 250$ worth of medicine at each infusion. There are so many steps of preparing the infusion that I don’t even worry about the actual infusion. Did I mention that I have 2 Epi pens and a sharpies box but that I am not a nurse and I don’t cook that great either…

Dear Hizentra!

You have a big responsibility starting tomorrow, Hizentra.  I hope you are up for the challenge!!!! Tomorrow is Madison's first day of school since April 2011. She still is not 100% recovered from her last infection that she started on Sept. 1st but we are sending her to school regardless.  How do I know you ask???. Well, I have to know this stuff. I keep up with the "which one's", the "what kinds" and the how many's" and I had to have a signed medical release saying that she can go back to school. 

Hizentra, I am looking forwared to you doingy your job and in 3 weeks when we do blood work, I am expecting Madison to be healthy, still in school and for her blood work to show us exactly what we are paying you for!!!!

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...

Normal? Unique?

I have been thinking lately that all I want is for everything to be "normal".  I was talking with a work/friend who doesn't really know my situation but she descriped it as "unique".  But when she said that word, I paused, it seemed to descirbe my situation.  I actually loved that word "UNIQUE".
     I grew up in a "normal" family with a mom, dad, sister and a brother. We went on family vacations, all the kids made good grades and nobody was ever arrested.  Normal or Unique?
     I graduated high school, went to college, made a pit stop back at home, worked at a bar, got my masters, met a man with perfect teeth and got married... Normal or Unique?
     Married for 5 years before we decided to have children (didn't even know that we were going to have kids) and had a perfect first pregnancy.  I taught  5 aerobics classes a week, just like I did before I was pregnant and went into spontaneous labor at 35.5 weeks while Andy was out of town on business.  Normal or Unique?
     All my babies were born at 35.5 weeks.  Drew was 4#, Madison was 4.8#, and Chase was 5.2#.  Drew spent 8 days in the NICU, Madison spent 23 days and Chase spent 19 days in the NICU.  I never took a baby home from the hospital per insurance protocal. Normal or Unique?
     All my kids were born wtih an genetic autosomal recessive condition called Trichothiodystrophy.  There are only 137 people identified in the world with this condition and 22 in the U.S (this is Andy's math).  But we have 3. Normal or Unique?
     We are in a research study at the National Institutes of Health.  We get our eyes checked at the National Eye Institute. We get to actually sit and chat with doctors about our experiences and discuss options and possibilities... This is only UNIQUE! I have a few fabulous key doctors that are truely amazing and they too are VERY unique and absolutely NOT normal!
     We are waiting to see if 2 out of 3 children are going to be approved for sub Q IGg therapy to help boost their immunesystems. Normal or Unique?
    I had a friend tell me once that "everybody has s@%&t" and that nobody is going to trade and she is correct... After thinking about it, I will keep my "normal".

2011 ,,,You can't scare me!

2011 I am sensing some aggression toward the Coolidge clan and I am here to tell you that I am very happy to work with you.  There is really no need for you to continue to flex your new authority because I actually respect you, am excited about your arrival and looked forward to meeting you back in 2010. Sure, I need to know your style and understand your expectation but I think a brief meeting to review these points could be arranged. Just give me a few dates, I will be happy to make some time.

I am just wondering what the source of your hostility is? Did you feel that 2010 was too relaxed, too accommodating?  I agree it had a different way of doing things than 2009 for sure...Allowing us a full 10 months to meet our family deductible... you may not roll that way.  That's cool but I really don't feel we need to rush it this year. Do you? One ER visit is fine to start. Stitches are great! But I really think maxing out at 3 dr. appointment a week is appropriate, one for each kid?!  I don't think we need to add another specialist in at this point either. Let's make a deal and stop with the fever on at least one of the kids so that they can go back to school and I wouldn't mind if you reduced the treatments down from every 4 hours round the clock to just every 4 hours during the day. That is totally do-able!

Oh and thanks for hooking Andy up with a job... Oh, wait that was 2010.  Hmmmmm, well, just so you know, this new job takes him out of rotation so it really would be helpful if you could ease up a bit! 

2011 this is my first outreach to you and I hope that we can find a nice middle ground in the coming weeks. I mentioned this previously and I meant it, I am not scared of you - I actually respect you, but subsequent communication may not be as pleasant.  AC

Try, try again!

Well, I was inspired to start a blog again and I couldn't find the login/password to my old one... so I just thought I would just start over.

Let's see how it goes.