Primary Immunodeficiency

Saturday afternoon as I sorted the mail, I wasn’t expecting a sucker punch. But I got one. There in a seemingly innocent receipt from one of our specialists was a new diagnosis for my daughter. No explanation. No preparation. Nothing. It was just listed there between Unspecified asthma and Other allergic rhinitis like a harmless friend.

But its not.  In fact, nine vials of blood were sent to the Medical College of Wisconsin (the only center in the country to run the incredibly specialized tests that she had to have) last spring to see if maybe we might have some answers. And we were told no. That the tests were inconclusive and that we should just stay our course and not change treatment.

And then bam. There in black and white and insurance codes was D83.0…  that’s Common Variable immunodeficiency with predominant abnormalities of B-cell numbers and function .. for those untrained in insurance codes.

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Guys, that’s a primary immunodeficiency and we are smack dab in the middle of a horrible flu season and my child is getting no preventative or precautionary medical treatment.

I am RUNNING SCARED!

You would think by now I’d be use to this kind of crap.

I’ve been a parent of a sick child with rare diseases for eighteen years.

But I’m still scared.

Tonight as we face the week ahead, all I can do is pray for my sweet resilient daughter and pray for her protection. Her incredibly complex medical picture makes easy answers and typical protocols not work for her.

So please you guys out there.. if you are feeling achy, tired and run down, do me a favor and stay far, far away from my girl. I desperately want to keep her home the next couple of weeks, but that isn’t possible. We joked tonight, as we have many, many times over the years about needing to get her a bubble.

Tonight my laugh was brittle.

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No wonder I don’t have my Christmas Cards ready to mail!

I’m sitting on my couch drinking my second cup of coffee and enjoying a Christmas cookie for breakfast. I thought about getting up and going to work out… but it is the first day of Christmas break and I’m going to just enjoy a few minutes of peace instead. Well, it’s peace-ish..Kylie has already been up for an hour and a half and is talking to me. It’s only 7:30am.

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I had the best intentions of doing more blogging this fall and I really wanted to get Christmas cards made and sent out.. but life has been BUSY! I realize that is always my excuse, but it’s the truth!!

So instead of recording experiences and prepping cards, I’ll just hit the highlights since my last post.

Lexi turned 13!! We had a family party and then she and three friends spent the night at a hotel with an indoor pool and had a blast. I had an adjoining room and one of my friends came over and scrapbooked with me! It was a fun party.

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Doug turned 50!! I surprised him with a trip to San Francisco. We loved it!! I need to blog about our trip…

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We hosted our family Thanksgiving. We learned how to make dressing and played outside. We had a great day of just being together.

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Kylie was in her fall safari themed musical at school. She made her own ears. She is not just creative, but she makes useable items as well. Super cool.

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Lexi auditioned for Junior High All Region Band and made it! So proud of her. It is rather hard to bring home your french horn and practice when you have been on crutches for a few months!IMG_0961

Lexi broke her right ankle the first weekend of September. She has been either on crutches with a cast/boot or in a boot for more than three months. Another MRI was done this week and she sees the doctor the day after Christmas to reevaluate. This is some slow healing.

Then in mid November, Maddie experienced a 50% foot drop. For no reason at all. Just one day her right foot decided to not work. The doctor said that it is a reality of her autoimmune disease. These things will just happen. So she is in a boot until the nerves in her right leg decide to work again. Yes, that means we have two red hair beauties that are almost the same size in right boots. Yes, we stop traffic!

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Kylie got her first pedicure. Our lives are so very busy with Almost Adult 1 and Teen 2 that Child 3 gets shuffled back and forth and back and forth. It was nice to just chill and do something with Kylie that wasn’t school related.

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We decorated for Christmas.

We watched Maddie at the Yellow Jacket Football games. Our football team advanced in playoffs to be part of the final four. It was so cool to watch Maddie and the band perform at AT&T Stadium (Home of the Dallas Cowboys). Yes, Maddie performed each week in a boot!

Kylie got her braces off.

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Lexi and Maddie both had band Christmas concerts.

Kylie saw Santa

Doug and I saw Santa after we ran a local 5k…

We had Maddie’s senior pictures taken. They are amazing and I can’t decide which ones to buy.. and the reality of her growing up and leaving home is setting in…

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And I finished my Superintendency Internship! Along with everything else in our lives! I recorded over 150 minutes of video evidence of me presenting to organizations and/or interviewing district administrators about school districts, I documented over 150 hours of research and service within our district, completed the course work that accompanied the internship and I took the certification test and passed! It is so very nice to have this checked off as complete on my list of things to do!

When I look back at the highlights of the last couple of months, it is no wonder I don’t have my Christmas cards ready!!

So there you have it. I’m hopeful that this spring things might not be quite as hectic and I’ll be able to blog more. I also have some goals for the spring. Don’t worry. Nothing big. No new course work for me.. just goals like “make better food choices” and “clean the bathroom”.. things like that.

Thanks for sticking with me and have a great 2017 holiday season!

Transitional Parenting

Transitional Parenting.

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Maddie and Me. Photo by Amanda Akins Photos

That’s the kind of parenting that I am doing right now with my daughter who is a high school senior. Actually, I’m struggling to be a transitional parent as I am so used to being a hands on all the time mom… and still am to my 12 year old and 8 year old… but my high school senior is very ready for me to let go, and let her go.

But oh this is hard.

I’ve heard all of the stories for years. I didn’t doubt them.

But it is different when it is YOUR CHILD!

For the last almost 18 years, my entire world has been wrapped up in keeping Maddie well. Every decision, every plan, every possibility has been weighed against the potential medical response that Maddie might need. I can’t explain it really. Maddie’s medical needs have been an ever present issue. And now, it is terrifying to let go and help her walk away and prepare for college.

And she is doing it.

Maddie applied for college the first weekend applications opened. She was accepted almost immediately.

Maddie has been to a scholar’s preview and has accepted her first scholarship.

Maddie is taking ownership of her scholarship essays and telling me to butt out.

Maddie is ready to take on the world.

Her momma might need some counseling.

It really is amazing how wonderfully Maddie is doing right now. She is the healthiest that she has ever been. She is confident and strong.

These were the days that we prayed for when she was little and things were so scary.

So we are in a time of transition.

May God have grace on parents of high school seniors!

 

 

Open letter to Pediatric Specialists

This week we took my daughter Maddie to a new specialists. This was her 22nd Specialist. Twenty-two times we have sat in a specialist waiting room and have answered countless questions. 22 times. This number doesn’t even include dental/oral specialists, physical therapists, and all the other extra doctors/practitioners we have seen over the years.

We left frustrated.

We left a little more resigned.

We left a little more heartbroken.

So here are my thoughts, not that any specialist will ever see them.. but it makes me feel better to get them on paper. I realize that there are many specialists out there doing a fantastic job and making a huge difference in the lives of children (Dr Wasserman is our hero!) But for every incredible doctor we have seen, we have a handful that have left scars.

Those scars hurt.

And when your whole life is about finding help for your child, having a specialist add to the wound is wrong. I truly don’t believe they realize what they are doing… so here are my wishes and recommendations:

  1. My child has a name.
    Please make an effort to talk TO my child, not at my child. Even better, call her by name! The best way to make a connection is to find a few moments to get to know the patient. I realize that you don’t need a connection, but WE DO!
  2. Read the medical chart before entering the room.
    If we are seeing you, the likelihood is that there is a reason! Please don’t ask us simple questions about diagnosis and referrals, we need to see that you have read the chart and have made an effort. And really, when I have to explain what the primary diagnosis means or how to spell it, how can you expect me to trust anything else that you have to say?
  3. Honor the work that we have made to get here.
    You may not agree with what other doctors have done or said in the past. In fact, you may not see any reason for us being in your office, but please honor the work it has taken to be sitting in your exam room.
  4. Listen
    When you ask a question, listen to the answer. Don’t assume that you already have the answer. We can tell and the best way to get a child to stop answering your questions is to show her that you don’t really care what she has to say.
  5. Don’t discount our experiences
    My child has been sick for 17 years. I have sat in countless doctors offices and have experienced more than you could ever imagine. My daughter is in the 1% club for side effects, allergies, and illnesses. I’ve lived through the fine print! Please, don’t discount our experiences. Just because we don’t describe it exactly how you read it in the textbook doesn’t make it any less valid.
  6. My child is more than a test result and quality of life matters
    I realize that your care is driven by and dependent upon test results, but those things don’t mean much to me. I care about my child and the fact that she is hurting. When tests results mean another dead-end, can you please offer more than “well, at least we have another no..”
  7. Do a thorough examination
    My daughter told you that she had seen 21 other specialists for a reason… She didn’t like your vibe. You then proved it by doing a minimal examination. bummer. You proved you didn’t care right then.
  8. Acknowledge that you don’t have the answers
    After 17 years of consultations and testing, I don’t expect you to have the answers. I pray daily that you do, but I don’t expect you to do so. So instead of brushing off symptoms and clinical observations, acknowledge that you don’t know what to do! We will honor that and invite you to join the journey.
  9. Imagine life in our shoes.
    I’m guessing that living life as a speciality doctor gives you the understanding that you are the smartest person in the room most days. Well, being the smartest person in the room may or may not be the case, but you could at least be empathic! I don’t imagine you have ever considered what it would mean to you and your mindset if you had to go through life knowing that no matter what you did, where you looked, or who you talked to, you couldn’t make things better/heal/fix your child!
  10. Please leave me with hope
    At the end of a consultation leave us with hope. Please. Instead, after sitting through an almost 2 hour visit you said there was no reason for a follow up unless the blood work came back “icky.” Really? How hard would it have been to leave us with the “I’ll be in touch” or something tinged with hope?! But to make a decision that we aren’t worth your time before even seeing test results? really? nice.

So what do we do? We continue to fight. We continue to research on our own. We continue… It seemed awfully easy for you to look at us and say that the current medical research doesn’t have a unifying diagnosis for my daughter. But it’s not easy for us.

and so we will continue the fight, we will continue to search, we will continue to hope.

Cause Maddie matters.

The quest continues with Specialist #22

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Today we are meeting specialist #22.

Yes, today will be the 22nd time we have sat down with doctors who have chosen to specialize in a branch of medicine and have hoped for answers for Maddie.

I’m hopeful. I have to be.

But I’m not “getting my hopes up.”

Over the last 17 years we have learned resignation. Dang.

But we have never given up. We have never quit. We have never stopped searching for answers.

So today, we go meet another doctor. We tell Maddie’s story again.

Maybe, oh please, maybe today we will meet a doctor willing to captain Maddie’s uncertain and uncharted medical ship.

We have to hope.

Sandwich Parenting

Sandwich Parenting… parenting your own children and parenting your parents. It isn’t easy. Maybe that’s why it’s called that, cause being caught inside both ends of the spectrum means that you end up smooshed like a piece of expired bologna.

Today was one of those days.

 

I don’t put this out there to get a woe is me. I am not a martyr. But I am very much the mom of three kids that need me and the daughter-in-law turned parent figure of a very vocal and needy mother-in-law. My husband takes the brunt of his mother’s ire, but man, oh man, parenting a parent while parenting your own children is difficult.

Below is a snapshot of two REAL CONVERSATIONS this morning…

with the 7 year old

Daughter: Can we go to the storage building?
Dad: Why?
Daughter: To get a dollhouse couch.
Dad: Not today. We are all sick and getting in the storage building would be bad for our allergies.
Daughter: (Tears) Why can’t I ever get what I want? Why don’t you understand me?…

 with the 77 year old

Mom: Can we go to the storage building?
Son: Why?
Mom: I want to look for some perfume.
Son: Not today. We are all sick and getting in the storage building would be bad for our allergies.
Mom: (Tears) Why can’t I ever get what I want? Why don’t you understand me?…

It’s the daily conversations like these that wear on your soul. You expect to have fights with your kids. That’s part of parenting. But having duplicate fights with a grown woman are hard to take on a daily basis.

What is truly frustrating to me is that I watched my father-in-law have these same conversations with his mother and Doug’s mom wasn’t happy with incredible stress that was placed on her husband because of it. By the time I joined the family Doug was a grown man and his parent’s were retired while caring for Doug’s dad’s parents.  But here I am watching the same situation, next generation, but our children are small enough to still need lots of parenting. I am trying my absolute best to not be bitter. Some days are harder than others.

So for those of you out there living in the land of sandwich parenting, let me say, you are not alone. It is tough and it feels like no matter the decision you make for your parent it isn’t the right one, but hold on and enjoy the very rare and brief moments when all the ingredients in the sandwich create a masterpiece.