Things You Aren’t Told About: You Will Move Mountains

A year ago today my Starfish and I boarded a plane and flew to Boston. At this point it had been the worst year of her life. In January she had been diagnosed with Fibrous Dysplasia and we spent the next 8 month’s begging her specialists for anything to relive her pain. We were told there was nothing they could do, that they had no idea about her disease… You name it we heard it.

The final straw was having an endocrinologist look me in the face in front of my child and tell me she was not going to see her because she didn’t know what was wrong with her. She never even looked at her chart, I had to explain not only her symptoms but what FD even was. It was truly the straw that broke the camels back to see the look on my child’s face. I was tired of failing her and allowing professionals to not only fail her but to not even care that they were.

So with the help of my friend Sammi’s mom, we found a specialist at Boston Children’s Hospital who wanted to see Starfish for a 2nd opinion exam. With help from some friends and Hospitality House, we had a flight and lodging for a 2 week stay in town so we could get everything we could stuffed in that time. Hopefully we would go home with a treatment plan.

So we spent 2 weeks in Boston; seeing doctors, having tests and visiting with friends. I was finally granted a bone scan, something (along with a biopsy) that I had been begging for all year long and ignored about. Turned out she didnt have Fibrous Dysplasia. She had equally rare Chronic Recurrent Multifocal Osteomyelitis, or CRMO. We were given a treatment plan, instructed to see a Rheumetologist and implement said plan. 

We returned home with answers but mostly relieved because we had a plan. My point in this is that whether it is you or your loved ones… ADVOCATE! It is sometimes the only way to get somewhere. You have to be willing to move mountains and yes, sometimes be assertive to get things done. Remember doctors are human and in so are not perfect, they don’t see all you do. I know my daughter best so its my job to get them to understand when otherwise they can’t.

I’m sure they think I’m a pain in the ass sometimes and that is ok. I know she is where she is now because of the choices I made a year ago. I’m also teaching her so in a few years when she is an adult and out in the world alone, she can advocate well for herself.

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Things You Aren’t Told About: Be the Little Engine

The one thing I want to stress so much to everyone who is on a similar journey, APPRECIATE THE GOOD. Whether it  a good day, a good moment… Even just a good test result… Celebrate It. These can feel few and far between, so in the between you hold onto the good parts. I promise you its what keeps me from snapping most days.

When I got married, my friend stood at my reception and gave me the best bit of advice. She told me “Life, it is like a rollercoaster. You will have your ups and downs. It is necessary because without the lows, how would you recognize the highs?” It works in all aspects of life, be it relationships or circumstances; you just have to ride it out because the highs will come again and it will be worth it.

Today was our monthly clinic day. I dread these days because it usually has bad stuff attached. Today was kind of more of the usual with one small plus, we don’t have to go back for 2 months. Her numbers arent great but havent drastically climbed, her blood pressure is still high but not anywhere that it used to be. Its progress.

We will be starting aquatic PT this week which the Starfish is elated about. We also get to wear a blood pressure monitor for 24 hours at some point, mainly because she is currently on 3 separate  for her blood pressure and that is very unusual. Its a slow road but we are making progress and that is something we choose to celebrate.

So for now my little engine that will chug along and we will take it one day at a time.

Things You Aren’t Told About: Illness = Money

I met the mailman outside today and he passes over a few envelopes. My heart sinks when I see the Phoenix Children’s Hospital logo on the long white envelope. Not the surprise I needed today. I still expect surprise expenses from earlier this year when the Starfish was in the hospital so immediately my mind goes there.

I get a cup of tea and get comfortable, take a deep breath and open them. Thankfully its not a huge pair of bills but two for some copays they claim I hadn’t paid for visits over the summer. Copays I know I paid on the 14th when I was in with monthly clinic. I refer back to my notebook and see in fact I did pay.

One huge piece of advice I can give parents with sick kids, keep impeccable records. Billing is always handled by people and no one is infallible. They make mistakes. Trusting a bill is valid may cost you money you may need down the road so you have got to double check before you sit down and write that check.

I called the billing department and thankfully got a really nice person who was in a good mood today. After examining her very long billing history she found all the credits that showed that I was up to date with them financially (thank God). She thanked me for calling to have things checked and apologized for the error. As I sat after hanging up, I was glad I did that as well, 

When you live paycheck to paycheck, $30.00 is a lot of money, it can go to things like… oh the $100.00 or so a month we pay out for her many medications. We have learned to be organized and diligent. It is something I implore you reading this to adopt as well. You know better; be it your kids or your finances, than the people who do billing for the hospital. Its our responsibility to keep it all in check.

Things You Arent Told About: Mutiny!

Another day, another few doctor appointments. Today features Neurology and Cardiology. You know, ive come to learn sometimes cures and treatments sometimes cause more problems. It can be frustrating bit I am certain 99% of the time it is worth the risk. At least it is for us.

So first off, Neurology, so for about a year, she has been complaining about her arm going numb from time to time. But for about 6 months her right forearm and hand have been numb. The neurologist has diagnosed her with Carpal Tunnel. So 3 months with a brace least 12 hours a day and then we will see if anything else needs to be done. 

15 and carpal tunnel, how crazy is that? I know it seems trivial but for us, its just another thing that seems to be tossed onto the pile if things that are going wrong. More doctor appointments, now Physical Therapy…. have I mentioned we are exhausted?

Our day rounded out with an echocardiogram at the cardiologists office. We will not hear the results about that till next week. She has had high blood pressure for years now so they need to check the condition of her heart. 

It is our thought that her body has declared mutiny over her life. It feels like as we get a handle on one thing, something else decides to check out and give us a hard time. We are just trying to hold on and do our best. I applied for a job recently and have had a few interviews, now I wonder if that was a wise choice. 

I know some have opinions about aspects of our life, I’m learning to ignore them. You as parents will encounter this a lot, take it with a grain of salt. I am a really open person and I try to not be afraid to put things out there. I think it helps others and educates folks which brings empathy and understanding for others and their struggle. Please remember, you may think you know what these people are going through but there is so much we hold back.

We do not want to overwhelm our friends and family. Sometimes our day to day is so unbelievable, its hard to truly put faith that it’s all true. Just know, we are doing our very best by our spawn and most of the time. We need a hug and a kind word. We need UNDERSTANDING from those we lean on for support. If I can do anything with this blog, that is what my sincere hope is.

Thank you for taking the time to read this. I appreciate you more than you know.

Things You Aren’t Told About: Even on Birthdays There’s Bad News.

My child turned 15 today. I woke up to the realization we are in the home stretch if this raising people thing. Few more years it will be planning college and life. 6 months from now ill be teaching her to drive. Next summer, god willing, she can have a summer job. It doesn’t seem like all this time has passed, feels not long ago she was this tiny person 2nd needed me for every single thing and now shes her own person. Making her own decisions. Its so quick.

So, as I’ve told you, life goes on. Doesn’t matter if today is her birthday, things had to be taken care of. She had appointments with Nephrology and Rheumetology today. Good news first, her kidney function is doing much better. Not perfect but certainly somewhere they are comfortable with. Her CRMO meds are doing their job and her jaw has been pretty much pain free for 8 months. We celebrate these things because where she was a year or 2 ago to now is a miracle that I will always be grateful for.

  Now for the bad. Because birthdays don’t mean bad stuff doesn’t happen. She had an MRI 2 weeks ago and they found an Arachnoid Cyst in the right side of her brain. From what I’ve read they are benign and not life threatening, so that is a good thing. We see the neurologist on the 31st so that will confirm the radiologist findings as Well as figuring out why she’s developed neuropathy in her arms and feet.

Adding to the not great news she has to be evaluated and checked for an enlarged heart. Since she has had such high blood pressure for the last year, mostly intended, she runs the risk of an enlarged heartand other complications from that. So that will be coming up soon as well.

So the moral this week is, focus on the good but don’t ignore the bad, especially with special kids. Now, I’m going to go ice a chocolate cake with vanilla frosring because 15 or not, birthdays mean cake!

Things You Aren’t Told About: Time Marches On

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Tomorrow the Starfish starts her Sophomore year of high school. I have no idea where time goes. Seems like just yesterday she was running off to kindergarten and now I am trying to figure out how an immune compromised person takes her PSATs. I am hoping above hope this year is better than the last. She struggled so hard but she only failed 1 class… English. I think I may need to get her a tutor this year.

She is sharing my unhappiness at the old adage, “Time marches on”. Sometimes you just really want to slow things down but time just keeps chugging along, bringing you into the present and onto the future without a care in the world. Here it is already August, days from her 15th birthday and I am over here wondering where in the hell the year has went. I guess when you spend most of your time running to doctors and testing your days go faster than most.

So now our days will be full of Geometry and Biology… trying to figure out how one takes Culinary Arts online, and mixing in doctors and testing. We will be having Sam’s wish fulfilled sometime next year, last I heard so I guess this fast time stuff is a good thing.  Disability called to say her evaluation process is at the end so hopefully soon we will hear about that and it will take a lot of stress off of our family financially. Trying to embrace time and its inability to work with me and give me a breather.

The Starfish certainly helps with that sometimes. Her outlook on life is so positive and optimistic, it is hard not to feel the same way sometimes. So I guess the lesson in this is to cherish all the moments, even the bad ones. Because they are fleeting, and before you know it things are totally different and you find yourself wishing you had paid better attention to things then.

Things You Don’t Know About: Focus On The Happy Moments

  My Starfish experienced her first live concert tonight thanks to a gift from a friend. She gave my girl a pair of tickets to see Counting Crows anf Matchbox 20, 2 of my favorite bands for the last 20 years. Shes grown to love a lot of the bands I grew up with which made this all the more exciting for us.

Now, little known fact about Phoenix… it is HOT. No, I kid. It’s not just hot, this is our rainy season so it is hot and humid. Tonight’s concert was on a 103° evening ans it was sprinkling. So everyone was covered in a nice layer of sweat. But by thw time Matchbox 20 took the stage, it was a pretty full house.

  Our girl had the best time, she is a newly christened fan of Counting Crows now and by the time Matchbox 20 took the stage, she was in her feet, cheering and dancing, even singing along with the band. In the near 15 years of her, life I have never seen such joy on her face. It was hard sometimes not to cry because it was overwhelming. 

  This is a memory I am so glad I got to make with my daughter. It is something I will hold on and cling to in the hard times. I constantly am humbled by the love of the people who I have been lucky enough to call friebds. They make the stress and fears we have a little more bearable. Thanks FloMama for being the coolest auntie a starfish could ask for. We both love you so very much.