Here We Go Again

It seems like every few months, just as we are adjusting to Grayson’s current issues, something else emerges.

A new symptom has popped up in the last week- headaches (maybe). For about a week now, Grayson has been grabbing his head- either the sides of his head near his temples or the back around his neck. And he either cries or whines when he does it. I let it go for a few days, but yesterday he was all sorts of grumpy (and pukey) on top of grabbing his head, so I took him to the doctor to rule out an ear infection (and yes, I also thought of teething, but there’s no sign of any teeth).

Sometimes, I really wish Grayson could just tell me what’s wrong…or at least point to what hurts.

Honestly, I was hoping it was his ears, because that would easily explain the head grabbing- and ear infections are “normal” and fixable. But is anything with Grayson ever normal? Not so much. Ears were perfectly clear, and Dr. D even ran a strep test- negative. We left the doctor with no real answers, but really, all I went for was to rule out ears, so I shouldn’t be disappointed we didn’t get anything else. Oh, G also has a pimply rash on his cheeks, but Dr. D thinks that is from all the drool and laying in drooly-wet sheets when he sleeps (G is no longer swallowing-grrr, I know-so the saliva has to go somewhere).

Headaches (migraines) are yet another symptom of Mito. My heart is breaking that here we are with something else to add to the list. Of course, I’m not absolutely certain that’s why he’s grabbing his head, but we were at a friend’s house this morning and he started doing it, and was very fussy. We gave him Advil and he stopped the head-grabbing and was a lot happier. Hmmm.

Next week is going to be exhausting- three specialist appointments in a row-Monday, Tuesday and Wednesday. But we need them. We see a pulmonologist Monday- it will be our first visit. Tuesday is GI, and I want to discuss possibly trying a different formula to see if that would reduce the vomiting episodes, and also to see if he wants to do another swallow study. G’s OT doesn’t think it’s safe for him to drink liquids by mouth right now- he doesn’t swallow and the liquid just sits in his throat and makes his breathing gurgly. Not good. Wednesday we see Dr. R (neurologist) and I am SO GLAD. He’s going to love the list of questions I have for him- ha! I want him to interpret the muscle biopsy report, and I want to discuss the headaches, the supplements G is on and another we may want to add, blood results he ordered last time, seizures, and if/when we need to do another MRI.

This afternoon, I got a call back from the Mito clinic in Houston. The first available appointment is not until July. I am honestly ok with that, because by then, we should have all the results back from the biopsy as well as another completed appointment with our geneticist.

Forgive me if a lot of my posts on this blog are turning into a medical journal for G. I’m really, really bad about keeping written records and this is an easy and convenient way to write down my observations of what’s happening. I’ve used this blog as a reference many, many times to remember when we saw such-and-such doctor or had such-and-such test run. As always, thank you so much for your comments and support.

And now, so this post isn’t too boring/depressing- here’s some pictures from our day. Today was a BIG day for both of us- Grayson’s first ever ride in a shopping cart! We got a new pad for the cart with pillow things on the side to support him. Here’s our first few seconds at Target:

Woo Hoo! This is fun!





And then about 5 minutes later when he toppled over and conked his head on the side of the cart:

I’m over it.

When we got home from Target, we had about 20 minutes to kill before bathtime and it was breezy and beautiful outside, so we hung out in the yard for a little bit (thank you J for the walker- it’s perfect!)

Headache?
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Winter is Here, but Spring is Coming

We got a package in the mail yesterday from a friend. Inside was a precious, handmade gift and this letter:

Ryan and Elizabeth,
I’ve been tracking your journey with Grayson through Elizabeth’s blog. I was especially moved by your friend’s description of living with a special needs child. I don’t have a child, but I could relate to the feeling of being prepared for Italy, but instead, finding herself in Holland. I have taken that very trip. I was going overseas to study in Italy, but instead of direct travel, I spent a miserable week in early January in Amsterdam. It was so cold your eyelids would freeze together. I was jet-lagged and restless in a country where I didn’t speak the language, had no friends, and my wardrobe was ill-equipped for the weather. The few times I ventured out it was to discover that it was so cold the restaurants could not cook and only had cold, raw salted fish to eat, and the paths I thought were sidewalks were actually a disgusting frozen river. For me, I was only there a week, but I vowed never to go back. It had tainted everything I’d ever felt or hoped about Holland. After a few months, some people asked if I would like to travel back to Holland with them. NO THANK YOU! I knew it was not a place I ever wanted to return, but, after much persuasion, I begrudgingly agreed to return. It was spring and oh! how my hated place had changed. The tulips were out, the windmills were running, the snow was gone, and the sun cast a new glow on this place I had vowed to hate for life or longer. There was life, there was change and finally there was beauty…only I could not see it in the middle of winter.

I know this is different from what you are experiencing. I only write this to remind you that, YES, winter is here. Sometimes it is bitter cold and we cannot see that it will ever end, but always remember spring is coming.

You are forever in  my prayers and my heart.

So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand. Isaiah 41:10

Love  you,
Tiffany

This is what Tiffany made for us- it is so precious and perfect.

Waiting

Grayson’s surgery was 4 weeks ago today. We were told we wouldn’t get the results of the muscle biopsy for about 10 weeks, which to most sounds like an incredibly long time of torturous limbo. But for me, I was ok with that timeframe. You see, I am terrified to get the results. I am afraid Grayson has Mitochondrial disease. And I’m also afraid he doesn’t.

If he does have Mito, it means a lifetime of struggle for him. It means we are just at the start of this journey, which already feels like I’ve run a marathon, sprinting the whole way- and I’m winded.

If he doesn’t have Mito, most likely the above still applies, but then…WHAT DOES HE HAVE? Because he has something. And we’ve already ruled out all other possibilities that have been mentioned. I need whatever is wrong with him to have a name. I need it to have name so doctors will take us seriously. So we can have a protocol when we are in crisis and need to be in the hospital. So we can give him the right medications and therapies safely. So I can connect with other moms dealing with the same thing.

So I’m scared he does and I’m scared he doesn’t. And then there’s the thing I am dreading the most: inconclusive results.

This wait has been ok with me. Ten weeks of sort of an “ignorance is bliss” kind of thing. Except I didn’t exactly get my ten weeks. Our pedi called the other day to check on Grayson and also to tell me one of the biopsy test results was in. She admitted that she didn’t understand everything in the report and I would need to consult with genetics. I went to her office and picked up the report, because even though I don’t understand how to read a lot of it, I had to see it.

The report is full of numbers, percentages, and descriptions. The results are definitely NOT normal. Grayson’s mitochondria are enlarged with abnormal patterns and densities. There are values that are too high and values that are too low. The report even says “Features suggestive of a mitochondrial myopathy”. But then the dreaded phrase, “…We cannot confirm or exclude a diagnosis…”.

I talked to the genetics nurse. She said she rarely sees children diagnosed with Mito based on this one report. That the other report (which will take the full 10 weeks) will be more definitive. I hope so.

Yes, it’s been a frustrating, maddening few days. But there’s been some bright spots too:

  • I made a new friend today. I’ve been reading her amazing blog for awhile and emailed her this morning. Turns out, her daughter and G-Man are just a few months apart in age, have almost identical symptoms, and she is struggling with lack of diagnosis too. I can’t wait to get to know her better.
  • Ryan, Grayson and I got the most incredible, amazing gift delivered today. I am hoping the person who sent it will let me blog about it, because it really does deserve a post of its own.
  • A representative from Division for Blind Services came to our house this morning. She told us about a conference for families of vision impaired children that’s happening next month- very close to our house! I went to register and realized the registration fee was way out of our budget. I emailed our rep and asked if there was financial aid available- she said the agency would cover the whole thing! Just shows it never hurts to ask!
  • It was 80 degrees in Houston today- gotta love springtime weather in February! Ryan’s team had a tournament today so Grayson and I went to our first softball game of the season. G was looking extra precious in his seersucker baseball outfit (loved that I had an excuse to dress him in it)

Oh, how I love this little guy. He is just the best.

17 Months!

Dear Grayson,
Today you are 17 months old. One more month and you will have been with us (on the outside) for a year and a half. I’m trying to remember life before you, and I can’t. I can’t imagine not knowing you, or not having you here with me all the time.
Oh sweet boy, it’s been a really tough month for you. Your surgery caused complications that made you really, really sick. It broke my heart to see you feeling so crummy. Thankfully, you bounced back and are now your happy, silly self again.


The other day, I broke down and bought you a Jumperoo. You love to play in them at your friends’ houses, and I need something else that can entertain you so I can get laundry and dishes done. You love it (although our house definitely now looks like a daycare with all the contraptions and toys).

Your tube is still working great- you are gaining weight and everyone comments on how healthy you look! You are still throwing up at least once a day, which worries me. You are SO sneaky- I turn away for just a second and you have that tube in your mouth- it’s just too tempting, isn’t it?

You got your 3rd haircut this week- we love Ms. Monica for coming to our house to make you so handsome!

This coming month, we have a lot of doctors appointments, but also have some fun things planned, like going to see Daddy’s softball team play in a few tournaments and lots of play dates with friends.

I’m sitting here with a stack of papers with big words, lots of numbers and tiny print, all about you. There’s ratios and percentages, descriptions of chemicals, enzymes, and processes, all about you. I don’t understand what 90% of it means, because it’s complicated, scientific stuff that’s going on in the cells of you body. Pages and pages, all about you. But as much as those numbers and fancy words say about you, there’s a lot about you that a blood test or biopsy won’t reveal. For example, you still love to be held and lay your head on my shoulder. You love when people sing to you (especially your Grammie). You make the sweetest sound when you suck your thumb and I could listen to that sound forever. You are Fearfully and Wonderfully made. You are so, so loved.

Happy 17 months G-Man.

Love,
Mommy

Daddy Time

G normally goes down for bed between 5:30 and 6:00 and sleeps 12 hours without waking. We started him on the Mito cocktail supplements a week ago, and they are affecting his sleep somewhat. He’s been waking up crying about an hour after we put him down, and generally seems more restless. Tonight he absolutely did not want to go to bed and let us know it, LOUDLY. He was WIDE AWAKE until about 8:00- waaay past his bedtime. Thankfully he’s sound asleep now.

The positive of this is G spent some quality time with his daddy, who he doesn’t get to see much at all in the evenings. G thinks his daddy is SO FUNNY and has the best head and face for kissing (and gnawing on- ha ha!)

Ha ha! Daddy is hilarious

Checking out Dad’s Energy for Life Mito band

Daddy’s hand is better than a teether

Both boys getting sleeeepy

If you have a minute and a half and want to see some epic drool and adorable baby-chatter, watch this…hee hee. I can’t stop giggling.

Happy Valentines Day!

My littlest Valentine…one year later. He’s grown so much…sniff sniff.

I had a pretty good day with my lovies. Ryan knows better than to buy me flowers or chocolate, and the key to this girl’s heart is Mexican food. So after his dentist appointment this morning, he stopped and got me breakfast tacos. He also posted this early this morning…so sweet. I definitely have a keeper 🙂


I told Grayson he better not throw up on his super cute Valentine’s shirt and he obeyed me- until 4:00…sigh.

 Ryan has his first softball game of the season tonight, so I’m hanging out with the (sleeping) baby and the pups. Nothing better than puppy love…

I know I have taken this EXACT picture about 100 times in his life- poor G- ha!

Happy Valentines Day friends- hope your day was filled with love.

Goodnight!

Monday and Money

Oh Monday, Monday, Monday. I hated your guts this morning. You redeemed yourself around 11 and things turned around for the most part, but you still wear me out.

Yesterday I thought we were turning a corner. Grayson didn’t vomit at all, all day- the first vomit-free day since his surgery. But early this morning, I woke to the sounds of him retching in his crib. When I went to get him, the poor thing was staring aimlessly at the ceiling, his face, jammies and crib sheet covered in regurgitated Pediasure.

I stripped his soiled clothes and went to change his diaper- bone dry. Like clean and dry as a brand new diaper straight out of the box. And he’d had that diaper on 12 hours. Hmm. As I was making coffee, worrying about dehydration and the fact that I had hours before our doctors’ office opened, he er, definitely needed a new diaper. Along with that fun, he wet his diaper- a lot. So what did he do- hold it all night? This would be great if he was potty-training, but it was just another unnecessary thing for me to worry about right now!

A few hours later, while G was napping, I got on the phone to get information on a program we are trying to get G enrolled in (more about that later). After being on hold for 48 minutes, I was told I had called the wrong number for the program we want. Of course I had. So I called the right number (I think) and was on hold for 18 minutes before I got a voicemail. I left a message, but this is a government agency. I’m not holding my breath for a return phone call.

So then, after being on hold for over an hour with no results, I get a call from our medical supply company, who we have Grayson’s feeding tube supplies through. They are either a bunch of crooks or a bunch of idiots. For the past two months, they have called with an amount we supposedly owe them before they send Grayson’s feeding bags and tube extensions. And they refuse to send the supplies before we pay them (umm…don’t most companies send a bill?). Today they claimed we owed them an $84 copay because we “haven’t met our out of pocket max”. Which HELLO- since our insurance year started, G has had a 10 day hospital stay, an EEG, two surgeries, and almost 4 months of being on a feeding tube. We have paid every bill that’s come in. And you think we haven’t met our out of pocket responsibility?! I immediately called our insurance company who assured me we didn’t owe anything for the supplies, and there was no copay. Whew. And then my husband called the company back. I don’t want to know what he told them- ha! but our month’s supplies should be shipped tomorrow.

Ya’ll. Having a special needs kid is expensive. And before I get any further into that, and of course it goes without saying, but Grayson is totally, completely, 100% worth every. single. penny. And more. We would sell every material object we have and our kidneys too if we had to to get him the treatment he needed. Thankfully it hasn’t come to that. But dang, it’s expensive.

It’s both horrifying and incredible how fast thousands of dollars can be spent on medical needs. In addition to all the doctors and hospital bills, Grayson is on five prescription meds and four supplements, running us several hundred dollars a month. We spend another several hundred a month on formula. We average 2-3 specialist appointments a month with a $50 copay each, not to mention $8-$12 to park at each appointment. Our kid is also, as you know, an ER frequent flyer, which runs $350 a pop. And then there’s little things like laundry detergent. With a kid that throws up every single day, I do A LOT of laundry. And then of course there’s the wine I have to buy to keep me sane- just kidding (sort of).

We are abundantly blessed with the means for these expenses as well as things we don’t have to pay for. My husband has a good job with a reliable paycheck and full health insurance. We have amazing, wonderful, generous friends, family and a church who have helped us out financially. We don’t have to pay for Grayson’s therapy, and his therapists bring equipment and toys for us to use at home. And God provides, even in times where we don’t know where the money is going to come from.

But still. We need some relief. So we met with an attorney who pointed us in the direction we need to go to apply for some help (hence the hour I spent on hold this morning). I pray that this works out and we can get financial help as well as respite care. It will probably be a long, frustrating process, but if it happens it will be worth it. Just like this little munchkin is worth it…

We are working on the proper use of the straw!