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?

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.

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.

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

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.

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

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!

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!

This week is Feeding Tube Awareness Week. I guess I am so immersed in all of this and have done so much reading, research and hands on learning about tubes that I forget most people don’t know much, if anything about them (I know I didn’t prior to October). The organization Feeding Tube Awareness is an amazing resource for information about tube feeding- I have gone there numerous times to have my questions answered- much quicker (and often better information) than calling the doctor’s office. There is a great article on their site for friends and family of tube fed kids, so if you know Grayson or another Tubie, you might want to check it out.

On their Facebook page this week, Feeding Tube Awareness is posting questions every day for families to answer to raise awareness. I am already a few days behind, but I am going to answer them here on my blog, and will answer the rest later in the week.

Day 1: Why awareness is important to my family – What would be different for me/my child if tube feeding was better understood? 

We have been so blessed that we have not had any real negative experiences with other people regarding the tube. When Grayson had the NG (tube going from his nose to his stomach), we got asked a lot if it was oxygen, but no one was rude or inappropriate. I guess the main thing I want people to know is we have no idea how long/permanent Grayson’s tube feeding will be. Right now, the feeding tube is keeping him alive- he eats almost nothing by mouth.

Also, tube feeding is definitely a last resort. For us, it was not a hard decision- when Grayson was hospitalized in October, he could keep nothing down, was diagnosed failure to thrive, and it was a very scary situation. A child does not get a feeding tube just for picky eating- there has to be a serious medical reason. It was a RELIEF when he was finally getting the amount of calories he needed to grow.

Day 2: Why does your child have a feeding tube?

This is kind of complicated. We think the underlying issue is Mitochondrial Disease, which impacts the energy the body’s cells produce. Mito can affect the functioning of every organ system in the body (right now, it’s affecting G’s muscles, brain, GI system, vision, hearing, and possibly lungs and liver). One of the ways it is impacting Grayson is it’s causing his stomach to empty about 3 times more slowly than it’s supposed to. This gastric emptying delay causes any food in his stomach to sit for hours, and because of his low muscle tone, a lot of times it comes right back up. Grayson is on continuous feeds 22 hours/day- we tried transitioning to bolus (more volume, less time) feeds, but after our GI doctor visit this morning, we are holding off and going back to continuous because of his constant vomiting.

In addition to Gastric Emptying Delay, Grayson has never eaten enough calories. From the time he was a tiny 5 pound newborn, eating has not been his thing. I didn’t realize it then, but his hospitalization at 5 days old due to dehydration was definite foreshadowing of eating issues to come. When he was bottle fed up until a year old, he would never drink more than 3-4 ounces at a time, a lot of times less. Solids never clicked, and eating became a really big stressor in our lives (it’s amazing to me to look back at my blog posts and how many of them dealt with my stress over his eating).

Eating is still stressful. On a good day, Grayson will eat a few bites of solid food, and maybe a cracker. He always eats better when we are at a restaurant or a friend’s house- drives me crazy! We are working in OT right now to try and get him to drink out of a straw. Eating therapy progress is slow, slow, slow, and it’s maddening. We will eventually probably have to get him some intense eating therapy, but right now we are focusing on him being stable and getting the vomiting stopped.

Day 3: What does a day with a tube fed child look like?

Our days are pretty “normal” except Grayson is attached to an IV pole or his backpack all day. He feeds 22 hours a day (his “break” is usually from 4-6 pm). He gets meds through his tube, which is SO easy to do at 6:00 AM, 9:00 AM, 2:00 PM, 6:00 PM and 9:00 PM. All of these times he’s awake except the 9:00 PM time, and I’ve gotten pretty good about giving him meds and not waking him up! We usually put enough formula in the bag for about 4 hours, and Ryan gets up at 1:00 AM and ads enough until the morning.

We usually have no problems with the tube when we are at home and it’s on the IV pole, but sometimes when we are out and we have to use the backpack, the bag moves and air gets in the tube, or it crimps, and it’s just annoying to fix it. But we just deal with it.

Since I know most of you don’t know how the tube works, I took a few pictures after Grayson’s bath tonight.

This is his button, right in the middle of his tummy.

Cute pad underneath, and the tube clips right into the button

There’s a med port right on the side to syringe meds right in

We thread the tube down his pants and it attaches to the pump

And now, instead of bottles, I wash syringes at night

We’ve really gotten into a tube feeding routine and no, it’s not the ideal way to feed my child, but it’s what’s working for now.

I don’t normally use the phrase, “It’s a God thing” but what happened yesterday just might qualify…

We walked into the neurologist’s office and a woman held the door open for me so I could get in easily with G and his tube. She was there with her son, who was in a wheelchair. I checked in at the window and I was told I owed a $50 copay. Our specialist copay has always been $40, so I questioned it. The woman made the comment that the same thing had just happened to her. Turns out, we have the same insurance company, so we made small talk on how ridiculous insurance was, blah, blah. (I have no idea why I had to pay $50 and not $40, but whatever. I’ll deal with that later).

Our conversation then turned to our kids. She mentioned her son, who is 12, used to have a G tube so she understood what we were going through. We talked about seizures, and surgeries, and how hard it is to be a special needs parent. She assured me it gets easier as you learn to accept it, but how no one prepares you for having anything other than a normal, healthy child. She asked if Grayson was our only child, and shared that after 6 years, she had another baby and how good it was that her older son has a sibling. She was so open, honest, and kind. Just before her son was called back, she took out a card and a pen and wrote down her name and number for me, and told me to call her anytime. So nice.

Later that night as we were getting ready for bed, I am telling this story to Ryan. He had a funny look on his face when I told him the name of the woman’s son and how the boy became disabled. I knew that one of the coaches that Ryan words with has a special needs son with the same name as this boy, but for some reason I thought that child was only 5 or 6. No, Ryan said, he’s about 12. I went and got the card out of my wallet and turned it to the front. There on the front, was the name of the coach Ryan works with! We couldn’t believe it. I had heard so much about this coach and what a wonderful family man he is, and how if he ever got a head job Ryan would love to work under him because he respects him and his character so much. And Ryan knows his wife and has talked to her many times. I had heard all about their son and what they had gone through, but I had never met them and just didn’t make the connection.

Pretty amazing, yes?

***Grayson is doing SO MUCH better today. He played in his excersaucer, ate dropped crackers on the floor for the dogs in his highchair, and we even got out of the house for a few hours. Fingers crossed this nightmare may be almost over!

Taken this morning- hooray!