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!

I don’t even want to write a post right now, because I’m just so tired of writing post after post of bad news about Grayson. I have no pictures of him smiling, because he has barely smiled in 7 days. But I know people are praying and want to know what’s going on, so here it is (and I’m sorry this is so long):

I don’t even really remember Sunday, but I know it was miserable. It was Ryan’s birthday, and I went to the clinic in the grocery store and got antibiotics because I woke up feeling awful. Grayson was still crying, coughing or sleeping- just like he had since last Thursday.

Monday morning, Ryan and I had a meeting to go to, so our friend kept Grayson here at the house. He stayed in the swing the entire time we were gone. I had an appointment with our pediatrician that afternoon, so I loaded him in the car with his feeding tube attached and working fine. When we got to the doctor, I picked him up out of the carseat and his tube was detached and hanging from his bag. I laid him in the back of the car to check his button. It had come out. I have NO idea how it happened, but you can imagine my panic (and the cuss words streaming through my head).

I went in to the pediatricians office and frantically asked what I should do. OF COURSE they said go to the ER- ugh. I HATE THE ER. And it had been less than 48 hours since the last time we were there!!! When we got there, they immediately took him to triage and tried to put the button back in, but the hole was already starting to close (it’s amazing how the body “heals” itself so quickly, but very inconvenient in this situation). So they had to put a catheter in the hole and wait for it to open up again. In the meantime, they sent us to the waiting room with the other million people waiting to be seen. My mom left work to come be with me (Ryan was at practice and I couldn’t get hold of him until later). I was holding Grayson, and his neck and arms started jerking sporadically. This had been happening several times in past few days, but I really didn’t consider that it could be a seizure. But a friend, whose daughter is epileptic, came to sit with us and as soon as she saw Grayson she said, “He’s having seizure activity.”

I went and told the nurse that Grayson was seizing, and it typical ER fashion, unconcerned, she told me they’d get him in a room as soon as they could. We waited about 3 hours for a room and they hooked him up to oxygen and heart monitor. His oxygen kept going low and setting off the alarm, but again, no one seemed that concerned. Did I mention that I HATE THE ER?? They got the button back in, did a suction tube down his nose and got a lot of nasty stuff out, and then, yes, sent us home. The newest theory- his breathing/lung problem is viral because he doesn’t seem to be responding to antibiotics…but oh, keep giving him the antibiotics. And yeah, call your neurologist about the seizures in the morning.

Yesterday, Grayson slept most of the day. My mom took the day off to help me, and I got some rest too. But I am having a lot of trouble relaxing and sleeping. I’m having trouble falling asleep and staying asleep and it doesn’t help that Grayson is crying a lot in his sleep too. Grayson had more seizures yesterday, and lots of pain in his tummy, so I gave him the Tylenol with Codeine again, which I was trying to stop.

This morning, he woke up crying in pain. His jammies were soaked- the stoma (hole in his tummy) was leaking. Yes, more panic. Called the GI doctor and left a message that this was urgent and to please call me ASAP and I was not taking him to the ER. They called and left a message at 4:00. Said according to the symptoms I described on the phone, they want to see him in clinic. They can get him in next Tuesday. Thanks a lot for your urgency! But thankfully, the problem resolved itself throughout the day, and his tummy looks a ton better tonight.

This afternoon, we had an appointment with the neurologist. Dr. R confirmed that Grayson was having seizures (he was having them while we were there) and upped his meds. Hopefully we can get those calmed in the next day or so. He’s also starting Grayson on the Mito Cocktail- supplements that may or may not help his motor and cognitive development. He also gave me some advice on if we have to go back to the ER (shudder). He said I need to tell them that my kid has mito, is sick, and I’m not leaving until he’s well. Hopefully I won’t have to use that advice anytime soon, but I’m glad I know what to say. We were about to leave the appointment and my mom (who was with me) noticed G needed a clean diaper. We can call off Poop Watch 2012- biggest poopsplosion he’s EVER had- it was EVERYWHERE. Oh my word, there are no words. At least he isn’t constipated!

So I feel a lot better after our appointment today. Since Dr. R believes Grayson does have Mito, and he’s an aggressive doctor, I feel like we get a ton accomplished every time we see him. And Grayson seems to be feeling better- I even got a few smiles tonight. Here’s hoping he’s on the mend and we can get back to normal soon!

What, you thought the story had ended? That my last post wrapped up nicely with Grayson asleep for the night, waking up all better and ready to get on with his life? ha!

No sooner had I pushed “Publish” on my post last night (seriously, within seconds), the screaming started. I sent Ryan into the nursery and was urgently called in. Grayson was burning up, and inconsolable. Took his temp- 103.4.

We called the nurses line, and she had me count his breathing. 48 respiration per minute- over 30 and they recommend the Emergency Room. So off we went, forgetting the diaper bag.

This was our eighth ER visit in 16 months. Seriously, where is our Frequent Flyer punchcard? We should be due a free visit by now. Buy 8 get one free?

RSV- nope. Flu- nope. Partially collapsed lung and really high heart rate- ding! ding! The lung thing is a fairly common side effect of being intubated for surgery, and apparently unless you have a sharp metal object piercing through your skull, the ER does not consider your medical condition a big deal. So four-ish hours later, home we went, with an antibiotic to hopefully prevent pneumonia from invading his poor little beat up lung.

Oh and they checked his ears while we were there. No fluid. So we can check that off our list. And now with the mess we’re in now, do I really want to repeat the hearing test in 3 months under sedation?

This morning- all better? Ha! Fever- still there. Crying- all morning long. Breathing- when I was able to hear it over all the crying, it sounded like an old static-y record player. Oh, and he threw in back to back projectile vomiting episodes for good measure. I guess so I had plenty of laundry to do- in case I got bored.

Called our pediatrician. Yep, bring him in.

Our regular pedi wasn’t on call so we saw another doctor in the practice. We liked her a lot. She thinks he does indeed have a touch of pneumonia. Grrreeeat. He’s also constipated. So we’re on poop-watch. If he hasn’t pooped by Monday at the latest, we need to be very concerned.

We got another antibiotic, which OF COURSE was not available in a generic, so it cost $60 and Ryan’s third trip to the pharmacy in as many days.

Grayson is MIS-ER-A-BLE. He’s either crying, or whimpering, or sleeping. Nothing else. His fever is 101 and he’s making me burn up holding him. He peed all over me the last time I took his temperature. Ryan laughed. I rolled my eyes and cleaned myself up. Grayson screamed. Right now he’s in his swing, asleep. I’m not moving him. Not sure if I want to bathe him tonight or not.

Two years ago today, I found out I had a little miracle growing inside me. He is worth all of this and so, so much more. I just want him to feel better.

Well, it’s over. It’s been a long, hard two days but we are making it. Whoever said being a mom is like wearing your heart on the outside of your body was right on. My little boy is so brave and is such a fighter, and he doesn’t deserve one second of the pain he is in right now. It’s heartbreaking.

Yesterday, we got to the hospital at 8:30 and saw about 3 nurses right away to do pre-op paperwork and get Grayson’s vitals taken. I was thinking, great, we’re running ahead of schedule and we are going to get this thing over with. Ha! We were taken to a holding room, where we changed Grayson into this ridiculous outfit that was about 10 sizes too big, and waited. And waited, and waited some more. The nurses suggested we let G watch TV. Mmm, he has zero interest in TV (for the record, I am not opposed to him watching TV at all. If he did, it would sure make my life easier!). Then they suggested we let him play on the riding cars. Mmmm, he can’t sit up and letting him chew on the handles lasted about 45 seconds. So we did a lot of rocking, singing and making silly faces while we waited. For 2 1/2 hours. Bleh. And I was STARVING (and food was not allowed in the waiting room or holding area) and Grayson was starving, since he hadn’t had any food since 11 pm the night before.

Turns out, the reason for the delay was there was equipment malfunction in our surgeon’s previous operation. Finally, we met with the anesthesiologist and the surgeon, and they whisked G away. I left to get some food, and while I was gone, one of the doctors came out and let Ryan know the button was in and that part went perfectly. Then later the surgeon herself came out to let me know the biopsy was done, went fine, and the ABR (hearing test) was still going on. She had pictures of G’s stomach and the button, which was both creepy and cool.

When the ABR was complete, the audiologist came out to talk to us. There’s good and bad news. The good news is Grayson’s hearing is within normal range for high frequency sounds (hard sounds, consonants). The bad news is for the low frequency sounds, he has moderate to severe hearing loss. She wants us to check in our pediatrician to make sure there isn’t fluid on his ears and repeat the test in 3-6 months. This news really doesn’t surprise me, considering his speech delay and my observations of his reactions to sounds. Also, unfortunately, hearing impairment is yet another symptom of Mitochondrial disease. She said right now, Grayson isn’t a candidate for hearing aids because of the high-frequency normal hearing.

Recovery. Grayson is not a fan of being told to wake up, especially out of anesthesia. He slept, and slept, and then slept some more. After a few hours of him snoozing away, we got kicked out of the regular recovery ward and were moved to a corner to wait some more. Thankfully, our corner of the PACU universe had rocking chairs and a TV, and we pulled out our cell phones even though it was against the rules. He finally (sort of) woke up and he was pissed. And hot. As in almost 104 degree fever hot. The last time he had a fever that high, he had a seizure. And like me, normally his temperature runs pretty low. So everyone was pretty concerned. The nurses gave him Tylenol and wiped him down with cool water, which did not help his attitude about the whole thing one bit. The sweet nurse told Ryan and I to go get something to eat, and when we came back, his fever had gone down to 100.3 and they said we could go home. Finally.

Today has been rough. It is horrible to watch your child in pain and not be able to make it better. I’ve wanted so much to just hold him and comfort him, but he is far more comfortable in his swing than in my arms. Thankfully, his pain medication knocked him out almost all day. But when he wasn’t sleeping he was crying. He perked up around lunchtime, but then after sleeping on my chest for an hour, woke up with another fever. He cried and cried through his bath and has been sleeping in his crib since 6:30.

I am grateful that the muscle biopsy site doesn’t look nearly as bad as I thought it would, and the button is functioning perfectly. I just hope tomorrow is a better day and I get my Grayson back. I didn’t get one single smile today. I want this little guy back:

Today was the PERFECT day for a nap. Pouring down rain outside, dark, and zero plans after a meeting (at our house) we had this morning. And I was sleepy. I had a major craving just to curl up on the couch with my Kindle, to read a few pages, and then quietly drift off to sleep.

Oh, fantasies.

My child apparently did not share in my nap-craving. He woke up at 5:30 AM and slept a total of 45 minutes all day until we put him to bed 30 minutes ago- because little boys who don’t nap get to go to bed before the sun. And if you are thinking that he just wasn’t tired, well, you would be wrong. He spent all day rubbing his eyes quite dramatically, fussing, yawning, and laying his head on my shoulder. All because it was, indeed, a perfect napping day.

So yeah, today was fun.

We did go to HEB for a few minutes this afternoon to save my sanity. I bought a bunch of vegetables (as many as I could fit in the little handheld basket and still push the stroller at the same time) and came home and used my juicer for the first time. Yes, it was a wedding gift. Yes, we’ve been married three and a half years. Don’t judge. Carrot juice is actually really good. Refreshing. Grayson does not agree, but what does he know? He doesn’t like cheesecake either.

Our meeting this morning was our yearly evaluation/review for therapy. I can’t believe we’ve actually been doing therapy for a year now. Based on his therapists’ observations and information from me, here’s where Grayson stands, at 16 months:

Social: 12 months
Adaptive: 12 months
Cognitive: 8 months
Communication: 7 months
Motor: 5 months (turns out I was right when I wrote about that here)

So yes, those last 3 are hard to see on paper, but they are just numbers. The good great news is he is making progress, on his timeline. All his “teachers” were so excited to see the video of him scooting, although of course he wouldn’t do it for them in person.

Tomorrow is his surgery. 11:00. I had a hard day about it yesterday- cried several times- but today I’ve been ok. I just HATE that they have to cut into his leg. His perfect, untouched, baby soft little leg. But, I’m glad he’ll be getting his button. Not much will change that I can see, but it will make bathtime a lot easier without a tempting tube hanging from his stomach to yank on.

We have the button here at our house. The medical supply company mailed it to us and we have to take it to the hospital to be placed. I find this very bizarre. And I hope I remember to take it tomorrow.

Turns out, we are going to do the hearing test tomorrow too. When I called the surgeon to tell her No, that Audiology said it was too long a test to be done completely under anesthesia, she said that sounded funny. So she called Audiology and Voila! we have a hearing test scheduled. As long as it’s safe, I’m thrilled with that. So we now have February 13 available if anybody wants to do lunch.

Ryan bought Grayson a little train set today as a Yay-for-being-brave-tomorrow present. It’s really cute. As you can see, in his sleep deprived state, he was about as thrilled with his new toy as he was the carrot juice.

So if you have a minute tomorrow, say a little prayer for our little guy. Pray that he tolerates anesthesia, that the three procedures all go quickly and for pain management when he wakes up and when we go home. This is what I am most worried about.

Thanks.

Dear Grayson,

Happy 16 month birthday, Sweet Bubba. We’ve had quite a busy start to 2012…

You are working hard on so many things. Everyone was so excited to see you scoot (and lots of people cried too!) and you are all about exploring your world with your hands. You grab everything in reach- my hair, the dogs, your tube (grrr) and love to put all of it in your mouth. You much prefer dishes and bowls to actual food, and delight in making HUGE messes every mealtime.

You are finally starting to really like books. Of course, your favorite thing to do is chew on the pages, but you will listen to me read and tilt your head back to watch my mouth move. Your favorite book is Calm Down, Boris! because of the silly monster puppet in the book that tickles your neck while we read. You also LOVE music- you will lie so still and quiet and just listen.

You are definitely growing, big boy. With your second big-boy haircut and long and lean body (19 lbs, 3 oz, 30 inches) you’re trying to turn into a little boy without me noticing. You are wearing mostly 12-18 month clothing and size 3 diapers. You are taking about 25 oz./day through your tube, but still aren’t eating much at all by mouth. Again, you would rather play with your food than eat it. Sigh.

You are back to sleeping 12 hours at night and are still taking 2 naps during the day. I am so thankful you love your bed and almost always go down for the night and your naps without protest. What you are protesting, however, is the process of getting dressed and undressed. You hate it. And of course, because you hate putting clothes on and taking them off, your fight it, and it takes twice as long. Just sayin’. Another thing that is well, less than adorable, is your biting habit. No shoulder is safe from your razor sharp teeth, and when you do it, it HURTS. Please stop, k?

We have a big month ahead. This Thursday, you’ll be having surgery to get your feeding button and the surgeon is also going to take a little piece of muscle from your thigh. We’ll have to wait a few months for all the tests to come back, but we are hoping that tiny piece of muscle will give us lots of information and we can use that information to help you grow and develop to your best. Mommy is very sad that you have to go through this, and I’m really bummed you are going to have a scar on your leg (but Daddy says it will make you look tough, so we’re going with that). We were hoping to do your hearing test at the same time as your surgery, but the doctors don’t want you to be under anesthesia for that long. So your hearing test will be next month, right before Valentine’s Day.

I promise this month isn’t going to be all hospitals and doctors. We are going to have a lot of fun too. We love visiting all your friends, going to church, and of course swinging at the park. I want to make sure your days are full of smiles, fun and laughter. I love you GRB. Keep scootin’!

Love,
Mommy

I’ve been loving my new keep-the-house-clean routine. It’s amazing how doing a little each day makes such a huge difference. Although admittedly I’m spending a lot more time cleaning, I am so much more relaxed and am enjoying being at home so much more. I’m really hoping if I keep this up, it will become  a habit and I won’t consider myself such a terrible housekeeper anymore.

I’ve been slowly cleaning out/decluttering specific areas in the house. So far I’ve done the pantry, laundry room, and medicine drawer. And yesterday, I cleaned out the cabinet where I kept all the baby bottles. All those bottles, and millions of little parts that go to the Dr. Brown’s brand, were sorted, bagged and put into storage (well, storage being the corner of the spare bedroom until I can really figure out a good place to put them). And doing that made me cry.

Being done with bottles was supposed to be a thing. A thing like potty training, or moving to a big-kid bed. A transition. Grayson and I didn’t get that transition. His bottle feeding days ended suddenly and dramatically. There was no transition, no weaning. And I realized his last bottle wasn’t given to him by me. I should have been able to give him his last bottle snuggled up in the rocking chair in his nursery. But instead, it was given by my friend, who was babysitting, and was vomited up violently before we took him to the ER.

And it is kind of funny that I’m so sad about those bottles, because having to bottle feed was such a source of pain and raw emotion such a very short time ago.

I know there will be other things like this, things that won’t get to be things. One day he’ll abruptly refuse to wear smocked outfits, or won’t fit in footie pajamas anymore. He might even  decide that bedtime should be after the sun goes down and not before. One day he won’t be a baby anymore.

Today we had a really, really good day. There was a period of about 30 minutes where we lay on the floor and giggled. Giggled our heads off, both of us. No toys, no phone, no cameras. I wanted to capture the moment on camera, to record that infectious laugh, but I resisted the urge. Somehow I knew the magic of that moment would be broken if I tried to bottle it up electronically. Moments like these are my things. 

So the good news is I now have a free cabinet. Well, a cabinet that is now full of sippy cups. I wonder when I’ll form an attachment to those?

Grayson started scooting a little right before his surgery, but we stopped working on it for a few weeks to let the G-tube site heal. Last night he showed off his new skills for his daddy and me, and today I caught it on video. We are celebrating every little inch with our amazing little guy!

Yesterday morning our family made our way downtown (and got trapped downtown for awhile due to 95% of the streets being blocked off for the marathon) for the United Mitochondrial Disease Foundation support group. Grayson has not been diagnosed with Mito at this time, although we strongly suspect this is what he has. We are hoping if he does have Mito, the muscle biopsy he’s having in a few weeks will show it.

I’d never been to a support group before, and wasn’t sure what to expect. I was impressed that there was something for everyone- a nursery for the babies and toddlers, a kids/siblings group, parents of kids with Mito group, and adults with Mito group. Ryan and I of course went to the parents group.

The most interesting (and beneficial) thing for me was to see kids older than Grayson living with Mito. Mito is a disease that has a WIDE spectrum of symptoms and some are more severely affected than others- there were kids who could walk and kids who couldn’t, kids on oxygen, kids with braces on their legs, kids with feeding tubes. There were kids with normal cognitive abilities and some without. All the kids looked happy though, and were obviously loved and adored by their parents. I have a really hard time picturing Grayson at older ages, and it was nice to see that even kids with significant challenges are HAPPY and can have a great time on a Saturday morning.

The parents group was great- I felt on the verge of tears the entire time, both happy and sad. Sad because these families are dealing with so much, and happy because wow, it was amazing to be in a room filled with families that really get it, who really understand what we are dealing with. At one point the facilitator looked right at me and commented that I had a panicked look on my face- ha! I’ve never been good about hiding my emotions, and yes, a lot of this does make me a little panicky.

I really hope we can further connect with these families- I realized I am craving information and a connection from people who are further along in this journey than we are.

Next month, the UMDF is having an Energy for Life walk. My friend Kristi, whose daughter is also suspected to have Mito, is putting together a team. Grayson and I will be walking and if anyone would like to join us on the Lady A Team, click here. There is also a link on the page to make an online donation. We are excited to meet even more people and to help raise money to hopefully one day cure this disease!