Tuesday morning Charlotte and I dropped Grayson at school and picked up some of our friends and drove down to Galveston for the day. We had a lovely morning sitting on the beach, chatting with friends, and watching two toddlers play in the waves. That morning now seems like a million years ago.

We were on our way back to Houston when I got a call from Grayson’s teacher that he was having a seizure. Unfortunately, this is not uncommon for him so I wasn’t too concerned. My mom was supposed to pick him up so I just told them to give him Diastat and keep him comfortable until she got there. About 20 minutes later my mom called- he was still seizing. I dropped my friend and her kids off and rushed to school. I held Grayson in my arms and he was burning up. We are told anytime Grayson has a fever to immediately bring him to the ER. Fevers are very dangerous to kids with Mito. Grayson hasn’t had a fever since just after his first birthday, so I knew this was serious.

We rushed him to the hospital and minutes after we got there they started IV fluids and took a lot of blood. Tuesday night his temperature was 103.6. He was admitted and we were told we would be here at least 48 hours waiting for the blood culture results to come back.

Wednesday, it was obvious Grayson was miserable. He wasn’t having any more seizures, but was vomiting, running fever and diarrhea. Late in the afternoon he was getting worse, not better. His Mito doctor and his immunologist came in the room, along with what seemed like a thousand other doctors. Everyone was talking, I was holding Grayson and he was screaming in pain and was burning up. It was hard for me to hear what the doctors were saying over the screaming and they were all wearing masks so I couldn’t even try and read their lips. Dr. K gave me a hug and told me very seriously they were very concerned and Grayson needed to be moved to the PICU. It was obvious the situation was urgent.

They wheeled him out of the room in his bed and we weren’t able to see him for about an hour. When we were finally able to go to the PICU, he had a new IV in his neck and bags of ice covering his body. He was still screaming and moaning. His whole body was so pale and his eyes were purple and puffy. It was AWFUL. That night, we spent hours trying to get his fever to come down. He had a probe in his bottom so they could monitor it constantly- I was obsessively checking the screen. His temp was hovering right at 104.7 for what seemed like forever. They started him on heavy antibiotics, IVIG infusions and kept putting ice on him. The scariest was when he stopped screaming when the ice went on his skin and was non-responsive. I stayed with him that night- my mom took Charlotte home to sleep and Ryan stayed in the Ronald McDonald house.

Yesterday morning, he woke up a different kid. He was still super grouchy (can  you blame him?) but his fever was gone, and he had color back in his skin. He spent the day listening to Veggie Tales, whining about being stuck in bed for 3 days, and sleeping. In the PICU, I couldn’t bring Charlotte in the room, so yesterday was kind of a juggling act having her cared for. But I have wonderful friends and family who helped us out- trading off sitting with Grayson or holding Charlotte in the waiting room. And I have to give props to Charlotte who has been a rockstar little sister- she just goes with the flow and doesn’t complain about anything unless she’s hungry. Sweet girl. Today, she is at Grayson’s school for the day. His teachers generously offered to take care of her- love them.

Grayson was moved from the PICU back to a regular room last night. Everything still looks good- all his cultures have come back negative, he has been fever free for more than 24 hours now, and is tolerating his feeds. We will most likely get to go home later today.

I spoke with Dr. K yesterday and she said this whole thing probably has more to do with his Leighs than a virus or bug. She wants us to do an MRI in a few weeks to see how much the disease has progressed in his brain. While I want to know (I always want to know), I am terrified of what it will show, and how many more of these scary days we will have to endure. At one point Wednesday I was terrified Grayson wasn’t going to survive the night. I am just so thankful we live in Houston, where our hospital KNOWS Mito and knows that a fever in a Mito kid is not like a fever in a typical kid. And now I know how FAST things can go downhill.

I pray we can go home tonight and all get some rest this weekend- we are exhausted!

• This weekend, my grandmother from Michigan is coming to visit! I am so, so excited. We haven’t seen her since Grayson was 9 months old and obviously she has never met Charlotte. We are going to my parents’ ranch for a few days- another first for Charlotte. I am overwhelmed just thinking about the amount of STUFF we will have to pack into the ol’ minivan to survive 2 days in the country.
• So remember a few posts back where I was all excited that we finally found the perfect house for us? Yeah, well, that plan got derailed last week when the appraisal came back way under our offer, making us unable to get the loan for that price. So we tried to re-negotiate with no success. So, we are back to house hunting. Waaaaa.
• You might be a tube-feeding mama if you start to FREAK OUT when your husband tells you your son lost his button, but then realize he’s talking about an actual button on his shirt not the thing sticking out from a hole in his tummy.
• Charlotte has discovered her hands. She gnaws on them whenever she gets the chance and it’s pretty much the cutest thing ever. And she can hold on to things! I know, big deal right? Well, Grayson couldn’t do this until much later than three months, and to be honest, still can’t hold on to things as long as Charlotte already can. So yes, it’s a big deal.

• Another big deal: bending his legs (something that doesn’t happen very easily!).
• Sorry, Anonymous Spam commenters, I’m done with you. Every day, I get more and more of your random, sometimes funny but mostly just annoying, comments on my blog. Today’s gem:

REALLY? And I don’t know if 83 views really qualifies you as a sensation. But what do I know? So no more anonymous comments- so sorry, real, legit, human beings who don’t have a google account.

I guess that’s it for tonight- Happy Tuesday Ya’ll!

Yesterday, April 20, marked one year since Grayson was diagnosed with Mitochondrial Disease. I remember in the weeks leading up to the appointment, his first with our Mito specialist, I had such conflicting emotions. Of course I didn’t want my baby to have it, but I also needed so badly to have something to call the group of symptoms causing so many problems in his little body.

One year later (and 7 months since his specific diagnosis of Leighs) Mito is our normal, our life. We are no longer running any diagnostic tests, waiting weeks and weeks for biopsy or genetic results, or scouring Google for hours finding diseases and syndromes that fit Grayson’s symptoms. We know what it is, and now are just living with it, and trying to manage it.

I’ve been really worried about Grayson lately though. I don’t know if it’s the new medication he’s on, or disease progression, but he seems to be disconnected a lot of the time. A lot of times he doesn’t respond when someone calls his name or even gets close and talks to him. His stiffness is still awful, although the medication does seem to be making him more comfortable and he’s definitely sleeping better. He’s retching and vomiting at least once a day again.

When I can’t get him to respond or interested in anything else, I know music will always make a connection. I spent a lot of time this weekend just cuddling my boy and singing to him. He makes amazing eye contact, grins and giggles at his favorite parts when I’m singing his songs. It’s so funny though that, just like toys, he only likes certain ones. “Wheels On the Bus”- always a winner. “Twinkle, Twinkle”- meh.

We did a fundraising walk at the zoo Saturday morning with a team from his school. Although Grayson couldn’t see any of the animals, he seemed content to be outside, bundled up and pushed in his stroller (it was unusually cold for April). It makes my heart hurt that he can’t enjoy normal kid things like the zoo, but I have to remember what my counselor keeps telling me, that it’s me that’s sad, not him. He doesn’t know what he’s missing so he can’t be sad about it.

After such a stressful, scary, and sad week, along with G’s bittersweet anniversary, it was wonderful to have a weekend to spend together as a family- walking at the zoo, cuddling, singing, going to church, eating good food, and resting. Whatever happens with Grayson in the near or distant future, I hope I always remember the little fun things we did as a family- the days are hard and not always fun, but these are still good days.

Dear Charlotte,

You are 3 months old today, and of course I’m going to say it- I can’t believe 1/4 of your first year has already passed!

You are pure joy- you smile with your whole body and you are not stingy with your smiles; you will give them to anyone willing to talk to you.

You are petite, weighing about 10 1/2 pounds, but you still love to nurse about every 2 hours. You wear size 3 month clothes and size 1 diapers. Your naps are sporadic and a lot of times short, but that’s my fault as we are usually on the go during the day and haven’t established any kind of a daytime schedule. However, you are an awesome sleeper at night! You go to bed about 6:30 pm, sleep 7-8 hour stretches and then usually go straight back to sleep after you eat.

You love your brother. You want so badly to engage and play with Grayson, but unfortunately, he doesn’t have much interest in you yet. But the way you watch him and smile at him makes my heart so happy. He’ll come around.

For the most part, you are a happy, smiley baby. But when you don’t get your way (read: when someone isn’t holding you) you aren’t shy in letting us know your dissatisfaction. You sure can scream!

I love you so much and love watching your sweet, spunky personality develop. Happy 3 Months baby girl!

Love,
Mommy

In the past week, several people I am close to have been closely, personally affected by tragedy. A mentally ill college student stabbed students when he should have been in a class my friend was teaching and a wreck involving a car and a school bus took the life of a woman right in front of the high school my husband works at. Then of course yesterday the news of Boston broke.

I’m feeling really unsettled right now, realizing just how powerless I am in protecting my kids from so many awful things that could happen to them.

Mito is slowly stealing Grayson’s life, and has already robbed him of countless experiences and milestones. I can’t stop it or control it any more than I could stop a madman intent on blowing up a city who could care less if a child was one of his victims.

Social media has been full of inspirational posts in the last 24 hours, with reminders that there is more light than darkness, there are always people who will help, etc, etc. True, yes, but that doesn’t negate the fact that there is darkness and  people who are out to hurt rather than help.

There’s not much that makes me feel more powerless than holding my little boy when he’s seizing. I can watch the clock and administer his medicine after so many minutes, but beyond that, all I can do is hold his stiff little body close and wait for the seizure to end. I never know when one is going to start; I can’t prevent it, shorten it, or stop it.

Unfortunately, out in the world, the same thing happens to innocent people, and children, every day. Evil and darkness strike with no warning. People’s lives are destroyed in the blink of an eye. I know I can’t hide my children away, hold them close and protect them from all bad things, but I sure wish I could. I know I need to be part of the light, and raise children who are part of the light too, but the darkness sure is frightening, and feels so close to home.

Last year, Grayson qualified for a program for medically complex children. One of the main benefits is it gives him Medicaid coverage, which is one of the biggest blessings to our family. Medicaid covers most of his doctor copays, ER and hospital visits, therapy, and medications. Having a special needs kid is outrageously expensive, and we are so grateful for Medicaid and all it provides for Grayson. Another benefit of the program is he qualifies for in-home nursing care. Since I am a SAHM and Grayson goes to school 5 days/week, right now we are using most of our allotted hours at night. Our nurse comes Saturdays during the day, and then 3 nights/week. She gives him his bath and medications, puts him to bed and then takes care of him if he wakes up at night for any reason. This has been a huge help to me the last few weeks, especially with the adjustment of now having two kids.

Yesterday evening, it was almost time for Grayson’s bath, and I took him from the nurse to snuggle with him for a few minutes before she took him upstairs. She told me Grayson is very lucky because I play with him and take care of him, even when she is here. She said most other homes she has worked in, the parents were gone as soon as her shift began and she often had to go searching for them so she could leave (12 or 15 hours later). I know I shouldn’t have been shocked but I was. I told her it sounded like neglect to me, and she said it absolutely is.

Then I thought about a post on FB from another Mito mom last week- her son was in the hospital and said one of the nurses told her that about half of kids with complex medical needs are abandoned by their parents when they are in the hospital. She said there was an 18 month old next door who had been there for weeks and the parents came for about 15 minutes at a time, and not even every day. Horrifying. Yes, people have to work. But not 24 hours a day. You don’t abandon your BABY in the hospital.

I guess this is so shocking to me because my network of special needs parents all love their children deeply and do anything and everything to give them the best quality of life possible. Yes, we hate our children’s disease and the limits it puts on their lives, and would do anything to see them cured, but we don’t love our children any less because of it. Last week when Grayson was in the hospital I rushed as fast as I could down the hall to get something to eat so I could be back in his room- I was gone probably 2 minutes max, and I felt bad I had to leave him alone that long. I simply can’t imagine leaving him alone in a hospital for days or weeks at a time. It makes me sick to my stomach to think about.

No one is guaranteed a healthy child and all children need to know they matter (and yes, I know healthy children are also abandoned and neglected). Sick children have “special needs” but they have basic human needs too; they need affection, attention and security. They get bored and need to get out of their house sometimes, if possible. They need to know that the people who brought them into the world don’t see them as less than, or an inconvenience, but rather a precious member of the family.

Today, I’m grieving and praying for all those special children who don’t get snuggles before bedtime or who are spending yet another night alone in a hospital room.

I’m kind of in a blogging rut right now- I know no one wants to read too much about my exciting life of changing diapers, breastfeeding, and how my 2 month old is, by definition, sleeping through the night (7-8 hour stretches, woo hoo!). And really, besides the ever-present drama and unpredictability that is Grayson, that really is all that is going on right now. Please, if you have any suggestions on posts I can write that are even remotely more interesting than you are about to read, let me know.

I did take both kiddos to Grayson’s pulmonologist appointment Friday, and as we were leaving sent a friend a text to please send liquor. Oy. At least this time I had the good sense to bring a bottle with me so I didn’t have to nurse Charlotte. And I discovered I have a the superpower of multitasking holding a squirmy, whining toddler who doesn’t have much body control with one arm, feeding a screaming infant a bottle with the other, and having a semi-intelligent conversation with the doctor about the toddler’s respiratory system. Anyway, the end result of the appointment was G’s lungs sound great (knock on wood, for having such an awful disease, the kid rarely gets “sick”), but she wants another sleep study with oxygen to see if the oxygen would affect his seizure threshold. Grayson did have 2 seizures this week, and has just been off- really tired, and just not himself. I just feel like something is going on with him.

Saturday the four of us plus Grayson’s new nurse went to a kite and dog (yes, random combination) festival with my brother, SIL, and their dog. We drove out and picked up Hank to go with us. He’s been boarded because we are staying with my parents until we move.  I hadn’t seen my big guy in 11 weeks (since the day before C was born) and it was good to hug that big, slobbery doofus. We all had a good time watching Frisbee dog demonstrations and giant kites fly, but once again made me so sad that Grayson could only enjoy being outside with his people, but not the actual entertainment. In our day to day life, I often forget how little he can see, but big, colorful kites in the sky with no reaction from him, reminded me.

Today we went to church, and we all dressed in our Easter clothes- Take 2, since we weren’t able to go last week. The church generously ordered Grayson a special needs bumbo chair like we have at home, and it was waiting for him in the nursery. It still stings a little that he has to be in the baby nursery and not the two year old class, but now with that chair, I know he will be a lot more comfortable. After church we went to R’s mom and grandmother’s house for lunch, and we attempted to pose for a family picture. The picture above is the first picture we have taken of the four of us (yes, C is 11 weeks old- sad) and people, this is the best of about 10 shots (also sad- ha!). After lunch, we came home and it was that in between time- too late for Grayson to take a nap but still hours away from bedtime. I took him out for a “drive” in his car around the neighborhood- he loved it. But with no nap, by 5:30 he was done and was practically begging for his bed.

It really was a lovely weekend, and I’m grateful we were able to spend so much time together as a family (and even with Hankman!).

Just a random ad-on to this post- I am trying to eliminate so much stuff from our life, and not keep every piece of paper Grayson brings home from school. So this masterpiece did go in the trash tonight, but it has made me giggle for several days now. And now it will live forever on the blog 🙂

For me, one of the really fun things about having little ones is dressing them. I hate shopping for myself, but could spend all day at the mall picking out outfits for G and C. I especially love personalized clothing, and now that I have two kiddos, personalized coordinating outfits are the ultimate in cuteness.

However, most of the time, outfits with names on them aren’t cheap. I absolutely adore appliqued and embroidered t-shirts, but by the time I pay shipping, I’m often spending close to $30 on one shirt- not exactly in my budget. Also, most of the time these shirts are for holidays, so they are only worn a handful of times, making spending the money even less practical.

But thanks to my friend Traci, who introduced me to the Etsy shop Giggles To Go, I can now afford lots more personalized clothes for the babies. Diane, who runs the shop, designs adorable iron-ons for t-shirts or whatever other fabric item you want them on.

At first I was skeptical- I’ve done iron-ons from Hob.by Lob.by and Mich.aels that would stick for a few hours, but then peel right off. But Diane’s iron-ons are high quality, and even after multiple washings, they stick and look brand new- just like they were screen printed on the shirt. She sends detailed instructions on how to iron them on (it’s actually super easy, but it’s nice to have the step-by-step instructions anyway).

The best part about Diane’s product is the price- only $5/iron on! For most of the shirts I’ve made, I’ve bought plain solid shirts at Wal.Mart for under $4, making each shirt less than $10 total! She is also willing to change colors and fonts to make each design exactly the way you want it. Her designs are so cute and she adds new ones frequently- it’s hard not to go crazy with the ordering!