I am raising a medically complex child. As I’ve said before, it’s very overwhelming for me to see all of Grayson’s symptoms and issues listed in one place. Because he has so many of his body systems that are affected, he sees a lot of doctors. We have eight specialists, plus our pediatrician, that we see regularly.

I have a lot of respect for doctors. Grayson would be in a heap of trouble if not for the medical profession. We have a diagnosis and treatment plan because of aggressive doctors who dug for answers about my little boy. He takes medication and supplements that are keeping him stable and helping him to progress. He gets the nutrition he needs through a tube in his tummy and is now on the growth chart because of a doctor. I truly believe that all of Grayson’s doctors care deeply for their patients and want the very best for them.

But that doesn’t mean I always agree with them.

I am not a science person. I never liked science in school- I opted out of taking science my senior year in high school took geology in college because it was supposed to be the easiest one. I really wish I could go back to my 9th grade self and tell her to pay close attention in biology when they talked about the mitochondria. That one little label on a picture of a cell on that biology final now pretty much consumes my life.

I’m not a science person, but I now spend hours a week researching science-y stuff. I don’t particularly enjoy it, but it makes me feel more in control when I know something about what’s going on in my child’s body.

I don’t claim to be a doctor, or have even a fraction of the knowledge that Grayson’s specialists have. But guess what? I do have a lot of knowledge that I didn’t have a year ago. A lot. And I’ve met a lot of people who know a lot. So I don’t go into doctors appointments ignorant.

Today was challenging. Grayson saw a new doctor, who was very nice and respectful, but we don’t agree on one particular issue. I thought I did a pretty good job presenting my opinion and asking specific questions, but of course was intimidated talking to someone with a lot more credentials than me. But I do have one credential that she doesn’t have: I’m Grayson’s mom. It’s my job to make decisions for him, because he can’t make them for himself. I have to trust my instincts, keep him safe, and not worry about what anyone else thinks of me, even a doctor who probably thinks I’m nuts.

Doctors are amazing people, but they don’t know everything. And they don’t know my child like I do. It’s both incredibly terrifying and empowering that any decision regarding Grayson’s care ultimately is made by Ryan and me. And this is why this liberal-arts-brained-non-science girl will keep on researching, reading, and talking about science. Probably for the rest of my life. Oh, God certainly has a sense of humor.

Dear Grayson,

Love,
Mommy

I hope I don’t fall asleep writing this update. Seriously, I am worn out. This week has kicked my butt. Fortunately (?), my pint-sized sidekick is still slightly drugged from being sedated for four hours this morning and is already down for the night (please, oh please, let that statement be true!) so I can lump on the couch until I get the motivation to take a shower and go to bed myself.

We’ve had three medical appointments since Tuesday- two doctors appointments and then the sedated testing this morning.

Tuesday morning, I picked up the Auditory Impairment teacher at 6:30 and we schlepped down to the med center for what was supposed to be G’s hearing aid appointment. I’m so annoyed by what happened that I’m not going to write details. The short version is the audiologist did NOT have him down for a hearing aid fitting but another hearing test (he had one a week ago). And our insurance does not cover hearing aids. And hearing aids cost between $1000 and $2000. And remember, the ENT only wants us to do a 3 month trial and really doesn’t think it’s even going to help with Grayson’s speech. So am I going to pay over $1000 for something for 3 months that probably won’t even work? Um, no. So the plan is to either wait until our Medicaid benefits start because they most likely will pay for a hearing aid, or see if the AI teacher can find us a loaner. So I left annoyed, but not until I demanded the office refund my $50 copay.

Wednesday, we had an awesome GI appointment. First, it was awesome because it wasn’t in the med center, but in his other location, which is about half the distance from our house (and has free parking!). He was incredibly pleased with G’s weight gain, said his button looked great, and agreed when I asked if we can try and wean him off his GI meds. Since Grayson’s vomiting has drastically decreased, I don’t want to keep pumping him with meds if his body can function without them. He also agreed that we should start trying bolus feeds again. I’m nervous, but excited about this. I don’t want the vomiting to start again because of too much volume at once, but it would make life SO much easier if we could have Grayson on bolus feeds when he starts school in August.

Wednesday afternoon, UPS dropped off a large box. I had no idea what it could be. I opened it, and there was G’s new Childrite seat that I had ordered less than 24 hours before, and no, had not paid overnight shipping. I was so surprised and impressed! In the little time Grayson has spent in the seat, I can already tell he is SO much more comfortable than he was in the baby Bumbo, which he had clearly outgrown. Hopefully this seat will be something we can use for a long time!

This morning, we had to be at the hospital at 6:30 to check in for G’s procedures. He had an MRI of his brain, a spinal tap, an EKG and an Echocardiogram. Last night, G couldn’t have his formula after midnight, so at 12:00 I had to switch his feeding bag to Pedialyte and then stop that at 4:30. We left for the hospital at 5:30 and it is amazing to me how much traffic there is at that time in the morning.

The anesthesiologists were concerned when they saw Grayson coughing and gagging on his spit, like he does all the time. They thought they might have to intubate him with a breathing tube, which is what caused the nightmare complications after his surgery in January. The anesthesiologist knew I was worried about this, because he sent me text updates throughout the morning (so nice!) which always included “He’s doing great! We haven’t had to intubate yet!”. Anyway, they put him to sleep with strawberry flavored gas, we kissed him goodbye, and didn’t see him again for almost 4 hours.

According to the doctors, everything went beautifully, that this is the view we had for the next hour and a half.

This kid does NOT like to wake up after anesthesia. But I really don’t blame him- if I was wrapped in warm blankets I wouldn’t want to wake up either. So we waited. And waited. And waited. Ryan was getting antsy because his team has a playoff game tonight and I know he was having visions of Grayson snoozing away in the PACU until midnight. So finally I convinced the nurse that he needed fluids and uncovered him so I could hook up his tube. I decided to change his diaper and get him dressed too. As soon as I took off his diaper, he promptly woke up, screamed, and peed all over himself. But he was awake! All his vitals checked out so we left shortly after.

Thankfully, this crazy week has no more medical appointments. Tomorrow we are heading to East Texas to see the house and property my parents are buying as a vacation property. I think it will be Grayson’s longest car trip he’s ever been on (no, we don’t go anywhere). Maybe he’ll still be tired and will sleep!

*One last thing I have to share about this morning because it was so cute and funny. In the PACU, there was an adorable little girl about 3 or 4 who was waiting for her parents to come get her to go home, and she was getting impatient. She started taking off all her sensors, tape and trying to take out her IV. Here was the conversation we overheard:

Nurse: How do you know how to do that? Are you a doctor?
Girl: Nooo
Nurse: Well, then surely you must be a nurse.
Girl: Nooo
Nurse: Well then, how do you know how to take off all this stuff? You are such a pro.
Girl: Because I am a tooth fairy.

Ha ha!

Monday, I have no complaints. You kinda came through for us today.

We started the day with a Vision therapy session with Jello- how fun is that?! But really, G wanted nothing to do with the jello in his mouth- I think he’s like his momma and doesn’t have much of a sweet tooth. Plus, jello is more fun to smash with  your hands and fling off a spoon than eat anyway. We love Vision therapy because it’s all sensory play- since we aren’t sure how much vision Grayson will eventually have, we are giving him as much exposure to things with his other senses as we can. Also, his therapist thinks she has found him the type of swing we need to get him next! (G’s poor baby swing groans every time I put him in it). The school district has one at one of the elementary schools and we are going to check it out next week.

This afternoon we went to Grayson’s school and met with his teacher to learn about ipad apps they will be using with him next year. There are literally hundreds of apps for kids/special needs and it can be overwhelming to try to find the best ones. His teacher spent a lot of time showing me specific ones that they use, but also showed me this site. Even if you don’t have a special needs child, from the little time I’ve spent on it, BridgingApps is an awesome resource for all families, regardless of their child’s ability level. The apps are filtered by target skills and reviewed by therapists. Check it out! Thanks to an amazing, generous friend, Grayson will be getting an ipad soon. We are so, so grateful- I really think it’s going to be an incredible tool for him. I can’t wait to start app shopping!

While we were at the school, the other teachers graciously took care of Grayson while I talked to his teacher about apps. The school actually has a ChildRite seat (the special needs version of the Bumbo- really it’s just a giant Bumbo). I’ve been wanting to get one for Grayson, because just like all his other baby equipment, he still needs it but is almost outgrown it. We tried it out, and it works perfectly. I think I’m going to order him his very own soon!

As we were leaving the school, I checked my phone and saw the best email I’ve received in a long time- it was from Grayson’s case manager at MDCP, who I have been emailing and calling for a week with no response. Grayson qualifies for MDCP!!!!!!!!!!!!!! We knew this was probably going to happen (since the case manager told us he was ‘automatic’ due to seizures) but I was still nervous until we had an official word. This is a HUGE weight lifted- we will get Medicaid as well as respite hours. There’s one more big hoop to jump through- we have to spend one night in a nursing home. We found a nursing home a few months ago a few hours from us, and the Admissions Coordinator has been wonderfully patient with us. We are hoping to do his stay early June so we can get our benefits going ASAP! Qualifying for Medicaid also means that Grayson will be able to get private OT, PT and Speech at school next year, which I am so excited about (for him!).

Tomorrow, Grayson has his hearing aid appointment, Wednesday we see his GI, and Thursday is his big testing day. No one can tell me that being Grayson’s mom isn’t a full time job- ha!

Right now, I am so excited for Grayson and everything he has going for him. Despite his struggles, the kid really has some incredible opportunities and people in his life. And I am learning SO much- more than I ever cared to know about genetics and metabolic testing, but I’m grateful the information is out there.

**Please continue to pray for my friend M and her Baby C. He is still not out of the woods. Thanks.

I had a great Mother’s Day spent with beautiful weather, family and friends. For all you people who told me that yes, I should go buy new sheets even though they are so expensive,  you will be happy to know that my sweet husband surprised me with sheets for Mother’s Day- yay! And the G-Man gave me a gift card to get new lamps for our bedroom.

We had a lovely morning at church- went to our monthly mental health support meeting and then heard an incredible testimony by a mom who had brain cancer in the service. We then had lunch with one of my besties and her family, and Grayson actually was interested in trying some of my pasta salad. I cannot tell you how thankful I am that he doesn’t have a food aversion but geez, I wish he would hurry up and learn how to chew and swallow. He “choked” a few times and eventually puked all over me- good times!

My friend and I then went grocery shopping for another friend whose baby is in the PICU on life support. If you can, please say some prayers for Baby C and for my friend and her family.

Wrapping up the day watching the last episode of Desperate Housewives ever (sniff sniff). I know, it’s an awful show, but I’ve watched it since the beginning and am sad to see it go.

Tonight, I am so thankful for my mom, who is an amazing mom and Grammie. I’m thankful for all my mommy friends who support and inspire me every day. And I am so thankful I get to be this little guy’s mommy.

So yeah, “Sweet Dreams” wasn’t exactly the most accurate title of yesterday’s post. “Nightmare” would have been more appropriate. The sleep study was awful, but it’s over.

Grayson did exactly opposite of what I thought he would. I thought he would be a mess for the set up (which took about an hour) but then go right to sleep when we laid him in the crib. HA. He actually was a little trooper while the sweet tech glued wires all over his head and chest, thanks to some cool light up toys and his Grammie, who came to help. But as soon as the tech tried to put the nasal cannula in his nose, he freaked out. Freaked out big time. He screamed and screamed and pulled the thing out. We tried everything to calm him down- his mobile, Veggie Tales, holding him, light up toys- nothing worked.

Finally, he fell asleep in my mom’s arms and she gently laid him down. My mom left, and I thought we were good for the night. That’s when I published the post. Then about two minutes later, he pulled the cannula out again and woke up when the tech repositioned it. Hysterics. The worst part about it was he couldn’t suck his thumb, which is his main self-soothing technique. Everytime he tried to put his thumb in his mouth and realized he couldn’t (because of the cannula), he broke out in fresh hysterics. At one point his screaming sounded very panicky- poor baby.

But his tired body finally gave up and he (mostly) fell asleep for the night. He did cry out several times in the night and his stupid feeding pump started beeping at 3 am, but thankfully he didn’t really wake up.

The tech woke us both up at 6 am (ugh) and Grayson was actually pleasant until she had to remove the wires adhered to his skin and scalp- ouch! More crying. I tried to wash the glue out of his hair but there was no bathtub- just a shower. I laid him on the floor of the shower on a towel and shampooed his hair and tried to get it out with a washcloth. That didn’t really work so then I just balanced him with one arm and stuck his head under the sink. I’ve since shampooed his hair twice more today- there’s still sticky stuff in it.

I asked the tech if he had any seizures and she said she wasn’t allowed to tell me. She did ask me if he always “chokes and gags” when he sleeps. Uhh….probably. It’s sad, but so much of what Grayson does is “normal” to me that I don’t really pay attention. Like when she commented on his super loud breathing when he’s on his back. Yeah, he does that all the time, but I don’t really notice.

I will be very interested to get the results of this test. She did say that if they find anything abnormal we may have to do another one. Nooooooooo!!!!

So now I don’t know how to feel about the tests next week. Yesterday, I really wasn’t worried at all about the sleep study- thought it would be “easy”, and it turned out to be one of the most awful things he’s been through. So do I worry about next week and then be pleasantly surprised if it’s just not that bad? Or not worry and just let whatever is to be happen. Ugh. I try to be level-headed and non-dramatic about all of Grayson’s stuff, but last night really caught me off-guard. And then the tech was telling me how much she’s learned about Mito and how it’s really scary. Yes, it is scary, but I don’t let myself be as scared as maybe I should be. Maybe it’s my defense mechanism.

Anyway, Grayson is fine- he took some good naps and went to bed at 5:30, happily wire-free.

My hero, leaving the hospital:

We saw an ENT this morning, adding yet another specialist to our list. I was pretty clueless as to why we were going, other than our Mito specialist wanted us to get another opinion on Grayson’s hearing and lack of any speech. We left Katy at 6:45 for our 8:00 appointment. I was having panic attacks the whole way because 1. I needed to go to the bathroom badly and kept envisioning scenarios where that didn’t end well and 2. I never seem to learn that leaving an hour and 15 minutes before an appointment in Houston rush hour is not enough time. But we made it, found a bathroom, and all was well. And honestly, I’ve just got to get over the whole rush hour traffic thing, because G’s school is in the same area and I’ll be schlepping down there 3 times/week starting in August.

The Hearing Impaired teacher for ECI met us at the appointment, which was great, and I so appreciate her making that drive and for her extra set of hands. We are trying to qualify G for her services, and she knew the right questions to ask the doctor to make that happen.

First we met with the audiologist at the practice and she did another hearing test in the booth, which G has never done well in. Today, he responded to voice on his right side, but no other sounds on his right or left. The left ear is the one he has hearing loss, so his reaction fit.

The doctor saw us after that, and was great. Physically, Grayson’s ears look great- no fluid or physical problems. I am so grateful that we haven’t had to deal with ear infections on top of everything else. We are going to do a hearing aid trial on the left ear for three months to see if it makes any difference in language and speech development. The doctor made it clear that he doesn’t think it’s going to work. He agrees with our neurologist and the other audiologist we saw that Grayson’s lack of speech is probably totally neurological and not hearing-based. He explained that kids who are totally deaf in one ear can still develop normal speech, so someone like Grayson with just some loss in one ear should be talking just fine if that was the only issue. BUT he doesn’t want to miss out on the chance that a hearing aid could help…so here we go. We go back in a week to get it.

The ENT also wants to repeat the ABR in three months, but I explained I didn’t want to sedate him unless absolutely necessary, and he totally understood. So in August, we are going to try to do an ABR in his office while Grayson is sleeping. It may or may not work, but it’s worth a shot to do it drug-free.

Grayson took a nap on the way home and that was IT for the day. Good grief, it’s been a long day. We tried to take a walk, but it’s already a billion degrees outside and I’m worried about Grayson in the heat. What in the world are we going to do this summer?!?

Because I complain when we have nothing to do, I won’t complain about our schedule the next two week. But yikes, we are going to be busy. Thankfully, a lot of it is fun stuff (pool party for G’s school, baby shower, support group dinner). This Wednesday is Grayson’s sleep study at the hospital, Tuesday we get the hearing aid, and next Thursday, he is having his MRI, spinal tap, EKG and Echo cardiogram, all under one sedation- hooray! Of course, I am terrified to see the results, but also relieved we were able to get all the tests scheduled so quickly.

So that’s what’s new in the World According to Grayson (is there any other world? sheesh). What’s new with you?

I just got home from Ryan’s softball game- the girls won 12-0, moving to the third round of playoffs- Go Falcons!

There was a family in the stands with a 9 month old (I heard her say his age) and what looked like a 2 1/2 year old. The older child was acting like, well, a 2 1/2 year old. He was running up and down the ramp of the bleachers with boundless energy and making a lot of noise. His mom kept trying to get him to stop running and sit still. Stop it, stop it, she kept saying, exasperated.

I turned to Ryan’s friend, who had come to watch the game and said, If Grayson could do that, he could run and bang, and make as much noise as he wanted, for as long as he wanted. And I mean it. I wanted to tell that mom to be thankful for her healthy child, that he was doing exactly what he was supposed to be doing for his age. To let him use his legs to stomp on the metal bleachers- who cares how much noise he makes- we are at a softball game, not church. He’s healthy, and little- let him be.

Grayson’s daddy is a coach. As he gets older, we will hopefully be spending a lot of time in bleachers cheering his teams. And it probably won’t look at all like we had imagined. Grayson may never chase down a foul ball to throw back over the fence to the umpire. He may never get to run the bases after a game. He may never even eat a hotdog or sno-cone. The stuff of childhood, of being in a sports family, he may never do.

I’m sad about this tonight.

No real coherent post today…just what’s swirling in my brain these days.

• Dogs. Driving me crazy. I love them, I really do, but they make my life a lot more stressful. And there’s four of them. Sometimes I wish I was one of those people who is ok with giving pets away, but then there’s the moments like now, where two of them are snuggled up next to me while I blog. They are family.

• Softball. Ryan’s team is in the playoffs- my favorite time of year. I grew up playing softball and still sometimes I miss it so, so much. Anyway, R’s team is 28-1 on the season- Go Falcons!

• Weight loss. Ryan is doing a weight loss program and has already lost 30 pounds. I am so proud of him. And he’s eating vegetables. Amazing.

• Vaccines. My research obsession right now. It’s frightening what I’m learning.

• Sick babies. So many sick babies. Why?

• Ipad. Grayson won a Playstation in a raffle. We returned it (because G is the last person on earth who needs a Playstation) and are considering using our credit towards an ipad for him. From what I hear, ipads are revolutionizing the way special needs kids learn, but my instinct says that right now, it would just be a really expensive chew toy. I’ve emailed the director of his school to see what she thinks.

• Scary mail. We got a Care Plan letter in the mail yesterday for Grayson. We will carry it with us so if we ever need treatment for him in a hospital other than the one our Mito specialist is at. It’s an amazing thing to have, but the letter is intense. It basically gives worst case scenario information, so we will be taken seriously in an emergency. It makes the prognosis of Mito patients sound very, very bleak, and is personalized with Grayson’s specific issues. Tough.

• Sleep Study- scheduled for next Wednesday night. I’m just looking at it as a night out in a hotel hospital room. We check in between 7 and 8 pm- and then who knows how long it will take to set everything up and actually put him to bed. Grayson’s bedtime is 6 pm. This should be interesting.

• Clothes. My husband says every few months he prepares himself for a meltdown from me about my wardrobe. So R, here is my meltdown. I have an event for work tomorrow- what am I going to wear so I look like a mom professional person?

• Sheets. We desperately need new ones. But ugh, those things are expensive. I could think of a billion things I would rather spend $100 on. Like clothes.

What’s on your mind these days?