So I guess Grayson thought it was lame that we had no Friday plans and decided to mix things up.

We got home from school yesterday and I put him in his excersaucer and turned on his music. A few minutes later, he was slumped over and zoned out. I thought he was just exhausted from his day and took his picture, actually planning to post it on Facebook.

I did a few things around the house, and when I went back in to check on him, his head was buried in the excersaucer and he was making a noise- I thought he had fallen asleep and was snoring. I went to take another picture and realized he was seizing. This seizure was unlike any he’s had before- it was more like the “Hollywood” version- convulsing, foaming at the mouth, non responsive, and wet, clammy skin.

By the time the ambulance got here, the first seizure had ended, I put him in his swing, but a few minutes later a second one began. The paramedics laid him on his side on the floor, put an oxygen mask on him and he immediately started vomiting everywhere. They had me administer his emergency rectal gel that we have on hand for seizures lasting more than 5 minutes (we’ve never had to use it before).

The ambulance rushed us to the hospital with sirens and lights, and fortunately, he was stabilized by the time we got there. Ryan met us there, along with his mom, sister and niece. My amazing friend J brought diapers and snacks, because I was so frazzled when we left the house that I forgot to grab the diaper bag. Ryan’s sister went and got me dinner, and we waited. They put in an IV and took blood, and Grayson didn’t cry at all- he was so out of it. He had a CAT scan that came back abnormal- they compared it to the last CAT scan he had a year ago, the night of his first seizure. The two scan scans were very different- not good.

Because of the nature of the seizures, the CAT scan, and Grayson’s Mitochondrial disease, we were transferred downtown by ambulance a few hours later. My brother and his wife met us at that hospital. By the time we got to sleep, I had told his entire medical history (not just what happened yesterday) 4 times. Seriously, why can’t these interns, residents and attendings just talk to each other? It’s so annoying.

I love how the transfer nurse wrote the name of G’s seizure med on his hand- ha!

We were told we would see neurology first thing in the morning and to expect that they would order and EEG and possibly an MRI. Remember Grayson just had an EEG on Wednesday? And he HATES them? So we both went to sleep- G in the cage-like hospital crib and me on the oh-so-comfy “couch”- way less fun when you’re pregnant, let me tell ya.

They were right- a neurology intern came in about 7:15 am- waking G and I up. I won’t complain though, because this was way better than waiting for hours to see a doctor. About 30 minutes later, the entire team came in. The attending neurologist was great- listened carefully to me and answered all my questions. Since we really haven’t ever had Grayson’s MRI results from May discussed with us by a doctor (because our doctor has been on maternity leave), he pulled up the scans on the computer and gave us a detailed explanation. He was also teaching the med students who were with him, so it was a whole “lesson” on our little dude’s brain.

Grayson’s brain is not normal. The doctor explained that due to the abnormalities, his epilepsy is not surprising and expected. He has a very thin corpus collosum, and white matter volume loss. He pointed out on the scans large black areas that should be white. He doesn’t have nearly enough white matter in his brain that would be appropriate for his age. This is why G cannot sit up, crawl, walk, or talk. His brain doesn’t allow his body to do those things. We don’t know whether or not this will get better, stay the same, or get worse.

The doctor surprisingly did not think we needed an EEG today- hallelujah! We see G’s regular neurologist on Tuesday for his Botox injections and will discuss all this with him. The hospital doctor said the seizures yesterday were most likely triggered by the new schedule and increased activity at school. He did say school is very good though, because the new experiences and stimulation will help his brain develop.

We were discharged this morning about 10:30 am, went for Mexican food to celebrate a short hospital stay (G ate a few bites of guacamole!) and went home. And then Grayson proceeded to take a 4 hour nap- poor worn out baby. He woke up happy, played for a few hours, then went right back to sleep at bedtime.

Other than being exhausted, Grayson is back to normal- he was actually in a great mood all day. Hopefully this little incident was just a bump in the road and we can move on and have a great second week of school next week!

Dear Grayson,
Happy 23 months- in one month you will be the Birthday Boy again! I really can’t believe I’m going to have a TWO year old in about 30 days!

You have had a good month. Thankfully, you are sleeping much better than you were last month. You are still waking up once or twice in the early morning hours, and usually your daddy goes in your room and sings to you- it’s so sweet. He always tells you you need to go back to sleep for 3 more hours, and usually you obey him.

Today, we had a rough afternoon. You had an EEG to check for seizures. Each time we do one it gets harder and harder- today you screamed hysterically while the tech put the wires on your head. You fell asleep briefly but were awake and annoyed most of the test. I can’t say I blame you, but it would have been easier on both of us if you had just gone to sleep. I know you hate it, but you do make a pretty cute mummy!

Your second day of school is tomorrow and you have your speech therapy evalulation in the morning. The therapist said to bring your favorite food so she can see you eat. I wonder if I can get Mexican food before 9 am?

I love you so much sweet boy and am looking foward to soaking up every minute of the last month of your second year.

Love,
Mommy

Grayson has had a tough couple of months- his body just won’t relax. He’s really stiff, and there’s the ever-present frustration that his body won’t let him do what he wants it to. I also mentioned before that sleep has been a major issue for us, and I asked for advice on things that may help.

My friend Lisa strongly encouraged me to get Grayson a weighted blanket from SensaCalm. She says:

SensaCalm blankets are a miracle. My son has Autism and struggles with many sensory issues. When the blanket arrived, we immediately put it on him and he was instantly calmed. He had the biggest smile on his face! We use the blanket all the time. My son will now go find it and carry it around with him to bed, to watch tv, to the car, etc. It is such a wonderful feeling to know that he has something to calm him in any and all situations.

My mom generously ordered Grayson one of these blankets a few weeks ago. They are weighted according to the age and size of the child and the company has lots of fabrics and colors to choose from.

Yesterday morning, Grayson woke up WAY too early and was obviously still really tired. Despite this, he wouldn’t go back to sleep and even when I brought him in the living room and turned on his music, he was fidgety and fussy. I put the blanket on him, and he INSTANTLY became calm and very still. This was how he stayed for the next hour and a half! Although he didn’t go back to sleep, the blanket gave his body some much-needed rest.

Later that same afternoon, when Grayson got fussy, I put the blanket on him again, and within minutes he was asleep, and stayed asleep for an hour.

So far, using the weighted blanket in the crib hasn’t worked out as well as I had hoped. I don’t know if it’s because Grayson has never slept with a blanket and just isn’t used to it, or if it’s too bulky and hot, but he wiggles out of it and pushes it with his feet to the end of the crib. However, he has been falling asleep MUCH more quickly and easily the past few nights (no idea why, but I’ll take it!) so him not using the blanket at night hasn’t been an issue.

Most families that order weighted blankets for their children have Autism or Sensory Processing Disorder (which I suspect G has) but SensaCalm’s website lists many other conditions that their blankets could benefit such as anxiety, tantrums and even Restless Leg Syndrome, which I suffer from. I’m going to have to try out Grayson’s blanket on my legs!

I highly recommend a SensaCalm or other weighted blanket to anyone with a child who has sensory issues, or even if they don’t and want something calming to help them relax. So far, it’s been a miracle product for us after just a few days!

Note: I was not contacted about or compensated by SensaCalm for writing this post. I just think they make a great product and wanted to share something that working for us!

Grayson took his first bath (well, really it’s a shower) in his new chair tonight. Poor thing was totally confused. I think he liked how the water felt coming from the sprayer, but he kept looking at me with a lot of uncertainty and fussed a little. And I really need to figure out the straps- they weren’t adjusted correctly so I didn’t use them and just watched/hovered over him very closely. I know I’ve talked about and anticipated this chair a lot, but I just can’t tell you how thankful I am for all of Grayson’s “special needs” equipment.

Although I am so happy about this new-and-improved bathing experience, and Grayson actually being in a seat that actually fits, I felt a little sad and nostalgic looking at his little, smelly with mildew infant tub sitting on the counter. I just can’t throw it out just yet. After all, I bathed my little dude in it every night for almost 23 months. I remember how it cradled teensy-tiny newborn Grayson at 5 days old…oh, my heart.

And not to make baby-bathing into a cheesy life metaphor, but I think sometimes this is the way I hold on to things in my life- things, habits, or people that no longer fit, that may even be stinking up my life. And yet, I hold on to them because they are familiar and because change is hard, and uncertain.

But we change, and we grow, and we must make adjustments to fit that growth. And usually those changes lead to great things that will someday become certain, and familiar, and that just fit.

Since we had the camera out, I had Ryan take a 15 week belly shot. Related: I am 15 weeks ALREADY?!? Also related: I’ve felt the baby move twice and both times startled me so much I yelped!


Is it seriously only Tuesday? This week has been eternally long already. Yesterday, I got a call around lunchtime from the trainer at Ryan’s school that he was having chest pains and shortness of breath and that they had called EMS. Thank goodness for our nurse because I was able to leave right away to go and be with him. He checked out ok, but EMS recommended we go to the hospital. I drove him to the ER, and long story short, they kept him overnight for observation and he came home around 6:00 tonight. He did not have a heart attack, thank goodness, but will follow up with a cardiologist on Friday to see if they can figure out the cause.



Visiting Daddy- G was glad not to be the patient this time!

This morning, we had an appointment to get Grayson fitted for his AFOs- orthotic devices that will help his stability when he puts weight on his legs. In true Grayson fashion, he was generally uncooperative and being a major wiggle worm. I turned on Veggie Tales music on my phone and he instantly calmed down (Veggie Tales is Grayson Crack). He also wanted to chew on my phone, which I stupidly thought would be ok because I have an Otter.Box case. Ummm…so my phone may be able to survive a fall from a 10 story building, but baby drool- forget it. By the time the casting was done, I took my phone from his mouth and it wasn’t working- and there was a pool of drool under the protective screen. Grrrreeeat. Thankfully, putting it in rice for awhile and wiping it down really well seemed to work- no issues now. But…ugh. Oh, and you get to pick a design to go on the AFOs. I’m normally totally against licensed characters on stuff for my kid, but when I saw that Veggie Tales was one of the options, I just couldn’t NOT have Bob and Larry on my kid’s feet- ha!



Getting measured

Tomorrow is a big day- not only is Grayson’s wheelchair being delivered, but his bath chair too. And you know what that means? After almost 23 months of bathing him in the infant tub, tonight was possibly his LAST bath in it. I am beyond excited for this nastiness to be in the trash tomorrow (Baby #2 will have a brand spankin’ new tub). I just had to take a picture of his last bath tonight- Ryan just rolled his eyes.



Yeah, he’s a tad too big for this tub- ha!

Grayson starts school on Monday! Life is about to get crazy, but I am so very excited for him. I am meeting with the organization that does therapy at the school on Thursday; we have decided for right now to keep his ECI therapists (we are both attached to them) and try and get additional therapy for him at school. I am hoping he can get some intensive speech therapy at school to focus on oral feeding- we’ll see what they say on Thursday. Because he’s going to school 3 days/week, we will be fitting in 4 therapists and hopefully most doctors appointments in 2 days. Well, at least we won’t get bored!

Life is plugging right along- we are just thankful Ryan is ok. Here’s hoping the rest of the week is drama free!

Well, the genetic results weren’t exactly what we’d hoped, but I wasn’t surprised. They did not identify what genetic defect is causing Grayson’s disease. What they did show was a LOT of mutations and “Variants of Unknown Clinical Significance”- meaning, not normal, but haven’t been studied to see if they cause disease or not. Some of these mutations are associated with diseases, two of them being Leigh’s Disease and Muscular Dystrophy.

At this point, we could do further testing on the specific mutations, and we may. Grayson’s neurologist did order one test to rule out a specific disease (I don’t even remember the name) but seemed ambivalent about other testing. And right now, I’m kind of ambivalent too. We know Grayson has Mito, it’s not curable, and we’re managing it. I’m just kind of tired of waiting on test after test, which always just seems to lead to more questions than answers. When we see the Mito specialist when she returns from maternity leave, we’ll see what she has to say about further testing.

Ryan and I will be looking into genetic counseling. I told Dr. R I am pregnant and he said nothing on Grayson’s results will tell us anything about our baby. But he definitely thinks we need to get genetic counseling. I have no idea what that will entail and what testing we will have to do, but hopefully will give us some insight into our situation.

Besides the genetic results, I had a lot to discuss with Dr. R. I told him about Grayson’s irritability and sleep issues, and when he examined him, he noted how stiff he is and how his clonus is worse than his last appointment. He has also started scissoring his legs, which is not good. There’s 2 options to treat spasticity (hyper muscle tone/stiffness)- muscle relaxers and Botox. We don’t want to do muscle relaxers right now because they don’t target specific muscles and could have a negative effect on G’s progress. So we are going to try Botox. It will be injected into his legs and the effects last about 3 months. Dr. R also ordered another EEG because he suspects his irritability and sleep issues may be caused by neurological disturbances/seizures. Sigh. We do the EEG in two weeks and will schedule the Botox when we get it cleared with insurance.

Dr. R also wrote a prescription for us to get a handicap licence plate. He pointed out that not only do we need this because of Grayson’s lack of mobility, but because he has Mito, he needs to stay out of the heat as much as possible, and this will help a little with that.

Overall, it was a good appointment and I’m glad we finally know, after 20 weeks, what that tube of blood showed. Although basically what it showed is medical science has a long way to go in understanding this disease!

Thank you so much for your comments on my last post- your encouragement means so much to me and I have reread them so many times and they truly have lifted me up.

I am doing better. I’m officially in the second trimester and like magic, I am feeling SO much better. I’m still tired and hungry all the time, but I will take that over nausea and puking. (I’m hoping I didn’t just jinx myself by writing this).

And, not surprisingly, feeling better physically really has changed my outlook on everything else. Grayson’s difficult phase doesn’t seem so unbearable, and I find myself more excited than anxious about his little brother or sister most of the time.

Another thing that was bothering me was the amount of hours we have nursing care. I do not in any way want to seem ungrateful for the help I have now. It is so nice having the freedom to work, run errands, or just rest without having to worry about childcare. Our nurse is great, but I was and still am, having a hard time adjusting to not being with Grayson all day every day like I have for almost 2 years. I got a call last week from our agency informing me that we qualify for even more hours than we have right now. I really do not want someone in my house 60 hours/week. I am a stay at home mom because I choose to be- I want to be the primary caretaker of my children. Yes, I need a break, and yes, I admit I need help, but not that much. I also do not want someone different taking care of G each week (as we’ve had the past 3 Sundays)- I don’t think it’s good for him at all. So today I talked to our nurse and am going to try and work it out so she works 2 days during the week and the weekends. We won’t have anyone Sunday mornings (because our nurse goes to church) but I was missing bringing G to church with us anyway. I’m hesitant to reduce our hours too much though, because I know when the baby arrives, I will need all the help I can get!

Grayson is doing a little bit better too. The past few days, he’s taken decent naps (1-2 hours) and yesterday and today he slept until almost 7 am. He’s still waking up at least once a night crying, which I can’t figure out. Last night he cried and cried and when I went to pick him up, it was obvious he wasn’t awake. His body was thrashing and he just kept crying. Night terror? Seizure? I am planning on changing some things to try and make the sleeping thing better: blackout curtains for the nursery, a louder sound machine, sleep sack and weighted blanket. Any other suggestions?

The genetic results are finally in! The lab will not release them to us and G’s Mito specialist is still on maternity leave and won’t release them until she reviews them, so I called G’s neurologist and begged for an appointment sooner than our August 27 scheduled one. They squeezed us in tomorrow, so hopefully we will get lots of useful information! In addition to the results, I have a long list of questions and concerns for him, especially since we still haven’t talked to a doctor about the MRI and spinal tap he had in May.

Hoping to have a big update tomorrow!