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!

I’ve been wanting to write this post for over a week now, but any time I’ve had any time to sit and do it, exhaustion wins and I’ve done, well, nothing.

I’m really struggling right now, both physically and emotionally.

Right now I’m sitting in my room listening to Grayson scream his head off in his crib. He’s so tired and desperately needs a nap, but he refuses to lay down and go to sleep. These days, Grayson is a really difficult child. Sleep has been awful. He barely takes naps, and is taking over an hour to fall asleep at night. He wakes up multiple times a night crying. And during the day he cries/whines/fusses off and on all.day.long. It’s really frustrating- on him and me. Most of the time it’s because he’s either tired (because he won’t sleep) or he’s frustrated with the lack of cooperation of his body. I’ve said before- he desperately wants to crawl and he’s so close- but his front just won’t coordinate with the back. So he cries. And I can’t say I blame him, because I would be mad too, but sheesh, listening to it all day gets really old, fast.

Medically, he’s doing pretty well. He hasn’t had any seizures (that I’ve witnessed) in weeks, and he hasn’t been sick. He still throws up relatively frequently, but it’s better than before. I wish we could push his bolus feeds to a higher rate so he could be off the pump more during the day, but I’m grateful that at least he’s not on it 22 hours/day anymore, and he’s still gaining weight. We are STILL waiting on his genetic testing- the supposed 15 week turnaround was up June 23, so it’s been more like 19 weeks now. That’s a long time to wait for results from one vial of blood. I talked to someone Friday who said the testing is actually complete, they are just waiting to sign off on it and release it to our doctors- whatever that means. She said it should be early this week. We’ll see.

I think all this would be easier to handle and more tolerable if I felt better and had more energy. But I feel awful most of the time and have zero energy. When I’m not eating or just ate, I feel either famished or nauseus. I’m still throwing up regularly, and like I said, have no energy to do anything. I have so many things I would love to do, but I’m just so tired.

This pregnancy has been hard. First of all, it was totally unexpected, which has been a challenge to come to terms with. I felt like prior to this summer, we were finally in a place of acceptance and being comfortable with the unexpectedness of having a child with special needs. While Grayson is a lot of work and our path looks different than most, I was in a good place. I had support, knowledge and a plan going forward. The genetic test we are waiting on was supposed to be a big answer as to whether we should even have any more kids. Now, well, we are having another kid not knowing much about our chances of Mito recurring in our family. It’s scary.

With Grayson being so difficult at the moment, I question a lot how this whole thing is going to happen in February. And I know it will, because we don’t have a choice. We will make it work- I just wish I knew exactly how so I didn’t have to worry about it. I’m upset that this pregnancy has already taken so much time and energy away from Grayson, and I worry how much more time a new baby will take away from him. I’ve heard from so many people what a gift a sibling will be for him, and how he/she will probably motivate him in his progress, but I know it’s still going to be hard at first. Really hard.

All that being said, I am excited about this baby. Although I am definitely NOT ready for the arrival yet, I know that meeting him/her for the first time will be amazing and he/she will be the perfect addition to our family. I told my mom I feel horrible for having some negative emotions about such a blessing, but she said just because something is a blessing doesn’t mean it isn’t hard.

In a few weeks, Grayson starts school and we will have to be in more of a routine than we have this summer. It will be a very good thing. I know hard times like this don’t last forever, and things will get better. There are so many good things to look forward to- I’m just trying to push through and survive this season.

Dear Grayson,

You turned 22 months a few days ago- 22 months on the 22nd and 2 months from being 2- whew! I really can’t believe you are so close to your second birthday.

This past month was pretty challenging for several reasons. One, I was away from you for basically 10 days. Although you did great with your daddy and grandparents, I know it was tough on both of us. I am so glad that we are back under the same roof! You are still working really hard on a lot of skills, which is great, but not mastering them yet is causing you a lot of frustration. It makes me so sad when you burst into tears when your body just won’t do what you want it to. You try so hard and keep trying despite your struggles- I am so proud of you.

I am so sorry I have been so sick and tired these past few weeks. We talk to you all the time about being a big brother, but I know this part of it is no fun (for either of us). I am looking forward to having a lot more energy for you and not having to interrupt playtime to go throw up. Thankfully, having your nurse start happened at the perfect time- I am getting to rest and know you are well taken care of.

Sleep has become quite the issue with you the past few weeks. Naps have become short and sometimes non-existent, resulting in you being one grumpy baby by 5:30. You are practically asleep, contentedly sucking your thumb while we put your jammies on, but as soon as we put you in bed, you start screaming and climbing up the crib. We are having to sort of let you cry it out, because I’ve decided you may be a tad bit manipulating, little guy.

You start school in a few weeks- I am SO excited for you! I just know you are going to learn so many new things and love your teachers and new friends. Although school starting for you is exciting, we will be sad that Daddy has to start school too. We will especially miss him being here for bath and bedtime- I’ve gotten spoiled with him getting your tube ready, dressing the top half of you, and brushing your hair before we put you in your crib.

I love you so much sweet boy- you are my sunshine.

Love,
Mommy

After ten days of traveling, I’m finally home for good. I’ve barely seen my little guy in ten days, and it was so good to cuddle him all afternoon today. I’ve missed my family being in one place, I’ve missed our routine and schedule, I’ve missed my friends, I’ve missed my blog, and I’ve missed my bed. I’m so glad to be home.

I was in Charlotte last Wednesday through Monday. Although not a vacation, it was really nice to be in one of my favorite cities surrounded by family. My grandfather’s memorial service was incredibly moving and special- as a church organist for 53 years, he knew exactly what music and scripture he wanted, so it was personal and perfect. The church was packed, and the line to talk to my grandmother after the service was almost out the door- just shows what an impact my Grandaddy had on earth. He will surely be missed by so many.

Unfortunately, my high-drama fetus did not give me a break while I was on the trip. By some miracle, I didn’t throw up on the actual flight to NC, but didn’t make it to baggage claim- ugh. I felt pretty crappy the rest of the trip, but rested frequently and ate everything in site to try and keep the nausea at bay.

Ryan and Grayson picked me up at the airport on Monday. Ryan did such a good job taking care of G and I was glad they got a lot of bonding time. I loved G’s reaction when he saw me- he just laughed and laughed- so cute. We were home for one day (Tuesday) but instead of getting to spend the day with G, I spent the day hugging the toilet and in bed, so sick. I am SO OVER the first trimester (12 weeks tomorrow, thank goodness!). Thankfully, Dayo, our nurse, was here so Grayson was well taken care of.

Wednesday, Ryan and I left for an already-scheduled mini-vacay to the Texas Hill Country. We stayed 3 nights in a B&B and ate good food, watched several movies, outlet shopped, and just relaxed. It was great to get away, but by today I was missing Grayson so much and was feeling so guilty for the length of time I’ve been away.

It’s so good to be home and under the same roof as everyone in my little family. This coming week is Ryan’s last week of summer vacation before he goes back to work, and I’m planning to spend as much time as possible with both my boys.

I am leaving for North Carolina on Wednesday. Sadly, I missed saying goodbye to my grandfather one last time; he passed away peacefully in Saturday evening. I am trying not to feel guilty or upset that I wasn’t there last week but rather focus on remembering the wonderful memories I have of a man who loved the Lord, his family, classical music, and telling (sometimes inappropriate) jokes.

There is, of course, lots to do before Wednesday. I am going by myself; Grayson will stay home with Ryan and his nurse. Ryan is completely capable and I know things will be great at home, but I need to write instructions on stuff that I always handle- medication amounts and times, feeding times, therapy appointments, etc. I also need to find something to wear to the funeral and wash the clothes I’m taking. Have I done any of the above? No.

I did take care of one thing on my list of to-dos today- Grayson and I both got much needed haircuts. I’d been trying to grow my hair long for awhile, and I always liked how it looked right after I blowdried and straightened it, but 5 minutes later, not so much. So I got a few inches cut off and some layers- much better. Grayson of course looks A.DOR.A.BLE every time he gets his hair cut- makes me want to take him every 2-3 weeks!

Tomorrow, Grayson has a GI appointment in the morning and I have an OB appointment in the afternoon. I am anxious to talk to the GI because although bolus feeds are going relatively well (currently we are doing three 1.5 hour feeds during the day and continuous at night), he is still vomiting more frequently than I would like and is gagging and choking on his saliva a lot. And we just cannot push the rate any faster than we are right now or he can’t keep the feed down. Ideally, we would like a feed to last 20-30 minutes, a far cry from 1.5 hours for the same volume. He is not on any medication right now for his delayed gastric emptying, and I’m wondering if the GI will want us to restart those meds. Oral feedings are still going pretty well- he hasn’t eaten as good as the burrito from the other day, but continues to taste most things we offer him.

Pregnancy-wise, I am starting to feel a little bit better- I still am really nauseous and pukey most mornings and evenings, but I’ve been ok during the day for the most part. The craziest thing is I am already “showing”- if you count a lumpy, gross stomach sticking out as showing. This happened literally overnight. I am trying to embrace the fact that I feel huge and gross right now (I know, it’s only the beginning), but somehow my body changing isn’t nearly as fun and exciting the second time around. I am praying for a nice, boring, routine doctors appointment tomorrow afternoon with a healthy heartbeat! We gave the nurse the day off tomorrow since we are going to the doctor, but Ryan has to be at work at the time of my appointment, so I’ll have to take Grayson with me. Another reason I need a boring, routine appointment- I want it to be quick before Mr. Drama has a chance to be up to any of his antics!

Doing a Happy Dance over here tonight- this little dude ATE 10 BITES OF BURRITO when he and I went on a Grayson-Mommy dinner date! He actually ate it, not just tasted and spit it out like he usually does. This is more than he’s eaten in months- I am so proud.

I texted this picture to my mom and her response: Who eats burritos but not ice cream??? Ha ha!

I guess we’re going to have to make the sacrifice and go for Mexican more often now. (Boy after my own heart).

One thing about having a kid who doesn’t eat is I never think to bring a bib anywhere. Oops.

Thankfully (??) Izzy is willing to clean up after her brother, although I did find rice in his diaper and beans stuck to his Mic-Key button when I went to give him his bath.

Great way to end the day- I’m still smiling.