Good Things

So it turns out having an infant and a toddler takes up quite a bit of time and is somewhat exhausting (shocker!) and when faced with the option of blogging or going to sleep at 9:00 pm, I choose sleep. Ryan has off work this morning, so he took Grayson to school (bless him) so I’m sitting on the couch in my pajamas, Charlotte is napping, and I finally have 2 hands free to type. Ahhh.

The latest on me is while there are the ongoing stresses of life that I’m continuing to work through, life is pretty good right now. And because I love a good bullet-point post, here’s a list of a few of those good things:

  • Grayson: His new medication is already making a big difference in his quality of life. He is sleeping longer and better at night, and is calmer during the day. His teacher mentioned that changing his diaper has been easier this week, which means he’s already getting less stiff.

  • Nurse: Grayson has a new nurse and so far, we love her. She is staying at our house 3 nights per week, putting him to bed and getting him up and dressed in the morning. This is a HUGE help to me, as I’m able to take my time feeding and getting Charlotte ready in the mornings. The nurse is calm, and is a former massage therapist! Yesterday before his bath, she gave G a 20 minute massage and got his legs really loosened up- amazing! He loved it!
  • Charlotte: is doing fantastic. She had her 2 month well check last week and the pediatrician was somewhat concerned that she had fallen in percentile for weight. Instead of telling me to spread her feedings out like I thought she was going to tell me, she wants me to add another feeding to the day and wake her every 3 hours at night to eat. I was stressing a little about this, and honestly, I want to burn the growth chart. I decided just to continue to feed on demand during the day and let her sleep at night. Yesterday I weighed her and she’s up to 10 pounds (and her percentile is actually back up). And goodness, she’s cute and fun! (And she smiles all the time, just not for the camera- ha!)

  • House Hunting: is (hopefully) OVER. Last week, we found a house, put in an offer, and it was accepted. It’s a cute house, 4 bedroom, with rooms for both Grayson’s swing and the kids’ toys. It needs minimal work- probably just paint, really, and if all goes according to plan, we’ll close at the end of May. It’s in a totally different part of town than I have ever lived before, but is a better distance from G’s school and doctors than where we were living before. I’m excited about this new adventure, and glad the stress of trying to find a house is behind us!
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    We don’t have any specific Easter plans except church and lunch with the family, but check back soon for super cute pictures of the babies in their sweet Easter outfits!
 

Two and A Half

Dear Grayson,

Happy Half Birthday my sweet baby boy, who obviously has not a trace of baby left in you. How did that happen? Well, you may not be a baby anymore, but you sure are a handsome little boy.

You are sweet, silly, and love to laugh.

Your favorites are going to school, riding on the elevator, driving your car, swinging, and of course, your beloved Veggie Tales.

You adore your teachers, grandparents, and your mommy and daddy.

And soon I know you will adore your baby sister too.

You are my joy, my whole heart, and my sunshine.

You are my teacher. You have taught me what is truly important, and to not take life for granted.

I am a better person, and a mommy, because of you. Thank you, G-Monster.

I love you more than you could ever know.

Love,
Mommy

Letters to Charlotte: 2 Months

Dear Charlotte,

Happy 2 Month birthday, my sweetness! Although I am a little sad your newborn days are behind us, I am loving every minute this stage you are in. In the last few weeks, you have “woken up” and are an alert, happy, smiley little girl.

You started smiling a lot right at about 6 weeks, but still are a little shy to do it for the camera too much. You have also started “talking” a little bit- I think eventually you are going to have a lot to say!

 Your 2 month stats:

Weight: 9 pounds, 7 ounces on my baby scale. You will get your “official” weight (and height, I have no idea) at your checkup tomorrow. You are a petite little thing, but can you see the rolls on your legs and your chunky belly? I LOVE it!

Sleeping: Everyone asks how you are sleeping, and for today, I can say GREAT! The last two nights you have nursed, then slept 7.5 hours! You are still in the pack and play beside our bed, but now that Aunt Rebecca has left from her Spring Break visit, we are going to move you into your own room (at Grammie’s house). Hopefully your daddy and I will find a house soon and you can have your very own pink nursery and get to sleep in an actual crib. You still nap mostly in the swing, your carseat, or my arms.

Eating: Still going fantastically. You love to nurse, and I know Dr. D is going to fuss at me tomorrow because I am still letting you eat whenever you want, which during the day is every 2-3 hours. I am also pumping milk, and you will take a bottle enthusiastically- hooray!

Milestones: Smiling (my favorite) and yesterday, you rolled over a few times from you belly to your back! You are also tracking and following with your eyes really well. This is amazing to see, because this was one of the first missed milestones for your brother and our clue that something wasn’t right with him. Speaking of that, Grayson’s doctor checked you out a few weeks ago, and thinks you are perfectly healthy! We are so, so thankful for your health and the fact that you are doing everything on time.

Brother: You and Grayson co-exist, but both still don’t indicate you have a clue that the other exists. Oh well, I’m sure that will change soon enough!

I know you have only been here 2 months Charlotte, but I really can’t imagine or really remember life without you. You fit so perfectly into our crazy little family, and I still marvel at what a precious, unexpected gift you are. You are my joy, my heart healer, and I couldn’t love you more.

Love,
Mommy

A Goal for Grayson

I accomplished a major Mommy milestone (for me, anyway) yesterday: taking both kids to a doctors appointment by myself! I had a ton of anxiety about it beforehand, especially about getting both babies in and out of the double stroller in a parking garage I had never been to before and because Grayson is hard enough to take out by himself. But the whole thing happened with relatively few hiccups, except for the fact I had to breastfeed my screaming infant while the doctor held my screaming 2 year old- oy. (This was after trying to unsuccessfully um, pacify her with the pacifier while holding said screaming 2 year old, and the doctor said, “Feed that baby, it’s distracting to all of us.”(Gah, embarrassing).

Anyway, I loved, LOVED this new doctor. She’s a rehab doctor and the main reason we saw her is to try and get some help for Grayson’s stiffness. As I’ve said, his disease is progressing and he has gotten extremely stiff, making simple things like holding him, dressing him, and changing his diaper very difficult. Minutes after coming into the exam room, she bluntly told me that it’s obvious he is a very uncomfortable kid and probably in pain. She said we need to do something. NOW. Her urgency made me feel awful and comforted at the same time. I feel terrible this is my child’s “normal” right now- restless, irritable and in pain. But comforted because a doctor truly gets it and wants to help him, and help him quickly.

She showed me a technique I can use to calm Grayson down when he’s really irritated- and she did it on him and it worked! Basically you cup your hand and pound his chest- hard. It looks like I’m beating him, but it apparently feels good and calms him.

She prescribed Valium for him to take, which should relax his stiff muscles. We started tonight with a very low dose which we will slowly increase over the next 6 weeks. Grayson actually fell sound asleep while we were changing him into his jammies this evening- I have to think it was the medicine. He is supposed to have a PT evaluation with his new therapist in the morning, after his second dose. Hmmm…may be interesting!

She emphasized over and over that in her opinion we should have 1 goal for Grayson: keep him comfortable. Every therapy, piece of equipment, and activity we do with him should be focused on his comfort. Since his disease is progressive, we shouldn’t necessarily be looking for developmental progress. She said if we get him more comfortable and help his muscles relax, there is a chance he could learn to sit up, but we shouldn’t focus on that. She said not to let anyone tell me he needs AFOs (which he has, but we don’t use anyway) and shoes aren’t necessary for him if he doesn’t like them.

I’m sure to some, this may sound like we are giving up on Grayson by letting go of expectations that he will learn to do certain things. But we don’t know how long he has on earth, and I don’t want to spend the time we do have with him, which may be short, pushing him to do those things. I want his life to be comfortable, happy, and full of love. And if that means having a shoeless boy who swings all day while listening to Veggie Tales, while letting medication work to relax his body, so be it. Please pray for our precious boy that this medication will help him and improve his quality of life. He absolutely deserves that.

Yes, I’m a Mom on my iphone

Have you read the viral blog post Dear Mom on the iphone? It was posted several times on my Facebook newsfeed last week, and I read it, and then immediately felt awful about myself. Yes, I’m that mom who often reads blogs or plays Words with Friends on my phone while I push Grayson on the swing. I check Facebook and Twitter while I nurse Charlotte. But I also sing to Grayson and make silly faces at him to make him laugh while I’m pushing him. And I do plenty of staring at Charlotte in wonder while she’s nursing because she herself is a miracle and it’s a miracle that she eats. I definitely do not take that for granted.

Then I read several rebuttal posts like this one and I realized how judgemental the original post is, as are so many posts disguised at reminders to us moms to Seize the Day and Pay Attention because these little ones grow up in the blink of an eye. The thing is, I can’t think of any moms I know who don’t love their kids with everything they have and provide them with an abundance of love and attention. We capture so many moments on camera that the notion of us “missing” part of their lives is kind of ridiculous.

I’m all for limiting technology. I don’t want my kids growing up to think it’s acceptable to text or play video games at the dinner table. I want them to be able to look people in the eye and have an actual conversation. I want them to play outside and not spend their days staring at a screen. I don’t want my kids to ever think that my phone is more interesting or important than them. But, as this blogger pointed out so brilliantly, kids need to realize that the world (and Mommy) does not revolve around them, and it’s not just an iphone that pulls our attention away from our children. It’s not my job to be my children’s constant entertainer, although this is especially hard for me right now, because Grayson really can’t entertain himself, and I feel guilty if I leave him with nothing to engage him. I feel guilty when I’m feeding Charlotte (which obviously has to happen) and Grayson is crying on the floor. And then I feel guilty if I stick Charlotte in her swing for an hour so I can give Grayson the attention he needs. Sigh.

It’s so easy for Mommy Guilt to eat us up and make us feel inadequate at a job that we are all doing the very best we can. I really think it’s okay if we need to zone out on our phones for a few minutes at a time so we don’t go crazy doing a job that, let’s be honest, can be mundane and very repetitive at times. Let’s just all give each other a break.

Reality

This weekend, Grayson projectile vomited while we were out shopping, soaking his clothes with vomit and mucous. His tube extension came out multiple times, soaking his clothes with formula. I was called to the nursery at church this morning because they were worried about his stiffness. He isn’t sleeping through the night anymore, and often cries out in a state of half-consciousness, his body rigid and obviously in pain. He can’t be left “loose” on the floor for more than a minute because he loses his balance and hits his head. His disease is progressing: the disease with no treatment and no cure.

I try to be real and honest on this blog with my words, but I realize I’m sometimes my pictures skew reality. I’m no photographer (and 99% of pictures I take are on my phone), but I pick out pictures of Grayson to post where he looks adorable- smiling and happy. And a lot of the time he is- I can sing “Wheels on the Bus” or start a Veggie Tales song and he busts out with this killer smile, genuine joy on his face.

But the real story behind the pictures is there is often a lot of tears, gagging, throwing up, whining, and pain in his day. A lot of my time is spent keeping Grayson calm and safe, while at the same time happy and engaged. Some days I am more successful than others, and am so grateful for the support system I have that helps me accomplish these goals.

People often say that caring for kids gets so much easier as they get older, and I’m sure that’s true for typical children. But taking care of Grayson gets harder and harder as he gets older and more symptoms appear. He’s 26 pounds now- what’s life going to be like when he’s 40 pounds? 80?

His Mito doctor is putting him on a new medication for his seizures and is referring us to another specialist about his stiffness; it looks like we may be on the road to trying Botox again. It’s frustrating to have no guarantees- no assurance that this medication will control his seizures or the Botox will help his body relax (it didn’t before).

In this day of blogging and social media where everyone has digital photography and can post whatever they want to portray their lives however they want, I have to remember that everyone has struggles behind the smiling faces of their adorable kids and fabulous vacations that appear on the computer screen.

This week is Spring Break for both Ryan and Grayson- hopefully we can capture some moments of joy on camera and make some happy memories as a family while keeping the moments no one wants to remember to a minimum!

Healthy Girl

 
Yesterday, this little girl tagged along with her brother to his doctors appointment with the Mito specialist. Dr. K checked her eyes, her reflexes and her tone, all which are perfectly normal. At this time, she thinks Charlotte shows no signs of Mitochondrial Disease, and is healthy. So now, she can just get on with life as a sweet little girl. And yes, as you can see, she is all girl.
 
 

 

 


Thanks to Erin for such beautiful pictures!

Plastic Baby Crap

Lately I’ve read a lot of blog posts and have been thinking about simplifying- specifically all the stuff that seems to accumulate and multiply as the days go by. We currently have not one, not two, but THREE storage units holding the contents of our old house- and we are most likely going to have to move into something smaller. Living with my parents has been eye opening in that I really can survive (and be just fine) on much less stuff than I thought. Of course, the day I went into labor, I moved in here with about 3 weeks worth of yoga pants and a few t-shirts to get me through, with the rest of my clothes in the back of one of said storage units. I’ve since bought 2 pairs of jeans and a few shirts, but oy, my wardrobe is terrible right now. Oh well.

When we move, we plan to go through the storage units and hopefully get rid of a lot of it. But here’s the thing…what in the world is with THIS??:

This is the current state of the livng room. We have A LOT of Plastic Baby Crap (PBC). And yes, I know babies survived for zillions of years and did just fine without excersaucers, swings, bumbos, baby gyms and rock and play sleepers. And I know some would say my children would be better off banging wooden spoons together and being attached to my body all day than with all this PBC, but you know what? It’s what works for us.

Grayson has almost zero interest in toys that don’t light up and/or play music, or put him in motion. He can’t stack blocks, he can’t look at books (on his own). But you know what he adores? His baby gym that lights up and plays really bad music. His excersaucer. His music table that he turns upside down while sitting in his Bumbo. His swing. And just today I put together the plastic car I ordered that’s the same as the one he rides around in at school- he loves it! We ❤ PBC around here.

As for Charlotte, she’s into the PBC already too. As much as I would love to wear her attached to me all day (and I do hold her a huge portion of the time when it’s just me and her while G is at school), it’s just not practical with a toddler who can’t get around on his own. And since Grayson is at school 6 hours of the day, I try and devote as much time to playing with him in the afternoons when he gets home. Fortunately, Charlotte likes her swing, her Rock and Play, and her new baby gym which is off limits to Big Brother!

So we might soon be downsizing our house, our furniture and our clutter, but for now all this PBC is here to stay!

Changes

The last six weeks have been amazingly wonderful and incredibly stressful at the same time. On top of adjusting to having two children and the sleep deprivation that goes with a new baby (gah, I’m tired), there are several other life issues we’ve been dealing with as well.

I don’t think I’ve written about our specific living situation- basically, we had a contract on a house to buy but things just weren’t quite right and we walked away two days before Charlotte was born. We moved in with my parents that Saturday afternoon, and we went to the hospital just hours later. Being here has been wonderful- it’s a big house, my mom has been a huge help, and it’s close to Grayson’s school. We are currently trying to decide what part of town we want to live in, factoring in distance to Grayson’s school, his doctors, and Ryan’s school. And of course what we can financially afford. We actually decided today to go with a different realtor than we had been using, so hopefully she can help us find a house that fits our needs.

We are also changing some aspects of Grayson’s care. As I mentioned before, he now goes to his special needs school 5 days/week, which has been wonderful for him. He loves school, and is thriving there. We are also switching his therapy providers from the school district we were living in to the private therapy group that is in the same building as his school. He has his OT evaluation tomorrow morning. Now he will get OT, PT and speech on site during his school day.

We had the same nurse in our home taking care of Grayson since June. In the last few weeks, it became very obvious that she just wasn’t the right fit for G. She is a very nice person, but he wasn’t responding to her in a positive way and everyone was tense when she was here. I realized that when I was dreading the arrival of someone who was supposed to HELP make our lives easier it was time to make a change. It was awkward letting her go, and I felt bad because she truly loves Grayson, but I am so relieved to have that behind me. So we will be interviewing new several people and praying we can find someone who Grayson loves and I enjoy being around too. And as much as I want to be SuperMom and take care of both my babies myself, I’m trying to be honest and realistic about our situation- I can’t. I need help. I just need the right person to help.

Charlotte is now six weeks old and I’m really trying to get her on some sort of a schedule, at least at bedtime. Grayson’s bedtime is set in stone and that works really well for us, so I’m hoping we can do the same with Charlotte. She will probably always go to bed a little later than G, because he goes to bed SO early (5:45-6:00). Tonight, I bathed, fed and swaddled her, and she was asleep in her bed by 7:00- victory! I’m actually sitting on the couch, watching TV and blogging- ah, I’ve missed this.

This Friday, Grayson has an appointment with his Mitochondrial Disease specialist. We are taking Charlotte along because Dr. K said she would check her out. I really am not worried; everything about Charlotte is so, so different than it was with Grayson, and I truly believe she is healthy. However, I know it will be a nerve wracking few minutes during the exam. Unfortunately, I do have several things to discuss with her about Grayson. It’s sad and scary, but I do see progression of his disease. His seizures are worse even with increasing the dosage of his medication. He is so incredibly stiff, and even diaper changes are exhausting trying to pry his legs apart. His stiffness is also really bad at night, while he’s sleeping- it’s so sad seeing him not being able to relax, even while sleeping. And his balance has regressed- he topples over frequently and bangs his head on the floor while trying to get around.

I know this is just a crazy season in life and we’ll get through it. I’m really trying not to get overwhelmed and focus on the positives- I have two beautiful babies, we have a roof over our heads and support and help are available. We are going to be okay.