It’s been one of those days where my whole focus has been Get to bedtime. Just make it to bedtime. Of course, on these days the clock gets lazy, and takes its sweet time arriving at that magical hour, taunting me while my children whine, and cling, and deposit their bodily fluids all over me.

I love, adore, and cherish my babies, but today was one of those days where I thought: Two kids. Yep, I think I’m good.

Grayson had an appointment scheduled this morning to get his casts off from his surgery and then get casted for new AFOs. Then I got a call Tuesday “reminding” me that he also had an EKG and echocardiogram scheduled at the hospital at noon. Hmmm…news to me, but okay. (I did know we were getting these routine tests done at some point, I just hadn’t gotten a call with a firm date). Charlotte had school today, so it was going to be no big deal, and fortunately the times were right that we could make both appointments. My mom would just have to pick Charlotte up from school.

Not so fast. Charlotte had been running a fever and coughing since Tuesday, but I thought surely she was going to wake up good as new this morning. Ha. When she woke up crying and feverish about 10:00 last night, I knew school was a no-go. Cue scrambling for a new plan. The thought of taking my sick one year old with us to two medical appointments honestly made me want to cry. Fortunately, Ryan knows me and volunteered to take the day off to help. The only problem is he had to be back for his athletic period because tonight is his first softball game.

What we ended up doing was Ryan and Grayson’s nurse took G to his orthotics appointment, then they drove to the hospital. Ryan signed all the consents and left G and his nurse there and came home to switch cars. My mom came over when she was able to stay with Charlotte and I made my way to the hospital. By the time I got there, they were finished, so I just picked them up (didn’t have to pay for parking!) and we drove home.

By this time it was about 2:45. Poor sick Charlotte who was fine as long as I was holding her, standing up. Otherwise- SCREAMING, tears, and snot. And there was Grayson, who had not napped at all but wanted nothing to do with a nap at this point. Grayson, who also wanted to be held, and sang to, and didn’t want to share his mommy with his hot-mess of a sister. And Grayson, who between 3:00 and 5:00, managed to fall out of his chair three times and face plant on the floor. Sigh. We really need to figure out how to get him a new chair.

We survived, I guess. Both children are asleep at the moment, and I’m probably not far behind them. I think I have a touch of whatever Charlotte is fighting, and I know that made today just that much harder. And I’m reading this and thinking- this is not that big a deal. I have been through so much worse as a mom. Why was today so hard?

I think today really wore on my emotions. I don’t like missing Grayson’s appointments, and hearing information second hand. I want to be the one to hold him and comfort him during tests, not his nurse. I hate Charlotte being sick; rationally, I know she’s healthy and it’s normal- kids get sick, but there’s always this underlying fear that something will be wrong with her too. And I don’t like being stuck at home nearly all day- I like our routine, our scheduled days, and I feel suffocated when we are home too many hours in a row.

So tonight, I am praying both my babies SLEEP THROUGH THE NIGHT and wake up well and happy. That’s not too much to ask right? We have things to do tomorrow- save me!

So evidently it’s Feeding Tube Awareness week again; I guess I haven’t been paying too close attention to the FTA Facebook page lately, because I only realized it was this week when one of my friends posted about it this morning. Oops.

I think I’ve posted enough about Grayson’s feeding tube that you know my general feeling about it- what a huge blessing it was when he got it and how it continues to be a blessing. I mean, my kid is alive in part because of his tube. Sure it’s annoying because he’s fed continuously, so he’s always attached to it, and sure I get sad and wistful when I see Charlotte enjoying all sorts of foods that Grayson will never taste, but overall, I love his tube.

I probably won’t be posting all week, because honestly, I think you and I would both get bored with seven feeding-tube-related posts. If you are interested in Grayson’s feeding tube story, my 2012 post can be found here and my 2013 post can be found here. But I did want to participate in Day 1, which challenges us to make a video.

These videos show the 2 main functions of Grayson’s feeding tube: feeding and giving medication. I tried to explain the parts of his tube/button and how we set up a feed, and how we give medication through the tube as clearly as possible. And this is real life people; I decided to do this about 20 minutes before getting Grayson ready for bed- I’m in lounge clothes and a ponytail, Charlotte is screeching in the background through most of the videos, and of course we have Veggie Tales playing. Also special thanks to Ryan for being a good sport and filming these oh-so-professional clips.

Enjoy, and please feel free to ask any questions you have about the tube!

Feeding:

Medication:

Sometime in the last few weeks, Grayson stopped sucking his thumb. And not because he wanted to, or because he outgrew the habit. Because he can’t suck his thumb anymore. When he gets tired or hears a song he loves, he gives a thumbs up to the air and brings his thumb to his mouth, but the coordination between his tongue, lips and thumb is just…gone.

It’s heartbreaking.

And then there have been a few times where his thumb makes it inside his mouth, and his teeth clench down and he bites himself- hard. And because his brain evidently doesn’t know how to tell his teeth to let go, he screams in agony, all while still clenched on that thumb.

Our goal for Grayson is his comfort- to make his life as happy and pain free as we can. The loss of this self-soother is a huge loss.

Today when I picked G up from school, his teacher told me she’s noticed he doesn’t chew on his chew toys anymore. I’m heartbroken but I’m also scared. If he’s lost his sucking and chewing reflexes, what’s next? Swallowing?

I had a meeting with Grayson’s physical therapist today and we ordered him some equipment: a stander, a neck collar because his head is so floppy, and a “real” wheelchair. We’ve had a medical stroller for a year and a half now, but it’s no longer offering enough support to a boy who is getting bigger but not stronger. We also discussed what kind of chair I should get for hanging out around the house, because the big Bumbo we have just isn’t supporting him anymore.

A week from today Grayson will get his casts removed and be fitted for new AFOs that will hold his feet and ankles in position, even though he will never walk on them. The week after that we have an appointment with his pediatrician where I will ask her to write a letter of medical necessity to get diapers covered, because he will never be potty trained.

I hope he knows, really knows, beneath the body that betrays him and won’t really allow him to show us that he knows, that he is loved. So loved. I don’t think there exists a boy who is more adored. There are no answers, nothing that really makes it any better. But there are moments like this, when his sister, who has no filter or restraint in her adoration of her brother, greets him in the morning with a squeal and a hug.

And yeah, that makes it a little bit better.

What a fun, inspiring few days we’ve had!

Yesterday, the Mito clinic where Grayson receives his care hosted the author of this precious book The Gift of the Ladybug for a “Ladybug Party” complete with ladybug crafts, snacks, and book reading and signing.

 We left with signed copies of the book for both Grayson and Charlotte- Grayson’s copy is definitely going in a special place in his room!

Today was the UMDF Energy for Life Walk. We joined the Mito clinic’s team and enjoyed the relatively warm weather and visiting with friends. Carole was at the walk again signing books, and I was so happy to introduce her to Grayson. While we were waiting to talk to her, I looked down and saw something crawling on Charlotte’s arm- a LADYBUG. Seriously, gives me chills to think about it.

There was a family at the walk with a service dog- a beautiful Golden Retriever. Charlotte was smitten. Anytime she saw that dog she was frantically wave her arms and squeal. We had to go “pet the pretty doggy” about 20 times- ha! Notice what she has in her hands? She held onto those two syringes from the time we left our house until we got back in the car to go home. It’s a strange world we live in, what can I say…

Grayson gives the walk a high five! I’m so glad we got to participate in both events this weekend- good times had by all!

To read more about the book and all things ladybugs, visit http://www.giftoftheladybug.org/. And buy the book! It’s a precious story with a wonderful message.

As I mentioned in this post, the amazing SRB (who you should definitely be following if you aren’t yet) is hosting a challenge for bloggers to deal with and hopefully get rid of unnecessary clutter in their lives. She’s had an amazing response, showing just how prevalent this issue is.

Obviously, clutter is tied to emotions and psychology- just turn on any episode of Hoarders and it’s plain as day that the person’s problems really aren’t about the stuff. So for Challenge #2, SRB has posed some questions, asking us to GET REAL about the underlying EMOTIONS tied to all this STUFF. For tonight, I’m going to tackle just one.

• What is your emotional experience regarding your clutter? (For example, guilt, anxiety, anger, ambivalence, apathy, etc)

Guilt- yep. Ugh, why did I buy this in the first place? I spent money, which we do not have a lot of, on this, and now I want to get rid of it? Why didn’t I eat this bag of spinach/leftover pasta/lunch meat before it spoiled? This was a gift- I CAN’T get rid of it, right? No, Grayson never played with this toy, and it’s still brand new, so it would be terrible if I didn’t give Charlotte a chance to play with it, right?

Anxiety- yep. I touched on this before. I am an anxious person by nature, and I’m also not naturally organized. I lose stuff ALL THE TIME which drives me insane. I especially have anxiety when my kitchen isn’t clean. I will clean my kitchen three times a day and run half loads of dishes so I don’t have dirty dishes sitting around. I’m still trying to figure out why this is- why do I avoid and let go other areas of my house but get so anal about my kitchen? Also, I get anxious about the future. Financially, things are really tight, and I hold on to items “just in case” we need them later. And then there’s the huge looming question: will we have a third child someday? Should I hold onto all this baby gear if/when that happens?

Embarrassment- I’m embarrassed I’m 34 years old and still haven’t figured out how to be organized. I’m ashamed I let papers pile up and random homeless items pile up in junk drawers or the garage. I will say, I am much less embarrassed to have people over now that we don’t have the dogs. That’s awful to say, because I loved the dogs so much and really miss them (miss them, but don’t miss them, ya know?) but it’s wonderful to not have my house smell like dog, have dog hair stuck to everything and worry about my dogs annoying my guests.

Anger- As I said above, I’m not neat or organized naturally, which I look at as a character flaw a lot of the time. And it makes me angry. SO MUCH of my life feels out of control and I feel like I should be able to control the state of my home and the things I allow to take up space in it. But sometimes I feel so inadequate, and it feels like the stuff, the mess, the clutter- is winning.

Ahhh, big sigh. It feels good to get all that out! Now, to actually channel all this EMOTION into actually paring the house down to things we need and really love. The challenge continues…

Thank you to my wonderful friend Erin for taking these pictures- I absolutely adore them!

We just got home from a 2 night stay at the hospital. Grayson, being the sweet big brother that he is, waited until after his sister’s birthday party before getting sick. This illness came out of nowhere and really took us by surprise; it just once again shows the unpredictability that is life with a medically fragile child.

Tomorrow is Ryan’s birthday. Four years ago today I found out I was pregnant, and the next day surprised my husband with the news that he was going to be a dad. Four years later, I spent the day cuddling my precious baby boy in a hospital bed, trying to keep him calm as we waited to see if he would tolerate his feeds so we could go home. He’s been battling a virus and it’s been a really rough three days on him, and on all of us.

He was started on heavy IV antibiotics, which I really struggle with. I know that if he did or ever does have a bacterial infection, antibiotics could literally save his life and prevent sepsis. However, they have to grow cultures for 48 hours to determine if it is bacterial, so giving him the antibiotics right from the start is always a “just in case” kind of thing. I hate, HATE pumping unnecessary stuff into my poor guy’s already fragile body, and actually had a conversation with Grayson’s immunologist about this a few months ago. From that conversation, I thought more individual consideration would be given this time since she said to have the ER call her, but I guess not. I did refuse to give him “just in case” Tamiflu, a decision I feel good about. It’s so hard to reconcile my intuition, my fears, and my trust in the medical team at the hospital, because a lot of times I feel pulled in a million directions.

By Sunday night it was obvious that Grayson’s little thumb just wasn’t going to support that IV for all they had to run through it (fluids and antibiotics) and the decision was made he needed a PICC line. The doctors and nurses all assumed that Grayson has had one before- nope. They were shocked. I guess it is pretty amazing that after all these hospitalizations and him being a “hard-stick” that he’s always been able to rely on regular IVs. Anyway, yesterday Grayson got the PICC line; it had to be inserted under anesthesia, so that was a whole long ordeal being taken down to radiology, putting him under, and waiting for him to wake up. Yesterday was a really long day. Thankfully, my sister in law came up to watch Grayson for a few hours and my friend who lives close to the hospital picked me up, bought me dinner, and let me use her shower. Life-saving, these people of mine.

Today was a “snow day” in our city, which really meant lots of freezing cold rain and a few snow flurries, so I guess being cooped up in a hospital room wasn’t the worst place to be. But I sure missed my Charlotte, who spent the last three days with her Grammie (in Heaven, I’m sure).

Grayson fell fast asleep as soon as we got in the car to go home and is still sleeping soundly in his bed now. Poor baby has been through so much, both in the last 3 days and the last 3 years. I told the PACU nurse that I don’t think I would be as forgiving as he is if I had to go through half of what he does.  I’m praying this was just another bump in the road and we can quickly get back to our normal- whatever that is.

This morning, we had Charlotte’s first birthday party. It was such a fun time celebrating our sweet girl’s first year of life with some of our favorite people!

I wanted the party to be low stress and simple; I chose the morning so we could party hard until naptime and then put both kids straight to bed (the plan worked!)

The invitation:

I made this sign with all Charlotte’s 1  year “stats”. I wanted it to look like a chalkboard sign, but I did it on a black canvas with paint pens-much easier!

I also made this banner-I’m hoping to hang it in her room or bathroom

We served breakfast- kolaches, cinnamon rolls, and fruit- yum!

The birthday girl didn’t quite know what to think of all those people in her house, but she was ok as long as she was with her BFF Grammie.

When grocery shopping the other day, I happened to find these “Window Markers”- GENIUS! They kept our little party guests busy, and now we have beautifully decorated sliding glass doors 🙂

Me and my girl, munching on a kolache. I think we look a lot alike in this picture.

Listening intently to Great-Grandmommy

Big brother Grayson was right in the thick of the action, but of course had ears only for his Veggies

Birthday Cinnamon Roll- much better than cake!

Family pics

Presents!

Sweet friends

And…post nap sillies. Love.

It was a great day celebrating our precious Charlotte!

This morning, I opened up my Time.Hop app to discover this post from exactly 3 years ago. Three years have passed since I “came out” on my blog that there was something wrong with our son. I read that post with sadness this morning, and with a lot of if onlys…

If only I was right back in 2011, when I hoped that the only thing really wrong with my 4 month old baby boy was his vision, and that was why he wasn’t grabbing at toys or meeting other milestones. I was wrong.

If only I was right to hope that first brain MRI on January 24, 2011 showed no abnormalities, and would have allowed us to cross that worry off our list. I was wrong.

If only those early worries about our son’s life and development were a distant memory of his babyhood. They aren’t.

If only, if only, if only.

Three years ago, I became consumed with figuring out why Grayson was different, and how to make him better, and how to care for him in such a different way than all my friends were caring for their infants. It was overwhelming.

Caring for Grayson now isn’t so much overwhelming as it is profoundly sad. Tube feeding him, holding his head while he vomits multiple times a day, pumping him full of medication three times a day, and pushing him around in a wheelchair are all, unfortunately, normal now.

Normal, but so sad. I sometimes wonder what kind of kid Grayson would be if he was developing typically and wasn’t sick. Would he be an outgoing extrovert like his sister or an introvert like his parents? At three years old, would he be playing soccer or attending preschool? What would he be “into”?

I rarely, if ever, cry about Grayson anymore, but as I write this, I have tears in my eyes. There is so much good about Grayson, so much. He has completely changed my life and my attitude and I am a better person and mother because of him. But all that comes at such a high price: his life. His life spent listening to the same songs over and over and over in the same chair with the same one toy in his mouth- day after day after day. His entire life will likely be spent as an infant: in diapers, and relying on others to take care of even the simplest of tasks for him, tasks that his one year old sister mastered months ago. It’s just not right, and it’s not fair, and I don’t understand it.

If only…

I apologize to those of you who have been waiting for an update on Grayson’s surgery last week. I’ve been meaning to write one since Wednesday but Ryan, Charlotte and I all had a mild stomach bug for a few days, which was exhausting, and then we had Charlotte’s birthday hoopla yesterday. My sweet girl had such a fun day- her daddy had off work for MLK day, so we met Grammie, Aunt Hannah and Uncle David, and “Baby Theo” (as she calls him) for breakfast. Then later in the afternoon we went to an extra music class since we’ll miss her regular class Saturday because of her party. All was great and wonderful until about 6:00 when Charlotte suddenly spiked a fever. I was thinking teething but it was a looooong night- she was up every hour until about 2:00 am screaming and was burning up. I only took her temp twice and it was 103. Poor sick bear. She’s a little better today, but still running fever and just feels crummy. We have her 12 month well-check tomorrow and I have a feeling I’m going to have to change it to a sick visit.

But back to Grayson. The surgery could not have gone better and we had a fabulous experience at UTMB in Galveston. I was so nervous about being in an unfamiliar hospital and not knowing if we were going to have any issues with them following the Mito anesthesia protocol, but the anesthesia team was totally on board and already familiar with the protocol. The surgery was scheduled for 9:00 am; we had to be in Galveston at 6:45, so it was an early morning around these parts. Thankfully, there was no traffic in Houston that early (we left at 5:30 am) and we made it there in plenty of time and had no trouble parking and getting our parking validated.

The pre-op moved quickly and efficiently. We had a room with a bed for G, so he was able to lay down comfortably while we signed all the consent paperwork and they took his vitals. They gave him a sedative about 30 minutes before they took him down to the OR, so he was chilled out by the time we saw the doctor. He was listening to his Veggie Tales on his ipad with headphones, and the doctor told us just to leave them on- so he was wheeled into surgery with Bob and Larry still serenading him (oh brother). We were so impressed that they took him back at exactly 9:00- both Ryan and I are very impressed with timeliness!

The procedure was quick- lasted about an hour, and the doctor came and got us and said it went really well. I then was taken to the PACU to wait for him to wake up. We always say Grayson takes FOREVER to wake up from anesthesia, but as he’s gotten older, the time has gotten much shorter. I don’t know exactly how long it took him to wake up, but it definitely was less than 2 hours. He woke up groggy but didn’t seem to be in a lot of pain; after a few minutes we were taken back to the floor where we started and waited to be released.

IMMEDIATELY we noticed a huge difference in the tone in his legs. I almost couldn’t believe how loose they were (are). Changing his diaper and his clothes were so easy and even picking him up was easier. Simply amazing.

We were released and were home by 3:00 pm. I can’t say enough good things about our experience- the nurses were wonderful, everything moved efficiently, and we were provided with a care packet and prescriptions all together in one place.

It’s almost been a week since the surgery and Grayson is doing really well. He’s been on pain medication but I don’t think he’ll need that much longer. His orange Childrite seat (big Bumbo) that he sits in a lot is the most remarkable- it was extremely difficult to get him in and out of that chair prior to the surgery because he would squeeze his legs so tightly together. Now, we lift him in and out with absolutely no problems (although we do need to look into getting him another kind of chair because this one doesn’t support his head at all). Diaper changes are a thousand times less difficult, and it’s a lot easier to carry him from one place to another because he isn’t so stiff anymore. His incisions are healing nicely and he will be in casts for 4 weeks. After that we will have the casts removed and his orthotics place will determine if he needs new AFOs or if the ones he has will still work.

I’m feeling so good about this and are so thankful we were able to do something for Grayson that has already impacted his quality of life so positively!