I’ve learned (as does everyone at some point) that the right thing to do, the best thing, is also the most painful. We said goodbye to our Izzy this afternoon. I had put a sign up at work and a sweet family who loves dachshunds contacted me to adopt her. They are so excited about having her in their family, and have been great about giving us as much time as we needed to keep her and say goodbye. I felt like it was best just to rip the bandaid and let her go, but it was so hard. That little toot had a special place in both my and Ryan’s heart, and many tears have been shed.

I also had a doctors appointment this morning- all is good! I had an ultrasound, which I wasn’t expecting. Baby is head down (yay!) and all his/her limbs and bottom are all scrunched up on the left side of my belly. I was measuring on the small side- UGH- but my doctor said my size was “acceptable” especially considering the ball my baby is in. I know this sounds weird, but I get really jealous of “huge” pregnant bellies, even though I know that would be much more uncomfortable that way. We are doing a 3D ultrasound just for fun on Saturday- looking forward to seeing what this baby looks like!

Just a reminder: if you want to exchange Christmas cards, go here and fill out my form! My cards came today and I hope to address and mail them in the next few days!

We are having a lovely time at my parents’ ranch. The whole experience has been completely different/BETTER than the last time we were here. Grayson has been GREAT- he’s sleeping well, and for the most part, content to listen to his tunes inside or be outside in the jogging stroller or swing. We’ve been eating yummy food, taking long walks on the many hiking trails on the property, and just have been enjoying being together as family.

(I apologize to my FB friends who have already seen most of these pictures)

 Ryan got to drive my dad’s tractor this morning, and was in heaven (he would LOVE to live in the country)…

After much frustration with the Sh.utter.fly website last night, I finally got my Christmas cards ordered this morning. Christmas cards are probably my favorite tradition- I just love sending them out and receiving them in the mail! I ordered extra this year in hopes I can exchange with even more people. If you would like to exchange cards, fill out this form and I will send you one of ours- and I will email you our address if you’d like to send one to us. If we’ve exchanged in the past, I already have your address (unless you’ve moved), so you don’t need to fill this out.

Bring on the Christmas season!

Give thanks in all circumstances; for this is the will of God in Christ Jesus for you. 1 Thessalonians 5:18

This month I jumped on the FB bandwagon and have been posting (almost) daily the things I am thankful for. I truly am blessed; I have no shortage of family, friends, and circumstances that make my life good. It has been a great excercise to reflect on these things, and to take a few minutes to thank God for these blessings.

But giving thanks for all circumstances? That I’m not so great at. Because honestly, there are some circumstances in my life, in my family’s life, that just plain suck. Last night, Grayson woke up screaming at 2 am. Half asleep, I stumbled in his room to find him, his bed, and his blanket completely soaked with formula- the medicine port on his tube had popped open and had obviously been leaking formula for hours, given the huge mess. Completely changing my screaming, wet, cold child and his sheets in the middle of the night wasn’t exactly something I was praising God for.

Then after a few more hours of sleep, he of course woke up vomiting, as he does every morning. Now add green bile-soaked towels to the pile of formula soaked jammies and sheets, ready to pop in the washing machine. A quick wash and dry cycle, a cleaned up toddler happily playing in his excersaucer and listening to Veggie Tales, and a bagel and coffee for Mommy- then, I could be thankful, right?

The truth is, Mito sucks. Leigh’s sucks. There’s not much in the minute to minute dealing with feeding tubes, vomiting, seizures, and muscle weakness to celebrate. Grayson will never play Little League, ride a bike to a friend’s house, go to college, get married, or have kids. He won’t eat Thanksgiving turkey on Thursday. So many of the circumstances of his little life are less than ideal.

So I’ve been trying to understand what it is about these circumstances that I can give thanks. And of course, there’s Grayson himself. Because like it or not, Grayson’s disease is a part of him. It affects every single cell in his 23 pound body. And I love him. I love his big, beautiful blue eyes that shift back and forth, I love his little legs that shake and scissor when I stand him up, and I love his voice that has never uttered a single word.

And I’m thankful for the ways having a special child has changed me. I’m definitely more aware and patient with people with disabilities. When I see a mother in the mall with a child in a wheelchair, I no longer feel pity for her, but admiration and respect, because I know, in general, what it took to get that child to the mall. I’m smarter- I do my own research and make medical/health decisions for my family not just based on what doctors say- because doctors are NOT God. And I’m definitely less concerned with things that just don’t matter.

The people I’ve met just two years into this journey are what I count as my biggest blessing. I’ve talked about it before, but I’ve made some incredible friends because of Grayson’s crappy circumstances. I gain strength, am challenged, and am so thankful daily because of these friendships. Also, the good friends I had prior to having Grayson have supported, prayed and blessed us in immeasurable ways. I am so grateful that I have not lost a single friend, which I know happens. And I’m thankful for the people I don’t even know well, or at all, that pray for our family so diligently.

Maybe the point is to focus on the blessings that come from the circumstances, not the circumstances themselves.

I hope everyone reading this has a very happy Thanksgiving full of family, food and love. We are heading up tomorrow to my parents’ ranch- I’m packing half our house to take with us for my little guy- he’s not spoiled or anything-ha!

It was only for about a minute, but Grayson sat up on his own for the FIRST TIME today in PT! SO exciting!

Somehow, I blinked, and I’ve entered the 3rd trimester of pregnancy. What? And now the holidays are here, which always fly by in well, a blink. So basically I’m going to have a baby in like, 5 minutes.

Am I excited? Yes. I’m so excited to know whether this baby is a he or a she, to know whether he or she looks like Grayson and to cuddle with and take pictures of my TWO children. I am amazed at God’s plan for our family- because this was definitely not OUR plan. But if we had followed our plan, I wouldn’t be cherishing these sweet kicks all day long, and Grayson might have never had the opportunity to be a big brother. I’m excited for teeny tiny baby clothes, that sweet newborn smell, and honestly, giving birth again (I just thought it was amazing the first time around).

Am I anxious? Yes. This morning, as I was holding and singing to Grayson as he puked his guts out, then giving him his meds, getting him dressed, etc, etc, etc, I thought, how am I going to do this times TWO? Yikes. Because I am going to have two babies. Grayson is a toddler in title only. I’m anxious about the birth, and the days after, because along with watching closely for signs of Mito, there are things I want done and not done at the hospital that may or may not be met with opposition- and I’m really not good with confrontation. I’m anxious about breastfeeding. I really want to try it again (and hopefully succeed), but last time the whole experience was so traumatic that I’m scared it’s going to open those emotional wounds. And lastly, I’m dreading the sleep deprivation. I have not forgotten what it feels like to force my body that feels like lead to get up for the 4th time in the night, and being willing to give anything for a few consecutive hours of sleep.

Am I ready? Um, No. We have a crib and a chair for the nursery. We still need to find a dresser/changing table. I’m not decorating because our house is on the market and who knows if we’ll be in this house when the baby arrives. Also, I want to do gender specific, so somehow in my spare time later (HA) I’ll be decorating the room. We could basically open our own Babies R Us with all the baby crap we own, but I am registering for a few items we need (a second video monitor, mobile, and sheets to name a few). If anyone has any suggestions of the latest and greatest baby things we can’t live without, please let me know!

It’s so interesting how different my mindset is right now, good and bad. I know SO much more than I did two years ago, but sometimes I think I know so much. When I was pregnant with Grayson, my main thoughts were babies! cute nurseries! tiny clothes! Now, when I think about this baby, I think about how many genetic diseases we can test for and rule out at birth, vaccinations, signs for and preventing dehydration, and obsessing about how big my belly is and wondering if that correlates with a healthy baby.

For comparison: This was me at 33 weeks pregnant with Grayson

And this is me today, at 28 weeks, 1 day pregnant. And wearing long sleeves- it finally got below the 80s today!

About the same, right? And 5 weeks difference. I don’t know if it means anything or not, or if it’s just because it’s the second pregnancy, but it makes me a little less anxious!

So here we go, ready or not- the home stretch. And just because he’s cute, the future big brother this morning before school (in his fall clothes- yay!). And yes, to get him to smile, I said “Grayson is a BIG BROTHER!” (I know, he has no idea what’s coming- ha!)

Well, the reduced vomiting thing was short lived. Grayson has woken up the last two days puking, despite the farrel bag and elimination of the medicine I thought was making him sick. Then tonight right after his bath, even before I could get his diaper on, he started retching, screaming and vomiting, and it felt like forever before I could get him to stop.

We saw the GI doctor this morning. Unfortunately, we got almost nowhere. And I like this doctor, I really do, but I was really frustrated with him today. When I told him Grayson has really been struggling since his procedure, he had no idea what procedure I was talking about. And there was no mention of the multiple calls I had made or the conversation with the on-call doctor I had last week. I get doctors have a lot of patients and a GJ placement probably isn’t that memorable to a doctor, but come on. At least look at his chart before you come in the room to jog your memory!

Even though Grayson has not vomited any formula in a month (thus getting more calories, right?), he weighs the exact same amount as he did before he got the new tube! I just don’t understand that at all, but we are going to gradually increase the rate of his feed to see if that gets him to gain some weight. As for the continued vomiting, he offered no real explanation or solution. His reasoning is this is all about G’s lack of motility, so he wants to put him back on the same medication he’s been on three times before (and really made no difference). He’s also putting him back on Prevacid to reduce the acid in his stomach.

I’m thinking about making an appointment with another GI, just to get another opinion and maybe some different ideas. I hate dragging Grayson to even more doctors, but I feel stuck where we are with no real hope of things getting better.

Then in the back of my mind I remember Grayson’s diagnosis.  A disease with no treatment and no cure. Am I just getting upset at doctors when really there is nothing they can do? I just wish more doctors seemed more invested in my child, in what we go through every day. I wonder if they even think about Grayson in the weeks between his appointments. Today, a therapist Grayson worked with over a year ago came to visit him, just because. This therapist filled in for G’s regular therapist when she was out for a surgery, maybe 6 weeks. She was a sub, and yet, she checks in with us every few months and came to see Grayson today.

Sometimes I wish his doctors acted like they cared so much.

A few updates (mainly for my records- sorry if this post is kind of boring!)

Grayson: The last few weeks have been focused on getting his GI issues under control. Even though he’s not vomiting formula, he was still throwing up stomach bile at least twice a day. I think we’ve finally found a solution- ferrel bags. G’s new button in his tummy has 2 ports- one to his stomach (G) and one to his intestines (J). We feed him and give him medication in the J, and at night, have been hooking up a ferrel bag to the G to drain his stomach. All night, whatever is in his stomach drains out in the tube and fills up the bag. It’s nasty, but the vomiting has decreased dramatically and he’s been waking up happy. We’ve also stopped one of his medications for now- it was making him so nauseous and sleepy, it’s just not worth the (not so noticeable) benefits. We are also in the process of changing his seizure meds, and so far so good!

School is going great. When I talk about going to school, Grayson always smiles and is always happy when I drop him off. He adores his teachers, makes cute art projects, and loves music therapy. We finally started using his wheelchair, and are actually just leaving it at school since it’s so big and heavy. Today he was sitting in it during “dance class” when I picked him up- so cute.

We still have not heard from genetics about Grayson’s possible genetic diagnosis, which could qualify him for the clinical trial of the Leighs drug. Of course I’m disappointed, but not surprised. Nothing moves fast, unfortunately. And I’ve totally abandoned all hope of knowing anything about Baby #2 before he/she is born (regarding Mito).

Pregnancy: Actually, there’s not much to say, which is awesome. I’m 27 weeks along, I feel good, the baby is moving like crazy all day long, and so far I’m still measuring on track. I took my glucose test last week (which I failed with Grayson) and if I failed this time I was supposed to hear within a few days. I’m taking no news as good news! It is getting harder and harder to lift Grayson and I am super tired by the end of the day. I can’t believe I will actually have a newborn in less than 3 months (and I think I’m tired now)…eek!

House: No offers yet. We’ve had some showings and four open houses, but no bites. Hopefully the right buyer will show up soon!

Dogs: We are down to 2. Hank and Izzy have been boarding quite a bit because of the open houses/showings, but even when they are home, it is so much less stressful. We are still looking for a home for Izzy, but she is going to be hard to place- it’s going to take a special person to put up with that girl- ha!

Time change/weather/traffic: all annoying. No I don’t want to wake up with my 2 year old at 5 am, wear shorts in November because it’s 86 degrees outside, or creep along bumper to bumper for an hour in the morning to get my kid to school. That is all about that!

I have a lot of deep thoughts and emotions about all of these categories, but will have to save those for another post (or posts). 5 am is going to come really early!