I haven’t even typed half a sentence on this post and I’m already in tears. As I mentioned in my last post, we have been struggling with some really hard decisions- two things that will drastically affect our family before Baby #2 makes his or her entrance in the world in 2013.

The first decision is we are going to move. We are most likely staying in the same area of town, but are looking in neighborhoods that at this point are more financially doable for our family. Our house is on the market now, and while it’s annoying (and very difficult) keeping it show-ready at all times, I know it’s relatively short-term and we will survive.

The second decision has been heart-wrenching. As evidenced by just the title of this blog, I am a dog person. I love them. I work at a pet ranch. For almost 5 years, Ryan and I have had four dogs, which most people think is insane. And it is. Before I had Grayson, I would take them to the dog park every single day after work and spend several hours watching them play, swim and chase squirrels. It was my bliss.

I vowed I would never be a person who gets rid of her dogs after having a baby. After all, they are family members. But this was before I had a baby, and a baby who most of the time requires a lot of extra work. And this was before I unexpectedly got pregnant with another baby.

My dogs are sweet. They are respectful of Grayson and I never feel like he is in any danger with any of them. I still love them to pieces. But honestly, they are not my bliss anymore. At all. I resent the amount of work they are, on top of taking care of everything else. I do not walk them, nevermind going to the dog park. I resent cleaning up after them, remembering to let them out to potty, and dealing with their barking- basically, just their “dog-ness”. I am stressed to the max, and with a newborn coming home in a few months, something’s got to give.

I’ve known for months that I cannot have a special needs toddler, an infant, four dogs, and my sanity. Logistically and emotionally, it’s just impossible. But I ignored this fact for a long time. Thankfully, I’ve had several close people in my life, as well as my counselor, approach me about this recently and have helped me to face reality.

We are not making this decision lightly. I DO NOT think dogs or any pets are disposable. This is incredibly agonizing and I can’t stop crying about it. But I know it’s for the best for myself and for my family.

At this point, we are looking to find homes for our 3 female dogs, Chloe, Gabby and Izzy. Right now, we are planning on keeping Hank and seeing how it goes.

If you are local (or can get to the Houston area) and are interested in giving one of our sweet dogs a good home, email me at elikline25@hotmail.com. I’m not on my computer at home so I am not posting pictures right now, but there’s a lot of pictures on this blog or you I can email you some. All three are current on their shots, well socialized (they go to doggie daycamp several days/week) and are on flea and heartworm preventative.

Here are some facts about our little sweethearts- feel free to forward this post to anyone you know who may be interested.

Chloe: West Highland White Terrier. We think she’s about 7 years old. Sweet, obedient, loves to play. Good with kids, although probably not toddlers because she will snap if you get right in her face. Good with other dogs- loves to wrestle around with Izzy. No health issues.

Gabby: Lhasa Apso, blonde. Approximately 8 years old. Very sweet. Will cuddle for a few minutes at a time, but is content to hang out near you, not necessarily, on you. Only has one eye, but it’s adorable. Is fine with other dogs but would be great as an only dog too. Would be good with calm, respectful kids. No health issues. 

Izzy: Miniature Dachshund. 5 years old. Very sweet, spunky and oh-so adorable. But can be stubborn and naughty too. Needs a home with consistency and gentle discipline. Has a small bladder and needs to be let out often. Izzy loves to bury herself under the covers, blankets, or laundry. Wants to be with us at all times. Great with kids and other dogs and loves to play. No health issues.   

I haven’t written in almost two weeks (or commented, really, so sorry). I’m in another one of those times where there’s a lot going on, but not much I’m wanting to write about. We’re in the midst of some major life-changing decisions for our family, and I’m torn between obsessing over and avoiding the decisions. Anyway, I hate to be vague, but there’s my excuse for not writing. I’ve had several people ask if we are ok because I haven’t blogged, which I’ll admit is flattering. I do love this space and what a great outlet it is for me.

We’re fine. Since I can’t remember anything past a few days ago, I’ll just start there. Saturday was my birthday. I worked in the morning, and then my parents took me, Ryan, my brother and sister in law to dinner at one of our favorite restaurants.

Grayson saw his GI doctor this morning. He has been vomiting a lot again (3 times just this morning) and not only is this awful for him, health and comfort- wise, it’s just been a pain. I’ve been getting him dressed at the last minute before we go anywhere and covering him with a huge bib and blanket in the car, just in case. I have to wash his crib sheets multiple times per week (and anyone with a baby knows how annoying making up a crib is), and sometimes have to give him baths in the middle of the day. It’s annoying.

Since Grayson got his tube a year ago this month, his weight gain has been steady and consistent. He’s never been above the 6th percentile, but that’s a lot better than being below 0, which he was for a long time. But today when the nurse weighed him, he was down to 22 pounds, 4 ounces. Not even a month ago, he weighed 24. I got a little panicky.

The doctor wasn’t too concerned about the weight loss, but did agree we need to do something about the vomiting. Next week, if we can get on the doctors schedule, Grayson will be getting a GJ tube to replace his G tube. The GJ tube will bypass the stomach so his formula and medicines will go directly into his intestines. This should solve the vomiting problem. The big negative of this tube is he will have to be on continuous feeds again- this means attached to his pump 24 hours/day. NOT FUN. The tube will be placed under anesthesia but should be a quick and relatively easy procedure. However, anytime Grayson is under anesthesia, he gets sick with respiratory issues. Bleh.

I also had an OB appointment this afternoon. My doctor cried and hugged me when I told her about Grayson and his Leigh’s diagnosis. Then I cried when I talked about the baby and my fears about it being healthy, and she cried and told me this baby is a gift from God. I told her I absolutely agreed, but that God has a quirky sense of humor when it comes to my family. I almost had a panic attack when she measured me for the first time today. Our first “clue” something wasn’t right with G was I measured small in my pregnancy, although that started later- around 30 weeks (I’m 22 weeks now). Thankfully, today, I measured on track and heartbeat was perfect. But again, perfect measurements and heartbeats don’t mean much to me these days. I guess that’s just how it’s going to be.

On a sort of unrelated topic, I have a friend whose son also has Leigh’s and their story is featured on ABC News today! Her son sees the same doctor as Grayson and she’s quoted in the story too. Click here to read their story. Note: The article mentions a clinical trial for a drug that has shown to reverse the progression of Leigh’s in some patients. Unfortunately, we found out last week that Grayson does not qualify for the trial at this time because he doesn’t have a genetic diagnosis. We are extremely disappointed by this news, but we hope the criteria will change at some point and he can get on the trial.

There is so much in my life right now which I have ZERO control over. And there are so many other families in similar situations- life is just hard. Thank goodness for prayer, family, friends, carbs and cheese, and mindless television. Happy Wednesday friends!

I recently commented on a post in a private FB group of parents with kids with Mitochondrial Disease. The poster basically was expressing her displeasure with pregnant women who respond to the question “Do you want a boy or girl?” with “Doesn’t matter, as long as it’s healthy.”

The poster’s complaint with this answer is well, what if your child isn’t healthy? Will he or she be less valuable, less loved? To which 99% of people would answer, of course not. But some parents with sick children are offended by it because they feel it writes off their kids.

Before I had Grayson, I had the same feeling: don’t say that, because healthy or not, you will love that baby the same. And yes, I obviously still feel that way. I love Grayson with all my heart and soul. BUT, with this next baby, love not being an issue, it matters if he or she is healthy.

It is NOT ok that Grayson has Leigh’s Disease. It’s NOT ok that at two years old, he can’t even sit up on his own, nevermind crawl or walk. It’s NOT ok that he gets 100% of his food through a tube in his stomach and he vomits multiple times per week, sometimes per day, that his legs shake and are so stiff that it’s difficult to hold him. It’s NOT ok that he can’t call me Momma or tell me what he wants, and that he can only see a few inches in front of his face. And it’s definitely NOT ok that I will probably outlive him.

So when people ask me what I want this next baby to be, of course I have a knee-jerk gender preference- I think most people do. But I want healthy, above all else. Because if this baby has Leigh’s, it will NOT be ok. I will survive, and I will do what I have to do. I will love the baby with everything I have. But it will shatter me- emotionally, financially, and maybe spiritually.

My brother, who is way better with words than me, put the pain of our situation so eloquently in a post yesterday:

Grayson’s birthday party was yesterday afternoon. We went small this year- just family, at our house. In addition to grandparents and aunts and uncles who live here, we were so touched that my brother Peter and his wife Megan flew in from Nashville to help us celebrate. My brother Matthew also drove in from Waco. So sweet.

The theme for the party was A Very Veggie Fiesta, combining two of G’s favorites- Veggie Tales and Mexican food. For a party I basically threw together in a few days, I think it turned out pretty cute, and everyone seemed to have fun. Of course, I had a TON of help from my sister and sisters in law- just wait until you see this cuteness.

The invitation, designed by my little sis Rebecca, who sadly is in Savannah and wasn’t able to come to the party:

The decorations: since the colors were similar to last year’s party, we used the banner Hannah and I made last year.

We bought red paper lanterns at Hobby Lobby and turned them into Bob the Tomato.

We did the same thing with green balloons to make Larry the Cucumber.

And we couldn’t resist making “real” Larrys.

Before the party started, Aunt Hannah wanted Grayson to open his present. He was super excited about the tissue paper!

Ok, you ready to see the cutest thing EVER?!?! Check out what Hannah and her mom MADE for G. Seriously, it is just too precious for words.

And you have to look at Larry- he has a sombrero and a pancho- ha ha!

We ate taco salad (thank you Megan for making yummy guacamole and Brittany for the queso), then G opened his presents, although he wasn’t too happy about. He said, “It’s my party and I’ll cry if I want to!”

Cake Time! The oh so talented Hannah made these utterly adorable cake pops, displayed in flower pots with peas- oh, the cuteness.

I think the highlight of the party was when we presented Grayson with his cake pop. He of course put it in his mouth, but I don’t think he had any idea he was biting into food. He bit the head right off Larry, which apparently was hilarious, because he burst out laughing. It was oh so cute, and we all laughed (and cried a little).

It was wonderful to be surrounded by family on our sweet boy’s 2nd birthday. We have so much to celebrate!

After the birthday boy went to bed (is there anything better than Grammie cuddles at bedtime?), my goofy siblings had some fun- they seriously crack me up!

My brothers’ wives (and me). I love these girls SO much!

Have you ever seen more adorable siblings?

Big  Brother has been in quite a serious mood today, and little brother/sister (???) is all about his/her hands being all over his/her face. We may have another thumb sucker!

We had our 20 week anatomy scan this morning, but before the ultrasound, we met with a genetic counselor. I now more clearly understand the specifics of how Grayson could have inherited Leigh’s Disease. Most likely, it is recessive inheritance, meaning he got one copy of the defective gene each from Ryan and me. This means any children we have will have a 25% chance of having the disease. But this also means a 75% of any children not having it. I want to be completely optimistic and hopeful about that 75%, but 25% still seems so high. And it obviously already happened once…

The other problem is we don’t know what the disease causing gene is, so they can’t test Ryan and I. Grayson does have a defect of “unknown clinical significance” that has been shown in Leigh’s kids, but geneticists haven’t classified it yet as definitely being disease causing. The counselor did say it was likely, but not definite, that could be our gene.

We talked about doing genetic testing on the baby by amniocentesis. We could test and see if the baby has any of the same genetic defects as Grayson. This may or may not tell us anything and could just raise more questions and cause more anxiety. OR we can wait until the baby is born and do blood testing as well as imaging, and of course, observation for symptoms. This is most likely what we will do, due to the small risk of doing an amnio, and the fact that it probably wouldn’t tell us much anyway.

The genetic counselor recommends we see the same geneticist that Grayson’s Mito specialist recommended we see. She (the counselor) is going to call that doctor today and explain our situation and try and get us an appointment. So…not a ton of answers, but a lot more clarity and another plan for moving forward.

The ultrasound was blissfully normal. With Grayson’s anatomy scan, the ultrasound tech was very clinical and almost cold. She wouldn’t give us any information at all during the scan. Of course, back then, we had no idea we had anything to worry about, and the scan ended up being totally normal. Today, I have no idea if she knew our situation or not, but our tech was warm, and with each body part she looked at, she commented with “very nice”, “totally normal” or “looks great”. Even though I know this doesn’t mean the baby doesn’t have Mito, it was still reassuring and comforting.

We are so hopeful this baby is healthy, because the heartache of having two babies with Leigh’s is incomprehensible. Gone are the days of having a normal ultrasound and then boasting about a healthy baby on the way. But we are hopeful. Without hope, the next few months would be excruciating and anxiety filled. But I’m not going to live that way. We will do what feels right in terms of testing, trust God, and pray.

Pray, pray, pray, pray, pray. And I’m going to enjoy the rest of this pregnancy, because it could be my last. I absolutely loved being pregnant with my Grayson, that time that he was all mine and we had already began forming that deep bond of mother/child. I want to have that again with my second. This baby started moving and grooving this week and I am trying to cherish each wiggle and kick without the anxiety of worrying about what’s going on in his/her DNA, beyond what an ultrasound can detect. Because whatever is below the skin and bones, this baby is perfect and already so loved by his parents, big brother, and so many others. And for that we are grateful.

Had you ever heard of Mito before you met or started reading about Grayson? I know I had never heard of the disease until about a year and a half ago.

I bet you’ve heard of cancer though.

And I bet you’ve heard of all of these too.

Grayson, and most other kids with Mito, don’t look sick on the outside (but they sure look cute, huh?).

If you are in Texas, and want a great excuse to eat pizza this week, eat at any California Pizza kitchen and help Grayson and all those suffering from Mito. (Don’t forget to print and bring the flyer).

This just says it all.

My hero had a GOOD day today!