Just Getting Through the Day

Things have been hard around here. We aren’t in crisis mode, exactly, but the hour by hour, getting through the day has just been a challenge. I’ve been tired, moody and in no mood to do much of anything (hence the 3 week blog silence). 

The cloud hanging over life right now is how I feel physically. I’m 28 weeks pregnant, and still feel like crap mostly every moment of the day. I’m having to eat constantly to keep the nausea under control, which is making me feel like I’ve gained a ton of weight, although my doctor says I’m right on track. My body just feels gross and foreign, and I hate that I am not enjoying this final pregnancy like I did my other two. I’m telling myself that the silver lining is that there’s no room for doubt that this will in fact be my final pregnancy- no way am I putting myself or my family through this again. 
The nausea and fatigue have not made me the most pleasant wife or mother to live with. I went through a few days where I had less than zero patience with Charlotte for, well, being two years old. And I find myself oscillating between being an obsessive house keeper who can’t stand one thing out of place (which of course there’s always multiple things out of place) to a lazy sloth who just wants to say “screw it” and go to bed instead of picking up toys and putting away dishes for the millionth time that day. 
Two weeks ago, I did my 1 hour glucose tolerance test and borderline “failed” it. My doctor said because of my other symptoms she wanted to me to do the 3 hour test. Great. I did it yesterday, and it was brutal. I was so, so sick the rest of the day from fasting, a bottle of sugar, and 4 blood draws. But today my doctor emailed me with good news- my test results were “perfect”. I’m so relieved- I told her I didn’t have time to deal with gestational diabetes, and I meant it! 
I’m also back and forth between being excited with anticipation and filled with fear about welcoming this new little one to our family. I will admit not feeling as connected to this baby because of how awful I feel all the time, but I’m also thankful this little one is super active and I’m trying to relish those sweet kicks and movements when I can. After months of indecisiveness, I think we finally have names picked out, which strangely has helped a ton with my bonding with this baby. I feel like it’s a girl and tend to think of her (him) that way most of the time, but who knows. I thought Charlotte was a boy, but didn’t feel as strongly about that as I do this one being another girl. So we’ll see!
Charlotte has also been having somewhat of a hard time these last two months, but I can hardly blame her. Her brother had major surgery and her mommy has been less than a super fun mom to be with. Also, we’ve been “trapped” at home a lot lately with all the rain we’ve had plus Grayson being unable to get out. She’s been expressing her frustrations mostly verbally (“I don’t like my Mommy, I want my Daddy!” and “I don’t like my school!”) but we have dealt with some physical stuff too- hitting and throwing toys. Again, she’s two, so I really think it’s all in the range of normal, but it’s just heightened with everything else we have going on. And really, despite some frustrating behaviors, she continues to mostly delight us and make us laugh with the stuff she comes up with. 
Grayson. Finally, on Monday, 6 weeks and 6 days post surgery, he was “released” from his braces and abductor pilllow. It was a day I was so looking forward to, and was counting the days, and then the hours, until the appointment. The good news is everything looks perfect- his incisions are healing and the X-rays look great. What I hadn’t expected was that taking off the braces was going to cause a lot of pain and discomfort for my sweet boy. He is REALLY sensitive to his legs being moved and was up most of the night crying last night (Ryan took care of him). He couldn’t get comfortable in his bed and the only place he would sleep was his bean bag chair. And for the first time in over two weeks, he had to have pain meds. The surgeon said this is normal and expected, but it’s still breaking our hearts to see him in pain once again. And his poor little legs are so thin and dry. I am so thankful though that he’s back in his regular wheelchair and I’m able to hold and snuggle with him again. 
So that’s whats going on here. Overall, we are making it, but life is a little less than ideal these days. I’m hoping July gives us all a break!
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Slowly Getting Back to Normal

Grayson went back to school today! To have him be able to attend summer school post-surgery was a major goal of mine, and I am so thrilled for him (and the rest of us!) that he is able to attend. Sadly, his school was destroyed in the horrible flooding that resulted from Houston’s major storm last week, and the teachers and kids are temporarily relocated to a church not far from the school building. G had a great day! He had only left the house twice in the three weeks he’s been home from the hospital, and needless to say was going stir crazy. I’m glad he had those weeks of rest though, because his inscisions are healing really well and his pain is definitely better. We see the surgeon in another three weeks, and hopefully he can be done with the braces and pillow and be back to his normal wheelchair. When we got home, his demeanor and mood were so light and happy, and I’m so happy for him that he’s back with his beloved teachers and friends at school. 

Happy boy:

I can hardly believe it’s already June 1, because the month of May just passed in a blur of survival mode. While our family has certainly had our share of stress and exhaustion the past month, May was a devastating month for so many people. In addition to our non-stop rain and flooding in Houston, I’ve been so affected by stories of other tragedies around the country: horrific fatal car accidents and a much too high number of families in the Mito and rare disease community who have lost children in the past few weeks. One family in particular has just consumed by thoughts and prayers the past few days- their sweet girl, who was just a few months older than G, passed away last week. I “met” her mom through social media when our kids were just babies and were struggling with extrememly similar symptoms. She ended up with a different diagnosis than G, and obviously regressed much more quickly than he has. I am just heartbroken for their loss, but also relieved this precious girl no longer has to suffer. 
But May wasn’t all stress and unhappiness. My grandmother came for a visit from Michigan, and it was so sweet to see her and watch her love on the kids. She was smitten with all three of her great-grandchildren.

My pregnancy is moving right along. I’ll be 25 weeks tomorrow, and am feeling huge. This pregnancy has been so very different in every way than my other two, and I’m definitely a lot bigger earlier this time around. I had a few weeks of feeling a lot better than I had, but this week has been rough. I wake up in the morning starving and nauseus, and no matter how much I eat, I seem to be hungry again 5 minutes later. 
I realized I never updated about the cyst on my baby’s brain. I’ll have another ultrasound in two weeks to see if it’s gone, but my chromosomal testing came back normal, which means the chances the cyst is anything to worry about is extremely small. Such a relief, and I’ll admit, I’ve just let it go and have hardly thought about it in weeks. 
Bring on June and summer! Hoping for some easier and fun weeks ahead!