Author: Elizabeth

Just Getting Through the Day

Elizabeth5 Comments

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!

Slowly Getting Back to Normal

Elizabeth3 Comments

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!

Surgery Recap

Elizabeth9 Comments

Here we are, two weeks post-surgery. I’m glad that two doctors warned me about how tough this was going to be, because I really believe I’ve been able to manage my expectations and emotions really well because I had a realistic picture going into this. 

What I hadn’t really realized- this would be my last time to hold Grayson for about 6 weeks (sad face): 

The actual surgery went perfectly. The morning of May 5, we had to be at the hospital at 5:30 am (yawn). After much discussion between multiple doctors about anesthesia, consent forms to be signed, and whatever else takes so long to get these things started, the actual surgery didn’t begin until 9:45. We got several updates during the 5 hour surgery and each time it was reported that things were going really well. The surgeons were able to do the hips as well as reconstruct the pelvis, and Grayson did NOT have to be put in a spica cast. This was all fantastic news and what we’d been praying for.
Late that afternoon, we finally were brought to the PACU to see Grayson. Thankfully, since he was being sent to the PICU for the night, we didn’t have to wait for him to wake up. He did briefly open his eyes and cry for a minute, but that was it:

The first night was probably the hardest, although the days and nights of the next week completely ran together. Grayson was in a lot of pain and required morphine almost every hour through his IV. He had an epidural that stayed in until Saturday morning, but it didn’t do enough to stop him from hurting. Thankfully, he was cathed until Friday so I had a few days where I didn’t have to change his diaper, which is what I was most worried about. 

We stayed in the PICU until Wednesday night, and were moved to a monitored room on the same floor. I went home to sleep and see Charlotte that night and Ryan stayed with Grayson. Early Thursday morning I went back to the hospital so Ryan could go to work. Because of all the pain medicine, Grayson basically slept for about 4 days straight, which was fine with everyone. He would wake up crying every few hours, get pain meds, and fall back asleep. A few days later, he finally would stay awake for a few hours at a time and started enjoying his Veggie Tales again: 

By Friday, the surgeon was ready to let us go home, but I knew we were nowhere ready for that. Grayson still had the epidural, was requiring way too much IV pain medication, and I still, after days of asking, had no answer on how we were supposed to get him home, transport him for the next 6 weeks (his wheelchair wouldn’t work) and if we were going to get additional nursing hours. I was SO stressed about this because by this time we were having to change diapers and it took 2, sometimes 3 people to do it- along with a hurting and crying little boy. I had no idea how I would do it without extra help.
Saturday, a physical therapist came by with the type of wheelchair we needed to get to use at home. She helped teach me how to pick G up without hurting him or myself and transfer him to the chair, which is really like a bed on wheels. Then Grayson and I took a walk around the floor- it was SO nice to be out of the hospital room, and G loved it:

Sunday, Grayson was moved again- this time down a floor that services kids recovering from trauma and/or surgery. The nurses there brought us what was supposed to be our way of getting him home. It was a seatbelt type strap that went over his whole body and was meant to use in the back seat with the child laying down flat. I had some major problems with this. We have a minivan, and in the middle are captains chairs. The only flat seat we have is in the very back. I could not fathom how I was going to carry this fragile child up the step, into the very back of the van and lay him down without again, hurting him or myself. Also, the whole thing didn’t seem safe AT ALL. And they told me honestly that it’s purpose was for transporting only in absolutely necessary situations, because it isn’t nearly as safe as a carseat. Big problem for me. So I quickly nixed that idea and set out to find a carseat that would work. Thanks to the power of social media, within hours, I had found a carseat to borrow! I haven’t yet met the sweet woman who loaned us the seat, but she has been so incredibly kind and encouraging (her son was in a spica cast so she totally gets it) and I am so thankful for the amazingly wonderful people in this world! This setup is much safer and more comfortable than the craziness the hospital was offering:

We ended up going home Tuesday, a week after surgery. Insurance hadn’t made a decision on whether or not to cover the wheelchair G needs (and as of today, they still haven’t- grrr) so I ended up just renting one. Unfortunately, we weren’t able to get any additional nursing hours, but it’s worked out so far. Our incredibly kind and generous nurse moved in Tuesday afternoon when we got home and didn’t leave until Saturday night! She loves G so much and takes such awesome care of him. 
We’ve been home a week now, and are surviving. The most difficult part has been pain management and keeping G comfortable and entertained. That part is so hard because there is so little he likes to do- Veggie Tales, some YouTube videos, and playing his guitar is about it. It’s really hard not to be able to hold and cuddle him. Diaper changes are not nearly as hard as I had feared- I can do them by myself now and think I’m getting better at it every change. Grayson is still needing pain medication every 6 hours and definitely let’s us know when he needs it! I really hope we are able to cut back on the medicaiton soon because I hate that I’m having to give him so much. 

We had a follow-up with the surgeon yesteray- we were certainly a sight rolling into the office with a bed on wheels! The surgeon said everything looks great; he adjusted the braces and pillow and removed the bandages from the incision sites- G is certainly going to have some impressive scars! We go back in a month and hopefully will be able to remove the braces and pillows then. 

I took a picture of the before and after side-by-side x-rays at the appointment- “after” is on the top left. Look at all that hardware! If you look at the pictures on the right, you can really tell how badly dislocated G’s right hip was prior to surgery. 

This kid is my hero, and the toughest person I know. I am so, so thankful that although it hasn’t been fun and we have a long road ahead, Grayson is doing as well as we could expect at this point. 

Quick Check-In

Elizabeth5 Comments

I apologize for not updating here in weeks, and for leaving some of you hanging who have been so supportive of our decision to go through with Grayson’s hip surgery. His surgery was ten days ago, and yes, things have been incredibly hard and exhausting, but also have been best case scenario in almost every aspect. I promise I will write an detailed update of the surgery and how his recovery is progressing, but tonight just isn’t the night. Tonight is the night to fall into bed at 7:15 and catch up on TV that I’ve missed over the past week and a half. 

Again, thank you for your words of encouragement, prayers, and support. We are here, surviving. And even smiling some. 

One Week to Go

Elizabeth5 Comments

Thank you all for your prayers and words of encouragement on my last post. As I knew would happen, I had four people contact me whose babies also had choroid plexus cysts- and all went away and were born completely healthy. My worry and anxiety has dramatically decreased, and I’ve just decided not to worry about it until there’s a reason to worry. And honestly, I don’t have room in my brain to stress about it right now; Grayson’s surgery is a week from today and that’s enough to occupy my thoughts these days!

Grayson was cleared for surgery yesterday by the anesthesiology team. Thankfully, the doctor who we met with was one we have worked with before and I really like. She knows his history and didn’t ask stupid and annoying questions (my favorite: besides the Leigh Syndrome, does he have any other health problems? Ughhh…). Grayson will get general anesthesia as well as an epidural for pain management. 
We also see GI again tomorrow. G’s stool test came back positive for Rotovirus, which explains the awful diaper problems we’ve had the past month. Ironically, Rotovirus is the only illness he is completely vaccinated against, although I’ve read the vaccine loses efficacy after age 3. Thankfully, it has run it’s course and twice daily probiotics have worked their magic. I am feeling much better about keeping a cast clean if G ends up being casted. 
I’m kind of worried about how Charlotte is going to handle the craziness of next week. Lately, she has had a lot of difficulty with transitions- sobs when either we leave her or when people who are visiting us leave our house. We’ve been singing a lot of “Grownups Come Back”,for all you DT fans. Anyway, she’ll be spending the days next week with family and close friends, all who she adores, and the nights with me, Ryan or her Grammie, but I still worry she’s going to have a rough time. And it will be interesting to see how she reacts to her brother when he comes home, especially if he’s in a full body cast and/or in pain. She’s always been such an easy going, flexible little girl, but lately has been showing a major sensitive side- I just hope this side isn’t showing up at a bad time. 
At this point, I’m just trying to take one day at a time, enjoy my family, and let go of things that aren’t in my control. We WILL survive the next few weeks!

More Stress

Elizabeth12 Comments

Today was supposed to be normal. I dropped the kids off at school, went and got a bagel, and headed to my doctors appointment. I’m 19 weeks, 2 days pregnant, and had my anatomy scan this morning. 

I’ve always had normal anatomy scans, and expected this one to be the same. Of course, I know that a normal ultrasound in no way guarantees a healthy, normal baby, but I’d already had four ultrasounds this pregnancy and everything has looked great. I’m feeling the baby move regularly and my belly has been getting bigger by the day. 
Before I freak anyone out, everything is probably fine. 
Our sweet baby has a choroid plexus cyst on his/her brain. These cysts are relatively common (1-2% of pregnancies) and usually disappear on their own by 28 weeks. However, in rare cases, they are a marker for Trisomy 18, which is fatal. My doctor said she has never seen a Trisomy 18 baby who didn’t have multiple abnormalities on ultrasound, and our baby looks perfect otherwise. This is definitely reassuring, but of course doesn’t eliminate all fear and worry. 
I have never done any prenatal testing or screening, but today, I chose to do the second trimester screen for chromosomal abnormalities. It’s a blood test, and is only 75% accurate, but I’m hoping will give us some peace of mind. We’ll get results in about a week. 
I need this to be ok. I already have one child with severe brain abnormalities who is facing major surgery in less than two weeks. I need to focus on him right now, and not on worrying about something that’s probably nothing. It better be nothing. 

Surgery Update

Elizabeth2 Comments

I sure am glad today is about over. It wasn’t necessarily a bad day, just exhausting. I spent the entire day with Grayson, which I love, and rarely get to do because he goes to school 5 days a week, but wow, he wears me out. 

Grayson’s school had some flooding due to the heavy rains we had this weekend, so they were starting late. I had MOPS, and then he had a doctors appointment in the early afternoon, so it didn’t make sense to even attempt to take him. I brought him with me to MOPS, and he actually did really well, but of course needed constant attention- adjusting his headphones, putting his chew tubes in his hands, wiping drool, and pushing his wheelchair (he’s like a baby in that he always wants to keep moving when he’s in his chair). Thankfully, I had help, but I was wiped out by the time we left, and we still had a huge doctors appointment to go. 
We had about 30 minutes at home to change diapers, feed me and Charlotte, and get everything organized to leave again. My brother came over to watch Charlotte, and G and I loaded up and drove to his appointment. We had to drop off a stool sample at the lab (he’s having some GI issues we are trying to get resolved before his surgery) and then make our way to a different building for the appointment. 
This appointment was his pre-op for surgery, which is scheduled for the first week in May. Today, the doctor explained in more detail what he will be doing, and brought up some things that are still up in the air. One thing we discussed was the possibility of G not having to be casted after surgery! I am SO nervous about this cast- if he is casted in will be a full-body cast, going from his chest all the way to his toes. I’ve been reading a lot about cast care online, and how important it is to keep the cast clean. With the GI issues we’ve been dealing with the past few weeks, I am extrememly nervous about diapering and keeping the cast clean “down there”. Casting vs. not will depend on the strength of his bones and how well the doctor thinks they will heal- so he won’t know what he’s going to do until he’s operated. If he doesn’t cast, G will be in splints and have a support pillow. 
Another aspect that isn’t determined yet is if he will operate on just the hips/sockets or the pelvis as well. This will also depend on his judegment of the strength of his bones and how well he is tolerating the operation while it’s going on (the pelvis will add another few hours to the already 4 hour surgery). 
I’m feeling more confident about the decision to go through with this surgery- for the past few weeks I’ve been unsure if it is the right thing to do, but after seeing the surgeon today and the X-Ray of G’s poor little hips, I’m ready to get this thing done!
Please pray for our little guy that he can stay healthy the next few weeks so the surgery can happen as scheduled, and also for it to work out that he doesn’t have to be casted. Your thoughts and prayers are always so appreciated- thank you!

Two

Elizabeth3 Comments

I don’t want to jinx anything, or risk sounding smug because we are barely 3 months in, but I have to say it: so far, I absolutely adore age 2. Since having Grayson, I always thought of myself as a baby person, but now I think maybe I’m a two-year-old person. I think I’ll just keep this version of Charlotte (well, let’s potty train her first) forever.

Charlotte is just the most adorable ball of energy, and I genuinely enjoy spending time with her. She’s extremely verbal and my favorite thing is getting to have actual conversations with her and understanding what she wants and feels. I love witnessing the connections she’s making like recognizing letters and numbers on signs, naming everything she sees along with it’s color, and anticipating seeing her friends and teachers at school and church. She cracks me up with her love of Milton (her stuffed dog), her obsession with Daniel Tiger, and her proclamation of “It’s Charlotte Faith’s house!” every time we pull into the driveway. 

Although she can be strong willed and a little toot sometimes, she’s generally obedient and takes correction well. Nine times out of ten just mentioning “time out” is enough to turn around her behavior. 

We bought her a “big girl bed” from a friend at church a few months ago, in anticipation of her having to give up her crib to her new sibling. I honestly was dreading the transition, because she is such a great sleeper in her crib, and was really putting it off. But one day about a week ago, her diaper leaked and I forgot to wash the sheet before naptime, so we decided to try naptime in the big bed. She went to sleep perfectly. She asked to sleep in her crib that night, but after that, she’s been in the bed and hasn’t looked back. The transition was well, no transition. She loves her new bed, is still sleeping 12 hours at night, and hasn’t tried to climb out once (I honestly don’t think it even occurs to her that she could). I’m so proud of her. I’m hoping when I get up the nerve to actually start seriously potty training that it will go just as smoothly- ha ha. But yeah, I need to get on that soon if I don’t want three kids in diapers in September!


I am so grateful for this little girl and her BIG personality. I know there will be challenges in the future and a year from now I may be tearing my hair out dealing with a Threenager, but for now, I’m soaking up the sweet spot we are in. Yay TWO!

(here are my two favorite videos taken recently. The first one makes me laugh so hard because Charlotte is a lot of things, but totally graceful is not one of them. The second one is just plain adorable)

Happy Easter!

Elizabeth2 Comments

It has been a really fun Easter “season” this year. The weather has been gorgeous in Houston the past few weeks, and Charlotte is at an age where we can really participate in things like egg hunts. I didn’t put any pressure on myself to go all out for Easter- I bought Charlotte a bucket at Hobby Lobby, didn’t buy any new church clothes for the kids, and didn’t even do the Easter Bunny this year- and that’s ok. The kids got plenty of Easter goodies at school, church and from grandparents. All in all, it’s been a wonderful week celebrating spring, family and friends, and the resurrection. 

Charlotte’s first egg hunt. She listened to instructions and then knew just what to do!

Big Bunny Party at church last weekend. The first hour was for special needs families- we had a blast!

Easter Bunny #2 at our neighborhood Easter party

Fun morning at the park on Good Friday. We went to a handicap accessible park so G could go on the play structure with his sister!

Family Easter at David and Hannah’s

Easter Sunday was wonderful! Church, naps, then dinner with family. 

Happy Easter everyone. He is Risen!

Second Trimester

Elizabeth4 Comments

I’ll be 16 weeks tomorrow- how is that even possible? Last Thursday, my doctor made sure I still didn’t want to know the sex of this baby, because she could have told me that day. What? How am I already at that point? And no, I didn’t want to know- being surprised with Charlotte was one of the best moments of my life, and I can’t wait to be surprised again. 

Of course, when I stop to think about it, the last 3 months have actually been really, really long and incredibly difficult. I’ve just been so sick, so tired, and so hungry. I’ve already gained about 8-10 pounds because eating is the only thing that really gives me relief from the nausea and (duh) hunger- well, that an Zo.fran that I finally started taking regularly. Praise God for Zo.fran. 
I am feeling better overall- I’ve actually been ok during the day most days and even in the mornings as long as I eat something pretty filling in the middle of the night (so annoying). I still hit a wall of exhaustion about 3:00 every afternnoon- usually about the time I pick Grayson up from school. Then the nausea usually hits about 5:00 and I feel pretty sick until I fall asleep (early). 
Although I definitely have a bump, I’m still in regular clothes and am trying to wait until I get bigger to get maternity clothes- when I was pregnant with Grayson during the spring/summer I was still working and needed different type clothing than I will this time, when I’ll be chasing a toddler and recovering Grayson from surgery (we scheduled his surgery for early May, by the way). 
The baby causing all these shenanigans is apparently doing great; I had an ultrasound Thursday and he/she was wiggling like crazy and still right on track for growth. I’ve felt movement a handful of times- each time completely obvious what it was, but I’m not feeling kicks regularly yet. I have round ligament cramps all day long and some of them are really painful- the nice thing about a third pregnancy is with things like that, I know they are completely normal and don’t worry a bit about them- they are just annoying, not worrisome. 
I’m so thankful to be in the second trimester and that everything seems to be great with this baby. Of course, we are always praying for a healthy baby and that he/she continues to develop normally. And I’m definitely not wishing this pregnancy to fly by- I have a lot to do and get orgnanized before we become a family of 5!