One Week to Go

April 29, 2015 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

April 24, 2015 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

April 21, 2015 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

April 7, 2015 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!

April 6, 2015 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.