April’s Update

April has found us busy birds around here. We kicked off the month with Easter, which meant John putting in extra hours at church to get all the media & set stuff ready for the big day. I found matching Easter dresses for the girls which were both cute AND functional (not into the frilly, lacy stuff! I like practicality!). Thankfully, I had plenty of baby legs (like baby leg warmers) to cover Zoe’s cast. We had a great day celebrating; in all the mad rush of Easter morning, I could not remember where in the world my camera was, and so the number of pictures I got of the girls this Easter was minimal 😦

Fast forward a week and Zoe’s appt rolled around to get her cast off. We originally were planning to have it removed, and then she’d go back in a short-leg cast for another 2 weeks. We arrived for the visit, and immediately a child-life specialist (the person who helps prepare your kid for traumatic events like surgery) came in and told us she was there to support us & Zoe during the cast removal. WHAT?!? I could not figure why in the world I needed a support person for something as simple as a cast removal. After all, I have survived handing my baby over to various surgeons FOUR times now, twice in the last four months even. I can function as a mom, nurse, PT, OT, you name it. I wear many hats, surely to goodness a cast removal did not warrant sending in a support person for me.

Well, I changed my tune when ortho pulled out the saw and begin cutting into the cast. I glanced once at it, but did not look back when I realized it looked exactly like they were sawing into Zoe’s leg. OH MY. So she sat in my lap, screaming her head off, while my “support person” held up various toys for her as a distraction. Well, Zoe is not a fan of distractions, not to mention distractions don’t work well when the noise of the cast removal saw is so loud it drowns out all other noises.

But we got through it, and her foot is STRAIGHT. Perfectly straight. I could not believe my eyes. Ortho appeared to be very proud of himself (go figure ;)) and announced it was so good we didn’t need to cast for 2 more weeks. He decided to put her in her AFOs during waking hours and call it a day. That was the moment I felt relieved & knew for sure that having that heel cord release surgery was a success. The right decision. Thank you, Jesus.

We also accomplished another goal at that visit. KAFOs. For some time now, Zoe has been willing to pull herself to stand at furniture. In our living room, we have a cluster of ottomans that she loves to try to stand at and play with toys. But her knees are weak. She doesn’t lock them. We have waited, and worked, pushed & prayed, but her knees are just not getting it. So ortho made the decision to go to KAFOs. These are braces similar to her current ones, but will also come up a little higher above her knee to give her knee support. I am excited to get these fitted, and see how she does. Her gross motor progress has been slow, basically since she was born. We expected this, but it doesn’t make it any easier sometimes to deal with. She meets a goal, then plateaus off for what feels like forever. So we will see how she does with these new braces.

Things on the urology front are good. No changes, so we just keep trucking along until our follow-up in June when Zoe gets her urodynamics/ultrasound repeated, and we are also having a DMSA test done. This is a test that checks the kidneys to make sure there has been no damage from her recent UTI since she also had a fever with it. We don’t really expect anything, but our urologist is very proactive about this and so she’s just being aggressive. Fine by me.

Last weekend we celebrated Faith’s birthday. I was super excited about this one; the past two she’s really been too young to care what was going on. This year, she kept asking me about all her friends from church who were coming, helped me pick out her cake design (My Little Pony), and was just overall excited about the day. Well, the morning of her party, she wakes up with a headache. Ok, whatever. No big deal. Tylenol and be done with it. As the day wore on, the headache progressed to a bellyache, then a sore throat, and finally a fever at 4 pm, with the party scheduled to start at 5 pm. At that point, I was getting seriously irritated wondering WHY in the world can we not just have a break from the madness of the last few months? The one day out of the year that is just for Faith to celebrate, and she’s sick 😦 I debated on cancelling, but John was already at the church setting up, the cake had arrived, we were ready to go. So, we sent out a few text messages to warn parents to come at their own risk, and off we went.

She enjoyed herself the best she could, but as the night wore on, she felt worse and worse. Finally, around 7 pm, we called it a night and I took her home to bed. We saved her some birthday cake, left a few extra presents for her to open later, started her on some medicine, and moved on. What else can you do? The past few days she has been back to her old self, and so we’ve been enjoying all the new presents and waiting for the weather warm up so we can get outside and play with them 🙂

Lately friends have been asking what they can do for us, or how they can help. And honestly, most days John & I feel like we manage pretty well. After being married almost 10 years, we function pretty darn well as a team. We are proactive parents, and we try to stay on top of things, and at the end of the day we can function like a well-oiled machine. But I also realize everyone needs a little help, so I’d say what we need most is prayer. Here is what for:

-Pray for patience for John & I–to patiently wait for Zoe to progress; dealing with developmental delays is hard sometimes, and the more delayed you feel your child is, the harder it becomes. Pray for patience as we wait for Zoe to meet milestones, and for patience as we raise two toddlers and all their little opinions 😉

-Pray for wisdom for us–making decisions about our children’s care is no longer cut & dry. Especially with spina bifida, there are often no clear cut answers. Pray that we would have wisdom to know the best way to proceed when we are faced with making those difficult decisions.

-Pray that John & I would be able to continually trust our children to the Lord. He knows them & loves them even more than we do, which sometimes is hard to imagine. Pray that we would not try to carry the heavy burdens of worrying for our girls ourselves; sometimes the weight of spina bifida alone can feel very heavy, and quite frankly, it can be exhausting. Pray that we would allow the Lord to carry this weight instead, and to trust him to carry out his perfect plan for our family.

That’s all for now!  I think that is plenty enough. Thanks to all of you for your support, prayers & encouragement on this journey. It means more than you could know!

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