Keep Calm and Hop(e) On

I have seen many cute variations of the stay calm printables. For a long time, my favorite was “Stay Calm and Eat a Cupcake.”  Since I’d do better to stay away from cupcakes for a while forever,  I think the following is a good alternative quote.

Hopping – a good exercise, right?
So, is Hoping.

{printable available here}

Mr. Gabe has been having some weird symptoms in the last three days. We’ve been to the Dr. with him and at this point we don’t have any real answers, just a lot more questions.  One unrelated (we think) piece of this week’s puzzle is the size of Gabe’s noggin.  We have been on a three month break from our routine neuro check ups. In the interim, our pediatrician has been actively following Gabe’s head measurements.  Based on this week’s stats, he felt like it was time to for a more thorough investigation of just what is going on in Gabe’s head.  Today we are waiting for appointments to be scheduled and test results to come back.  We are also playing, napping, eating, stretching, cutting teeth, running children back and forth to school, and making cupcakes  (uh! oh!) for daddy’s birthday. 

Trying our best to Keep Calm and Hop Hope on!

Appointment Week

It was not easy to keep up this week.  Our house and my hobbies fell behind, but we did focus on health, therapy, and friends!  Really, that is all that matters anyway. 

Gabe recently had his first urodynamics study and kidney ultrasound, which will serve as baseline norms for him.  At this point both of those tests are showing appropriate results for an infant with Spina Bifida.
We were also glad to finally meet with the pediatric orthotist.  She was encouraging with her reactions and conversations regarding the strength and movement in Gabe's legs and feet.  Interestingly, she is the first to give a "defect level label" to Gabe's lesion based on his sensation.  The orthotist also spent a bit of time talking with us about therapy and things we will watch for in the future.  Although I have still been struggling with Gabe's AFOs she agreed with the prescription and encouraged us to use them during his nap times.  Basically, he will only wear them when he is not actively moving his ankles.  This will be less time than was originally recommended and I'm a little more okay with it.  A little. 

Our in home PT visited this week and felt like we were making good progress with the tightness in Gabe's upper body. 

Near the end of the week we had a visit from our Early On nurse who updated Gabe's IDA and found him to be meeting the expectations for his adjusted age.  More encouraging news.  We spent a bit of time talking about what services will look like for Gabe in the months and years to come.

Overall, the week brought many good answers and plenty more questions.

Check Up

We are just home from Gabe's 2 month check up with our pediatrician.  Apparently, when we put our little guy on the growth charts it just so happens that he isn't so little after all.  Way to go there in the high 90th percentile for weight Mr. Cheeks!  Gabe's head measurements continue to climb, which is a concern.  He will see his neurosurgeon again tomorrow for a head ultrasound and follow up.  Until we have pictures to compare his growth to, and a consult with the expert, we will sit tight.

This appointment also brought Gabe's first immunizations.  If you're a mom, you know the drill.  Hold down their arms, look in their eyes, and hold your breath while the sympathy tears flow. Except this time was different.  Held my breath, waited for the first pokes, then a big smile.  He felt them.  He knew they poked him and he didn't like it.  And that's a good thing. Now we are cozy together on the couch recovering while the other babes rest and a storm rolls in.

Perhaps Neurosurgeons Are People Too?

After waiting much longer than we expected, Kevin and I were finally able to meet with the pediatric neurosurgeon last week. We came prepared with many questions, yet a bit intimidated to ask someone so smart and skilled.

We had heard plenty of warnings about what to expect when talking to this scientific specialist: worst case scenarios, confusing vocabulary, goofy doctor-isms, and inflated self esteem. We were so pleasantly surprised by how the visit actually progressed.

Our doctor was incredibly honest with us about what to expect. However, he explained so many things to us in language that we were finally able to understand and statistics that we were able to hold on to. He has professional opinions on whether or not to proceed with a shunt surgery right away, as well as whether to use programable or non-programmable shunts {a confusing sentence if you're not a SB insider...sorry}. Yet, he is willing to listen to our concerns about each of these issues and involve us in the decision making process. 

There is peace in knowing what to expect from this specialist in the weeks {and years} to come. At this point it is high on our prayer list that this neurosurgeon will be assigned to us after our baby's birth. At this point it is the plan, however his {the Drs.} family is dealing with a personal medical uncertainty of their own which may change his schedule. For those of you who have willingly joined us in prayer for the days and weeks to come, we ask that you will add this concern to your list. Thanks!