Our First Myleo Clinic

Wednesday, June 5th was our first appointment at the Myleo Clinic at Cardinal Glennon. (Myleo - short for myleomeningocele aka Spina Bifida). For those of you that don't understand the clinic atmosphere here is a short description.  We have 1 appointment time and we see all of the doctors we need (all different specialties) at one time in one room. 

Our appointment was at 1:30, we got called back to our room.  On our way back we saw Rachel, Dr. Elbabaa's nurse (nueurosurgeon). She said hi and that she would be in in a few minutes.  We got checked in by the nurse, she asked all the typical questions and then told we would be seeing a few doctors.

First up, Dr. Elbabaa.  [before our clinic appointment, Evie had a follow up head ultrasound to get another look at her ventricles to determine if they are growing or not] Dr. Elbabaa was very pleased with her healing on her back. He told us he is very impressed with the amount of movement she has in her lower extremity. She is able to move everything all the way down to her feet which is unusual for a baby with a lesion where hers is (L4/L5). It all goes back to the fact that none of her nerves were dead when they went in for the repair. Yes, nerves were damaged but none dead. That means no total loss of function, things just might not be as strong as they should. Next, Dr. Elbabaa wanted to talk about the findings from the head ultrasound.  Her ventricles have increased in size.  Since the time of her spinal closure they have doubled which isn't good.  Right now her head is soft (as all babies' heads are) which is allowing her head to expand and not endure any brain damage from the extra fluid on her brain.  He said we need to place a shunt.  This is exactly what we were hoping to avoid but I would rather not have her have brain damage, so shunt it is.  Dr. Elbabaa wants to do another head ultrasound on July 2nd and he said if they have grown even the slightest bit we need to be prepared to be admitted that day and have the shunt placed the same day.  The shunt is a small catheter that will be placed in her brain and go (under her skin) down to her stomach where the excess fluid will be absorbed.  While it will completely solve the issue of the extra fluid on the brain, shunts do come with a gang load of other potential issues. There are issues of malfunction, revisions, infections and of course symptoms of all of these things are the exact same as the common cold - fever, not eating well, vomitting, lethargic - so this should be fun. I am trying to stay positive but I can't help but be worried since she will be undergoing another surgery - surgery in and of itself comes with its own set of risks. BUT GOD will provide and she will be watched after. Another bump - we can handle this!

Next, we met with the physical therapist.  She too was over the moon excited about Evie's movement.  Evie does these back bend things where her feet end up over the middle of her back (remember she is on her belly!) The therapist was able to witness all of Evie's crazy scooting antics and acrobats and said she has a great prognosis! Her strenght overall right now is a 3-4/5, I'll take it (5 is what non-SB people have). We talked about Evie's left foot which our PCP (primary care physician) brought to our attention.  It is a little "tight". The therapist said Evie was on her way to getting a clubbed foot but since she was a little early we probably prevented any further damage.  We have a little exercise we perform on her foot every time we change her diaper and we can already see a difference.  Right now Evie's function is at the lesion level of S1 - this is AWESOME! That means she is performing at a higher level than her lesion, medically, says she should.  They predict (with 75% assurance) she will be able to walk unassisted! TAKE THAT SPINA BIFIDA! While we will, of course, have to wait and see (the name of this game) that is providing us great hope and motivation!

We then met with Orthopedics. They couldn't do much. They wanted to check her hips for displasia but since Evie can't be on her back, they couldn't. Instead, we talked about what their department does. I loved how our doctor put it "we will take what your child can do and enhance it so they can function the best they can with the abilities they already have". I thought that was wonderful.  He explained that sometimes he can get children walking, even with assistance, but as they grow older they become discouraged and choose to be wheelchair bound to keep up with their peers. He said it's all in the family and how the child is raised. If the child is raised only to know that they will have challenges but that we will overcome them and that just because something is more difficult doesn't mean it can't be done, then a child will have a much greater chance of continuing with walking rather than choosing a chair.  We hope to instill these values in her at a very early age :)

We are waiting to meet with the Urologist she was out of town.  Before Evie got discharged from NICU they did a renal ultrasound which showed her kidneys were enlarged so we need to talk about a plan to watch that.  Pretty much kiddos with SB usually have bladder issues and the enlarged kidneys could be an indicator that Evie isn't able to fully empty her bladder and may need to be catheterized during the day to make sure she is getting empty to avoid UTI's and kidney infections.

Our next appointment will be July 2nd and we plan to have her shunt placed that same day.  Please keep our sweet Evie Grace in your prayers!

Evie on the exam table at clinic.  Since we can't dress her, we have to have headbands and bows galore :)

Taking a snooze while we wait!