Spinal Defect Clinic/Neuro Results

Well, we Kuglers have had a busy week. The highlight however would have to be our neuro visit on Tuesday.  After seeing that the swelling at her shunt site wasn't going down, Dr Aldana had her shunt dialed down from 2.0 to 1.0 and OMG what a difference! Within an hour that horrible lump on the side of her head was gone. Now, I can actually see the outline of the shunt instead of a huge pouch of fluid.  I have a picture of the hand-held machine they used to re-program the shunt and should get around to posting it here for the curious. Medical machinery is such a wonder. Anyway, it was a super easy process and once the setting was changed the results were immediate.  There was no doubt that Maurice does his job to specifications!  (Maurice is the name for our shunt, for those who don't know.  I named it after Maurice Jones Drew running back for the Jacksonville Jaguars who lead the league in rushing yards this year.  I wanted to name the shunt something positive. Something that would indicate it would run and not need revisions.  And so Maurice the shunt was christened! Go, Maurice! GO!)  In celebration we found a Mo-Jo jersey at Once Upon a Child and I can dress up her to cheer on her shunt any time I feel like it now.  :)

In other news we had our first spinal defects clinic Friday and will be making a few changes to Evangeline's daily routine. To start with, I just have to mention that the place the clinic is held is super cute! Its held at the rehab facility connected with Wolfson's Childrens.  They have all these precious little themed rooms. The entire place is set up like a mini-city with rooms that look like various play areas.  Our room was themed "Grandma's house" and was set up with a mini kitchen with dishes and plastic food and tiny table and chairs etc. They even had a tiny chair Evangeline's size with a tray and we made use of it while we waited and played together with some toys I brought her. 

Anyway, our first change is no more prune juice.  We spoke to the lady who was in charge of nutrition and poop.  We discussed my two concerns which were Evangeline's continual weight gain (now 19 lbs!) and the prune juice which has NOT been doing all it was doing before. We knew this day would arrive and now it has. By eliminating her juice baa, we will be removing empty calories from her diet. We will be replacing the juice with 1/2 spoon of Milk of Magnesia to keep things soft.  This may or may not be enough to move things along, but we have the liquid glycerin suppositories to help while we get the dosage right. I just don't want her to go back to the point where she strains to poo and throws up her food from all the straining. So while the transition happens, I will be pretty poop-focused. 

The Physical Therapy/Physical medicine eval went well.  They were focused on her gross motor and were pleased by her dorsiflexion in her feet, stating that walking will not be a problem but with poor plantar flexion she might not be much of a runner. I'm down with that.  They were pleased that her PT eval with early steps was in the works as they feel she could use the assistance.

The Developmental pediatrician came in with a whole bag of interesting-ness.  Anybody that walks into a room with a doctor-bag of toys is alright in my book.  He assessed Evangeline and noted some delays.  Socially she excels, speech she is maybe half a month behind in the sounds she's making but in problem solving she scored at 3.5 months. He said it was at the lower end of normal but only time would tell. He said that we shouldn't focus on PT, we should focus on the cognitive stuff.  Don't put her around the TV because the TV will get her attention but won't engage her back. (well neither do the lights and ceiling fans she tries to talk with, but I digress)  He says just to do as much engagement as we can with her.  I think we've been doing pretty well with this already but we will try and up our game to the next level. We went to target to buy a few more toys. Maybe she doesn't need them, but we felt we did. We will be focusing on trying to get her to generalize the idea she can grab things.  I noticed that right before the shunt surgery she was going backwards in her "batting". She was proficient at slapping at toys that interested her but when her vents were so enlarged she did this less and less. I know her brain is playing catch up right  now. I'm really not that worried about anything.  My child is perfect and under a high-powered microscope like clinic even perfect can look flawed. I know she will catch up when it is her time to do so.  But we have extra toys and a plan. You know, for our own entertainment!

The only other new thing to report is her glasses. We ordered them Thursday and they should be in in about 10 days.  We chose the safe and durable miraflex frames.  They look clunky, but frame designers aren't worried about fashion for babies. They worry about things like safety and durability.  So they create solid plastic frames like these....

We are hoping the soft pink color will entice strangers to stop using the pronoun "he". lol