Tuesday, February 14, 2012

Your Happiness Gland

No, its not there. Pervert.  lol

The "happiness gland" I'm referring to still hasn't been located by medical science. Nobody can pinpoint that place in the brain- the location that decides to release the neurotransmitters that cause the physiological response that your prefrontal cortex, then decides is happy. Whatever medical science knows or doesn't know about emotions, it can say with absolute certainty that the process happening at a molecular level to produce joy is NOT connected in any way to a person's legs or feet. Yup. You heard me right. You don't need to be able to walk to be happy. Just ask anybody who is wheelchair bound. He or she will probably tell you (esp. if they have been rollin from the time that most learn to walk) that feeling your feet is over-rated.

Of all the things I was worried about when we got the diagnoses, the possibility of Evangeline not walking was what stressed me the least. The hydrocephalus was my biggest fear and we've faced that one and come out with the dreaded shunt no worse for the wear. *insert sigh of relief here*  When she was born wiggling her toes against the odds and the warnings, I was overjoyed of course but her toes weren't what made her so special to me. It was all of her. All she was going to be and do and see and love and laugh about.

Her orthopedic doctor has told us good things early on about her ability to walk unaided.  So have many other professionals.  Today, however, at her  P/T eval she was examined in depth.  The p/t said for the first time today that she may need to use a walker and other orthotics when the time comes to walk. She has some muscle tone issues in her arms and torso as well as her legs. This is why she isn't weight bearing and can't roll over. The extent of her current situation was a surprise, but it didn't upset me.  All afternoon I have wondered why images of a tiny, shiny pink walker didn't disturb me the way they probably should. Then, after returning from getting groceries, I sat down all tired out and asked her how her time with Grammy had been. She laughed at me. I asked her if she'd really had fun. She laughed some more. I asked if she was putting me on.  She giggled riotously.  And I laughed too.  Nope.  Her happiness gland is definitely not connected to her feet or legs or any other part of her chubby little body. Its a good life.

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 131:14

Saturday, February 11, 2012

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

Monday, February 6, 2012

Softball anyone?

Pretty soon my little cupcake is gonna look like Patches the Pirate meets 'Arry Potter. At the opthamologist today she got some sample patches and a script for eye glasses that we will be getting filled this week!

I had no idea that catching things early in the eye's development could be SO important, but if our doctor's enthusiasm is anything to go by its SUPER important.  Apparently much of human depth perception is formed in the first year of life, and by the time she (or any opthamologist) sees most babies, the damage is already done. She was practically glowing with excitement after the exam when she said, "I know I am treating this aggressively, but you have to understand, you brought her in early and this is a baby I can actually HELP!"

She was very pleased that the optic nerve showed no swelling and wasn't pale like it had suffered any injury at all from Evangeline's hydrocephalus.  She is still concerned that there might be a "brain/muscle" problem where the brain is sending the wrong signal or the muscle is hearing that signal wrongly and its this miscommunication that keeps the eye turned in toward the nose. The only treatment for this muscle problem is a surgery.  The surgery won't leave a scar and will correct the problem if it is called for.  We won't know if its called for though, until we see if this aggressive patches-and-glasses therapy works. A decision will be made sometime between 6 and 12 months regarding  if surgery is warranted.

For right now, she will be sporting a patch for one to two hours a day and will be styling in some lovely frames (I hope to find some real cuties!) when she isn't sleeping.  The glasses are for farsightedness.  Most babies are farsighted so that by itself isn't unusual, but hers, while still in a range of normal, is enough that it might be the cause of her left eye turning in when it tries to focus on things up close.  So by using the patches and the glasses we are sure to help the problem if it can be helped non surgically! 

This is great news because, as the doctor explained, this means she will be able to keep her depth perception and everything that stems from it like hand-eye coordination.  Which of course will come in handy one day if she wants to try her hands or feet at sports in the future.

For now, anytime she rubs her eye patch pathetically or turns her little head trying to escape it, I must remember that what I am doing is furthering her possible future college scholarship as a softball pitcher.  After all, she will know as good as anybody that life is all about how you handle the curve balls. 

Wednesday, February 1, 2012

Upcoming Spinal Defects Clinic

This is just an update for those of you who may not know what a spinal defect clinic is.  It is often called a "spina bifida" clinic, but no matter what you call it, its an all day doctor-palooza.  In Florida there are three such clinics: one in Jacksonville, one in Orlando and one in Tampa.  So families from North Florida and the panhandle attend the Jacksonville clinic when it runs. It happens several times a year. In the beginning a child may be seen twice a year. After he/she gets older, they may go only once a year. Our first clinic will be Feb 10th. We will spend the day before at Nemours getting kidney ultrasounds to check for reflux  (to determine if we need to start cathing her) and we will also get a back x-ray to check for signs of early scoliosis.  They will want those tests when they examine her.

Then, the next day is clinic!

We will arrive at clinic at 12:30 and be assigned a room. We'll have our snacks and some books or magazines with us, along with some toys to entertain Evangeline since we'll be there all afternoon. Each of the doctors (some of whom we have never met before) will rotate through and visit us in our little room.  We will be seeing orthopedics, urology, GI, developmental pediatrics, neurology, neurosurgery, social workers and MORE! At the end of the day, all the doctors, nurses and other practicioners meet and compare notes on each patient. From that meeting a report is generated that looks at the whole child. We will get a copy of that report a couple of weeks after clinic. 

Naturally this experience is convenient in that we can see everybody at once and advantageous in that the doctors actually get to talk to one another about Evangeline; however, it is still kind of nerve wracking because you never know what may result out of such a clinic. They may decide to add in additional treatments, change an opinion about an existing situation etc. My biggest concern is urology. I am not sure how they will want to handle her frequent bladder infections. They may do nothing because she doesn't run a fever with them (they are asymptomatic). Or they may want place her on preventative bactrum or begin catheterizing her once or twice a day. None of these options are bad, they are just nerve wracking as I am stressed out trying to figure out what is best for her. It will be nice when she is old enough to voice opinions on such matters for herself.

In related news, I am still trying to get the insurance waivers sorted out to get in to see the opthamologist... and I am also having problems getting her PT eval scheduled. Although, I do hope to get those both scheduled soon. Her right leg is so strong that she gets really close to pushing herself over during tummy time, but her left legs doesn't do much but stay locked into place. I don't want to neglect anything I should be doing to encourage her left leg to do what it should be doing!  So I wish I could just contact the PT myself, but on her insurance Early Steps seems to be the only game in town for those types of services. I must remind myself to be patient.  :)  So, that is our update.  Pray with us for a positive clinic experience.  I will report back here when we get the results.  :)

Meanwhile, here are some verses from one of my favorite OT books... Isaiah.  Its something I am meditating on as I contemplate where I am heading and what God wants for my family and every family out there. Sometimes we can't imagine the destination cause the journey is kinda screwy, but goodness is out there...and we are heading someplace good...to that Place of God's Desire... we just have to keep on walking, running, cycling, swimming, or rolling towards that destination.

“For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the LORD.
9 “As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.
10 As the rain and the snow
come down from heaven,
and do not return to it
without watering the earth
and making it bud and flourish,
so that it yields seed for the sower and bread for the eater,
11 so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.
12 You will go out in joy
and be led forth in peace;
the mountains and hills
will burst into song before you,
and all the trees of the field
will clap their hands.
13 Instead of the thornbush will grow the juniper,
and instead of briers the myrtle will grow.
This will be for the LORD’s renown,
for an everlasting sign,
that will endure forever.”