NEW DEVELOPMENTS

We took Lula to the neurologist on Friday.  First of all, it was a much better experience than we had last time (see: previous post)  No one was arrested, Roan got to hang out in their rather impressive playroom, and we were seen fairly quickly (ie within the hour).  We had some results from Lula's stay in the hospital last month; Lula is having something called Infantile Spasms, which are a kind of seizure.  She has probably had them all along, but they don't look like typical seizures. She looks startled and thrusts her arms in the air (appropriately called the "Cheerleader") and they last a second or so.  We thought she was being startled and the previous neurologist never even suggested an EEG so this was an unexpected diagnosis.

I had this transformative moment when they told me that Lula was having seizures.   I thought about how most parents would be completely devastated by this news, how it would totally upend their lives, and for us it was another in an endless stream of small curveballs to be absorbed. I realized how much we are now capable of handling and how normal any process can become with repetition.

It's also the first time that a neurologist has given us some hope. The doctors think that her developmental delays are being exacerbated by the seizures and have started her on a medicine called Topamax.  She has been on it for a few days and so far has had no adverse reactions. It will take a couple of weeks to titer her up to her full dosage, and then a while longer to see if it has any overall affect on her development.

She was also sounding congested and wheezy so my mom took her to the pulmonologist, who put her on yet more meds.  I know all of these things are helping her but the amount of medications she is on is getting ridiculous.  Here is her current med schedule:

 6:00am -  2.5 ml each Amoxicillin and Prednisolone
 7:30am -  0.7 ml Domperidone
 7:30am - 1.25 ml each Atrovent and Albuterol
 8:00am - 1/2 teaspoon Miralax + vitamins
 9:00am - 1.5 ml Topamax
12:00pm - 3.5 ml Prilosec + 1.25 ml Albuterol
 4:30pm -  0.7 ml Domperidone
 6:00pm -  2.5 ml each Amoxicillin and Prednisolone
 7:30pm - 1.25 ml each Atrovent and Albuterol
 8:00pm - 1 teaspoon Miralax
 9:00pm - 1.5 ml Topamax
10:30pm - 3.5 ml Prilosec
 1:30am -  0.7 ml Domperidone
 2:00am - 1 packet Florastor + 0.3 ml fish oil

This seems like an absurd amount of stuff to put into 16.5 pounds of little girl.  It's almost a wonder that her little body can tolerate all of it and I have to remind myself that this pharmacy is working some magic on her.

I hope these all help her to be more comfortable, less sick, stronger, and maybe even more capable, but our mantra for Lula remains and always will be this:

Lula is exactly who she is meant to be.  Lula is exactly who she is meant to be.  
Lula is exactly who she is meant to be.