It has been a little over a month since my last update- and oh what a month it has been!

On August 3rd Taygen turned ONE!  It is crazy to think my baby girl is already a whole year old.  We celebrated with family and friends with a big party.  My sisters and parents helped us decorate the whole house, patio and backyard in yellow and white for her "You are my Sunshine" themed birthday Party.  It was an extremely hot day and we set up Taygen's new pool (Thanks to her Aunt Gigi (Angie) and Uncle John).  Taygen wasn't very interested in her cupcake and slept through the beginning part of her party.  Thank you to everyone who came and helped make her first birthday so memorable! We were also surprised with some amazing news- as we were opening gifts from my sister Christina and Jim (Aunt Cici and Uncle Jim), one was a invoice from Scottsdale Healthcare announcing a new Cousin for Taygen arriving in mid-March.  We couldn't be any happier or excited for baby Kane expected arrival. 
My only regret is that I spent too much time visiting and socializing I didn't not capture as many photos or videos - so if anyone who was there has any, Please send them my way.  Next year I will be sure to have a designated photographer/videographer for her party.


Since the last update we remain to be unsuccessful with treating Taygen's seizures (Infantile Spasms) The Keppra alone was ineffective so we began treatment with a medication called Vigabatrin (Brand name Sabril).  As a potential side effect, this medication could cause permanent vision loss.  To monitor this we will be traveling to Boston every 3 months for monitoring with the Opthalmology clinic at the Children's Hospital.  Although the Vigabatrin started out showing to be promising- her seizures reduced from 7 to 8 clusters a day to 2 clusters a day but have since increased again- even though we have upped the dosage 2 more times. We have a plan to up the medication one more time before looking into other treatment options.

We have been following with 2 other Opthalmology clinics for Taygen's Cortical visual Impairment (limited vision due to abnormalities of the brain) and during one of her recent vision exams it was determined that she is severely far sighted.  Although we are not sure exactly how much Taygen can see, They prescribed her glasses.
We have had her glasses for about 3 weeks now and inconsistently see some improvements.  Surprisingly she doesn't seem to mind wearing her glasses.  They hook behind her ears to stay on and she looks absolutely adorable in them.
At one of her Opthalmology appointment the doctor had warned me that strangers would ask or make comments assuming that Taygen was wearing glasses as a fashion statement or that it was cruel of us to make her wear them, although a lot of development is dependent on vision and they are purely for her development and benefit.  I thought there was no way people would be that ignorant- but I was proven wrong.  We were in Glens Falls with Angie and John and my parents and we were at a restaurant when this elderly lady stopped me on our way to our table to ask me why Taygen was wearing glasses.  I kindly explained to her that she was farsighted and she needed them to see.  She made a few comments basically saying that it was torture - I had to explain to her that it was not torture and that Taygen actually does not mind wearing them as she may actually be able to see somethings.  I am now aware that this is possibly the first of many comments- But for the most part we get comments on how adorable she looks with them.

We will be traveling back to Boston this weekend.  Taygen will be inpatient at the Children's Hospital where she will undergo Long term monitoring with EEG, a possible MRI, a PET Scan, and a Spec scan.  This testing is to determine where the seizures are starting and how much of the brain is effected.  They will present her test results to a committee where they will determine if she is possibly a good candidate for brain surgery to treat the seizures and reduce her risk of different types of seizures.  
If surgery is not a option or is not the best option- we will look to begin a new treatment plan with hopes of not only reducing her seizures but possibly stopping them.


Since my last update I had surgery where they removed a wedge section of my lung where a few spots of concern were.  After my body not responding well to Oxycodone I ended up staying 2 nights in the hospital and Pathology results showed no cancer and they actually believe the spots are scar tissue.  I will now have to follow- up with the doctors at Roswell with another CT Scan at the beginning of October.
Since the surgery I have suffered through some major coughing spells where I do not feel sick in any way but cannot stop coughing.  After 2 chest X-rays and a visit to the ER after an awful night of non-stop coughing it is believed that with my body healing from the lung surgery that my lung is pulling my trachea causing irritation and hopefully will get better over time :/

it has been a crazy busy month but things seem to be settling down a little with only one trip to Boston scheduled for August/September and One trip to Buffalo scheduled in early October.  Hopefully we can plan some trips for fun and not always with medical appointments involved.