Kenzie Boston Appts Jan 2018

On Monday Kenzie had several appointments at Boston Children's Hospital.  The day started off bright and early at 8 am with our first appointment ever with Dr Fogelman, who works in the orthopedics department and specializes in cerebral palsy, which is a disease that has extra movements like Kenzie has.

Dr Fogleman examined Kenzie and noted how she couldn't lay flat and when standing Kenzie is on her toes.  Lots of technical jargon left out, Kenzie is also very tight in her hamstrings which is keeping her from fully stretching out or sitting properly.  The solution for this is a treatment where botox and phenol are injected directly onto the muscle which helps calm it down and relax.  The botox treatments would require several injections, but will also require general anesthesia.  So yes, our three year old is going to be getting botox. 

During this exam Dr Fogelman also came up with a script to replace Kenzies current leg braces.  We will have this done more locally, but may need to go to New Hampshire for a couple appointments to get it done.  Also, Dr Fogelman ordered an X Ray of Kenzies hips to help start documenting how they look since she isn't upright often.  It was also going to be set up so that at our next appointment with Dr Fogleman we would also meet an orthopaedic surgeon, not because Kenzie needs something now but because she might in the future such as muscle lengthening in her calves.  An update to this... We were contacted by Dr Foglemans scheduler today and as a result of Kenzies X-rays, he wanted an appointment set up for an orthopaedic surgeon to evaluate her hips as well.  So that will be happening on March 26th. 

We also mett with Dr Rodan, Kenzies neurologist.  From his perspective things are pretty stable and since Kenzie has been tolerating her new medicine for her extra movements, we are going to slowly increase her dosage to get maximum benefit.  He explained that her MRI from December was to be expected, and doesnt show any drastic changes.  The disorder causes inflammation to ebb and flow from one side to the other of her basal ganglia.  So for now, we are good here, just monitoring for any new seizures or other odd activity.  Follow up in 3 to 4 months.

Lastly, we met up with a nutritionist who gave us some ideas and tips to add calories into Kenzies existing meals.  Basically Kenzie needs a high calorie diet.  As if she isn't already eating everything .... but she also needs to have structured snacks and meals every 2 to 3 hours.  No "grazing".

So this is a lot of information and I'm sure I'll think of something I forgot to add.  In the short term lots more trips to Boston coming up...so that is going to be a little stressful but we will get it done.  More to come as we hear on more firm scheduled dates ... love to all