It's happening so quickly!

     "It's happening so quickly!"  That was my response after receiving a call from a radiology nurse at Children's Hospital on last Monday, October 2nd.  With a very calming tone, she wanted to speak with the parent or guardian of Kerstin.  After pleasantries were exchanged, she told me that she was in fact calling to schedule Kerstin's appointment to have her G-J tube placed.  I must admit that I was caught a bit off-guard by the quick turnaround. I was even more surprised when she stated that the procedure could be done this Friday the 6th or Wednesday or Friday of next week.  I said, "This Friday? It's happening so quickly!"  I paused, I guess she thought I had hung up or something.  I grabbed my datebook because another one of Kerstin's appointments had been rescheduled to this week, I told her that Friday would not work for us. 

     Believe it or not, the Sunday before, I had mentioned to my family that I felt like there would be a call from either the doctor or the hospital about scheduling the procedure.  So I was mentally preparing myself for this by writing down possible dates.  This did not become real until Jenna (nurse from radiology) called.  Real did not become so emotional until the call.  The tears came...it is real, again.  No matter how minor it may be said to be, it does something to the emotions because, Kerstin is my child!  My girl child!

Dates of possibility.

     So, on today, Kerstin will be having the procedure to replace her g-tube with a g-j-tube.  Kerstin is strong.  This new feeding tube will only help her even more.  Having to have the g-tube became touching but it was for her good and this g-j-tube will also be for her good.  

More to come...

Ever Growing Vocabulary.

     I must say it again, having a child with "special needs" causes the parent to learn so much and learn it quickly!  You would be surprised at the amount of information that is giving to a family in a single doctors visit, an IEP meeting or at a therapy appointment.  The things and information I used to take for granted, I can no longer.  

It's been a long week, she hasn't been feeling well.  So, seeing this smile return made my night!

     In the not so distant past I had heard of Baclofen (BAK-loe-fen) and Scopolamine (which I keep wanting to pronounce sco-lop-a-meen instead of skoe-POL-a meen).  Never knew that one day, Kerstin would actually be recommended for them both.  That's where we are on this journey now!

Baclofen:  Used to treat children and adults with severe spasticity, and to help with the treatment of physical and occupational therapies.   Kerstin's PT suggested we see her newest doctor, who is a doctor of physical development and a long background with Cerebral Palsy.  Both her OT and PT sent separate letters to Dr. Law suggesting Baclofen to aid in their treatment.  

     Kerstin can be very rigid at times, making it difficult to dress her as well as perform various therapies.  Also, she becomes so spastic, that her kicking becomes so hard.  It is hard to see your child go through things like that!

     The second medicine; Scopolamine patches. The little patch that was featured in the Wordless Wednesday 09/10/14 post. These little patches are often used to prevent nausea and vomiting even motion sickness.  So why this patch for drooling?  Scopolamine or "transdermal patches" have been found to be very effective with controlling the drooling in patients that have traumatic brain injuries. 

     No medicine comes without side effects.  Both may cause dizziness and drowsiness.  The Baclofen causes frequent urination while the Scopolamine causes dry mouth and throat, as well as dry skin (it dries liquids) and we were told to make sure that Kerstin does NOT get too hot and has plenty of liquids!  Needless to say, you won't find us out and about too much in these final days of warm weather!

Lets not forget what happened on this day 13 years ago!