Alex and Maddy

Alex and Maddy

Thursday, July 11, 2013

Appointment Update

This was a somewhat easy trip to Houston logistically. We only had two appointments scheduled. We arrived on Monday and got to spend some good quality time with friends.

Tuesday morning we saw Dr. Koenig. I really didn't feel like I had a lot to discuss with her. Our appointment took longer then I expected because she did have some things to discuss with me! We spent a good chunk of the appointment talking about Maddy and what needs to happen when she is born. The remainder of the appointment was spent discussing Alex's GI/Pulmonary probelms which are our biggest concern right now. Dr. Koenig also felt like for the first time in Alex's life we are not dealing with any day to day crisis so as much as possible we are going to try and let him "feel good" for a few months without too many major changes. We did increase one medication as Alex is complaining of headaches about 4 times a week.

Tuesday afternoon/evening was again a fun time of fellowship with friends. Alex loves his time with his mito friends so I love that we get to have these fun times interspersed with aapointments. Wednesday we saw neurosurgery. He confirmed once and for all that Alex definitley does not have a tethered cord or chiari malformation (the 2 most common causes of a syrinx).  That means that the only treatment option is a surgically placed shunt in his spinal cord. The Dr. felt like at this time the risks of doing that surgery outweigh the benefits of allevating the symptoms that may or may not be caused by the syrinx. ( Because of all of Alex's underlying diagnoses, it is impossible to say what is caused by the syrinx). He does however want us to follow up with some more testing that we have not done in a few years. I am very happy to take surgery off the table for right now!

During both appointments we were encouraged/told we needed to resume Physical therapy which we had been on hiatus from for about a year. So I have scheduled a new evaluation to get that process started. Our next few weeks and months are chock full of appointments (and fun) as I try and get all our ducks in a row before Maddy arrives in November. Our hope is that we can then have some down time and just enjoy our new little girl until after the New Year.

I am so grateful for doctors and nurses (and other staff) who continue to help us navigate this crazy journey to give Alex the best life possible. I am thankful for friends and family who are there to take our mind off hard times and laugh with us, those who shoulders I turn to to cry on when necessary, and those who listen as I try to process through so much medical information on a regular basis. I am so blessed to have so many prayer warriors who pray for my sweet boy on a regular basis.
Most of all I am so lucky I get to be Mom to the most incredible little boy who inspires me everyday with his love of life despite the hard life he has been given. I am amazed by his laughter in spite of chronic pain. I am awed by his spiritual devotion and love of God. I learn from him daily.
Ali

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