Tuesday, March 5, 2013

clinic day

Max is amazing. I am constantly impressed with his approach to life and how simply wonderful and easy going he is. We actually enjoy our trips together to Children's because it's just a part of our lives and he accepts it. (And he always gets to pick his favorite chocolate from the hospital gift shop at the end of the day!)

Yesterday we had appointments with Craniofacial, Plastic Surgery, and the Renal Team.

First up...plastic surgery. I met with the team a few years ago when they started the reanimation surgery at Seattle Childrens to learn more about this new procedure. I set up this appointment to check in again with them, check on the procedure's development, and Max's "candidacy." The surgery is a fairly complicated, invasive procedure involving two lengthy surgeries. They take a nerve from the "working" side of the face, as well as one from the lower leg, and let it "grow" in the side of the face with the palsy. While I love the thought of seeing this HUGE smile on Max's beautiful face, I also am so in love with his face just as it is. I don't even really see the "palsy" anymore but I know others do. The other day at the playground a child asked me why Max looked so angry. I was stunned because Max was super happy and smiling...but in her eyes, his different smile looked angry. Hmmm.

Of course if Max was able to communicate about what he would want, this would make it much simpler...but I don't know if and when he will ever really care.

So for now, I am just learning more...and I am in absolutely no rush to do this surgery. They are currently studying the impacts of this surgery on improved drinking, eating and speaking. IF this were the case, I would definitely feel more motivated to take this step. I am just thankful that modern medicine continues to improve each and every day and provides many options for our family members. What a blessing!

Next up was Dr. Hing - Craniofacial Extraordinare....

She not only is a great resource for craniofacial issues but also just overall care for Maxwell. She has been on Max's team for the past seven years and always is very helpful.

Love this cute pic of Max checking his own reflexes. Dr. Hing was doing it with him at first and then he took the instrument and tried it himself. Such a character!

He was super cooperative when she checked the scoliosis situation. But unfortunately, yep...the scoliosis hasn't magically disappeared....fortunately it's mild at this stage. This was the first time though that I could really see and recognize the curvature. This issue is one that really concerns me...and I'm sad to think of him in pain in the future.

Dr. Hing is helping us follow up with:
  • Max's ENT regarding this BAHA (insurance has denied us many times)
  • The social worker/finance team to help us find alternative resources 
  • Orthopedic to get them officially on Max's team
  • General surgery about the gtube
Love having doctors who help me coordinate Max's extensive medical team! Feels so supportive and wonderful!

Last but not least was the renal ultrasound and an appointment with that team. Max was SO dang cute and tried to "help" her technician the entire time.


The good news is that the calcium issue with this kidneys has been maintained with the increased fluids over the past year. (This was caused by the high amount of lasik medication...which was necessary for his preemie lungs and weak heart...when he was a baby.)

And his kidneys are growing slowly but surely....which is good. So we are going to do some blood and urine tests this week to check on the overall kidney function and hopefully his renal "failure" hasn't worsened. (I don't think it has...just momma's gut.) Depending on the results, we are going to try and test Max on less liquids so that he has more opportunities throughout the day to feel hunger and thirst.

By this time in the day, Max was done. He quickly got comfy in Matt's arms and fell asleep. So sweet.

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