Monday, June 3, 2013

A River Crossed

We have crossed this first river and it's nice to be on the other side. Justin is recovering so well. He is practically back to his normal self. I have to warn him to take it easy because he is still healing internally. We have been so blessed through this entire process. Life is soo crazy. 

Justin the morning after surgery. He was still completely shaken up, confused and scared. The nurse in the ICU asked if he wanted me to hold him and he did. He looks like he isn't a happy camper but he was just smiling before the picture was taken. I think me being able to hold him was really good for both of us. The blood you can see on the bandage is from the 'halo' used to hold Justin's head in place during the surgery. He also had a soar under his chin from the halo. His lip developed a huge blister from the breathing tub rubbing against it.

I think this is Wednesday afternoon. Justin took a shower shortly after this and took off the white bandage by himself. He was crying this is gonna hurt and then he just tore it off really fast. This kid is crazy. We were moved out of ICU Thursday evening.

I think this was Friday. Justin swelling went down a lot faster then we had imagined. He started getting up and going pee on his own the morning after surgery. I'm sure this helped the swelling as he was on his feet, not just laying in bed.

We are headed to Logan's soccer game. Justin has been getting pulled around in the wagon. Logan has stepped up and taken upon himself to pull his big brother around. It is the sweetest thing. We have been getting out of the house in the evenings to take walks and Logan will ride his bike or scooter for a bit then he drops whatever he is doing and takes over pulling the wagon. He is a tough kid. We have been attending Justin's soccer team's games as well. Justin has been a good sport and wants to be there to cheer on his team even though he can't play.

 Justin dozed off to sleep when I started this post so I woke him up to take a picture...that's why he looks half asleep. He has recovered so well. We went to the park today and he was playing like he usually does....which he isn't supposed to. We see Dr. Lemole next week at which time he will probably let Justin do more active things but still no swimming for 4-6 weeks. Justin's head is glued together so he can take showers but he can't have his head completely submerged in water. The glue will eventually wash away and his hair will grow back and cover the scar completely. They don't use staples or stitches, just glue. The holes in Justin skull are covered with a material that metal plates or screws. Pretty interesting stuff. Justin discovered two bumps above his left eye and we think those are from the stitches from his jaw muscles that had to be cut. 

What's next? We have a follow-up appointment with Dr. Lemole in a week and a half and then we are just waiting for a call that a tissue sample was sent to the genetics lab at which time we will go get Justin's blood drawn and sent for testing as well. Testing is most accurate if done with tissue and blood. It takes about a month for the testing.

Justin will have an MRI in 2-3 months to see if the matter in his skull base is hyperostosis (thickening of bone) or more tumor and evaluate the tumor in the sinus. We could possibly do radiation at that time. Then we will focus on the tiny acoustic vestibular schwannomas by making decisions to do surgery on the left nerve where hearing is already lost or do nothing, get a hearing aid and wait 'til a medication is available and risk Justin losing his hearing in the left ear completely by waiting. Hearing loss is a possibility if we proceed with surgery and he will surely lose all hearing eventually if we do nothing...just not sure the time frame. We will do a lot of praying and fasting, that I'm sure.

Justin knows this wasn't the only river he had to cross. He obviously doesn't completely understand NF2 but he does know we have more rivers to cross. I just hope there is a medication available soon instead of surgery being the only option.

I was listening to some of the I'm a Mormon clips and there was a clip of a mother who lost a 4-year old son in a snow sledding accident. She 'matter of factly' said "Life isn't fair. We knew that when we made the choice to come to earth." (That is the message I heard...she could have said something completely different though.) I hear her saying life isn't fair in that 'matter of fact' voice often and I agree with her it's not fair that my sweet, innocent little boy has this burden to carry and I also firmly believe that we knowingly accepted the unfairness before we came to earth because we knew that life after this mortal probation would more then make up for the unfairness...a billion times over.

I'm so grateful for all our tender mercies. We were so blessed to have both grandma's on hand to assist with Logan...he was quite the handful to say the least. We are amazed at the out pouring of love from so many people.