He is very happy with Elijah's result so far and let us know that the next 6 or so weeks his scar will get pretty tough and red. We are supposed to try massaging it daily IF Elijah can tolerate it. It will help soften the scar tissue more quickly but many babies hate the massage. He said if Elijah hates it, we can skip it as it will naturally soften over time.
His palate surgery will be in August probably, but the date won't be set until it goes through pre-authorization with insurance which takes a while. I think it took 2 months to get his lip repair approved by insurance so we probably won't get a surgery date until late June/early July. Dr. Flores said that surgery will take around 2.5 hours. He will use all of Elijah's natural tissue to close his palate and will have to reorient and connect some muscle that is supposed to lift his palate.
I asked what's next after palate repair. In a small percentage of children, a small hole called a fistula sometimes develops in the palate after the palate surgery. If this happens, Elijah would need surgery to fix that but it's a small minority of kids that need this so please pray he would not develop a fistula. Sometimes a palate revision is warranted later if speech problems uncorrectable by speech therapy present. Hopefully that won't happen either.
Another possible but unlikely surgery in early childhood would be revision to lip and nose. Dr. Flores said he didn't think Elijah would need that as he is very happy with the results from the surgery. (Thank you NAM and thank you Dr. Flores!) It's not uncommon for that to happen at some point but sounds like we may be able to delay it to later childhood if it appears to be causing Elijah self image problems or avoid it altogether. I would appreciate prayers that we could avoid this surgery altogether but also that God would help Elijah put his confidence and identity in Christ and teach us as parents to instill confidence in Elijah that is not based on physical appearance.
I did find out Elijah will definitely need the bone grafting surgery where they take soft bone from the hip and put it in his gumline. I kind of expected that since only one side of his gumline was connected in surgery. The reason Dr. Flores went ahead and connected the side that was close enough to connect was because it may spur bone development on that one side. That would help anchor the pre-maxilla (the center piece if gumline that used to not be connected at all) in place. If it isn't anchored at all, often times it will slowly decend out of place and then has to be repaired (broken and set in correct place). Please pray that bone would develop now on the left side of Elijah's gumline and that it would anchor the premaxilla in place so that we could also avoid that surgery. Regardless, he will still need the bone grafting surgery for the right side that is not connected. That will happen around 7-9 years of age.
He is still wearing the nasal stents (most days). They aren't as much work as the NAM plate he had before surgery, but tape is involved and I so look forward to the day we don't have to mess with tape on his face. He unintentionally pulls it out by rubbing the tape of his itchy cheeks. When he learns to intentionally pull it out, then we will stop with the stents. That should be in another 2-3 months.
It has been a long 5 days in the Evans family as Nate's dad had a heart attack last Wednesday and open heart surgery on Friday. But, as always, God has been so merciful to our family and has brought Randy/Dad/Grandpa through all this to a good recovery. It had been amazing to see God take care of the big things (protecting Nate's dad and bringing healing) but also in the little things (placing nurses and medical staff the family knows to help care for him through surgery and recovery which has brought a tremendous amount of comfort especially to Nate's mom to know he is in good hands).
One of the beautiful things I have seen in this is how their church family had cared for them and walked alongside them in this process. Friday during surgery (about 8-10 hrs- I lost count), at any given point, there were 10-15 people here with us in the waiting room. They definitely made time go by more quickly and lifted the mood in the room. It very much reminded me of how the Church is supposed to work.
...that there may be no division in the body, but that the members may have the same care for one another. If one member suffers, all suffer together; if one member is honored, all rejoice together. (1 Corinthians 12:25, 26 ESV)
It truly was a beautiful picture of the Church as a well functioning body. Nate and I (in Indy) and his parents (in Terre Haute) are very thankful to be part of churches that build a Christ-centered community. I have learned more and more over the last year how important...no, that's not the right word...how vital, how necessary it is to go through this life in a Christ-centered community and church. We are not intended to endure the sufferings of this world in isolation. And we are thankful for that. It is a wonderful and humbling thing that The Lord would use each of us to do his work of comfort.
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