First I will post some lovely pics from the last trip we took two weeks ago with Grandma Evans (Nate's mom). Not much to update about that trip on the medical front, but check out the last post about our exciting (read sarcasm here) trip back from LaGuardia.
Here are a few ridiculously cute pics not associated with NY trips.
Ok back to business. We were supposed to go to NY on Sunday instead of this week and then go again next week for the last NAM visit before surgery. I was excited for two big reasons. 1. Nate was going to be able to come. 2. It was part of a workshop where they introduce NAM to other orthodontists so in a small way it was a way we could give back to a medical team that has become a family to us. But we cancelled the trip because of this:
And then we only got 2.5" of snow. Oh well. Turned out to be a wonderful weekend home, so I am thankful for that.
On Monday we had a quick appointment with Dr. Flores (local plastic surgeon). He reiterated his pleasure with E's progress and answered my questions. This time he said surgery would last 5-6 hours. He explained that even though it's an easier surgery for him to repair lips and nose, he would take longer than usual if he felt he could attach the gumline segments together. Please pray that E will have the progress in the next two weeks so Dr. Flores can attach both sides! This will reduce the need for a surgery around age 8 that occurs in bilateral clefts where the pre-maxilla, if unanchored in this surgery, would slowly descend out of place. They literally have to break the gumline and reposition it if this happens. They don't usually do the gumline repair during this first surgery because the pre-maxilla is usually too out of place. However, because of NAM, it could be done. And I think E's chances are high. Please pray. Please.
At Riley seeing Dr. Flores and team
Dr. Flores was worried about the condition of E's skin. It is really irritated and broken down from all the taping. He doesn't want to make the repair with such skin. Understandably so. He told us to ask the NYU team to see if we could stop taping (and therefore) the device a week before surgery to allow the skin to heal. The thought excited me. One less week of taping. But in the back of my mind I knew they would not want that. Mainly because at the last trip, Dr. Olson told me that the plate should stay in until the nurses take him back to the OR.
Fast forward to today's trip to NY. So far, E has done so great! And therefore, so has mama. It doesn't hurt to have great help and company as usual.
At the clinic, they were immediately concerned about his cheeks. I thought his cheeks were the normal amount of bad towards the end of 4.5 months of taping but apparently, they are worse. They confirmed my suspicions that stopping the device a week before surgery was not acceptable to them. They told me about some data that should be published soon to back up their opinion. Because it isn't published, I won't share it here, but it is convincing!!
So we must be creative with taping these last two weeks. They first told me of a method using elastic, Velcro, and a hat. It is our plan B as it sounds complicated to make (though amazing Sandy has already offered to make it for us). Instead, Lucy, one of three excellent and deeply caring dental assistants, made a tape that doesn't stick to his cheeks but anchors behind his ears.
Hopefully this works, but I think we are guinea pigs to test out this method. It's already so much better in terms of his cheeks have calmed down and he can't as easily rub it off (yet). They took more pictures of Elijah. I will post later those pictures they took in October versus now. It is outstanding.
They told us if he has no issues/sores this week from his plate, then we can skip the last week where they don't make adjustments anyway. It is just a signing off before surgery visit. Prayers appreciated for no issues/sores before surgery and for healing of his skin (including and more importantly on his lips and nose). Also please pray he stays completely healthy until surgery. Thanks. I truly long for and appreciate your prayers.
I ran into a mom and her baby that had his surgery 4 weeks ago. I have been encouraged and supported by this mom who has treaded the waters before us. It was great to see them. He son looked amazing. And I know she struggled as I have with the idea that the surgery would change the look of our babies faces. That we would miss their cleft-wide smiles.
Elijah's beautiful smile
Seeing how happy she was with the results has been great for me to see and actually has made me less worried about that. But I will always love that wide smile.
Now I am just trying to prepare for surgery. I know he is in God's hands. I am thankful he is as healthy as he is. But it is starting to really hit me now. I tear up every time I think about turning over my baby to the surgical team. Again, prayers appreciated.
How infinitely harder it must have been for our Heavenly Father to turn over his only Son to this fallen world to bring healing and make things right, the way they were supposed to be.
How precious is your steadfast love, O God! The children of mankind take refuge in the shadow of your wings. (Psalm 36:7 ESV)
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