That's a common phrase in our household, I'm not sure where it came from. Months ago (maybe longer) I started saying it - a lot. It has caught on with the kids and Ryan, it is used mostly in the car but occasionally other times. I say it now because there is much to catch up on people....
As you may remember Nevin was scheduled to have surgery on June 6th and in a strange turn of events surgery was canceled and we found ourselves in the hands of another surgeon all together. We fell in love with Dr. Lin and were so grateful to be with his team, I wish we would have had him the whole time but, the important thing is that Nevin got him and he's fabulous. We were bummed that surgery would not happen before July and Nevin would be on a very restricted diet for 6 weeks which could possibly ousts our vacation plans to Texas. We patiently waited for a phone call to schedule surgery. On Friday June 15 I took Nevin to Cardinal Glennon to have his cast removed (did I blog that yet?) and as we were pulling back into our driveway my phone rang, it was Cardinal Glennon (this is becoming an eerie trend). I answered and was shocked when the secretary said, 'Dr. Lin had a cancellation and wants to fit Nevin in on Monday, can you do that?'
"This Monday? Like three days from now Monday?"
"Yes ma'am. Would that work?"
"absolutely!"
Talk about perfect timing. Not only did his surgery date only get pushed out 11 days from his original date, he would finish his restricted diet the day we arrived in Texas. We were beyond excited and overwhelmed. There was no time to dwell and worry just time to get ready for surgery!
The surgery itself was long. Before surgery even started we had to wait an additional 2 hours, that made our wait time a little over 4 hours. Our nurse told us Dr. Lin is a perfectionist and almost all his surgeries go late because he treats every child as his own and won't stop until the procedure is perfect. Ok, I could wait for that. Nevin did great waiting, we watched a lot of Scooby Do. Once he was back in surgery they took us to a private waiting room that was so great. My parents brought the other boys up for dinner and we sat in peace with them trying not to worry too much. His surgery lasted for over 4 hours. I was nervous but ok, I knew he was in the best of hands. When surgery was out and we saw Dr. Lin and Dr. Roe they were very pleased with how things went. They were able to tighten the muscles in the back of his throat, lengthen his soft palate and when they got into his mouth they were able to see he did indeed have a submoucus cleft palate which they were able to close.
Side bar....
I'm not usually one to worry about being justified but the moment Dr. Lin said he did have a submucous cleft... I have never felt so justified in my entire life. I had known in my gut before Nevin was born that there was something wrong with his palate. For three years I didn't know what, I just knew something was wrong, when he was 2 1/2 I found out what a submucous cleft was and for 3 years since I have been trying to convince all of our doctors that that is what he had. No one would believe me though because they couldn't see it. His speech therapists agreed with me and were a big support in my fight over it. How did I know? Prepare to feel one of two things (ok, maybe both), I am either a whack job or I had a divine revealing before he was born.
About two months before Nevin was born I had a strange dream. In the dream I gave birth to Nevin and before I could see him the nurse took him away from me to another room. Frustrated I went searching for him all over the hospital (which was odd because we were planning and did have a homebirth with him). I finally found the nurse who had him but her back was turned to me, when she turned around she was holding Nevin and she was pulling his teeth out, he had a cleft palate and did not look like a normal baby. I grabbed him away from her, held him and just cried, telling myself how much I loved him.
Now, the stranger part of all this is not just the dream but what I feel was a revealing of our life. Nevin has felt like a puzzle to us and we have searched so many doctors at Glennon trying to find the missing piece that would put him together for us - Me searching in the dream. We took Nevin to the dentist at Glennon who had to do major dental surgery on him and was the one who referred us to the cleft team. Dr. Veraldi was the first one to take me seriously - The pulling his teeth. Finding out he did have a cleft from Dr. Lin - obvious with the dream. And Dr. Braddock finding he had 22q deletion - me crying over him being different but knowing I loved him anyway.
Close the side bar....
Nevin did fabulous after surgery. The poor thing looked terrible and felt terrible but did so well. We had a nice surprise, one of his classmates mom is a nurse at Glennon and works on the floor we stayed at. Her two boys had cleft palates and Dr, Lin was their surgeon as well. It was nice to have a familiar face around. We stayed at Glennon for 3 days and nervously but optimistically came home. By the following Monday Nevin was back to his normal self, almost! His speech has continued to improve, it is still going to be a lot of work though. He is such a trooper and working so hard.
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