That's the official wording of the Surgical procedure that Rees will have done in just a little over a week. That's a lot of words, isn't it? And you might be asking, "What do all those words mean?" This post will attempt to help our readers get an understanding of what our little guy is going to go through as well as help us to get prepared and ready for the upcoming surgery. As Molly had the same surgery, she will be compared with Rees to show the similarities and the differences.
**PLEASE note that there are some graphic photos in this post. If you have a weak stomach or are sensitive to anatomy and/or surgical related photos, view at your own discretion.
This is what Molly looked like on the morning we arrived at Children's Hospital in October, 2007. She was born with an encephalocele at the root of her nose. An encephalocele is a herniation of the meninges (the lining of the brain) which caused her to have mild hypertelorism, an abnormally increased distance between the eyes.
An encephalocele "happens" prior to the formation of the skull, which, in Molly's case and Rees', too, caused a hole in the skull just above the nasal bone. As the skull formed, it essentially just went around the encephalocele.
Although, Rees was born with the same medical defect, his situation is not exactly the same. His nose and his eyes are significantly further apart than Molly's was as well as his nostrils.
The hole in his skull caused by the encepalocele is VERY small, however, the herniated tissue (that comes down and is located within the bulging area where his nose should be) caused his nostrils to be abnormally distanced and his nasal bone is concave and completely filled in; he has no nasal cavity, only the spaces where his nostrils are. The encephalocele basically rests in that depressed portion of bone between the nostrils.
The surgeon performs a "Facial Bipartition" to remove the portion of bone with the hole in it (above is my guess for the amount of bone that will be removed from Rees' skull). He will also move the eyes closer to one another. In doing this, the entire front of the skull has to be removed. The example below does not show the full extent to which the skull was cut in Molly's case, however, it does give a good example of the facial portion.
The bone that was removed from Molly was a little more than two inches. The bone was then used to fill in the gaps created by the bipartition. Rees' procedure will likely be similar and we are interested to know whether or not they will provide us with the same details as we were given for Molly's.
So, what about the "nasal reconstruction with dorsal cranial bone graft" part of the surgical procedure ... ??
Well, that is the part where the surgeon will actually scrape bone from the back of the skull most likely and attempt to use it to contruct the nasal bone that Rees currently does not have. He may also use cartilage to build up the nose as well. Cartilage from Brynn's own ear was used to help build up her left nostril during one of her surgeries. This may or may not be done during Rees' first surgery but likely will be done at some point.
Isn't it amazing what God has allowed man to do?
He has certainly blessed mankind with an incredible amount of knowledge and ability and it is awesome when it is used for good.
Molly was such a trooper and a real fighter!!
We know that is so important to the healing process!
She's still a fighter with a lot of determination and perseverance!
We sure hope Rees has that same fighting spirit. He reminds us so much of Molly in looks and in personality but we can't really know how he will handle this surgery until it's happening. He tends to be more nervous when we even enter a clinic or hospital building but so far, even when he has had to get a shot or go through a test, he has been compliant ... he just gets very nervous, anxious and cries.
His MRI was scheduled for today and we don't expect there to be any issues with the results. We talked to him about it last night and let him know there wouldn't be any needles, that Baba was going to be taking him and would hold his hand and that afterwards he would get to eat whatever he wanted! WELL... apparently, things have changed since the last time we went through this, which was when Molly had it done 8 years ago. Brian called me an hour after the appointment time and said that they had only just taken Rees for the scan. That was ALERT #1! He said that because the scan would take 30 minutes, they wanted Rees heavily sedated and would administer the sedation by IV. ALERT #2! Because of the length of the test, they did not think it best for Brian to go back with Rees. ALERT #3!
All the things we told Rees were WRONG! and HE WAS NOT HAPPY ABOUT IT! He put up quite a fight!
I was pretty nervous after hearing all of this ... BUT ... I sent out a message and several of you prayed for him and when it was all done, I got to talk to him on the phone and he said "he and Baba eat now!" Well, that was a good sign ... and at least one thing we were right about! Thank-you LORD and thank-you prayer warriors!
When I got home from work, he did not give me a hard time and he was in a pretty good mood. He and Baba gave me the "thumbs up" after the evening shower. Woo hoo!
We would appreciate your prayers for this little guy and us as we all prepare for next week's surgery. We also ask prayer that he stays healthy so that the surgery will go as planned. We will be updating as we are able via the blog, email and/or our facebook group.
This weekend we plan to talk to Rees about the surgery by sharing the "scrapbooks" that I kept on Molly and Brynn's surgeries and even Jonah's surgery in China in April of 2015. We pray that this goes well and that he will be comforted knowing that his siblings have been through it and that we all love him and will be there for him.
We are trusting that God will help us to relay the message to him in just the right way.
Additional prayer requests for our family would be:
- Strength for Brian and Kimberly as we continue to take care of these boys and go through the surgeries that are about to begin.
- Peace and understanding for the children as when one has appointments, procedures, or issues of any kind and receives attention for that point, another child experiences feelings of jealousy and/or exclusion (Molly put it well when she said, "Really? Now we have kids who are mad because they don't have to go to hospital? What kids WANTS to go to the hospital?")
- Continued prayers for Brynn who has really struggled on and off since bringing the boys home. She is a giant ball of emotions as she deals with getting to know them, getting used to them, trying to understand them ... and she experiences a great deal of frustration mostly due to misreading and/or misunderstanding words, actions and intentions.
- Good health for all of us who finally seem to be keeping germs and illness away.
- Continued learning, growing and loving for our whole family.
And, in late-breaking news, just this evening, this story developed on the Prendergast homefront:
Tonight's act of defiance has been brought to you by our dear son, Jonah ... who dared to cut his own hair. He wanted a haircut so he asked his mama who said "no" because she wanted his hair to keep growing. He asked his baba who said basically the same thing. Well, he decided to take matters into his own hands and secretly took a chunk of hair off with the scissors he knew I had in my bathroom. It wasn't discovered until we were about to have bedtime storytime ... so ... needless to say, storytime was JONAH GETS A HAIRCUT by Baba Prendergast. It didn't totally fix the mistake but it's a lot better anyway.
Why is it that when kids decide to cut their own hair they do it right in the front and cut all the way to the scalp?
Can you tell that he knew we weren't very happy??
And, YES, Baba's workshop is also the family hair salon/barber shop!!
(At least for the males in the family)
When he was done, I asked him, "Are you happy now?"
And then I said, "NO more cutting your own hair!"
Prayers!
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