Noah has had a pretty rough day today. He has had pain and nausea all day. He has sores inside his mouth that are bothering him. He can't turn his head to the left yet. Just about everything he has eaten has come up. Dr. Wellons told us this morning that the third day after a surgery like his was usually the worst one due to the amount of swelling. Noah's attitude hasn't been all that bad today. Some of our visitors today were told to "go away and leave please" by our little man. He has called everyone and just about everything 'stupid' - but thats about as bad as it has been.
Occupational therapy came today to check out his movement and encourage him to sit up and move his neck. He has a pretty sore neck and didn't want to move too much. He hasn't stood up on his own yet and hasn't had a desire or tried to walk. This evening he asked us if he could sit on the couch with us. We were excited that he was the one making that decision. We got his out of the bed and managed to carry him over to the couch.
He was able to hold his head up on his own and move it around a bit which is great. He is having trouble turning it to the left, but today was progress! He sat in Jessica's lap and told us he was 'wobbly'. He sat there for a few minutes until I saw drops of blood on the floor. We didn't even notice that his port tube had disconnected from the IV line. Because his port tube had been exposed to air, the nurse had to remove it and re-access him. This made us feel pretty bad as parents, but at least he had a few moments out of the bed sitting up. Tonight as I type this, he is sleeping soundly. Every once in a while he will talk in his sleep. (He woke up a while ago apologizing to me for wrecking into a wall) :) I assume he was dreaming about his new motorcycle.
As you can see in these pictures, Noah had the big bandage taken off this morning. The blue circles on his head are where he had Fiducial markers. These markers allow the MRI to make a 3-D image and allow surgeons to have a better idea of what they will find inside the brain. Noah has two bandages covering up his incisions. He has been very good about keeping his ands off the wounds. So far they haven't bothered him to much. In the coming days, they will start to itch and become a bother to him.
We are so thankful to God for the abilities Noah has. There were (and still are) so many things to worry about going into this surgery. It is so easy to take for granted everything our bodies can do. Today, when Noah looks at me in anger and says "your stupid", I'm so thankful he can recognize me with his eyes, cognitively reason that he is mad at me - figure out a good insult and use all the faculties that make speech happen and say it with all the gusto of an angry three year old. It's a new perspective I have. Jessica and I have told him over and over how much we love him every time he has said it. Some parents would give anything to hear their child speak one more time - I don't type this lightly. Parents would trade it all for their child to walk again, see again, live again. Knowing precious families in these positions makes it difficult sometimes to publicly rejoice over Noah's abilities after all he has gone through. We are so thankful to God for everything Noah can do.We give Him praise and hope Noah's story will bring Him glory.
I encourage you in view of what you just read, to examine the great abilities God has blessed you and your loved ones with, and take some time today to bless Him for His goodness and His mercy and pray for those who struggle with the loss of abilities or the loss of loved ones, and reach out to those who need help or extra grace. Don't take for granted you children for one moment, don't let anything deprive you of loving on them and spoiling them every day, and don't ever assume that you are promised tomorrow - make the most of every opportunity you have.
That's enough preaching for tonight. :)
Please pray that Noah will be able to eat without nausea, that his pain will be managed, that he will be able to move his neck completely and when it comes time to walk - that nothing goes wrong.
Spread the word - Pray for Noah
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These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.