We've had an assortment of appointments around here lately, so I figured it was time for an update...
Julia had her check up with Dr. Fortunato(GI). He continues to be pleased with her progress. Her cecostomy site looks good. We are burning the granulation tissue at home, the meds regimen we are using works and has her colon in a healthy pattern, her urinary issues have not returned, and she has emotionally adapted to life with a c-tube. Check, check, check, check.
So where do we go from here? His ideal is to see the tube removed when she hits the teen years. So how does that happen? Well, we are still praying for healing. As he has told us in the past 70% of these cases show regained normal colon function and we are still hoping to be one of those. He is encouraged that her past surgery showed visually healthy colon tissue. Then he said we need to start charting, experimenting, and tweaking. And by "we" he means me. He wants me to come up with these plans and charts, test and record the data, and report back to him. I thought he was the specialist here? He said at this point she is obviously completely laxative dependent and the goal is to reverse that. Since we know her best and observe her daily regimens, we are best suited to make changes. So let the tweaking begin. We'll see how it goes. He wants us to take baby steps and report back regularly. Time to dust off my "momcologist" degree again.
The kids continue to make great progress at...
They are both in a really good place. It is so refreshing to see them act like typical children and not traumatized ones. We have seen a lot fewer emotional outbursts and much more resiliency, especially with Julia. The kids' favorite activity there is playing with the huge stuffed animals in the waiting area...
Julia calls this one "Bagel" the beagle...
Still so thankful and feeling incredibly blessed that God has put this resource and these people in our lives. It has made a world of difference for all of us.
In recent weeks though Carter has developed an aversion to all things medical. After a series of appts for him in past weeks, I brought it up with Kate. After talking to Carter it seems he has taken all of his stress from dealing with Julia's cancer and the medical situations of his friends and connected to his own routine visits. As a well-check and several shots and labs loomed in his near future, we were hoping he would find a way to move past his anxieties.
I am happy to say that lots of talking and using relaxation techniques (like you see above) resulted in a very smooth and calm appointment. The only bump in the road was that he blatantly failed his hearing test in his right ear. It was so bad that I could actually hear the beeps coming from the headset all the way across the room and he still couldn't hear it. Even with the nurse blatantly telling him he should hear something- he couldn't. He has had trouble with this ear the past two months and we actually went to the ENT just a few weeks ago. He said it did need to be cleaned out a little but wasn't overly concerned, so now back we go to investigate further. Poor Carter regularly asks, "Mom, am I going to start hearing in this ear again soon?" That's the plan, we hope.
And my back situation continues about the same. I have been in PT and taking meds for six months now for a disc tear in my lower spine. Some days are better than others. I have to be very careful to sit in hard chairs with my feet flat on the floor, not to lift anything heavy, not to twist, not to bend past 90 degrees- so hard! Daily life really gets in the way. It is self-correcting in that when I am not good to my back, it is not good to me. We are still praying that the disc heals and normal life becomes more possible. After many months of doing well with my dysautonomia, I have been having trouble again with low blood pressure- a lot of 90/60s. Thankfully, not feeling too many ill effects from it. Trying hard to stay in the double digits or at least close. Eating lots of salt and drinking as much water as I can stand.
We continue with Julia's granulation tissue burns at home. We are still doing them every two weeks with light sedation. Tomorrow night we will do the next one. Please pray for safety during the process, that her blood pressure remains stable, peace for her fear and anxieties, success in burning the tissue, minimal pain afterward, and peaceful sleep.
Her next Scan Day and oncology physical is April 2nd...
Julia had her check up with Dr. Fortunato(GI). He continues to be pleased with her progress. Her cecostomy site looks good. We are burning the granulation tissue at home, the meds regimen we are using works and has her colon in a healthy pattern, her urinary issues have not returned, and she has emotionally adapted to life with a c-tube. Check, check, check, check.
In recent weeks though Carter has developed an aversion to all things medical. After a series of appts for him in past weeks, I brought it up with Kate. After talking to Carter it seems he has taken all of his stress from dealing with Julia's cancer and the medical situations of his friends and connected to his own routine visits. As a well-check and several shots and labs loomed in his near future, we were hoping he would find a way to move past his anxieties.
And my back situation continues about the same. I have been in PT and taking meds for six months now for a disc tear in my lower spine. Some days are better than others. I have to be very careful to sit in hard chairs with my feet flat on the floor, not to lift anything heavy, not to twist, not to bend past 90 degrees- so hard! Daily life really gets in the way. It is self-correcting in that when I am not good to my back, it is not good to me. We are still praying that the disc heals and normal life becomes more possible. After many months of doing well with my dysautonomia, I have been having trouble again with low blood pressure- a lot of 90/60s. Thankfully, not feeling too many ill effects from it. Trying hard to stay in the double digits or at least close. Eating lots of salt and drinking as much water as I can stand.
We continue with Julia's granulation tissue burns at home. We are still doing them every two weeks with light sedation. Tomorrow night we will do the next one. Please pray for safety during the process, that her blood pressure remains stable, peace for her fear and anxieties, success in burning the tissue, minimal pain afterward, and peaceful sleep.
Her next Scan Day and oncology physical is April 2nd...
1 comment:
Soooooooooooooo much you go through, you do. So much it brings out the Yoda. But you do it with class!
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