Verse of the Day

Tuesday, June 16, 2015

Trying to Stay Awake to Update!

A lot has happened in the 3 months since I've posted, but trying to stay awake to update is a challenge today! Sleep has been a real challenge again.

First, and perhaps most exciting for me is that I have officially lost all the steroid weight.. plus a few extra! (I so need to update my photo!) It took decreasing the exercise so that I could eat less. For some reason, my hypoglycemia has gotten considerable worse since the bleed. I simply could not figure out a way to balance more activity and reduce calories. I was checking my glucose levels before, during, and after exercise--- and yet I still always ended up "bonking."So, I figured I would take one thing at a time. I would like to lose a couple more pounds, and then it's time to problem solve with my endocrinologist about glucose storage issues. I have incredible compassion for any of you who struggle with blood sugar issues on regular basis. It is frustrating and often times confusing to find balance.

Second, I have gone through bilateral carpal tunnel release surgery. I still have the wrap on my right wrist, but the stitches come out in a week. The procedure was relatively easy, and I am very thankful to have had an excellent hand surgeon (Dr. Thull). Hopefully, the surgery will allow me to regain some fine motor skills. I've have had carpal tunnel for years, but it was not until after the bleed that the symptoms got much more difficult to manage. After dropping a few too many dishes, I reluctantly decided to go ahead with surgery. I am already glad I did. Almost immediately following surgery, my hand cramping stopped. Pretty amazing and encouraging!

Third, I am now taking a couple of new medications and have started vision therapy. The meds seem to be helping with anxiety, sleep, and foot cramping. The vision therapy helps me feel like I'm at least trying to improve my deficits. I do see my neurologist (as do my other angioma kids) this week and expect to have to increase one of the meds. Initially, I slept really well; now, I am back to waking up multiple times a night. But overall, the wakings are down about 50%. I am confident the regime just needs a little "tweaking."

The last major update is that our youngest is now scheduled for limb lengthening surgery next month. He will be in the hospital for 5 days, and then he will require 3 days physical therapy per week. Our little guy is having a Taylor Spatial Frame installed on his left leg. (Our son must have endured some sort of horrible accident as a toddler in Ethiopia: He has no knee cap, no ligaments, and has a very stunted femur. He will require total knee replacement as an adult.) S. will be in the frame at least four months. He will also need to have his achilles tendon cut because it is severely contracted--- so add a cast the the photo below. (This is actually one of the least gory photos I could find; this is major surgery and recovery). The good news is that the Taylor Spatial Frame can cause a bone to grow 1mm per day! That's incredible, I think!

Initially, our Superman will be in a wheelchair, and then, hopefully a walker of some sort. The surgery will need to be repeated when he is a teenager.

So, that is where the prayers are requested. This is major, painful surgery for our little guy. He is very frightened... and I guess, so am I. He will only have 4 weeks after surgery to recover--- and then he  must start school. Please pray for his physician (Mohan Belthur, M.D), for the surgical staff, for our son, and for my own anxiety.

The rest of the family is "hanging in there." It is a very stressful time (again) in our family. Two of our teenagers are still dealing with brain-related issues (more scans upcoming and medication to manage). Depression has taken a big swipe at several of us. My husband is dealing with his own medical issues, pain, and burden of paying for unending (and soon to be growing) medical bills. A few of our adopted kiddos are acting out--- reacting to the stress they sense. Life is just too much sometimes. All I can say is thank the Lord that this world is not all there is! He is our only hope, and without clinging to Him I simply couldn't do this. I just couldn't.

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