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Posted 2019-12-10T03:06:51Z

2019 Christmas Letter

Merry Christmas and thank you for coming to our blog site. When I did the first draft of this Christmas letter it printed out to over 20 pages!!! I realized I had summarized all of our blog entries for the 2019 year plus adding in items that weren’t in the blog. Oh my! It occurred to me that if you were interested in the details that you could simply go back and look at the blog entries for yourself. I hope you will take the time to grab a warm cup of cocoa and spend a little while in our story and also see how God has been with us through it all. So then my dilemma became what should be included in this year’s Christmas Letter? I hope you will enjoy a peek into the less well - known. For an update and details on my health battles, I will give you a summary but really hope you will go back and read some of the entries from the last year.[...]

Posted 2019-08-30T01:20:01Z

Gastrostomy Tube and other Updates

Hello to all of our dear friends and family,

Today seemed like a good day to bring you an update. We had a semi-crisis when my gastrostomy tube dislodged and fell out of my stomach during the night. With a direct opening from the skin into the stomach we were concerned about the risk for infection. Additionally, the doctors had said if it came out completely and I couldn’t slide the tube back down the tract, we should go to the ER. The problem is that the tract begins closing internally within hours. So, 4am saw us departing for the hospital. We were quickly triaged and put in a room. The doctor said the procedure was too complicated for the ER and that it needed to be done by the Intervention Radiologist Team. The procedure was scheduled for 11am. Oh my goodness! Because of the “rush” to preserve the tract, it was decided to get immediately underway without the use of sleep or pain meds. In all honesty, it was excruciatingly painful as parts of the tract had already made a soft closure and the doctor had to push through them to open the way. Examination of the old tube showed that the internal balloon that holds the tube in place had burst. Ugh! After 30 minutes of pushing, pulling, sweating, and biting my tongue, we were finally done with the procedure. The doctor at one point when the pain was  so bad suggested we let the current tract close naturally over a few weeks and then re-do the complete new surgery as if it was the first time. He saw the tears well up in my eyes with the thought of starting from scratch again. He said he would try one more time and that now would be a good time to pray. The tube, with a firm push, popped through the closed part of the tract and the x-ray machine showed it was in the proper place. More tears from me - tears of thankfulness. [...]

Posted 2019-06-28T13:26:42Z

Anticipation

Hello from New York! The much anticipated days on the calendar to get extensive evaluations has finally arrived. We had uneventful flights to get us to New York and Steve demonstrated that he could drive like a native New Yorker and was quick to zoom in and out and proved it could be done without using the horn! Haha![...]

Posted 2019-06-02T00:55:17Z

Safely home...

I’d hoped Lee might be posting this round but the hospital discharge process took a bit longer than expected this afternoon and the ride home was pretty painful after all of her IV medicines have worn off, so she’s tucked safely in to bed to get some rest.  We’d appreciate your continued prayers for successfully managing the pain.  Lee is looking forward to giving you a personal update in the next day or two, so stay tuned!  [...]

Posted 2019-06-01T00:21:27Z

Success!

The tube-placement procedure went according to plan and Lee is settled in a room for the night!  Her surgical medications are wearing off so she’s got a fair amount of discomfort but the hospitalist who will be overseeing her care through the night was just in and is working with Lee’s nurse to get her pain under control.  She is anxious to share personally with you so I’ll hold off on any further details for now except to say thank you once again for checking in on us and for your continued prayers and support.[...]

Posted 2019-05-31T21:24:48Z

First Update

Just wanted to let everyone know that Lee’s procedure got underway about an hour ago (1:15 PST)  and was expected to take a couple of hours to complete.  Lee will have much to share about all the great experiences we had with the nursing and physician staff in pre-op, so I won’t steal that opportunity from her but suffice it to say that the impact of your prayers on her behalf were evident and she is in excellent hands for the procedure!  She will be staying overnight in the hospital just to make certain everything is going according to plan so I will update once she makes it to a room and gets settled.  [...]

Posted 2019-05-31T17:06:36Z

Surgery Today

We just wanted to put the word out for prayer today. I am having surgery in a couple of hours to place a gastrostomy tube through my abdomen and into my stomach in hopes of being able to remove the nasogastric tube that has been running up my nose, down my throat, and into my stomach for almost 3 months. “Nose hoses” (as only my beloved husband and Fire Chief would name it!) aren’t designed to stay in place a long time and mine is overdue to come out. It has been allowing my stomach and intestines to “vent” which has greatly decreased the painful abdominal distention from trapped gasses being caused by Small Intestinal Bacterial Overgrowth (SIBO). My Ehlers-Danlos disease allows the Connective tissue of the abdomen to stretch to unbelievable sizes. We are hoping the gastrostomy tube will provide the same relief and be a better option than my current nose hose. We are praying this surgery will go smoothly and that wound healing will be optimal. Steve will update here on Post Hope as the day progresses.[...]

Posted 2019-05-12T04:53:13Z

Mayo Marathon Summary

Hello from a finally “rested up and coherent” Mayo Marathoner. As I mentioned in my last post, we finished 18 appointments, 1 phone consultation, and an ER visit that led to hospitalization. Only by God’s grace and strength was this accomplished in 7 days. In a quick summary, in contrast to last year’s 6 week stay where we seemed to learn challenging news at every turn, this trip contained a lot of good news![...]