Journal entry by Carrilynn Williams —
Good morning Friends!
As summer is wrapping up and the rush of Fall activities begins, I thought it may be a good time to update on our Josiah.
Nothing too exciting to add, most things are the same as our last update in June. His Team is slowly trying to wean off a few things and see how his body tolerates. Engraftment is still basically at the same level as it's been since last October (it's tested monthly now). We are beginning to toss around the idea of approaching his donor again about another Boost, possibly mid-Fall, if things remain as they are.
His biggest enemy at this time is the UTIs. I believe we are on the 8th infection since Feb. This week we have had two ER visits. He was hospitalized early in the week for a broken G/J tube, and Monday had a procedure to replace that, as well as another Central Line, since we're not as close to moving along as we'd hoped when we chose not to replace the last one due to skin breakdown back in June. This time we're here for another fever - definite UTI, potential Central Line infection. If UTI, hopefully our stay will be short, if Central Line, then it's usually 5 day minimum.
This week has been rough on several fronts, in addition to Josiah, Zarayah has been having a lot of flare ups of her autoimmune disorders, and also dislocated her shoulder, which has been very painful. Waiting on MRI Friday to see if surgery is required. We have also been going through a difficult time with one of our older children, and there has been a lot of damage done to relationships - we are weary.
Janayah has Nationals for Wheelchair Lacrosse in NY this week, and Josiah was really looking forward to going, and to being able to see Niagara Falls - now it will be Tom taking Janayah and Nehemiah, while the rest stay home for soccer games and/or hospital stays.
We appreciate prayers for emotional/physical/spiritual strength and wisdom for each one of us, for understanding and love between family members, for safety and alertness for whichever parent is driving to/from all of the medical appointments and travel sports (at least one out of town game every week from last week through November).
Specifically for Josiah's health to move beyond this plateau, for Zarayah's diseases to slow their progression, and for our precious child who is struggling to slow down and move forward in wisdom, truth and love. For all of our amazing and resilient children who have weathered so many hard things over the past 5 years, that they would allow these challenges to refine and grow them, and that they would search for peace and joy in the only One Who can give it.
With deepest and most sincere gratitude,
❤️
As summer is wrapping up and the rush of Fall activities begins, I thought it may be a good time to update on our Josiah.
Nothing too exciting to add, most things are the same as our last update in June. His Team is slowly trying to wean off a few things and see how his body tolerates. Engraftment is still basically at the same level as it's been since last October (it's tested monthly now). We are beginning to toss around the idea of approaching his donor again about another Boost, possibly mid-Fall, if things remain as they are.
His biggest enemy at this time is the UTIs. I believe we are on the 8th infection since Feb. This week we have had two ER visits. He was hospitalized early in the week for a broken G/J tube, and Monday had a procedure to replace that, as well as another Central Line, since we're not as close to moving along as we'd hoped when we chose not to replace the last one due to skin breakdown back in June. This time we're here for another fever - definite UTI, potential Central Line infection. If UTI, hopefully our stay will be short, if Central Line, then it's usually 5 day minimum.
This week has been rough on several fronts, in addition to Josiah, Zarayah has been having a lot of flare ups of her autoimmune disorders, and also dislocated her shoulder, which has been very painful. Waiting on MRI Friday to see if surgery is required. We have also been going through a difficult time with one of our older children, and there has been a lot of damage done to relationships - we are weary.
Janayah has Nationals for Wheelchair Lacrosse in NY this week, and Josiah was really looking forward to going, and to being able to see Niagara Falls - now it will be Tom taking Janayah and Nehemiah, while the rest stay home for soccer games and/or hospital stays.
We appreciate prayers for emotional/physical/spiritual strength and wisdom for each one of us, for understanding and love between family members, for safety and alertness for whichever parent is driving to/from all of the medical appointments and travel sports (at least one out of town game every week from last week through November).
Specifically for Josiah's health to move beyond this plateau, for Zarayah's diseases to slow their progression, and for our precious child who is struggling to slow down and move forward in wisdom, truth and love. For all of our amazing and resilient children who have weathered so many hard things over the past 5 years, that they would allow these challenges to refine and grow them, and that they would search for peace and joy in the only One Who can give it.
With deepest and most sincere gratitude,
❤️
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