Updates! New news
Updates about our family
We have good news to report! For the first time in five years, Jake is out and about. He was hospitalized in January with what they thought as a small bowel obstruction. He had been so sick the past year. He was spending the night tube feeding and the mornings he was vomiting, in horrible pain and non stop diarrhea. Nausua was so bad that nothing was controlling it. Finally, he was in such bad shape we took him to the ER at Mission and he was admitted. Over the next week, he would not be able to eat or drink. He was in the worst pain I have ever seen any of my children in. Much worse than the fecal transplant or his NG tube in and out his nose for a year. Worse than after his tube was put in his stomach. It is awful to watch your child suffer and beg to be released so he could go home and die. He was praying for God to take him. In what seems to be our life with our kids and kids with rare diseases, we fought and advocated for his care and tests to be run. We were blessed with a hospitalized that cared and though GI wasn't as helpful, the nutritionist was wonderful and believed Jake was suffering from Chron's disease. We pushed until they did surgery to find indeed his small intestine was very inflammed. Since our kids have Chemotasis, it is often difficult to see inflammation because the neutrophills that are even present, which our kids have low ANC but this adds to problems. They changed his formula to one for people with Chron's disease and in one day, he went from not being able to hold anything down and losing twenty-five pounds to being able to tolerate his tube feeding! It would take months but he regained his weight and his life has changed! He is off most his medications other than his enzmyes which is from his pancreatic insuffiency.
He still needs a lot of anti-diarrhea medication which we are concered about. They want to do a camera swollow test but we would like to have Cincinnati Children's hospital where they have their Bone Marrow Failure doctor, Dr. Myers. She is well known and is trying to get the GI doctor to do this test on Jake in spite of being older. Children's hospitals do not like to take young adults but this is a pedatric disease and because most do not live to be older than thirty, often only children's hematology/oncologist are able to take care of them. Most have numerous issues as we do. Jake has GI issues, Grace has Multicystic Kidney Disease( one left kidney) and other issues. Samuel has major teeth and gum issues. They all have had GI isssues but not to the extent that Jake has. Many kids with SDS have far worse medical issues than we do. We are blessed that we don't have what we see many children deal with daily. Still, having three with Primary Immune Disease isn't easy. Multiple health problems are common with SDS. Our kids, have done well in spite of all we have endured. We seem to have more infection issues than most. Their marrow isn't good and low cellularity is a concern.
Grace had her tonsils out this past June and we are so pleased she did great. This was the first time in her life she was healthy enough to endure surgery. She is the strongest I have seen her. Over the past year in her first year of college, she has endured non stop streph throat and sinus infections. This was a concern as we have been fairly isolated due to the domino effect of one getting sick, we all get sick. When Jake and I both got C-Diff which was resistant to treatment and required a fecal transplant, we were so sick, we couldn't go anywhere. This was so hard on Grace and Sameul because I wasn't able to take them swimming, biking or all the things we always have done. We were unable to attend church or be with other kids. Grace was very sick when she was younger and we were limited to the house and Jake was the one who had to stay home. It's difficult on a family. Grace has always wanted to go to University since she was so small. She would sit in the car seat and tell me she wanted to help kids get well. She would say she was going to be a doctor who healed kids. She has grown into a beautiful young women who is bright and strong. She was the first diagnosed or i should say, misdiagnosed and was by far very close to death as a young child. I would say that Jesus heard our prayers and touched Grace and she is going to do something great with her life. I look forward to seeing her soar. We are hopeful her tonsils will help keep infections down and she plans to get a part time job and attend full time school. She is doing extremly well and we are so happy to see her enjoying life.
Samuel, is about to start high school and we are trying a new homeschool program so we are excited and nervous. We are looking forward to a new chapter in our lives. He is doing so well and is a kind, sweet very queit young man who enjoys fishing, shooting and swimming. He loves video games and will be very busy with all his high school work. He is taking French and in 4-H shooting club. He hopes to join the youth group at church and the local homeschool group. These are things we haven't been able to do in a long time. He has had trouble with his teeth and gums. He has a fistula which is causing him some infections and we are seeking care. This is dangerous since it could go into his blood stream but we have been fortunate to have caught this in time. He has really been pretty healthy and we are so glad. His marrow has been going down though and we are watchig him close. We will see how we all do as we enter the world again. He has his dog, Skye and loves him so much. He enjoys science and loves anything do do with the airforce. We look forward to these precouis years we have with all three of our children but Sameul is in his last years of home-schooling and we are so excited to see what he will do. Paradigm, thank you so much for your kind gift of school for Samuel's ninth grade year. We look forward to using your products in combination with the many other supplements we use.
My own health is much better too and in part, when my babies are doing well, I am doing well. When they are hurting or sick, I too feel their pain. There is no doubt that my own immune system isn't good and I need to address my own health but when one gets a chance to just be heathy and not forced to be in the doctors or hospitals, one just wants to be happy and normal!
Chris is doing well and is enjoying working from home. He is staying busy and we are grateful for this oppurtunity and pray that it continues. We both enjoy fly fishing and would love to take up hiking.
We are so hopeful for our future right now. We know how precouis life is and how fast it can all change. The blessing we have had are that all three of our children are here and doing things that normal kids should be doing. We pray for all the families we know who are not doing well and struggle for each day. For all the mothers who are in hospital rooms right now with their babies and for all the families to stay strong. We ask that Jesus continue to look upon our family and show mercy and grace to each of all of us. Thank you so much for taking the time to read and pray for our family. To learn about a disease which affects so many children but is so rare, most doctors have never heard of it.