A Confusing time!
I do apologize for the lack of information recently. It has been 8 months since I have written. This year has gone extremely fast, and it's probably because we, as a family, have had a lot on our minds, concerning Gemma and her future.
It has been a good year, medically. Gemma has not been to hospital since September last year (since her tube was taken out). Her eating is improving every day. Up until a visit to the dietician last week, we were giving a lot of her Frebini's to her via a syringe. The dietician called her aside and told her very gently that she is a big girl now, and should help mommy and daddy by drinking herself, either with a straw or in a cup.,,,,,,,,,,,,,It has been a week today that she we have not used a syringe.
She is starting to find foods that she loves, she loves her breakfast (Jungle B-Fast), and she LOVES all things eggy. We have found that her sugars drop dramatically when she has protein, so it is a matter of watching her carefully if she eats protein, or making sure she has some carbs with it.
We found ourselves in a schooling dilemma at the beginning of the year. She starts Grade R next year. For the first few months of the year, we were frantically thinking of ways to school her. We eventually found a small school in Bloemfontein that were prepared to take her with her condition. The problem though, was that I realized I wasn't prepared to leave her just yet. The idea of not being with her and able to watch her sugars frightened me. This would also mean that our family would have to split up. I would have to move to Bloem with her, and only see Michael and Bryce over weekends. This seemed the only option, until reality set in a few weeks ago. This situation would most certainly tear our family apart. We have since then decided that home schooling is the only and best way for Gemma and for us as a family. We have picked a package called Love2Learn, and are now very excited and feel privileged to be able to be a part of her and Bryce's educational future
It was while we were thinking of schooling options that we started considering what life for Gemma would be like if we had further surgery done. There is a slight chance that if they would take out just the right amount her sugars could be normal. Then there is still the other extreme of her turning diabetic. At this stage, we are managing her sugars, as have done her whole life. Feeds are every 1.5 to 2 hours. The problem is that even with this hectic schedule, she still has random lows, and dangerous ones at that. Her sugars also go much higher than they have done in the past, but don't stay high, they tend to drop quickly. They are all over the place, and there is no medication to control this. Our theory is that even if she becomes diabetic, this condition seems to be more predictable, but it does mean that she will be on medication for the rest of her life with other complications. We went for a check up with her endocrinologist last Friday and he confirmed that by having the op, her lifestyle would be much better than what it is now. We trust his opinion, but before we rush into anything we want to get as many opinion's as possible. One advantage about having the op is that her constant risk of going into a coma will be reduced, and the pressure on us as parents to constantly avoid this will also be reduced. On the other hand, another mom whose child has had 3 pancreatectomy's is now suffering from both HI and Diabetes.
Wow, as I write this on paper, it is actually a major catch 22. Do we leave her and struggle along with what we know, or do we operate with the hope that she may be cured, but could come out with a condition worse than what we are coping with at this stage. I do believe that the answers will come to us, as they always do. The fact that we have chosen to home school gives us some more time, instead of just rushing in to surgery on an impulse.
Our amazing little girl has been through so much and copes with everything in her stride. She is a huge inspiration to everyone she meets. Her little brother is always at her side, and never moans when he has to tag along to appointments, hospitals, etc. Gemma recently went for a CT scan to see if they could see any regrowth on her pancreas. We ended up the hospital for 10 hours, most of those in a little waiting room. Bryce didn't moan or groan once, was happy with the little Lightning Mcqueen car that we bought in the hospital coffee shop, and was content to be dragged from one point to another.
While we were in Johburg, having the check up and scan etc., we took Gem, Bryce and their two cousins to see Disney on Ice. What a treat!!! Gemma loved Ariel, but said she can't be the real one, because she has two legs. I will never forget the look on Bryce's face when he saw Mater and Lightning Mcqueen come on the ice. The look was absolutely priceless.
Thank you again for taking the time to read our story, and God Bless you all as He has blessed us!!
Have an amazing day!
I do apologize for the lack of information recently. It has been 8 months since I have written. This year has gone extremely fast, and it's probably because we, as a family, have had a lot on our minds, concerning Gemma and her future.
It has been a good year, medically. Gemma has not been to hospital since September last year (since her tube was taken out). Her eating is improving every day. Up until a visit to the dietician last week, we were giving a lot of her Frebini's to her via a syringe. The dietician called her aside and told her very gently that she is a big girl now, and should help mommy and daddy by drinking herself, either with a straw or in a cup.,,,,,,,,,,,,,It has been a week today that she we have not used a syringe.
She is starting to find foods that she loves, she loves her breakfast (Jungle B-Fast), and she LOVES all things eggy. We have found that her sugars drop dramatically when she has protein, so it is a matter of watching her carefully if she eats protein, or making sure she has some carbs with it.
We found ourselves in a schooling dilemma at the beginning of the year. She starts Grade R next year. For the first few months of the year, we were frantically thinking of ways to school her. We eventually found a small school in Bloemfontein that were prepared to take her with her condition. The problem though, was that I realized I wasn't prepared to leave her just yet. The idea of not being with her and able to watch her sugars frightened me. This would also mean that our family would have to split up. I would have to move to Bloem with her, and only see Michael and Bryce over weekends. This seemed the only option, until reality set in a few weeks ago. This situation would most certainly tear our family apart. We have since then decided that home schooling is the only and best way for Gemma and for us as a family. We have picked a package called Love2Learn, and are now very excited and feel privileged to be able to be a part of her and Bryce's educational future
It was while we were thinking of schooling options that we started considering what life for Gemma would be like if we had further surgery done. There is a slight chance that if they would take out just the right amount her sugars could be normal. Then there is still the other extreme of her turning diabetic. At this stage, we are managing her sugars, as have done her whole life. Feeds are every 1.5 to 2 hours. The problem is that even with this hectic schedule, she still has random lows, and dangerous ones at that. Her sugars also go much higher than they have done in the past, but don't stay high, they tend to drop quickly. They are all over the place, and there is no medication to control this. Our theory is that even if she becomes diabetic, this condition seems to be more predictable, but it does mean that she will be on medication for the rest of her life with other complications. We went for a check up with her endocrinologist last Friday and he confirmed that by having the op, her lifestyle would be much better than what it is now. We trust his opinion, but before we rush into anything we want to get as many opinion's as possible. One advantage about having the op is that her constant risk of going into a coma will be reduced, and the pressure on us as parents to constantly avoid this will also be reduced. On the other hand, another mom whose child has had 3 pancreatectomy's is now suffering from both HI and Diabetes.
Wow, as I write this on paper, it is actually a major catch 22. Do we leave her and struggle along with what we know, or do we operate with the hope that she may be cured, but could come out with a condition worse than what we are coping with at this stage. I do believe that the answers will come to us, as they always do. The fact that we have chosen to home school gives us some more time, instead of just rushing in to surgery on an impulse.
Our amazing little girl has been through so much and copes with everything in her stride. She is a huge inspiration to everyone she meets. Her little brother is always at her side, and never moans when he has to tag along to appointments, hospitals, etc. Gemma recently went for a CT scan to see if they could see any regrowth on her pancreas. We ended up the hospital for 10 hours, most of those in a little waiting room. Bryce didn't moan or groan once, was happy with the little Lightning Mcqueen car that we bought in the hospital coffee shop, and was content to be dragged from one point to another.
While we were in Johburg, having the check up and scan etc., we took Gem, Bryce and their two cousins to see Disney on Ice. What a treat!!! Gemma loved Ariel, but said she can't be the real one, because she has two legs. I will never forget the look on Bryce's face when he saw Mater and Lightning Mcqueen come on the ice. The look was absolutely priceless.
Thank you again for taking the time to read our story, and God Bless you all as He has blessed us!!
Have an amazing day!