Just had to do a quick post to let you know that the prayers of many have been answered so clearly and precisely for our dear daughter H.
Because of the blurry vision she has been having for the last few weeks due to being diabetic, it was questionable if H would be able to take the PSAT at her high school this past Wednesday. Well, the answer was YES! She was able to take it! Since last Sunday her vision improved rapidly and by Wednesday, she said she was almost 100% blur-free! She was able to take the test and felt she did pretty well on it. They even accomodated her in allowing her to have her mid-morning snack so her sugar levels wouldn't drop too low. (Remember, they had said they wouldn't make any accomodations? ) So, give thanks to the Lord for his grace and mercy and for answering your prayers in this way!
This week she is hitting a new stride and her blood glucose levels are much more consistent and in the "good"range. We're so thankful. H is noticing that she feels so much more like herself again and is enjoying feeling "normal" after many, many months.
Thank you again for your prayers for our dear girl and for us as her parents. As I wrote in my last post, every day gets a little bit easier.
Friday, October 17, 2008
Saturday, October 11, 2008
Progress
Well, we made it through an entire week 'on our own'. I'll admit that at the beginning of this week, it seemed very daunting. We were going full steam ahead into the unknown, and every minute of every day had its share of fear attached. In fact, that may have been one of the biggest battles fought, and won this week--the battle over fear.
It is true what they say that 'knowledge is power'. We found as we became more knowledgeable about diabetes and our daughter's health that we became less fearful and more empowered. As we understood how to determine and measure the insulin she would need before each meal, and what her "ratios" were, we became more comfortable with dialing up her right does on her insulin pens. In our daily pre-determined dinner time calls with her endocrinologist, we were able to discuss what was going on, ask questions about "correction units" and give him daily "numbers" from our log sheet where we record every meal, every blood glucose reading (which included a 2 AM reading every day), every carbohydrate ingested, every dose of insulin given.
After we met with her diabetes education nurse, H felt even more comfortable knowing that all the emotions, frustrations and anger she is experiencing are very normal and to be expected, and that in time, these will fade and she will have adapted to her new lifestyle. Perhaps one of the most freeing things this week for H was the understanding that having diabetes doesn't mean she can't eat anything with sugar in it, it just means she has to be aware of how much sugar is in a food item and make the choice to eat it or not, and then "dose" accordingly if she really wants to ingest it. This helped alleviate a lot of concern regarding Thanksgiving. She is comforted in knowing that she will still be able to enjoy some of her favorite foods and desserts.
One of the greatest barriers we needed to hurdle this week was H going back to school. We were asked to keep her home on Monday, but Tuesday morning we had a meeting with the school district nurse, as well as the high school's nurse to go over things. They were both great and so helpful. There are 4 other diabetics at H's high school, so the health office is well versed in how to do these things, which really gives a great level of comfort. H was also very comfortable with everything. At lunch time each day, she goes to the health office to check her glucose level and administer her pre-lunch insulin. She is glad to know that there is a supportive staff at the school who can help her if she has any questions or concerns, and as parents we are thankful knowing there are caring adults there watching over our child, especially if there is an emergency of some kind. We were also reassured that there were several staff persons on-site that can administer a "Glucagon" shot should H suddenly pass out from low blood sugar. This actually is a comfort in that there are only a few minutes to administer this shot before seizures or a coma sets in. (See, I can write about it so matter-of-fact! I've come a long way in a week!) H had nothing but good reports from school. In fact, one of her teachers--a man that had worked with my husband years ago--has type I diabetes and has really come along side H to reassure her. Even her friends are asking a lot of questions, have gone to the health office with her, and will be going to one of her diabetes education sessions to learn more!
One of the really hard side affects of this disease that H has to deal with right now is blurred vision. This is the most significant physical issue right now. And there isn't anything that can be done about it, other than to wait. Many doctors and nurses have all explained it well and similarly. H's body has been living with high blood sugar for months now. In effect, her body has been trying to push syrup through her veins. Her body adjusted to this stress by working over time pumping and compensating in other ways. Now, as she is getting regulated and her blood sugar levels are coming down and getting into a much more "normal" range, her body is again having to readjust. It is also trying to get all the "syrup" out of her veins and is getting replaced with healthy thinner blood, but this takes time. Since the veins in her eyes are some of the tiniest there are, this "leeching" takes much longer, and the change in pressure affects the eyes by causing blurry vision. It isn't a permanent condition, but it literally can take a month or two for her eyes to adjust. This blurry vision affects not just reading, but distance as well, and it isn't predictable. It is changing all the time, all at once or at different times. It is very frustrating. She had an eye appointment with the Opthamologist yesterday who conducted a "new diabetes diagnosis eye exam" and assured us that H's eyes are very healthy and have not suffered any kind of damage from the diabetes. He again told her that patience is what is needed most right now. We are working closely with H's school counselor and teachers regarding this as she hasn't been able to see well in class, let alone do make-up homework and daily work that is required. She also is scheduled to take the PSAT next Wednesday, but this is not looking really possible at this point in time. H says she wants to try and take it, but she won't really know until the day of. And in true form, the State is unwilling to make adjustments and will not allow any accommodations for H in that they need '7 weeks notice for emergency situations that arise.' This test is given once a year. So, the only bad part of not taking the test is that she may not be able to apply for some college scholarships. She will still be able to take the SAT next year.
All in all, we're doing pretty well. This is the first morning that H was given permission from the doctor to sleep in (with strict guidelines). A major mile stone! And a right of passage--especially for a teenager! She is being given more independent control over her treatment which is wonderful and, as the doctor told us, a really great indication that H is really being conscientious and that we're much further ahead at this point than a lot of families. That was reassuring as well. We'll take their word for it as it is all so new to us.
Thank you for all your prayers and notes! It really has made such a difference this week as we continue on this path of the unknown! Please continue praying. We know we need that support and help!
It is true what they say that 'knowledge is power'. We found as we became more knowledgeable about diabetes and our daughter's health that we became less fearful and more empowered. As we understood how to determine and measure the insulin she would need before each meal, and what her "ratios" were, we became more comfortable with dialing up her right does on her insulin pens. In our daily pre-determined dinner time calls with her endocrinologist, we were able to discuss what was going on, ask questions about "correction units" and give him daily "numbers" from our log sheet where we record every meal, every blood glucose reading (which included a 2 AM reading every day), every carbohydrate ingested, every dose of insulin given.
After we met with her diabetes education nurse, H felt even more comfortable knowing that all the emotions, frustrations and anger she is experiencing are very normal and to be expected, and that in time, these will fade and she will have adapted to her new lifestyle. Perhaps one of the most freeing things this week for H was the understanding that having diabetes doesn't mean she can't eat anything with sugar in it, it just means she has to be aware of how much sugar is in a food item and make the choice to eat it or not, and then "dose" accordingly if she really wants to ingest it. This helped alleviate a lot of concern regarding Thanksgiving. She is comforted in knowing that she will still be able to enjoy some of her favorite foods and desserts.
One of the greatest barriers we needed to hurdle this week was H going back to school. We were asked to keep her home on Monday, but Tuesday morning we had a meeting with the school district nurse, as well as the high school's nurse to go over things. They were both great and so helpful. There are 4 other diabetics at H's high school, so the health office is well versed in how to do these things, which really gives a great level of comfort. H was also very comfortable with everything. At lunch time each day, she goes to the health office to check her glucose level and administer her pre-lunch insulin. She is glad to know that there is a supportive staff at the school who can help her if she has any questions or concerns, and as parents we are thankful knowing there are caring adults there watching over our child, especially if there is an emergency of some kind. We were also reassured that there were several staff persons on-site that can administer a "Glucagon" shot should H suddenly pass out from low blood sugar. This actually is a comfort in that there are only a few minutes to administer this shot before seizures or a coma sets in. (See, I can write about it so matter-of-fact! I've come a long way in a week!) H had nothing but good reports from school. In fact, one of her teachers--a man that had worked with my husband years ago--has type I diabetes and has really come along side H to reassure her. Even her friends are asking a lot of questions, have gone to the health office with her, and will be going to one of her diabetes education sessions to learn more!
One of the really hard side affects of this disease that H has to deal with right now is blurred vision. This is the most significant physical issue right now. And there isn't anything that can be done about it, other than to wait. Many doctors and nurses have all explained it well and similarly. H's body has been living with high blood sugar for months now. In effect, her body has been trying to push syrup through her veins. Her body adjusted to this stress by working over time pumping and compensating in other ways. Now, as she is getting regulated and her blood sugar levels are coming down and getting into a much more "normal" range, her body is again having to readjust. It is also trying to get all the "syrup" out of her veins and is getting replaced with healthy thinner blood, but this takes time. Since the veins in her eyes are some of the tiniest there are, this "leeching" takes much longer, and the change in pressure affects the eyes by causing blurry vision. It isn't a permanent condition, but it literally can take a month or two for her eyes to adjust. This blurry vision affects not just reading, but distance as well, and it isn't predictable. It is changing all the time, all at once or at different times. It is very frustrating. She had an eye appointment with the Opthamologist yesterday who conducted a "new diabetes diagnosis eye exam" and assured us that H's eyes are very healthy and have not suffered any kind of damage from the diabetes. He again told her that patience is what is needed most right now. We are working closely with H's school counselor and teachers regarding this as she hasn't been able to see well in class, let alone do make-up homework and daily work that is required. She also is scheduled to take the PSAT next Wednesday, but this is not looking really possible at this point in time. H says she wants to try and take it, but she won't really know until the day of. And in true form, the State is unwilling to make adjustments and will not allow any accommodations for H in that they need '7 weeks notice for emergency situations that arise.' This test is given once a year. So, the only bad part of not taking the test is that she may not be able to apply for some college scholarships. She will still be able to take the SAT next year.
All in all, we're doing pretty well. This is the first morning that H was given permission from the doctor to sleep in (with strict guidelines). A major mile stone! And a right of passage--especially for a teenager! She is being given more independent control over her treatment which is wonderful and, as the doctor told us, a really great indication that H is really being conscientious and that we're much further ahead at this point than a lot of families. That was reassuring as well. We'll take their word for it as it is all so new to us.
Thank you for all your prayers and notes! It really has made such a difference this week as we continue on this path of the unknown! Please continue praying. We know we need that support and help!
Sunday, October 05, 2008
Dependent
This past week was one that I won't easily forget. It is true what they say, life can change in a an instant, and once again our family felt the impact of that sentiment.
For the past month, our daughter H has had some changes in her health; nothing that was obviously wrong but subtle changes and some weird "symptoms" that began around July and intensified once school began. Knowing that things weren't "right", I made a doctor's appointment for her this past Wednesday to see if they could connect the dots and let us know what was going on with her.
The night prior to her appointment, I had a very restless, fitful night of sleep. My mind was pouring over things and I felt a "nudge". I got up and went to the "symptom checker" on WebMD on the Internet. I know one should not put heavy weight on these kinds of things, and I think it is possible to self diagnose, convinced that one has the worst and most remote illness possible, but this time it was different. Again, the small voice said to me, "check diabetes symptoms." H had been really thirsty since summer, but we figured it was just because it was hot, she was active, and she had more of a need to stay hydrated. She also had been reading a lot and had complained of blurred vision, but again, I figured she just needed reading glasses like I did at an early age. I remembered something that was planted in my brain years ago, that increased thirst could be a sign of diabetes, as well as vision changes. So I checked her symptoms.
In those wee morning hours, I went through the list of symptoms for diabetes, and H had begun demonstrating a good portion of them. Returning to bed around 4:30 that morning, my husband turned over and asked if I was okay, and I blurted out, "I think H has diabetes." Needless to say, neither of us slept well the next few hours before we got up for our day of work. I had talked with H about what I had learned. In a very matter of fact way, she said that made sense, but of course, understandably, was hoping it wasn't' true.
The next day I was able to get her in to see the doctor. The nurse did a quick urine test and a finger poke, and after a very brief time, the doctor came in and announced, "yes, it is diabetes, Type 1." Next, she informed us that she was going to send us directly over to the Pediatric Endocrinologist's office at St. V's Hospital, and that he would get her admitted to the hospital for a minimum stay of 2 nights/3 days. My head was spinning, tears were rolling down H's cheeks as well as mine, and I couldn't get off the announcement of Type I diabetes; and now we're being told H is getting admitted directly into the hospital?
The doctor went on to explain the difference between Type 1 and Type 2 diabetes; Type 1 is when a person's pancreas stops making insulin altogether and the individual becomes insulin-dependent through injections for the rest of their life. Type 2 is often seen in older people and has more to do with lifestyle, eating habits, weight, and so forth, and often is not insulin dependent. We were consoled (?) with the fact that Type 1 can come on suddenly like this, even in families such as ours where there isn't a history of diabetes. There may be some latent gene combination that my husband and I gave to H that somehow triggered this, but in 75% of these cases, there is no family history or anything they can connect the onset to. It literally "just happens."
Within 3 hours of walking into the pediatrician's office to see what these symptoms meant, we found ourselves sitting in H's hospital room consulting with nurses and the endocrinologist, discussing why she was connected to an IV, what her first doses of insulin would be, and talk about the "diabetes teaching" we would be given over the next several days. I won't kid you--I don't know that any of us--my husband, H, or myself--fully received all that we were being told. We were in a fog of shock.
Over the next 2 nights and 3 days, we indeed did received lots of instruction. It became clearer why they have this hospital stay; not only to give the immediate intervention and attention the patient needs, but also to inform, educate and have a safe environment for families to be introduced to the world of diabetes, which now becomes their new reality. By the second day, H, my husband and myself were giving the new little patient her insulin shots. We had been quickly educated in technique, measurement, and administration of these shots. For me, the fear factor was the biggest obstacle I had to get over; I was thankful that I didn't have a needle phobia, but the thought of having to give my child shots was not that appealing, worried that they would inflict pain on her. H did great and after seeing her give herself the first injection, it alleviated a lot of fears associated with the "unknown" for me. She assured me that it really didn't hurt her. In fact, the finger pokes she has to do each time she checks her blood sugar level are much more uncomfortable than the actual insulin shots.
We came home late Friday afternoon, heavy with the reality that a new journey was ahead of us, and one that would become part of everyday life. Again we all fought back tears (and lost the battle) as we walked into our home and the heaviness of it all covered us. It hit us hard that we couldn't just leave this at the hospital, but now had to embrace it and bring it home with us, aware that we have to re-program our minds, acknowledging that this isn't an illness that will go away with time, but rather it is a new way of living, and one that we will have to work hard at adjusting to.
This morning, Sunday, we find ourselves feeling more comfortable having gotten a full 24-hours on our own, under our collective belts. We are in contact with H's doctor every day as he adjusts the insulin doses and we are beginning to see a pattern and some consistency in range of her blood sugar level. We now know her signs of hypoglycemia and hyperglycemia and how to respond to both issues. We know how to make "adjustment doses" of the quick acting insulin, figure out her carb intake for meals and snacks and the "1 unit to every 8.5 grams" formula that seems to be working for her. We are still waking her up around 2:30 each morning to check her blood glucose level, and will do this for the next week or so, as well as keeping her on a regular waking/eating schedule during this initial stage. Tuesday will be her first day back at school, at which time H and I will meet with the school nurse and go over "the plan" at school, as well as notify H's bus driver, her teachers and identify the staff members at the high school that know how to administer emergency aid in the case H passes out at school from a sudden drop in her blood sugar level.
So here we are, on another journey that we didn't see coming and certainly couldn't have anticipated. So many questions have flooded our minds, perhaps the most prevalent being, "why?". We don't know, but just has H is now dependent on insulin for ongoing health, we are even more dependent on the Lord and his strength through this process. H has voiced this as well, but she told me that she knew the Lord had prepared her for this, saying that she "just knew" a while ago that she 'would be the one in our family to have something like this'. Although she'd rather NOT have diabetes, it is obvious that the Lord is near and taking care of her. She has a calmness and strength about her that can't be manufactured from her own sheer will. As a parent it is a good reminder to me, once again, that truly, these children we have are not ours, but the Lord's and His love for H, and us as her parents, is evident. Our prayer has been that He would meet her just where she needs it and in the way that only He can, and He is being faithful.
We are all tired, overwhelmed, and a little apprehensive, but feeling a blanket of comfort as we know so many are praying for us. We are dependent upon those continuing prayers. We know that for millions, diabetes is and has been a reality of their lives. For us, it is new and we will be adjusting for quite awhile. As we were told many times in the hospital, H isn't sick, and it doesn't mean she can't live a "normal" life, it just means she'll (we'll) have to approach it differently and work a little harder at it. In the big scheme of things, we are so thankful that she isn't terminally ill, or has a disease that will increasingly drain her life, or something that will leave her handicapped forever. As we've seen the color return to her cheeks as well as her energy and sweet disposition, we are thankful that this is a treatable disease, and something that can be dealt with. We are so thankful for the Lord's provision during this time as well. He provided additional income this month for both Ron and I that, as it turned out, helped cover the expense of the co-pay at the pharmacy (over $200) for all her initial supplies. We are thankful that H is a teenager and very conscientious and will be good at managing her diabetes and able to be independent in that. We are thankful that our other kids are all older as well and were able to take care of themselves while we spent the last many days at the hospital. It alleviated another level of potential stress.
Thank you to so many of you for your prayers and words of encouragement. We are depending on the Lord to guide us through this and dependent on your prayers.
For the past month, our daughter H has had some changes in her health; nothing that was obviously wrong but subtle changes and some weird "symptoms" that began around July and intensified once school began. Knowing that things weren't "right", I made a doctor's appointment for her this past Wednesday to see if they could connect the dots and let us know what was going on with her.
The night prior to her appointment, I had a very restless, fitful night of sleep. My mind was pouring over things and I felt a "nudge". I got up and went to the "symptom checker" on WebMD on the Internet. I know one should not put heavy weight on these kinds of things, and I think it is possible to self diagnose, convinced that one has the worst and most remote illness possible, but this time it was different. Again, the small voice said to me, "check diabetes symptoms." H had been really thirsty since summer, but we figured it was just because it was hot, she was active, and she had more of a need to stay hydrated. She also had been reading a lot and had complained of blurred vision, but again, I figured she just needed reading glasses like I did at an early age. I remembered something that was planted in my brain years ago, that increased thirst could be a sign of diabetes, as well as vision changes. So I checked her symptoms.
In those wee morning hours, I went through the list of symptoms for diabetes, and H had begun demonstrating a good portion of them. Returning to bed around 4:30 that morning, my husband turned over and asked if I was okay, and I blurted out, "I think H has diabetes." Needless to say, neither of us slept well the next few hours before we got up for our day of work. I had talked with H about what I had learned. In a very matter of fact way, she said that made sense, but of course, understandably, was hoping it wasn't' true.
The next day I was able to get her in to see the doctor. The nurse did a quick urine test and a finger poke, and after a very brief time, the doctor came in and announced, "yes, it is diabetes, Type 1." Next, she informed us that she was going to send us directly over to the Pediatric Endocrinologist's office at St. V's Hospital, and that he would get her admitted to the hospital for a minimum stay of 2 nights/3 days. My head was spinning, tears were rolling down H's cheeks as well as mine, and I couldn't get off the announcement of Type I diabetes; and now we're being told H is getting admitted directly into the hospital?
The doctor went on to explain the difference between Type 1 and Type 2 diabetes; Type 1 is when a person's pancreas stops making insulin altogether and the individual becomes insulin-dependent through injections for the rest of their life. Type 2 is often seen in older people and has more to do with lifestyle, eating habits, weight, and so forth, and often is not insulin dependent. We were consoled (?) with the fact that Type 1 can come on suddenly like this, even in families such as ours where there isn't a history of diabetes. There may be some latent gene combination that my husband and I gave to H that somehow triggered this, but in 75% of these cases, there is no family history or anything they can connect the onset to. It literally "just happens."
Within 3 hours of walking into the pediatrician's office to see what these symptoms meant, we found ourselves sitting in H's hospital room consulting with nurses and the endocrinologist, discussing why she was connected to an IV, what her first doses of insulin would be, and talk about the "diabetes teaching" we would be given over the next several days. I won't kid you--I don't know that any of us--my husband, H, or myself--fully received all that we were being told. We were in a fog of shock.
Over the next 2 nights and 3 days, we indeed did received lots of instruction. It became clearer why they have this hospital stay; not only to give the immediate intervention and attention the patient needs, but also to inform, educate and have a safe environment for families to be introduced to the world of diabetes, which now becomes their new reality. By the second day, H, my husband and myself were giving the new little patient her insulin shots. We had been quickly educated in technique, measurement, and administration of these shots. For me, the fear factor was the biggest obstacle I had to get over; I was thankful that I didn't have a needle phobia, but the thought of having to give my child shots was not that appealing, worried that they would inflict pain on her. H did great and after seeing her give herself the first injection, it alleviated a lot of fears associated with the "unknown" for me. She assured me that it really didn't hurt her. In fact, the finger pokes she has to do each time she checks her blood sugar level are much more uncomfortable than the actual insulin shots.
We came home late Friday afternoon, heavy with the reality that a new journey was ahead of us, and one that would become part of everyday life. Again we all fought back tears (and lost the battle) as we walked into our home and the heaviness of it all covered us. It hit us hard that we couldn't just leave this at the hospital, but now had to embrace it and bring it home with us, aware that we have to re-program our minds, acknowledging that this isn't an illness that will go away with time, but rather it is a new way of living, and one that we will have to work hard at adjusting to.
This morning, Sunday, we find ourselves feeling more comfortable having gotten a full 24-hours on our own, under our collective belts. We are in contact with H's doctor every day as he adjusts the insulin doses and we are beginning to see a pattern and some consistency in range of her blood sugar level. We now know her signs of hypoglycemia and hyperglycemia and how to respond to both issues. We know how to make "adjustment doses" of the quick acting insulin, figure out her carb intake for meals and snacks and the "1 unit to every 8.5 grams" formula that seems to be working for her. We are still waking her up around 2:30 each morning to check her blood glucose level, and will do this for the next week or so, as well as keeping her on a regular waking/eating schedule during this initial stage. Tuesday will be her first day back at school, at which time H and I will meet with the school nurse and go over "the plan" at school, as well as notify H's bus driver, her teachers and identify the staff members at the high school that know how to administer emergency aid in the case H passes out at school from a sudden drop in her blood sugar level.
So here we are, on another journey that we didn't see coming and certainly couldn't have anticipated. So many questions have flooded our minds, perhaps the most prevalent being, "why?". We don't know, but just has H is now dependent on insulin for ongoing health, we are even more dependent on the Lord and his strength through this process. H has voiced this as well, but she told me that she knew the Lord had prepared her for this, saying that she "just knew" a while ago that she 'would be the one in our family to have something like this'. Although she'd rather NOT have diabetes, it is obvious that the Lord is near and taking care of her. She has a calmness and strength about her that can't be manufactured from her own sheer will. As a parent it is a good reminder to me, once again, that truly, these children we have are not ours, but the Lord's and His love for H, and us as her parents, is evident. Our prayer has been that He would meet her just where she needs it and in the way that only He can, and He is being faithful.
We are all tired, overwhelmed, and a little apprehensive, but feeling a blanket of comfort as we know so many are praying for us. We are dependent upon those continuing prayers. We know that for millions, diabetes is and has been a reality of their lives. For us, it is new and we will be adjusting for quite awhile. As we were told many times in the hospital, H isn't sick, and it doesn't mean she can't live a "normal" life, it just means she'll (we'll) have to approach it differently and work a little harder at it. In the big scheme of things, we are so thankful that she isn't terminally ill, or has a disease that will increasingly drain her life, or something that will leave her handicapped forever. As we've seen the color return to her cheeks as well as her energy and sweet disposition, we are thankful that this is a treatable disease, and something that can be dealt with. We are so thankful for the Lord's provision during this time as well. He provided additional income this month for both Ron and I that, as it turned out, helped cover the expense of the co-pay at the pharmacy (over $200) for all her initial supplies. We are thankful that H is a teenager and very conscientious and will be good at managing her diabetes and able to be independent in that. We are thankful that our other kids are all older as well and were able to take care of themselves while we spent the last many days at the hospital. It alleviated another level of potential stress.
Thank you to so many of you for your prayers and words of encouragement. We are depending on the Lord to guide us through this and dependent on your prayers.
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