Last night the teaching nurse came to show us how to use the pen that injects the shots for Whitaker's growth hormone treatments. She was very kind and helpful and we learned pretty quickly. Despite being relatively intelligent individuals, John and I are not educated in anything medical, so it was new territory for us. After two hours, we understood every aspect and had administered the first shot.
Whitaker did great, especially after we told him that he didn't really have to get his first shot right up his pee hole as John had told him on the way home from school. Somehow, John and I don't exactly see eye to eye on the potential for psychological damage when he makes jokes such as these.
The nurse told us that we would see an improvement in his stamina even before we see any physical growth because everything on the inside has been deprived of what it needs to grow as well. We were very happy to hear this, because we had noticed his stamina decreasing over the last 12-24 months. Also, the point of the growth hormone is not only to make him taller, but to make him feel better physically and emotionally. We are really hopeful that it will be beneficial to him.
John's team still hasn't won a game. Hoping that changes soon, as he started the season sitting on 99 wins. Really would like for him to get his 100th win this year. Anything is possible with God, and divine intervention just may be necessary in this case.
I am nervous about letting the boys play indoor soccer tomorrow. Last week we skipped it, but this week I think I am going to let them if Whitaker promises a)not to hit the ball with his head and b)take a rest if the back of his head starts to hurt.
Snow might be coming.....can't beat a late January snow day! I love snow days - they are like a gift. Even if we have to make them up, I still have the greatest job in the world because it calls for work 182 days a year. Snow days for me include snuggling with the boys under warm covers, coffee in my sweats, and Regis and Kelly - it just doesn't get any better than that.
I heart HGTV, cupcakes, and friends.
Saturday, January 23, 2010
Friday, January 22, 2010
today's craziness
I am so tired today, but so thankful it is Friday. I just got a call from the teaching nurse for the subcutaneous shots that we can have training tonight at our house at 7:00. This is GREAT since we have no basketball game tonight, so today will be his first GH treatment. We are praying that this will help him many ways. Everything worked out just perfectly. (I knew there was a reason for me to be 15 minutes late getting up today!)
I am wearing a bathing suit under my jeans because I have no clean underwear. Yesterday I wore a panty-girdle. Guess laundry is on my list for this weekend.
Recently had the "how-to-wash-your-face-with-acne-cleanser" session with the boys. Last night's ride to the away ballgame proved that we need to have a "how-and-when-to-use-deoderant-with-discretion" conversation. Holy Lord. I almost gagged.
I think it is probably a sin to love a vehicle as much as I love my new car. It is 10 years old and has a ton of miles, but it is my dream car and I get a little happier every time I get in it. Despite what my husband says, it's not the Mercedes emblem on the front that makes me like it; the body style, heated leather seats, and 4-wheel drive all contribute largely as well.
Not like it matters, but I weigh 124 today. I have lost 5 lbs since last Tuesday, but I am in the Biggest Loser contest at my school and last semester I totally let my team down by going up the whole time. This semester I am going to do better. John, of course, has lost 10 lbs. since last Monday - 6 last week and 4 this week. On what planet does that make any sense? I just want to look like Kelly Ripa. Is that too much to ask?! Ha ha.
Seriously, I just want my kids to feel well and be healthy. I'll take looking like me if we can get there.
I am wearing a bathing suit under my jeans because I have no clean underwear. Yesterday I wore a panty-girdle. Guess laundry is on my list for this weekend.
Recently had the "how-to-wash-your-face-with-acne-cleanser" session with the boys. Last night's ride to the away ballgame proved that we need to have a "how-and-when-to-use-deoderant-with-discretion" conversation. Holy Lord. I almost gagged.
I think it is probably a sin to love a vehicle as much as I love my new car. It is 10 years old and has a ton of miles, but it is my dream car and I get a little happier every time I get in it. Despite what my husband says, it's not the Mercedes emblem on the front that makes me like it; the body style, heated leather seats, and 4-wheel drive all contribute largely as well.
Not like it matters, but I weigh 124 today. I have lost 5 lbs since last Tuesday, but I am in the Biggest Loser contest at my school and last semester I totally let my team down by going up the whole time. This semester I am going to do better. John, of course, has lost 10 lbs. since last Monday - 6 last week and 4 this week. On what planet does that make any sense? I just want to look like Kelly Ripa. Is that too much to ask?! Ha ha.
Seriously, I just want my kids to feel well and be healthy. I'll take looking like me if we can get there.
Wednesday, January 20, 2010
Hey, everybody!!!
Great visit today with the pediatric neurosurgeon in Louisville. He was very informative, gentle, and thorough with Whitaker. After we introduced ourselves to him, he went straight to Whitaker and asked him the questions and not us and checked him out all over. He looked in his eyes, ears, and mouth, and he discussed his headaches with him. He also checked his reflexes and balance. Then he took all of us to the room where he had some of Whitaker's images up on a screen.
He explained to us where the Chiari was, exactly what it looked like, and showed us where there was less than adequate spinal fluid flowing. He explained about this pressure and exactly when this would cause pain (at the point of exertion, or when laying down) which was completely consistent with Whitaker's reports of headaches when running, coughing, and when he wakes up in the mornings.
The measurement of Whitaker's "tonsil," which is part of the cerebellum, but should not be confused with the tonsils in the throat, is a little over 2 cm beyond where it is supposed to be. He explained to us that when you are growing, your brain grows under one set of messages and your skull expands with it because of the room left in soft spot. However, the back of the skull, for some reason, takes its instructions to grow from another location in the brain (the pituitary gland). If a child is growth hormone deficient, the brain keeps growing, but the bones in the back of the head do not. Since the cerebellum has no where to go, it smashes down into the upper spine.
At this point, surprised, I asked if the growth hormone deficiency and the Chiari Malformation are related. He said they are ENTIRELY related. This was interesting news to us because we thought they were just separate problems. He went on to explain that Whitaker's Chiari is large, and that in any other circumstance, we would be going straight to surgery. However, over the last 20 years they have seen a number of children with GHD and Chiari have improvement of the spacial orientation in the back of the skull simply from adding growth hormones and the consequent result of them.
Therefore, he said he would like to start Whitaker on growth hormone treatments right away and have us come back for another MRI in 3-4 months to check for improvement. At that time that we would also do a spinal MRI to see if there are any syrinxes and if there are, then we will have to do surgery at that time. Syrinxes are pools of spinal fluid in the back and spinal canal and if left there, can lead to permanent nerve damage. Even with growth hormone treatments, Whitaker's situation may not improve enough to bypass surgery, but in a few months it will be evident whether or not the increase in size will improve his Chiari.
Let me say, we were in the office for 3 hours. We got there at 11, which was a bonus because I had forgotten our insurance card, but I knew I could run downstairs three floors to the endocrinologist's office and they would copy it for me. This worked and we got checked in and waited. It was about 1:00 when they put us back in a room and we left there at 2:10. The doctor was very young, which we had expected, but he was also extremely, extremely intelligent. I don't know how to describe how brilliant this guy must be. We asked him about the genetic link and he said that doctors understand that there is one, but they do not understand yet why or what the link is. Other than infectious diseases, almost everything about us has a genetic link, according to him. Some are stronger than others.
He mentioned that he spent time in Cincinnati Children's Hospital and they actually have a Chiari unit, or a study, or something dedicated to Chiari there. He said that he did A LOT of Chiari surgeries there and that they had 35 families with multiple siblings with Chiari. We asked a little bit about the surgery, understanding that it is still a very real possibility, and he said that it is safe and he does them now at least once a week. Then I asked him why it is so rare, to which he kindly answered, "If you're a neurosurgeon, it's not rare."
The fact that it is so routine for them actually makes me feel better. I am so happy we have some time to see if the growth hormones work. We asked about contact sports and the risk for rupturing. He said there is a risk for rupturing, but he was not of the opinion to restrict activities now. After surgery would be a whole different story. The doctor also agreed to look at the MRI of Tretter that we sent to him, and explained that all future MRIs should be done at Kosair because they know the exact angles and images he wants. Completely understandable. We will be happy to comply. :-)
Obviously, Whitaker was thrilled with this news and so are we. I will post updates on how the growth hormone works, and if I forgot anything, I'll add it later. We are so thankful that at least the timing is such that if we have to do something, it can be in the summer. Keep the prayers coming - it is all going to work out.
He explained to us where the Chiari was, exactly what it looked like, and showed us where there was less than adequate spinal fluid flowing. He explained about this pressure and exactly when this would cause pain (at the point of exertion, or when laying down) which was completely consistent with Whitaker's reports of headaches when running, coughing, and when he wakes up in the mornings.
The measurement of Whitaker's "tonsil," which is part of the cerebellum, but should not be confused with the tonsils in the throat, is a little over 2 cm beyond where it is supposed to be. He explained to us that when you are growing, your brain grows under one set of messages and your skull expands with it because of the room left in soft spot. However, the back of the skull, for some reason, takes its instructions to grow from another location in the brain (the pituitary gland). If a child is growth hormone deficient, the brain keeps growing, but the bones in the back of the head do not. Since the cerebellum has no where to go, it smashes down into the upper spine.
At this point, surprised, I asked if the growth hormone deficiency and the Chiari Malformation are related. He said they are ENTIRELY related. This was interesting news to us because we thought they were just separate problems. He went on to explain that Whitaker's Chiari is large, and that in any other circumstance, we would be going straight to surgery. However, over the last 20 years they have seen a number of children with GHD and Chiari have improvement of the spacial orientation in the back of the skull simply from adding growth hormones and the consequent result of them.
Therefore, he said he would like to start Whitaker on growth hormone treatments right away and have us come back for another MRI in 3-4 months to check for improvement. At that time that we would also do a spinal MRI to see if there are any syrinxes and if there are, then we will have to do surgery at that time. Syrinxes are pools of spinal fluid in the back and spinal canal and if left there, can lead to permanent nerve damage. Even with growth hormone treatments, Whitaker's situation may not improve enough to bypass surgery, but in a few months it will be evident whether or not the increase in size will improve his Chiari.
Let me say, we were in the office for 3 hours. We got there at 11, which was a bonus because I had forgotten our insurance card, but I knew I could run downstairs three floors to the endocrinologist's office and they would copy it for me. This worked and we got checked in and waited. It was about 1:00 when they put us back in a room and we left there at 2:10. The doctor was very young, which we had expected, but he was also extremely, extremely intelligent. I don't know how to describe how brilliant this guy must be. We asked him about the genetic link and he said that doctors understand that there is one, but they do not understand yet why or what the link is. Other than infectious diseases, almost everything about us has a genetic link, according to him. Some are stronger than others.
He mentioned that he spent time in Cincinnati Children's Hospital and they actually have a Chiari unit, or a study, or something dedicated to Chiari there. He said that he did A LOT of Chiari surgeries there and that they had 35 families with multiple siblings with Chiari. We asked a little bit about the surgery, understanding that it is still a very real possibility, and he said that it is safe and he does them now at least once a week. Then I asked him why it is so rare, to which he kindly answered, "If you're a neurosurgeon, it's not rare."
The fact that it is so routine for them actually makes me feel better. I am so happy we have some time to see if the growth hormones work. We asked about contact sports and the risk for rupturing. He said there is a risk for rupturing, but he was not of the opinion to restrict activities now. After surgery would be a whole different story. The doctor also agreed to look at the MRI of Tretter that we sent to him, and explained that all future MRIs should be done at Kosair because they know the exact angles and images he wants. Completely understandable. We will be happy to comply. :-)
Obviously, Whitaker was thrilled with this news and so are we. I will post updates on how the growth hormone works, and if I forgot anything, I'll add it later. We are so thankful that at least the timing is such that if we have to do something, it can be in the summer. Keep the prayers coming - it is all going to work out.
Elvis is in the building
Normal evening routine at our house includes at least 5-10 minutes of a freshly-showered Whitaker dramatically combing his hair and then proceeding to impersonate Elvis, into the comb. This is usually complete with hip motions, despite the fact that he is STARK NAKED. He now thinks it amusing to go cross-eyed and fall over on the floor, mid-impersonation. Great fun for mom.
Just spoke with the neurosurgeon's office and they had a cancellation for 11:30 Eastern10:30 Cenral today so we are going to take him up there. We have all his paperwork filled out and they have all of his MRI scans, so we should be good to go. I had done sub plans for today anyway because I was supposed to go to a workshop, but my school administrator gracioulsy said I could go to a similar workshop next week instead. :-)
I will post later after we learn anything. Keep the prayers coming! Everything will be fine. God is so good.
Just spoke with the neurosurgeon's office and they had a cancellation for 11:30 Eastern10:30 Cenral today so we are going to take him up there. We have all his paperwork filled out and they have all of his MRI scans, so we should be good to go. I had done sub plans for today anyway because I was supposed to go to a workshop, but my school administrator gracioulsy said I could go to a similar workshop next week instead. :-)
I will post later after we learn anything. Keep the prayers coming! Everything will be fine. God is so good.
Tuesday, January 19, 2010
More clear MRI scans
Yesterday we got the news that my MRI also was clear of any Chiari Malformation. We have forwarded both mine and Tretter's images to a neurosurgeon in Louisville just to have another opinion and have a specialist concur. Should there be no Chiari connection in the family, then we are both relieved and left with the question as to where Whitaker got this, but that fact is really irrelevant now.
I did call the pediatric neurosureon's office in Louisville today to see if he could possibly fit us in sooner. Whitaker is doing okay, but he is a little anxious and, understandably, would like to get it over with as soon as possible. I explained to the scheduling nurse that his consult was on his birthday and she said she could change it to later. I told her no, we want the first available appointment and she said she would check the computer and try to see if he had a cancellation for today or tomorrow. Someone is supposed to call me back on my cell phone if they can, but their computers were not working properly (of course). I really pray that they can fit us in sooner because I don't want him to have to worry with all the questions we have for two more weeks.
Apparently, they only see patients on Tuesdays and Wednesdays and next week they are all going to be gone. Doctors often schedule conferences in tropical or semi-tropical climates during the last, depressing weeks of January. Can't say that I blame them. It might even encourage a certain little guy with an oversized brain to become a surgeon. :-)
Thanks everyone for all your prayers and concern. We really appreciate everything!!
I'll keep posting if anything seems important. Right now, I personally cannot imagine letting either one of the boys get back in a football uniform. I hope that decision is not left up to us as parents. Please pray that whatever sureon we end up going with will strongly discourage or not allow it. I know basketball can be rough, and baseball is risky in its own way, but, come on. Do we need to be puttting little guys in big helmets and smashing them into each other? I love to watch football, (go Gators!) don't get me wrong. I'm not hatin', I'm just sayin'.
Golf - I'm voting golf. Think I feel a golf trip in our future!
I did call the pediatric neurosureon's office in Louisville today to see if he could possibly fit us in sooner. Whitaker is doing okay, but he is a little anxious and, understandably, would like to get it over with as soon as possible. I explained to the scheduling nurse that his consult was on his birthday and she said she could change it to later. I told her no, we want the first available appointment and she said she would check the computer and try to see if he had a cancellation for today or tomorrow. Someone is supposed to call me back on my cell phone if they can, but their computers were not working properly (of course). I really pray that they can fit us in sooner because I don't want him to have to worry with all the questions we have for two more weeks.
Apparently, they only see patients on Tuesdays and Wednesdays and next week they are all going to be gone. Doctors often schedule conferences in tropical or semi-tropical climates during the last, depressing weeks of January. Can't say that I blame them. It might even encourage a certain little guy with an oversized brain to become a surgeon. :-)
Thanks everyone for all your prayers and concern. We really appreciate everything!!
I'll keep posting if anything seems important. Right now, I personally cannot imagine letting either one of the boys get back in a football uniform. I hope that decision is not left up to us as parents. Please pray that whatever sureon we end up going with will strongly discourage or not allow it. I know basketball can be rough, and baseball is risky in its own way, but, come on. Do we need to be puttting little guys in big helmets and smashing them into each other? I love to watch football, (go Gators!) don't get me wrong. I'm not hatin', I'm just sayin'.
Golf - I'm voting golf. Think I feel a golf trip in our future!
Monday, January 18, 2010
Good News!
Thank God that Tretter's MRI report per Dr. M. this afternoon shows no Chiari Malformation. We are so, so thankful. Dr. M. also made us feel a lot better about the severity of the surgery. e confirmed that Whitaker needs "fixed" but likened the risk to any other general anesthesia surgery. He also reiterated what we thought we had read in that once a Chiari is fixed it is fixed for good, with no chance of relapse. This is sort of best-case-scenario brain surgery, if we can go there. I can totally go there.
We had a couple of questions that he said he needed to defer to the pediatric neurosurgeon and he agreed to have Tretter's images sent up to Dr. "Wilson" in Louisville just for another professional opinion. His opinion was that Whitaker just got the short end of the stick. We asked him about time off school and he said 10-year-olds bounce back pretty quickly. Nothing else too specific, but still a very positive appointment!
Even though Tretter's symptoms still exist, we would much rather live with symptoms and no diagnosis than face another Chiari surgery!!
Thank God that our prayers have been answered and that we are on the road to more clarity about everything. Thanks also to everyone for their support!!
I will keep updating as soon as anything comes up. Lite Ranch dressing tastes like crap.
lyons out
We had a couple of questions that he said he needed to defer to the pediatric neurosurgeon and he agreed to have Tretter's images sent up to Dr. "Wilson" in Louisville just for another professional opinion. His opinion was that Whitaker just got the short end of the stick. We asked him about time off school and he said 10-year-olds bounce back pretty quickly. Nothing else too specific, but still a very positive appointment!
Even though Tretter's symptoms still exist, we would much rather live with symptoms and no diagnosis than face another Chiari surgery!!
Thank God that our prayers have been answered and that we are on the road to more clarity about everything. Thanks also to everyone for their support!!
I will keep updating as soon as anything comes up. Lite Ranch dressing tastes like crap.
lyons out
randomness
It's 3:34 a.m. I am exhausted but I cannot sleep. Ever had that feeling? Yeah, it pretty much sucks. Not a lot of great literary writing going on when it's the middle of the night. I want to write down a few more things that I don't want to forget, and since everyone uses electronic means to write down anything, I am doing it here. That is basically how it is with me, though.....you get the whole package. The good, the bad, the funny, the crazy, the irritable. Take what you want and leave what you don't. Life is too short for me to worry about it anymore.
The other day I had to speak with a pre-certification lady at the hospital in order to get the MRI's approved by the insurance. I personally felt like she was doubting and questioning everything I said about me and about Tretter. I am sure that she was looking at it from an insurance company's perspective, but I think a Chiari diagnosis in the family should automatically qualify the rest of the family members to be checked. I know the test is expensive, but ..... I don't even want to get started on the whole insurance/health care thing.
The other morning, after we found out what we found out about wrestling, the boys were playing rough and wrestling a little on the floor. I had to tell them to stop and I cushioned the news about the risk of Chiari patients having ruptures and worse if they wrestle. Whitaker immediately said, "SOOOO, you're telling me my head's going to explode!!" I told him (which I have told him 1000 times before) that God only gives us one head and we must take care of it. He answered with, "Yeah, but He made it wrong." I told Whitaker that this is part of life and that we can't blame anyone, especially God. Then I reassured them that God is with us all and will take care of all of us through this. I tried to explain that good is going to come from this; we don't know what yet, but we know that this is part of a special plan and it will make them stronger. They didn't buy that too wholeheartedly, but it was shower time anyway and one of them loves showers and the other doesn't, so if we get everyone successfully clean everyday, that is a little mommy victory.
I know it sounds crazy, (what else would you expect from me by now?) but I really am so, so thankful that we are close to getting some answers and realizing that some of these things are not our fault. Of course, there are still plenty of things that are, but not everything.
I also cannot stop thinking that this is going to be completely fixable....from what I understand now, this is risky because it is the brain, (and it is my child) but having the repair surgery takes care of it. Given the things that could be wrong with children, this is a huge, huge blessing. The surgery is not even something they will do at St. Jude's because it is so not life-threatening. That is a blessing.
My dog, Tebow, has been driving me crazy today. He won't get more than three feet away from my body -all day!! He kept sitting on me and next to me and under me. When I went to bed he came and lied on the floor next to me (people lie, things lay right?) but apparently that wasn't close enough because then he got on top of me. Now he is downstairs next to me on the couch, touching his butt to mine. How sweet.
I want to not go to school for the whole day today. John kind of disapproved of that idea when I said I could take the whole day as a sick day to go to the doctor. He gave an edict that we will each only take half a day off. That is what I will do I guess. Don't want to upset him during his 0-for-whatever it is season. I told him he would find God before this season was over. I was right.
The other day I had to speak with a pre-certification lady at the hospital in order to get the MRI's approved by the insurance. I personally felt like she was doubting and questioning everything I said about me and about Tretter. I am sure that she was looking at it from an insurance company's perspective, but I think a Chiari diagnosis in the family should automatically qualify the rest of the family members to be checked. I know the test is expensive, but ..... I don't even want to get started on the whole insurance/health care thing.
The other morning, after we found out what we found out about wrestling, the boys were playing rough and wrestling a little on the floor. I had to tell them to stop and I cushioned the news about the risk of Chiari patients having ruptures and worse if they wrestle. Whitaker immediately said, "SOOOO, you're telling me my head's going to explode!!" I told him (which I have told him 1000 times before) that God only gives us one head and we must take care of it. He answered with, "Yeah, but He made it wrong." I told Whitaker that this is part of life and that we can't blame anyone, especially God. Then I reassured them that God is with us all and will take care of all of us through this. I tried to explain that good is going to come from this; we don't know what yet, but we know that this is part of a special plan and it will make them stronger. They didn't buy that too wholeheartedly, but it was shower time anyway and one of them loves showers and the other doesn't, so if we get everyone successfully clean everyday, that is a little mommy victory.
I know it sounds crazy, (what else would you expect from me by now?) but I really am so, so thankful that we are close to getting some answers and realizing that some of these things are not our fault. Of course, there are still plenty of things that are, but not everything.
I also cannot stop thinking that this is going to be completely fixable....from what I understand now, this is risky because it is the brain, (and it is my child) but having the repair surgery takes care of it. Given the things that could be wrong with children, this is a huge, huge blessing. The surgery is not even something they will do at St. Jude's because it is so not life-threatening. That is a blessing.
My dog, Tebow, has been driving me crazy today. He won't get more than three feet away from my body -all day!! He kept sitting on me and next to me and under me. When I went to bed he came and lied on the floor next to me (people lie, things lay right?) but apparently that wasn't close enough because then he got on top of me. Now he is downstairs next to me on the couch, touching his butt to mine. How sweet.
I want to not go to school for the whole day today. John kind of disapproved of that idea when I said I could take the whole day as a sick day to go to the doctor. He gave an edict that we will each only take half a day off. That is what I will do I guess. Don't want to upset him during his 0-for-whatever it is season. I told him he would find God before this season was over. I was right.
Sunday, January 17, 2010
honestly, I am boring myself
Okay, I am going to speed it up a little because I am ready to be done for tonight, but I know that tomorrow will prompt more need share so I am trying to catch up.
Saturday: Boys had a basketball game in the morning and they both played great. Whitaker fell down about ten times and Tretter almost cried everytime he did anything wrong, but overall they did fine. I, on the other hand, was a complete wreck the whole time and I was really scared the entire game. Whitaker had a friend spend the night and Tretter spent the night with a friend.
Sunday: They were both a little grouchy but we went to church and John's parents came down to take Whitaker to the Free Throw Contest at the high school so we could go meet with Dr. M. He was going to read us the report on Tretter's MRI and interpret the report from Kosair on Whitaker's MRI. Whitaker was too young to be in the contest and Dr. M. was soooo busy and the results weren't back yet. We made an appointment for tomorrow.....at 2:00 p.m. Bummer because I am so tired of waiting.
We don't know anything else. I was so nervous in church about meeting with the doc that I had to leave twice to use the restroom. I think I am over that though, too tired to be nervous and too faith-filled to worry. We think we know the diagnosis.
We still do not know to what extent this is a genetic disease. Another blessing that John actually pointed out to me is that my brother's children and my sister's child (the three absolute cutest kids on the planet) are all adopted. Maybe there is reason in everything.
lyons out
Saturday: Boys had a basketball game in the morning and they both played great. Whitaker fell down about ten times and Tretter almost cried everytime he did anything wrong, but overall they did fine. I, on the other hand, was a complete wreck the whole time and I was really scared the entire game. Whitaker had a friend spend the night and Tretter spent the night with a friend.
Sunday: They were both a little grouchy but we went to church and John's parents came down to take Whitaker to the Free Throw Contest at the high school so we could go meet with Dr. M. He was going to read us the report on Tretter's MRI and interpret the report from Kosair on Whitaker's MRI. Whitaker was too young to be in the contest and Dr. M. was soooo busy and the results weren't back yet. We made an appointment for tomorrow.....at 2:00 p.m. Bummer because I am so tired of waiting.
We don't know anything else. I was so nervous in church about meeting with the doc that I had to leave twice to use the restroom. I think I am over that though, too tired to be nervous and too faith-filled to worry. We think we know the diagnosis.
We still do not know to what extent this is a genetic disease. Another blessing that John actually pointed out to me is that my brother's children and my sister's child (the three absolute cutest kids on the planet) are all adopted. Maybe there is reason in everything.
lyons out
more catching up
Thursday and Friday were filled with more sharing with friends, more searching for a reputable (i.e. the best on the planet) pediatric neurosurgeon, and more God stories. We learned that kids with Chiari are not supposed to do contact sports, particularly WRESTLING. Both of our boys have been wrestlers for the past three years. The head of pediatric neurosurgery at Kosair is well-respected in the field and is named Dr. Moriarty and I learned through a friend/coworker that he said that wrestling can cause ruptures and hemorrhaging.
Learning this caused the room to spin again because our boys did not want to wrestle this year despite some success in the past. Many people strongly encouraged them to wrestle and they said emphatically that they were done. I was never a huge fan of the sport of wrestling, but I was a huge fan of all the people in wrestling. I miss them because that was such a huge part of our lives. They remain good friends and have already shown us huge amounts of love and support. I am still marveling at the grace of God that turned the boys off to wrestling before a tragedy occured on the mat. I should know by now not to be surprised, but prepare to be amazed.
Friday night we had Tretter's MRI at Perry County Memorial Hospital here in Tell City. He was such a good little guy and was so still and calm. Afterward we got a blizzard and I took him to Walmart where he picked out a book. John had taken Whitaker to the Harlem Globetrotter's in Evansville, so I figured Tretter needed a little present.
Learning this caused the room to spin again because our boys did not want to wrestle this year despite some success in the past. Many people strongly encouraged them to wrestle and they said emphatically that they were done. I was never a huge fan of the sport of wrestling, but I was a huge fan of all the people in wrestling. I miss them because that was such a huge part of our lives. They remain good friends and have already shown us huge amounts of love and support. I am still marveling at the grace of God that turned the boys off to wrestling before a tragedy occured on the mat. I should know by now not to be surprised, but prepare to be amazed.
Friday night we had Tretter's MRI at Perry County Memorial Hospital here in Tell City. He was such a good little guy and was so still and calm. Afterward we got a blizzard and I took him to Walmart where he picked out a book. John had taken Whitaker to the Harlem Globetrotter's in Evansville, so I figured Tretter needed a little present.
not exactly the best news
Whitaker's MRI was scheduled for Tuesday, Jan. 12. However, it snowed so we didn't have school on Thursday and Friday before, so we asked Kosair to change his appointment to Friday so none of us had to miss school. Friday night we drove to Louisville and had the MRI and drove home. In the meantime I scheduled delivery of the hormones and had an educational phone conversation with the hormone company in California, and spoke with the nurse who was to do our training, as Whitaker will recieve one shot daily subcutaneously, and John and I are about the least medically trained people ever.
On Tuesday, I spoke with Dr. S. and she said that we could not move forward with the growth hormone until Whitaker sees a neurosurgeon because he has Chiari I Syndrome as detected in the MRI. The hypothalamus and pituitary are, thankfully, fine. I was writing everything down, but I was spelling it Kiari. She asked if he were having any headaches or anything, and I explained that he only has them when he coughs or runs a lot. Dr. S. said she would get him the first available appointment as he MUST see a pediatric neurosurgeon.
She told me I might want to look it up and told me how to spell it. When I spelled it correctly, I realized that it is the same diagnosis that two brothers in my school have and both of them had surgery on their brains. I told her that my other son has headaches, too, and she said that we would need to have him checked, too, because it often runs in siblings. I started to feel lightheaded and I was alone so I scared myself back to reality. I was trying to piece this together but I had about 15 minutes before I had to go teach my first class at Ivy Tech Community College. I was so excited about teaching the class and I want desperately to do a good job. I knew I had to a) walk out the door and not look anything up and b) get my emotions under control so as to maintain the upmost of professionalism.
I drove to school and texted a couple of people and told them the diagnosis and referral to a surgeon. One of them was my sister, the other a friend. I went and printed off my syllabus and managed to make it through the three-hour class, taking only one break to go to the restroom and check my phone for texts. John had a game that night so the boys had ridden the bus with him and were still not even home when I got home from teaching my class. I immediately started looking up Chiari and trying to learn as much as I could. I could see tell after about 10 minutes, that Whitaker was going to need surgery, and that Tretter probably has it.
When John got home, he asked me if I had gotten the results of the MRI from Dr. S. and I whispered to him that we have to talk after the boys went to bed. We put the boys to bed and I proceeded to tell him what I had learned. The next day I emailed my parents and told some friends at school, as I always have had a propensity for over-sharing. During my prep, I spoke with my good friend/school social worker, and she agreed to let me have a conversation in her office with the 7th grader that I have who had the surgery (we will refer to him as S. Wilson - totally not his real name). I wanted to be appropriate, but knowing the sensitivity of the issue, I didn't just want to start grilling him in class or the hallway. I got him out of art class, told him it was about me and that he was not in any trouble. The social worker helped me explain that I just had a lot of questions, I wanted this to remain confidential, and I very much did not want him to feel uncomfortable. He was, as I expected, a complete doll. He was so helpful and laid back and answered all of my questions. His info was concerning, but I learned his surgeon's name, his recovery time, and I was able to see what a bright, fully-recovered, adorable young man he is. He explained that his older brother was diagnosed first, he was subsequently checked and had a more serious condition with syrinxes. (not sure if that is spelled properly) Therefore, his surgery was scheduled first, followed by his brother's several months later. Knowing that Tretter's symptoms of migraines and bladder control are worse than Whitaker's symptoms, I couldn't help but feel a connection. I have since learned that any Chiari that is symptomatic at all needs relatively urgent attention. I cannot put into words how helpful this conversation was and how much I appreciate his candid, open honesty. I will be greatful for that forever.
When I got home that day, the pediatric neurosurgeon's office had called and given us the appointment time. It is on February 3, Whitaker's birthday. Then she said that our doctor's name is Dr. Wilson (not his real name, but the same last name as the boys I teach). I smiled, knowing that God is in control, and He has a sense of humor. At least that is how I choose to see it.
We planned to tell the boys about it after Wednesday night religion. John and I took them out for a Frosty, then came home to hold a family meeting. We tried to explain to the boys in as positive a light as possible what we had learned and what it might entail.
Whitaker just totally jumped to the conclusion and said, "So, I'm gonna have to have brain surgery?" Then we told him he would be going to the neurosurgeon on his 10th birthday. He smiled and said, "Happy Birthday to me, You get brain surgery!!"
We laughed and Tretter started to say, "I would HATE to be Whita....."
Right then we looked to him and said, "and it's genetic. You might have Chiari too. You need to be checked."
His eyes totally filled with tears and the color drained from his face. Tretter is an old soul and he understands things on a deeper level. Whitaker is a comedian and will use his sense of humor to get through everything. Tretter said, "I am not having an MRI!"
Whitaker said, "MRI - you're going to have way worse than that."
We explained to Tretter that if he has it, this is probably the cause of his migraines and his bladder control problems, both of which he would gladly get rid of if a cure exists. We went to bed Wednesday night with more questions than answers, reassuring the boys that we would get through this together.
On Tuesday, I spoke with Dr. S. and she said that we could not move forward with the growth hormone until Whitaker sees a neurosurgeon because he has Chiari I Syndrome as detected in the MRI. The hypothalamus and pituitary are, thankfully, fine. I was writing everything down, but I was spelling it Kiari. She asked if he were having any headaches or anything, and I explained that he only has them when he coughs or runs a lot. Dr. S. said she would get him the first available appointment as he MUST see a pediatric neurosurgeon.
She told me I might want to look it up and told me how to spell it. When I spelled it correctly, I realized that it is the same diagnosis that two brothers in my school have and both of them had surgery on their brains. I told her that my other son has headaches, too, and she said that we would need to have him checked, too, because it often runs in siblings. I started to feel lightheaded and I was alone so I scared myself back to reality. I was trying to piece this together but I had about 15 minutes before I had to go teach my first class at Ivy Tech Community College. I was so excited about teaching the class and I want desperately to do a good job. I knew I had to a) walk out the door and not look anything up and b) get my emotions under control so as to maintain the upmost of professionalism.
I drove to school and texted a couple of people and told them the diagnosis and referral to a surgeon. One of them was my sister, the other a friend. I went and printed off my syllabus and managed to make it through the three-hour class, taking only one break to go to the restroom and check my phone for texts. John had a game that night so the boys had ridden the bus with him and were still not even home when I got home from teaching my class. I immediately started looking up Chiari and trying to learn as much as I could. I could see tell after about 10 minutes, that Whitaker was going to need surgery, and that Tretter probably has it.
When John got home, he asked me if I had gotten the results of the MRI from Dr. S. and I whispered to him that we have to talk after the boys went to bed. We put the boys to bed and I proceeded to tell him what I had learned. The next day I emailed my parents and told some friends at school, as I always have had a propensity for over-sharing. During my prep, I spoke with my good friend/school social worker, and she agreed to let me have a conversation in her office with the 7th grader that I have who had the surgery (we will refer to him as S. Wilson - totally not his real name). I wanted to be appropriate, but knowing the sensitivity of the issue, I didn't just want to start grilling him in class or the hallway. I got him out of art class, told him it was about me and that he was not in any trouble. The social worker helped me explain that I just had a lot of questions, I wanted this to remain confidential, and I very much did not want him to feel uncomfortable. He was, as I expected, a complete doll. He was so helpful and laid back and answered all of my questions. His info was concerning, but I learned his surgeon's name, his recovery time, and I was able to see what a bright, fully-recovered, adorable young man he is. He explained that his older brother was diagnosed first, he was subsequently checked and had a more serious condition with syrinxes. (not sure if that is spelled properly) Therefore, his surgery was scheduled first, followed by his brother's several months later. Knowing that Tretter's symptoms of migraines and bladder control are worse than Whitaker's symptoms, I couldn't help but feel a connection. I have since learned that any Chiari that is symptomatic at all needs relatively urgent attention. I cannot put into words how helpful this conversation was and how much I appreciate his candid, open honesty. I will be greatful for that forever.
When I got home that day, the pediatric neurosurgeon's office had called and given us the appointment time. It is on February 3, Whitaker's birthday. Then she said that our doctor's name is Dr. Wilson (not his real name, but the same last name as the boys I teach). I smiled, knowing that God is in control, and He has a sense of humor. At least that is how I choose to see it.
We planned to tell the boys about it after Wednesday night religion. John and I took them out for a Frosty, then came home to hold a family meeting. We tried to explain to the boys in as positive a light as possible what we had learned and what it might entail.
Whitaker just totally jumped to the conclusion and said, "So, I'm gonna have to have brain surgery?" Then we told him he would be going to the neurosurgeon on his 10th birthday. He smiled and said, "Happy Birthday to me, You get brain surgery!!"
We laughed and Tretter started to say, "I would HATE to be Whita....."
Right then we looked to him and said, "and it's genetic. You might have Chiari too. You need to be checked."
His eyes totally filled with tears and the color drained from his face. Tretter is an old soul and he understands things on a deeper level. Whitaker is a comedian and will use his sense of humor to get through everything. Tretter said, "I am not having an MRI!"
Whitaker said, "MRI - you're going to have way worse than that."
We explained to Tretter that if he has it, this is probably the cause of his migraines and his bladder control problems, both of which he would gladly get rid of if a cure exists. We went to bed Wednesday night with more questions than answers, reassuring the boys that we would get through this together.
History
Okay, I have come to the conclusion that I cannot possibly text, email, and facebook message everyone that I care about through this lovely new development in our lives. So, you get the whole package - on my crazy self blog, which only a few people know about and NO ONE reads, I am going to put updates about my kiddos.
Here's the LOOOOONGGG version, because I am assuming if you are reading this it's because you want to.
When Whitaker was 2 and Tretter was 1, the Dr. that we see here in our hometown of Tell City, who, for the purposes of this blog will be "Dr. M." sent us to an endocrinologist in Louisville at Kosair Children's Hospital because both boys had fallen off the growth chart. There was NO eveidence of failure to thrive, as their emotional, physical, and intellectual development was all advanced.
At the endocrinologist, they were measured, weighed, had blood taken and hand x-rays (to check bone age) every six months or a year for several years. Both boys were diagnosed as being constitutionally delayed, which in lay person's terms means that they would simply be late-bloomers, possibly growing to their full adult potential in the years following high school. There are no other general symptoms and no risks to being constitutionally delayed....it just means that a child's bone age is not the same as their chronological age.
Somewhere around age 5, Tretter was released from the endo until further concerns arose because his growth velocity (rate of height increase/time) was more normal and his size was closer to average. Whitaker continued to be seen every six months or a year and his height and weight were charted.
Last November, at an appointment with our pysician at the endocrinologist, (we'll call her Dr. S.)she realized that Whitaker's growth velocity had slowed and mentioned that since he is getting close to 10, we may want to go ahead and have the testing done to see if he may have a growth hormone deficiency, although it is assumed up to this point to be just constitutional delay and short stature due to familial short stature. She explained that their office only uses Kosair hospital and asked me what kind of insurance we have. I told her we had Anthem; she made a face and then glanced down at the newspaper sitting on the desk. The headline sayed something such as, "Norton Settles with Anthem."
Relieved, she said, "Oh, good, they have been arguing and Kosair wasn't accepting Anthem but it looks like they worked it out." She wrote the order for his stim test (growth hormone stimulating test) to take place at Kosair hospital. The appointment was set for December 15.
On December 23, we spoke with her and she diagnosed him with a growth hormone deficiency as he had failed both stimulation tests. She said she would order the growth hormones, order training for us to administer the shots, and that it was routine for them to do an MRI to check for pituitary or hypothalamus tumors before they start hormones.
Symptom tracker
Whitaker has increasingly shown signs of fatigue, lethargy and general lack of energy over the last few years. Despite wanting to be active and athletic, he struggles with coordination. One time last year he fouled out of a basketball game in the first quarter because he kept running into people. He also complains of headaches but not migraines. His headaches happen when exerting himself. After every soccer game, and playing hard in the back yard, he says the back of his head hurts. He also has severe headaches in the back of his head when he coughs. We just told him to drink more water and that he might not be in very good shape. Nice. I am sure that we have accused him of being lazy. We were hopeful (and still are) that the growth hormones would help give him the balance of what his body wasn't making for itself that would increase his energy level and improve his metabolism.
Tretter began having headaches followed by episodes of vomiting at age 3. We tried to track them to see if they were related to allergies, stress, nutrition, etc. Basically we got nowhere, but we did see a stress connection and lack of sleep connection. He had 4 or 5 migraines each year in Kindergarten through 2nd grade and we thought that they might be diminishing in frequency, but not by much. As he grew older, he became more able to tell us when he was getting one and sometimes he would fall asleep before he got sick; sometimes I could give him Motrin and it would help. Sometimes I could give him Motrin and it wouldn't help.
Tretter also has had problems with bladder control for his entire life.......not just bed-wetting at night, but during the daytime as well. He had to tinkle so often that I had his urine checked three times by 1st grade because I was sure he had a kidney infection or a bladder infection or kidney reflux or cancer or something. The urine tests always came back clean and clear and we were told not to worry that it could be just part of his constitutionaly delay.
In July 2009, Dr. M. was concerned about his continued lack of control and thought it might be physiological. He ordered an abdominal ultrasound and an abdominal x-ray to check for abnormalities or problems, and, again referred us to a specialist. We took him to a urologist in Louisville who will be referred to as "Dr. J." and he was so nice to Tretter. He reviewed the reports with us and explained that there is absolutely nothing physically wrong with his kidneys, bladder, urine, or anything in the urinary tract. This was a relief, obviously. Dr. J. said there are some meds available to help dry him up so he would not have to go so often. We were NOT keen on that idea at all, and he was seemed very pleased to prescribe him NOTHING. He joked with Tretter that all the old men in the waiting room would be jealous that he doesn't have problems with "dribbling." We left there both relieved and confused, but mostly just thankful for a clean report on the area. His bladder control problems continue, and we make it a "non-issue."
If he wets the bed, he climbs in our bed and says, "I'm sorry, I accidentally wet the bed."
I say, "That's okay, sweetheart, you don't have to be sorry. Climb in." That's the end of it.
I change the sheets often but what mom doesn't have to change the sheets often for one reason or another?
Here's the LOOOOONGGG version, because I am assuming if you are reading this it's because you want to.
When Whitaker was 2 and Tretter was 1, the Dr. that we see here in our hometown of Tell City, who, for the purposes of this blog will be "Dr. M." sent us to an endocrinologist in Louisville at Kosair Children's Hospital because both boys had fallen off the growth chart. There was NO eveidence of failure to thrive, as their emotional, physical, and intellectual development was all advanced.
At the endocrinologist, they were measured, weighed, had blood taken and hand x-rays (to check bone age) every six months or a year for several years. Both boys were diagnosed as being constitutionally delayed, which in lay person's terms means that they would simply be late-bloomers, possibly growing to their full adult potential in the years following high school. There are no other general symptoms and no risks to being constitutionally delayed....it just means that a child's bone age is not the same as their chronological age.
Somewhere around age 5, Tretter was released from the endo until further concerns arose because his growth velocity (rate of height increase/time) was more normal and his size was closer to average. Whitaker continued to be seen every six months or a year and his height and weight were charted.
Last November, at an appointment with our pysician at the endocrinologist, (we'll call her Dr. S.)she realized that Whitaker's growth velocity had slowed and mentioned that since he is getting close to 10, we may want to go ahead and have the testing done to see if he may have a growth hormone deficiency, although it is assumed up to this point to be just constitutional delay and short stature due to familial short stature. She explained that their office only uses Kosair hospital and asked me what kind of insurance we have. I told her we had Anthem; she made a face and then glanced down at the newspaper sitting on the desk. The headline sayed something such as, "Norton Settles with Anthem."
Relieved, she said, "Oh, good, they have been arguing and Kosair wasn't accepting Anthem but it looks like they worked it out." She wrote the order for his stim test (growth hormone stimulating test) to take place at Kosair hospital. The appointment was set for December 15.
On December 23, we spoke with her and she diagnosed him with a growth hormone deficiency as he had failed both stimulation tests. She said she would order the growth hormones, order training for us to administer the shots, and that it was routine for them to do an MRI to check for pituitary or hypothalamus tumors before they start hormones.
Symptom tracker
Whitaker has increasingly shown signs of fatigue, lethargy and general lack of energy over the last few years. Despite wanting to be active and athletic, he struggles with coordination. One time last year he fouled out of a basketball game in the first quarter because he kept running into people. He also complains of headaches but not migraines. His headaches happen when exerting himself. After every soccer game, and playing hard in the back yard, he says the back of his head hurts. He also has severe headaches in the back of his head when he coughs. We just told him to drink more water and that he might not be in very good shape. Nice. I am sure that we have accused him of being lazy. We were hopeful (and still are) that the growth hormones would help give him the balance of what his body wasn't making for itself that would increase his energy level and improve his metabolism.
Tretter began having headaches followed by episodes of vomiting at age 3. We tried to track them to see if they were related to allergies, stress, nutrition, etc. Basically we got nowhere, but we did see a stress connection and lack of sleep connection. He had 4 or 5 migraines each year in Kindergarten through 2nd grade and we thought that they might be diminishing in frequency, but not by much. As he grew older, he became more able to tell us when he was getting one and sometimes he would fall asleep before he got sick; sometimes I could give him Motrin and it would help. Sometimes I could give him Motrin and it wouldn't help.
Tretter also has had problems with bladder control for his entire life.......not just bed-wetting at night, but during the daytime as well. He had to tinkle so often that I had his urine checked three times by 1st grade because I was sure he had a kidney infection or a bladder infection or kidney reflux or cancer or something. The urine tests always came back clean and clear and we were told not to worry that it could be just part of his constitutionaly delay.
In July 2009, Dr. M. was concerned about his continued lack of control and thought it might be physiological. He ordered an abdominal ultrasound and an abdominal x-ray to check for abnormalities or problems, and, again referred us to a specialist. We took him to a urologist in Louisville who will be referred to as "Dr. J." and he was so nice to Tretter. He reviewed the reports with us and explained that there is absolutely nothing physically wrong with his kidneys, bladder, urine, or anything in the urinary tract. This was a relief, obviously. Dr. J. said there are some meds available to help dry him up so he would not have to go so often. We were NOT keen on that idea at all, and he was seemed very pleased to prescribe him NOTHING. He joked with Tretter that all the old men in the waiting room would be jealous that he doesn't have problems with "dribbling." We left there both relieved and confused, but mostly just thankful for a clean report on the area. His bladder control problems continue, and we make it a "non-issue."
If he wets the bed, he climbs in our bed and says, "I'm sorry, I accidentally wet the bed."
I say, "That's okay, sweetheart, you don't have to be sorry. Climb in." That's the end of it.
I change the sheets often but what mom doesn't have to change the sheets often for one reason or another?
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