I am writing today to let everyone know that we did get Carter started on genatropin, a growth hormone medicine. He began this last monday, the 6th of Decemeber and it has gone very well. He hasnt cried or anything, and sometimes even watches at what we are doing. I am so proud of Carter. What a brave boy.
The last couple of days I have noticed that Carter is much more thirsty than normal...he wants to drink and drink water. Cody and I wonder if this is a sign that the medicine is working? We are optimistic it is.
Preschool has been also going great for Carter...His time has increased to 10 1/2 hours a week, where as before it was 4 hours. He is indeed tired when it is time to pick him up at 12:30 and is normally napping for me by 1 pm! On a good day, Camden naps at the same time! ;) This past week he has been coming home singing Christmas songs, "Jingle Bells", to be precise. Its so fun to listen to him sing and clap! He has also been saying 'up, down' while putting his arms up and down..There are so many other little things I cant even think of right now that are new, and i know he must have learned it at preschool. His aide, Carol, is just wonderful too..She is so great with Carter Dale.
Thats about all for now! God Bless and Merry Christmas!!
Saturday, December 18, 2010
Tuesday, November 2, 2010
Persistance Pays Off!
So, after my last blog a few things happened...first off- I remeasured Carter to find he wasnt quite as tall as I had thought he was...He got very carefully and repeatedly measured @ 37 1/2 to 38 inches...and I thought he was 38 1/2...1/2 an inch to an inch may not seem like much..but in his world, it is.
After measuring Carter and feeling very disappointed in a certain doctor..I decided that I didnt think Carter should have to wait another month and a half. I called Sanford Pediatric Clinic and told them that Carter needed to be seen sooner. His height was @ the 5%, his weight at or above the 100% mark. His feet are the size of a 2 year old, and he will be 4 on November 20. I sobbed at wondering how hard his heart could be pumping, because all his weight seems to be in his belly-surrounding his major organs. I sobbed because his feet are supporting much more weight than they should be..Twice as much weight as other children with his foot size. He has already had physical set backs, and as his mom was going to try and avoid any un-neccasary delays to my best ability.
Carter's previous pedatric endocrinologist left early august and moved to Kansas...and because he was on the outs, seemed to kind of blow of my concerns as a parent. He was errogant, plain and simple. He frowned upon the calorie-reduced diet that I had started Carter on...thought it was too restrictive. Didnt think that Carter was 'that big' and didnt want to do anything other than keep waiting. He was leaving, so to my husband and I, he appeared not to care because he wasnt going to be Carter's doctor any longer anyways. His numbers for his growth hormone function were below normal, supporting my suspicions in July.
Since July, Carter has continued to gain weight but not grow taller...his feet havent grown in over a year, his arms and legs are shorter than other children his age, not helping his physical abilities..(ex: climbing stairs, bending down to his feet, etc.) I have watched him fall off the growing curve for two years and really dont want to have to.
What we found out yesterday: Carter's new doctor~Dr. Laura Davis-Keppen~ is a more knowledgable and competent doctor. She has been practicing since 1984. She reviewed Carter's chart while in with us, apologizing to us for not having looked at his records prior. She first talked with my mom and I about Carter..our concerns. After looking at his charts, she saw that Carter has tested under the normal range for his IGF1 level in July, like we were aware of. She then noticed a time before that, that he had also tested under normal, but even more so..which we were NOT aware of. Dr. Karmazin never told us. Disappointment came over me- disappointment in the previous doctor but yet a bit of relief because that will hopefully aide in getting Carter the help and treatment he needs. Carters height measured at 38 inches and his weight at 50.9 lbs!! His BMI is clear the heck off the charts, which is her major concern. She believes his brain diagnosis is what is causing lack of growth. The pituitary gland is very close to the part of the brain that he is missing, his corpus callosum. She seems to want to get started on growth hormone asap and see what it does for Carter. The paper work is getting started today, however this takes a few weeks. Also, to further support the insurance company to pay for this high cost medicine, she ordered another Igf1 level, thyroid check, diabetes screen, and bone age test (x-ray his left hand)..This all happened yesterday right away. What a relief.
Carter will be starting here in a few weeks on a growth hormone medicine that is pre-filled and ready to give daily, in the form of a shot. A nurse will come to our house to show us how to properly administer this medicine. I am so thankful that persistance is paying off. I am so thankful for a well educated and experienced doctor. I am so thankful for my mom to support us by going with when Cody couldnt. I am so thankful for a determined 3 year old who let the nurses mess with his again yesterday. I am so thankful for many things.
Also, I should mention that I am back to calorie counting with Carter. A dietician would like to see his calories restricted to under 700-800 per day. If Carter is going to grow taller, they would like to see his weight not also increase. This is fine, I am more than happy to measure things out because it is in Carter's best physical interest.
Sorry if parts of this blog maybe didnt make sense, it only took me an hour or so to write because of interruptions with my boys!! lol
Thanks for reading!
After measuring Carter and feeling very disappointed in a certain doctor..I decided that I didnt think Carter should have to wait another month and a half. I called Sanford Pediatric Clinic and told them that Carter needed to be seen sooner. His height was @ the 5%, his weight at or above the 100% mark. His feet are the size of a 2 year old, and he will be 4 on November 20. I sobbed at wondering how hard his heart could be pumping, because all his weight seems to be in his belly-surrounding his major organs. I sobbed because his feet are supporting much more weight than they should be..Twice as much weight as other children with his foot size. He has already had physical set backs, and as his mom was going to try and avoid any un-neccasary delays to my best ability.
Carter's previous pedatric endocrinologist left early august and moved to Kansas...and because he was on the outs, seemed to kind of blow of my concerns as a parent. He was errogant, plain and simple. He frowned upon the calorie-reduced diet that I had started Carter on...thought it was too restrictive. Didnt think that Carter was 'that big' and didnt want to do anything other than keep waiting. He was leaving, so to my husband and I, he appeared not to care because he wasnt going to be Carter's doctor any longer anyways. His numbers for his growth hormone function were below normal, supporting my suspicions in July.
Since July, Carter has continued to gain weight but not grow taller...his feet havent grown in over a year, his arms and legs are shorter than other children his age, not helping his physical abilities..(ex: climbing stairs, bending down to his feet, etc.) I have watched him fall off the growing curve for two years and really dont want to have to.
What we found out yesterday: Carter's new doctor~Dr. Laura Davis-Keppen~ is a more knowledgable and competent doctor. She has been practicing since 1984. She reviewed Carter's chart while in with us, apologizing to us for not having looked at his records prior. She first talked with my mom and I about Carter..our concerns. After looking at his charts, she saw that Carter has tested under the normal range for his IGF1 level in July, like we were aware of. She then noticed a time before that, that he had also tested under normal, but even more so..which we were NOT aware of. Dr. Karmazin never told us. Disappointment came over me- disappointment in the previous doctor but yet a bit of relief because that will hopefully aide in getting Carter the help and treatment he needs. Carters height measured at 38 inches and his weight at 50.9 lbs!! His BMI is clear the heck off the charts, which is her major concern. She believes his brain diagnosis is what is causing lack of growth. The pituitary gland is very close to the part of the brain that he is missing, his corpus callosum. She seems to want to get started on growth hormone asap and see what it does for Carter. The paper work is getting started today, however this takes a few weeks. Also, to further support the insurance company to pay for this high cost medicine, she ordered another Igf1 level, thyroid check, diabetes screen, and bone age test (x-ray his left hand)..This all happened yesterday right away. What a relief.
Carter will be starting here in a few weeks on a growth hormone medicine that is pre-filled and ready to give daily, in the form of a shot. A nurse will come to our house to show us how to properly administer this medicine. I am so thankful that persistance is paying off. I am so thankful for a well educated and experienced doctor. I am so thankful for my mom to support us by going with when Cody couldnt. I am so thankful for a determined 3 year old who let the nurses mess with his again yesterday. I am so thankful for many things.
Also, I should mention that I am back to calorie counting with Carter. A dietician would like to see his calories restricted to under 700-800 per day. If Carter is going to grow taller, they would like to see his weight not also increase. This is fine, I am more than happy to measure things out because it is in Carter's best physical interest.
Sorry if parts of this blog maybe didnt make sense, it only took me an hour or so to write because of interruptions with my boys!! lol
Thanks for reading!
Wednesday, October 20, 2010
Preschool & Growth
Hey all! It has been such a long time since I have blogged...I looked back, and nearly two months has passed since my last entry. Things have been going fairly well for my family, particularly Carter. He was in his first day of preschool the last time I wrote and so I thought I would update anyone on how its been going for him. First off, he has only been going two mornings a week..tuesday and thursdays- from 9-11ish. I wanted to start him off slow since he is my special little guy, not just throw him in. Gradual with Carter is usually better than all at once for him. He has really been loving preschool. The first few times, he was ready to get out the door when I would come pick him up, then there have been a few times where he would see me but keep at his activity and kind of ignore me! :) There has been a time where he was ready to go, but then the teacher turned on the music to go with a book they were learning and he would go over by the cd player and dance and clap.
He has brought home lots and lots of paper work, colorings, projects, books, etc...from his preschool! I havent thrown away a single paper yet and want to keep all of them! :) I couldn't be more pleased with Carter. He is learning and creating! His schedule for preschool is going to change next month, November. He will be 4 on November 20th, which I can hardly believe, and so we will update his IEP. I am thinking of having him go two full days, so that he can get used to the schedule. This means he will go to school, eat breakfast, have morning activities, recess, free time, lunch, nap, and more preschool just like all the other children do. I hope he will adjust if thats how it plays out. I also hope that I can adjust! Anyways~ All in all preschool is going great for him. I love his teacher-Linda, her aide-Melissa, and Carter's very own personal aide-Michelle! They are all wonderful with him.
Carters next doctor appointment isnt until December 13, in Sioux Falls. He goes to his new pediatric endocrinologist, Dr. Laura Davis Keppen (SP?)...who took over because Carters last doctor moved to KS. I hope that she is a proactive doctor or we will be finding someone else to go to. As Camden grows, his feet are only about 1/2-3/4 inch smaller than Carters, but Carter is 2 1/2 years older! Also, Camden's legs are nearly as long as Carters now. Its crazy. We started the whole growth hormone testing, bone age x-rays, etc in January 2009...so 21 months ago...and Carter is not growing like he should. I as a mom am tired of waiting..I want to do something about his growth, about the size of his feet (balance issues), about the length of his arms and legs (stairs issues), not to mention that he is a good 5 or so inches shorter than other little boys his age. Which for a 3 year old, is a lot.
Thanks for reading and caring!! Bless you!
He has brought home lots and lots of paper work, colorings, projects, books, etc...from his preschool! I havent thrown away a single paper yet and want to keep all of them! :) I couldn't be more pleased with Carter. He is learning and creating! His schedule for preschool is going to change next month, November. He will be 4 on November 20th, which I can hardly believe, and so we will update his IEP. I am thinking of having him go two full days, so that he can get used to the schedule. This means he will go to school, eat breakfast, have morning activities, recess, free time, lunch, nap, and more preschool just like all the other children do. I hope he will adjust if thats how it plays out. I also hope that I can adjust! Anyways~ All in all preschool is going great for him. I love his teacher-Linda, her aide-Melissa, and Carter's very own personal aide-Michelle! They are all wonderful with him.
Carters next doctor appointment isnt until December 13, in Sioux Falls. He goes to his new pediatric endocrinologist, Dr. Laura Davis Keppen (SP?)...who took over because Carters last doctor moved to KS. I hope that she is a proactive doctor or we will be finding someone else to go to. As Camden grows, his feet are only about 1/2-3/4 inch smaller than Carters, but Carter is 2 1/2 years older! Also, Camden's legs are nearly as long as Carters now. Its crazy. We started the whole growth hormone testing, bone age x-rays, etc in January 2009...so 21 months ago...and Carter is not growing like he should. I as a mom am tired of waiting..I want to do something about his growth, about the size of his feet (balance issues), about the length of his arms and legs (stairs issues), not to mention that he is a good 5 or so inches shorter than other little boys his age. Which for a 3 year old, is a lot.
Thanks for reading and caring!! Bless you!
Saturday, September 11, 2010
Thursday, August 26, 2010
Worries...A Mothers worries never end!
In my darkest hours you can find me with nothing but worries...and anxiousness. I am sitting here on the couch, while Camden sleeps next to me and Carter is at his first day of preschool (without me)..I have anxiety because its not only his first day without me, but he had quite an eventful night last night. I woke up to his screaming around midnight last night and went to get him...I found him trembling,literally, and could tell it wasnt his normal, "I'm scared" cry, but rather a pain cry. He was shaking because the pain was so severe and we couldnt get his screams to stop. Cody tried to depress his shunt bubble and it wouldnt, like it normally does. We do this because if it does de-press then its most likely working properly. He tried again, still wouldnt..Mind you Carter was still screaming with pain..the tylenol I gave him didnt help. Cody informed me to start packing...so here I was, 12:30 at night...packing our bags to no doubt travel to Omaha immediately...My mind kept saying, this cant be happening. But, it was. As I pack our bags upstairs, Carters cries lessoned. I came down and Cody told me he thought he finally 'dented' it...The shunt obviously had so much pressure built up because it wasnt working properly, that Carter's head may have felt like it could explode? I don't know. Carter finally got some relief and wanted to fall back asleep.
This morning when he got up, it was as if nothing happened. As if we dreamt the whole thing. But it was real. I am so thankful that I have Cody to help with Carter's shunt. I could probably do the same if I had to, I just choose not to. I made a call to Carter's neurosurgeon this morning and am now waiting to hear back if he wants to see Carter or not. We are already going to Omaha sat. morning for an air show, and zoo on sunday..so if we need to go sooner, we can. I am wondering if his shunt pressure needs adjusted or what. It just seems like shunt problems have been frequent lately.
Please be in prayer for Carter. Well, I best be going soon...Gotta go pick him up from pre-school.
This morning when he got up, it was as if nothing happened. As if we dreamt the whole thing. But it was real. I am so thankful that I have Cody to help with Carter's shunt. I could probably do the same if I had to, I just choose not to. I made a call to Carter's neurosurgeon this morning and am now waiting to hear back if he wants to see Carter or not. We are already going to Omaha sat. morning for an air show, and zoo on sunday..so if we need to go sooner, we can. I am wondering if his shunt pressure needs adjusted or what. It just seems like shunt problems have been frequent lately.
Please be in prayer for Carter. Well, I best be going soon...Gotta go pick him up from pre-school.
Thursday, August 19, 2010
Days like today...
Days like today are a reminder to me to be grateful when Carter is himself..because when he is not himself, it takes everything out of me to convince myself that things will be ok. I do have faith that he will be ok, but when I am caught up in a moment, Its serious. Last saturday is a perfect example. Here Cody and I decided to go on a Shayla Bee donation ride and be there for a family who needed support..and Carter had an episode...We didnt really tell anyone or make a fuss because it was about another little boy that day...but i tell you what...I cried practically the whole way home from Spirit Lake...Carter must have had heat exhaustion...It wasnt too terribly bad outside in my opinion, but his medicine can cause him to not sweat and so his body isnt able to cool down..I cried on the way home because nothing I did would wake him up..nothing. I was SO scared that we needed to go to Omaha. Beyond scared.. I found myself asking God..WHY God? Why my Carter? Why is this happening? And I know GOd did tell me "trust me Jess"..When we got home...Carter finally woke up and it was as if the whole thing never happened. He was back to himself...his normal fun playful talkative self. I thank God every day when Carter (and Camden and all family and friends) are in good health!
Wednesday, July 28, 2010
Our new Shayla Bee Family!
Ok, so we have been on vacation this last week and I am just now getting the chance to blog! We-well Carter- received an incredible blessing last wednesday from a group of people called Shayla Bee. They are an awesome groiup of people who help families with children in medical crisis, permanent or temporary, children with special needs, etc with lower income...and someone (my friend Lindsay) nominated Carter and our family...The Shayla Bee Fund board voted and approved our family as the 31st family they have helped financially! We feel so excited to be able to get some much needed things to help Carters quality of life..We are wanting to purchase him a stroller- which is really turning out to be harder than I thought because of Carter's size..last night my best friend gave me an idea and so I am going to check into a few other avenues...Carter needs a stroller at times but yet there are times he really doesnt want to be in a stroller...he is mr. independent but yet does tire at times. Another thing we are looking at purchasing Carter is a mini trampoline with a handle...for those of you who know Carter well, you know that Carter LOVES to jump...and he doesnt get the exercise that other 3 yr olds do because of his diagnosis...so Cody and I really think that this would be right up his alley. Academically there are some things we are wanting to get also to help him more with learning...Learning for Carter means lots of repetition. What is left we are going to keep up for him so we can get other things as he grows.
So, Shayla Bee showed up at our house last wednesday...how they showed up was very awesome! Our little town of Rembrandt was awakened by a clan of 20+ motorcycles! We could hear them coming as they pulled off of Hwy 71 onto the blacktop coming into town, it was SO exciting to hear all these motorcycles and know that they were all coming for OUR CARTER! Carter absolutely loved the motorcycles and also the "Bee" that greeted him! I was concerned that he wouldnt know that all the noise and excitement was for him, but I think he had a pretty good idea as everyone was looking at him!! He was happy and loved it all! Thank you Shayla Bee for your generous hearts..this memory will never fade and brings tears to my eyes when I think about how you blessed our Carter and Us. What a GREAT group of people!
Also, we went to Sioux Falls on the 19th and have the results back from Carter's Pediatric Endocrinology appt..his thyroid functions came back all normal, so no worries there...but we also got the growth hormone (IGF1 level) back- just yesterday-and his numbers were not in normal range..Normal range is 54-178 and his # was 23...So we take him back in 6 months and if the # is again consistently low, it is very likely that Carter will begin growth hormone treatment. It is kinda good news in my opinion...kinda explains alot and makes sense with Carter..he has a BIG belly, always has appeared younger, is shorter for his age, etc etc. My maternal instincts have told me for a while now that there is an underlying issue as far as Carter's growth goes..
Well, thats all for now! Thanks for reading!
So, Shayla Bee showed up at our house last wednesday...how they showed up was very awesome! Our little town of Rembrandt was awakened by a clan of 20+ motorcycles! We could hear them coming as they pulled off of Hwy 71 onto the blacktop coming into town, it was SO exciting to hear all these motorcycles and know that they were all coming for OUR CARTER! Carter absolutely loved the motorcycles and also the "Bee" that greeted him! I was concerned that he wouldnt know that all the noise and excitement was for him, but I think he had a pretty good idea as everyone was looking at him!! He was happy and loved it all! Thank you Shayla Bee for your generous hearts..this memory will never fade and brings tears to my eyes when I think about how you blessed our Carter and Us. What a GREAT group of people!
Also, we went to Sioux Falls on the 19th and have the results back from Carter's Pediatric Endocrinology appt..his thyroid functions came back all normal, so no worries there...but we also got the growth hormone (IGF1 level) back- just yesterday-and his numbers were not in normal range..Normal range is 54-178 and his # was 23...So we take him back in 6 months and if the # is again consistently low, it is very likely that Carter will begin growth hormone treatment. It is kinda good news in my opinion...kinda explains alot and makes sense with Carter..he has a BIG belly, always has appeared younger, is shorter for his age, etc etc. My maternal instincts have told me for a while now that there is an underlying issue as far as Carter's growth goes..
Well, thats all for now! Thanks for reading!
Tuesday, July 6, 2010
Consuming Thoughts.
I am sitting alone in my kitchen in the quiet because Camden and Carter are both napping. Its nice to be in peace, but my head keeps thinking too much. As a Mom, it is natural to worry..As a mom of a special needs child, I worry even more. Carter brings me so much joy..That child is so special to me. I can't even begin to tell you just how special. I wanted him, even when I knew that he was maybe going to have problems, I WANTED him. He is such a blessing in my life and he has a PURPOSE. Some people may think that he doesnt know much, or that he doesnt always walk well..but that is not the case. Carter, if you would get to know him, could teach you more about life than some college professor. Carter has taught me to open my heart up to others, to love more. I never thought that I was close minded before Carter, but looking back- I was. Carter has taught me to never give up, to keep trying, to fight. Things have not come easily for him, but hes never stayed down after falling- he gets right back up. His personality is, let me try. Let me do it- on my own. But dont get me wrong, if he needs help- he will ask. Carter can be very passionate with the things he loves, ie: cars, swimming, walking. I have noticed how he studies things..He probably has 50 hotwheels and 1/2 of them he seems to know what they are...corvette (he says corbette), trailblazer, toyota, cadillac, etc etc. He can count to 20, he knows his ABC's...lately I have been pointing to many many different things asking, "whats that?", and 9 times out of 10 he knows...My son is learning...My son is amazing me...He is doing SO much more than the doctors once told me he would do. He is walking, he is talking, he is learning. And hes doing all of this while going thru surgeries here and there..6 surgeries for a 3 year old might not be a record breaker, but its a lot still. Agenesis of the Corpus Callosum and Hydrocephalus might he what his diagnosis is, but its not who he is.
Wednesday, June 30, 2010
Medicine, Speech and School
I am writing today to update everyone on Carter's progress with his new medicine, Topamax. We just started on week 3 on Monday so there is another 1 1/2 weeks til all he takes is the Topamax. The nuerontin is slowly decreasing. I definitely think that the weaning is going pretty good, although he still has been occasionally having his pain cries. I hope that in a couple weeks time we can be rid of the pain cries altogether but who knows if that will happen. The medicine definitely has helped tho..Its hard to think back at what he was doing and how he was acting before we started on this medicine. I am so thankful that the Neuro-opthamologist is such a wise man to see the brain irritation that the other doctors didnt, or else we could be in the horrific situation still.
Only time will tell if this medicine will help Carter shed a few pounds or atleast stop gaining weight. I hope and pray he can shed a few pounds because that would definitely make it that much easier to walk full time and not resort to hands and knees crawling like he tends to do. I really have been trying to choose healthier snacks too for Carter to assist in the efforts...for example: Grapes, madarin oranges, applesauce, peaches and cream, etc..all in all more fruit.
The other news I want to report is that in November we set a speech goal of 100 new spontaneous sentences spoken by Carter in 1 years time, or this coming November..I am pleased to report that we today are at 98 sentences! He has really been generating some funny things lately and I couldnt be more pleased with this talking and comprehension of what he is saying..Just today we were walking by a house and a man was out in his garage hammering something and Carter says, "What's he doing?"..I Said hes hammering..lol. And then when we got home he went to the backyard and wanted to get in the pool (As always!)- which was empty (bugs!) and so he said, "Where's the water?"..too funny..I just love how the communication lines are opening up for Carter!!
School- I know that a while back I talked about home schooling Carter..well, the decision has been made...I am not going to homeschool him. I have decided that Carter will indeed be attending pre-school this fall for two mornings a week. The decision came after securing an aide for him. That was the big deciding factor, if he could get an aide-his own aide- I would feel much better about him going to preschool. And he will have one, I am so thankful for that.
Please be in prayer for Carter's medicine, his walking, his moods and his temperament towrads his brother. There are times when I feel like I have to keep both eyes on him when him and Cam play together because Carter likes to push and shove..And then the next minute he can be hugging and kissing him...I guess boys will be boys! Thanks for reading!
Only time will tell if this medicine will help Carter shed a few pounds or atleast stop gaining weight. I hope and pray he can shed a few pounds because that would definitely make it that much easier to walk full time and not resort to hands and knees crawling like he tends to do. I really have been trying to choose healthier snacks too for Carter to assist in the efforts...for example: Grapes, madarin oranges, applesauce, peaches and cream, etc..all in all more fruit.
The other news I want to report is that in November we set a speech goal of 100 new spontaneous sentences spoken by Carter in 1 years time, or this coming November..I am pleased to report that we today are at 98 sentences! He has really been generating some funny things lately and I couldnt be more pleased with this talking and comprehension of what he is saying..Just today we were walking by a house and a man was out in his garage hammering something and Carter says, "What's he doing?"..I Said hes hammering..lol. And then when we got home he went to the backyard and wanted to get in the pool (As always!)- which was empty (bugs!) and so he said, "Where's the water?"..too funny..I just love how the communication lines are opening up for Carter!!
School- I know that a while back I talked about home schooling Carter..well, the decision has been made...I am not going to homeschool him. I have decided that Carter will indeed be attending pre-school this fall for two mornings a week. The decision came after securing an aide for him. That was the big deciding factor, if he could get an aide-his own aide- I would feel much better about him going to preschool. And he will have one, I am so thankful for that.
Please be in prayer for Carter's medicine, his walking, his moods and his temperament towrads his brother. There are times when I feel like I have to keep both eyes on him when him and Cam play together because Carter likes to push and shove..And then the next minute he can be hugging and kissing him...I guess boys will be boys! Thanks for reading!
Thursday, June 17, 2010
New medicine.
Monday morning Cody and I and the boys were up @ 4:30 to go to Omaha for a neurology appointment for Carter. His appt was @ 8:30 and so it was an early day! His neurologist, Dr. Pavcovik is a somewhat quiet guy, but very nice.
The medicine that Carter has been on is called Neurontin, which is a medicine that treats seizures, although Carter doesnt have and has never had seizures. He has what they call brain irritation and so it works to 'stabilize' Carter's brain. This medicine we started back in January, and although it has worked great for Carter, it has also caused weight gain for him. Monday I expressed my concern for Carters weight to this doctor only to find out there is another medicine out there he could be put on called Topamax. Topamax goes the other way, and may actually cause weight loss. Carter has gained about another 5 pds since January and I think 5 pds on him is like 20 pds on us. Carter has already faced a gross motor delay and so the weight gain doesnt help him out any. So Monday we started the switch, the doctor gave us a schedule to follow to wean Carter off of Neurontin and on to Topamax.
Since we starte this transition, I have noticed more unsteadiness, more pain cries, and a few more falls. I absolutely dislike that Carter has to go through this but I do know that the end result should be worth it for him..I pray I am right and that this medicine works as good or better than the Neurontin. Pleases pray the same for Carter.
It is so hard as a mom to watch my son go through brain irritation. No parent wants to see their child in pain. The irritation causes such painful headaches for Carter, the only good thing is that they never last too long; thank goodness. I honestly would trade places with Carter if I could. Sometimes I question why my son, why Carter, but then I try and remember that we all face our own battles..Some of them medical as Carter, some of them emotional, some very personal that no one else knows, some public for others to judge/critique, etc etc...I pray that thru Carter's some what public, some what personal medical and physical battles, he will come to rely on God fully when he needs to. I hope that one day he will look back and say- 'I went thru all of this so that God could use me to help others who are facing similar battles'.
I am so thankful for Carter, and also for Cody and Camden. It is very rewarding to have such a wonderful loving family and although times can be and are tough, having them makes it all much better. Thanks to our wonderful friends and family also who have given us support..Your kind words and help mean so much to us.
I will update as we get further into the 4 week weaning of the medicine and how it is working for Carter.
The medicine that Carter has been on is called Neurontin, which is a medicine that treats seizures, although Carter doesnt have and has never had seizures. He has what they call brain irritation and so it works to 'stabilize' Carter's brain. This medicine we started back in January, and although it has worked great for Carter, it has also caused weight gain for him. Monday I expressed my concern for Carters weight to this doctor only to find out there is another medicine out there he could be put on called Topamax. Topamax goes the other way, and may actually cause weight loss. Carter has gained about another 5 pds since January and I think 5 pds on him is like 20 pds on us. Carter has already faced a gross motor delay and so the weight gain doesnt help him out any. So Monday we started the switch, the doctor gave us a schedule to follow to wean Carter off of Neurontin and on to Topamax.
Since we starte this transition, I have noticed more unsteadiness, more pain cries, and a few more falls. I absolutely dislike that Carter has to go through this but I do know that the end result should be worth it for him..I pray I am right and that this medicine works as good or better than the Neurontin. Pleases pray the same for Carter.
It is so hard as a mom to watch my son go through brain irritation. No parent wants to see their child in pain. The irritation causes such painful headaches for Carter, the only good thing is that they never last too long; thank goodness. I honestly would trade places with Carter if I could. Sometimes I question why my son, why Carter, but then I try and remember that we all face our own battles..Some of them medical as Carter, some of them emotional, some very personal that no one else knows, some public for others to judge/critique, etc etc...I pray that thru Carter's some what public, some what personal medical and physical battles, he will come to rely on God fully when he needs to. I hope that one day he will look back and say- 'I went thru all of this so that God could use me to help others who are facing similar battles'.
I am so thankful for Carter, and also for Cody and Camden. It is very rewarding to have such a wonderful loving family and although times can be and are tough, having them makes it all much better. Thanks to our wonderful friends and family also who have given us support..Your kind words and help mean so much to us.
I will update as we get further into the 4 week weaning of the medicine and how it is working for Carter.
Saturday, June 5, 2010
Around the block!
Like sunlight burning at midnight, making my life so beautiful, beautiful! Carter makes my life beautiful.
I am astonished at his will and determination. We have a double stroller and lately Carter has been putting up a fight when I try and put him in it...Do you know why? You probably guessed it, he wants to walk HIMSELF!! And so last night we decided to let him go a long ways...and he did WONDERFUL! What a little miracle he is...He walked around a whole block!! And he only fell a couple of times...He even went up an incline! Cody and I were amazed at Carter's determination. Who would have thought a year ago that our little boy would be able to walk around the whole block!?!
Thank you Lord for all of Carter's accomplishments in this last year!! More to come later, family is calling!
I am astonished at his will and determination. We have a double stroller and lately Carter has been putting up a fight when I try and put him in it...Do you know why? You probably guessed it, he wants to walk HIMSELF!! And so last night we decided to let him go a long ways...and he did WONDERFUL! What a little miracle he is...He walked around a whole block!! And he only fell a couple of times...He even went up an incline! Cody and I were amazed at Carter's determination. Who would have thought a year ago that our little boy would be able to walk around the whole block!?!
Thank you Lord for all of Carter's accomplishments in this last year!! More to come later, family is calling!
Wednesday, June 2, 2010
Could I do it?
So, a friend of mine home schools her little boy, whom just turned 5. She has been homeschooling him for the past year and was asking me questions about Carter yesterday. We talked about how Carter will be going to school this fall @ Sioux Central. She asked, "Will he have his own aide?"...my response...I dont think so..she voiced her concern on Carter getting knocked down and/or bullied at school..I myself have wondered about him falling and not getting all the help that he is going to need and also other kids teasing him. As a parent, there are lots of worries...and as Carter being my first born, and him being special..I have a HUGE concern. Becky S if you are reading this, I do wish you lived here or I lived there. I believe that Carter is going to need his own aide and wonder if the school/teachers even realize this. Carter still falls down, he has fluid on his head which I think messes with him..Also, he is not potty trained yet...He doesnt always listen. Which I know that there are other kids with no diagnosis that fall in these categories.
Brings me to the question...Could I/Should I homeschool my Carter? My friend thinks that he would get much more attention (which he needs)...much more help with things, and she also believes that I am more than qualified. Thanks for the boost of confidence, but I am not sure if I believe I am..She said, all parents feel that way at first. So, heavy on my heart is this topic. What is best for my Carter? No one else, just him. Whats best for him? Please pray on this..I want to know what are my rights as his mother on homeschooling. Stay tuned for what happens next! BTW, Carter is still only 3!
Brings me to the question...Could I/Should I homeschool my Carter? My friend thinks that he would get much more attention (which he needs)...much more help with things, and she also believes that I am more than qualified. Thanks for the boost of confidence, but I am not sure if I believe I am..She said, all parents feel that way at first. So, heavy on my heart is this topic. What is best for my Carter? No one else, just him. Whats best for him? Please pray on this..I want to know what are my rights as his mother on homeschooling. Stay tuned for what happens next! BTW, Carter is still only 3!
Thursday, May 27, 2010
What a big boy!
Well..I have some good news to share..Carter has been sleeping in his own big boy bed since last saturday! Cody and I talked about switching rooms around in our house...We didnt have an ac unit for our upstairs because our central air doesnt seem to cool it up there like it should and so we hadnt really utilized our house to the fullest...well, now we are! Last saturday we switched rooms around...we brought the bunk beds that my parents got for Carter and Camden downstairs and took our bed upstairs! It was actually alot of work and was more like a 2 day process, but all worth it now! The hardest part was taking our armoire upstairs (just Cody and I)..I am not sure, b ut maybe because Carter is now sleeping in our old room he feels comfortable? Anyways, 3 out of 4 nights he slept completely sound..only woke up 1 of the nights and not for very long. It is so nice to be able to stretch out a little more in my own bed, you would be surpised at how much of a bed hog Carter can be! lol.
Anyways,everything is much more organized...Carter and Camden have their own rooms and mommy and daddy have our own space as well! I am actually loving it much more than I thought I would!!
Carter has been doing fairly well lately..He is amazing me at the new sentences he has been putting together..Yesterday morning he told Camden that he was making a mess..the other day he said "I hurt my toe, kiss it!"...In the bathroom he said to Camden "Get outta there Camden"...and also yesterday he said "Take the bags!" when we were leaving...like I have said before, the speech itself has been great, its the learning and comprehension that I am excited about...He will be in preschool in 3 months and I am excited and nervous at the same time! He has been proving to me though what a determined little fighter he is, both physically and mentally..Thank you Lord for such a persistant little man! I am sad to say that he had his last speech session with Wendy yesterday, which is because summer is here and he will get it in school this fall...We lost his PT, which makes me even more sad because Barb has had him since he was about a month old. :( His OT, Katie, whom he likes to flirt with is getting married and moving this summer, which I understand..and his teacher from the school never ever came and then I found out she quit...so I kinda feel like we are in limbo right now...I do work with Carter myself with all areas, but it is nice to have others here to help Carter along.
Anyways,everything is much more organized...Carter and Camden have their own rooms and mommy and daddy have our own space as well! I am actually loving it much more than I thought I would!!
Carter has been doing fairly well lately..He is amazing me at the new sentences he has been putting together..Yesterday morning he told Camden that he was making a mess..the other day he said "I hurt my toe, kiss it!"...In the bathroom he said to Camden "Get outta there Camden"...and also yesterday he said "Take the bags!" when we were leaving...like I have said before, the speech itself has been great, its the learning and comprehension that I am excited about...He will be in preschool in 3 months and I am excited and nervous at the same time! He has been proving to me though what a determined little fighter he is, both physically and mentally..Thank you Lord for such a persistant little man! I am sad to say that he had his last speech session with Wendy yesterday, which is because summer is here and he will get it in school this fall...We lost his PT, which makes me even more sad because Barb has had him since he was about a month old. :( His OT, Katie, whom he likes to flirt with is getting married and moving this summer, which I understand..and his teacher from the school never ever came and then I found out she quit...so I kinda feel like we are in limbo right now...I do work with Carter myself with all areas, but it is nice to have others here to help Carter along.
Thursday, May 13, 2010
A new revelation..
Over the past couple of days, in preparation for Cody leaving for Canada...I have been constantly reminded how much I love my husband and my boys. Thank you Lord for giving me this reminder in a new and different light.
I have thought about how very different my life could be if I hadn't met Cody 8 years ago..and how very blessed I am to have him in my life. Thank you Lord for my husband and for my two boys.
Today as I sat on the couch, feeding Camden, he fell asleep..so peacefully. I couldnt help but think what happened exactly a year ago today, Camden was born! And as I look at him my heart skips a beat because of the happiness and joy Camden has brought to me..I think, "Wow, Lord..you have entrusted these two wonderful little boys to me and Cody." Carter at the same time was getting exhausted...he went and got his pillow and brought it to the couch...he wanted to hold my hand. The next time I looked at him, he was sleeping! I can't help but also think of my Carter today while reflecting on the past year since Camden was born. Carter has been through so much and I truly think that everyone could learn something from Carter if they spent time with him. He is a miraculous little boy. How I love my family.
Thank you Lord for this new revelation when looking at my family..they mean more to me than words could ever say!
I have thought about how very different my life could be if I hadn't met Cody 8 years ago..and how very blessed I am to have him in my life. Thank you Lord for my husband and for my two boys.
Today as I sat on the couch, feeding Camden, he fell asleep..so peacefully. I couldnt help but think what happened exactly a year ago today, Camden was born! And as I look at him my heart skips a beat because of the happiness and joy Camden has brought to me..I think, "Wow, Lord..you have entrusted these two wonderful little boys to me and Cody." Carter at the same time was getting exhausted...he went and got his pillow and brought it to the couch...he wanted to hold my hand. The next time I looked at him, he was sleeping! I can't help but also think of my Carter today while reflecting on the past year since Camden was born. Carter has been through so much and I truly think that everyone could learn something from Carter if they spent time with him. He is a miraculous little boy. How I love my family.
Thank you Lord for this new revelation when looking at my family..they mean more to me than words could ever say!
Tuesday, May 4, 2010
A response to a question..
Yesterday I was asked "How is Carter doing since last week?"...and I responded that he has been incredibly well since the last 'incident' we had on Wednesday. For those of you who follow, you know that we were all packed up and ready to go to Omaha last wednesday morning cause Carter was showing shunt malfunction symptoms. Well, let me tell you the events of that morning.
Cody depressed Carter's shunt bubble and it was extremely slow to refill..which was an 'oh no'...Cody went and showered that morning, came back up and again depressed Carters shunt bubble. This time it refilled much quicker. Praise the Lord! There was indeed, no doubt in our minds, a blockage in the tube that drains all the extra CSF fluid from Carter's brain...it had miraculously pushed through when Cody depressed his bubble..What a relief..Carter started acting like himself and by two hours later, you wouldnt have known the incident even happened. We know that God is faithful, even if we would have had to go to Omaha again, God is faithful. He is holding Carter in His hands, that is so clear to us. Just yesterday we visited a neighbor who is back in the area right now after being gone for a couple of years..She looked at Carter and said' He is doing good!"..It is so great to hear that from people! Carter is doing well! Yesterday a certain pretty young, blonde Occupation Therapist visited our house as she does every month and Carter did things for her with much more ease and you could tell she was thrilled! He did blocks, strang large beads on a straw type rope, did a piece of a puzzle, etc..Carter is developing..Comprehensively, Occupationally, Physically..and we couldnt be more happy for our son.
The other night Camden was sleeping in his crib already and Carter said "He's in time out in the boy's room!"...obviously thinking that Camden got a 'time out' since the bedroom door was shut..How funny!
Gross motor wise- let me update you. Carter still crawls..let me tell you that..He will crawl if he wants to...Yes, Carter CAN WALK...but Yes, Carter still falls down..But as my mom says "We don't know how Carter feels or how we would feel if we had a big pocket of fluid on our brains messing with our equilibrium. If you see Carter crawling, its because he knows his self and his capabilities at that moment better than we do..He may be feeling dizzy and so he crawls..but Yes, he does walk and is getting much faster at walking!
Thats all I have for now! God Bless!
Cody depressed Carter's shunt bubble and it was extremely slow to refill..which was an 'oh no'...Cody went and showered that morning, came back up and again depressed Carters shunt bubble. This time it refilled much quicker. Praise the Lord! There was indeed, no doubt in our minds, a blockage in the tube that drains all the extra CSF fluid from Carter's brain...it had miraculously pushed through when Cody depressed his bubble..What a relief..Carter started acting like himself and by two hours later, you wouldnt have known the incident even happened. We know that God is faithful, even if we would have had to go to Omaha again, God is faithful. He is holding Carter in His hands, that is so clear to us. Just yesterday we visited a neighbor who is back in the area right now after being gone for a couple of years..She looked at Carter and said' He is doing good!"..It is so great to hear that from people! Carter is doing well! Yesterday a certain pretty young, blonde Occupation Therapist visited our house as she does every month and Carter did things for her with much more ease and you could tell she was thrilled! He did blocks, strang large beads on a straw type rope, did a piece of a puzzle, etc..Carter is developing..Comprehensively, Occupationally, Physically..and we couldnt be more happy for our son.
The other night Camden was sleeping in his crib already and Carter said "He's in time out in the boy's room!"...obviously thinking that Camden got a 'time out' since the bedroom door was shut..How funny!
Gross motor wise- let me update you. Carter still crawls..let me tell you that..He will crawl if he wants to...Yes, Carter CAN WALK...but Yes, Carter still falls down..But as my mom says "We don't know how Carter feels or how we would feel if we had a big pocket of fluid on our brains messing with our equilibrium. If you see Carter crawling, its because he knows his self and his capabilities at that moment better than we do..He may be feeling dizzy and so he crawls..but Yes, he does walk and is getting much faster at walking!
Thats all I have for now! God Bless!
Wednesday, April 28, 2010
Battle of the Brain...
You have heard this expression, yes? Well me too. I have a different take on this phrase than many though. Let me explain.
This morning started out early, Camden slept the entire night however was up @ 4:30! A little early, but hey I didnt have to wake up in the night so I brewed some coffee and started my day. Cody came out of the room around 5:30 with Carter..talking about how Carter had been awake also and so he figured they just as well get up with us. Carter fell back asleep on Daddy once they came into the living room...He slept..normal because it was early. Well, by 6:15 he wasnt acting himself. He had that 'distant' look in his eyes and when I saw it I had the worst feeling in the pit of my stomach. You see when there is a battle of the brain in our house, thats just what it is. With the extra CSF fluid in Carter's head, you just never know what can happen and when. All Carter wanted to do this morning was lay down, whine, not let daddy go, cry, sleep, etc. Not good. We checked his temp, normal @ 97-98. Okay, Cody and I decided not to freak out, hard when its OUR son and this has happened countless numbers of times with him. We hate seeing our son go through these things. So, after deciding not to jump the gun, Carter threw up. Cody said "Okay, we are going (Omaha)"...but as we are running around like chickens with our heads cut off, Carter begins to act better. That is the point we have been at for a few hours. He hasnt gotten sick again and has been acting completely himself. Now we wait with all eyes glued to him.
As I was busy preparing to go to Omaha, all I could do was cry. I look at Carter, the miracle he is, and still wonder WHY MY SON? Why Carter!!!!!!!!!? I really dont understand why he has to go through all this, why he had to be born with fluid on his brain? Why the shunt malfunctions? Why Lord?! I plead with God to take away all health issues and to just completely and 100% heal my son. It is the worst feeling when there is nothing you can do to help. Oh how I love my son Carter (and Camden too!)..Please keep Carter in your prayers.
This morning started out early, Camden slept the entire night however was up @ 4:30! A little early, but hey I didnt have to wake up in the night so I brewed some coffee and started my day. Cody came out of the room around 5:30 with Carter..talking about how Carter had been awake also and so he figured they just as well get up with us. Carter fell back asleep on Daddy once they came into the living room...He slept..normal because it was early. Well, by 6:15 he wasnt acting himself. He had that 'distant' look in his eyes and when I saw it I had the worst feeling in the pit of my stomach. You see when there is a battle of the brain in our house, thats just what it is. With the extra CSF fluid in Carter's head, you just never know what can happen and when. All Carter wanted to do this morning was lay down, whine, not let daddy go, cry, sleep, etc. Not good. We checked his temp, normal @ 97-98. Okay, Cody and I decided not to freak out, hard when its OUR son and this has happened countless numbers of times with him. We hate seeing our son go through these things. So, after deciding not to jump the gun, Carter threw up. Cody said "Okay, we are going (Omaha)"...but as we are running around like chickens with our heads cut off, Carter begins to act better. That is the point we have been at for a few hours. He hasnt gotten sick again and has been acting completely himself. Now we wait with all eyes glued to him.
As I was busy preparing to go to Omaha, all I could do was cry. I look at Carter, the miracle he is, and still wonder WHY MY SON? Why Carter!!!!!!!!!? I really dont understand why he has to go through all this, why he had to be born with fluid on his brain? Why the shunt malfunctions? Why Lord?! I plead with God to take away all health issues and to just completely and 100% heal my son. It is the worst feeling when there is nothing you can do to help. Oh how I love my son Carter (and Camden too!)..Please keep Carter in your prayers.
Monday, April 19, 2010
A Parent's Love
Yesterday, we visited the park here in Rembrandt with My sister Tara, her three kids, and my mom. We had a great time there. I got to play tag with Hanna and Rilyn, which was great exercise! :) I had Camden in there infant/toddler swing and he swang for probably 15 minutes and loved it! Carter got to swing with Daddy in the tire swing and loved that too! I was just having so much fun that Carter wanted to sit on my lap...He got on my lap but it was hard to keep his 45 pound frame balanced on me and still hold onto him and the chain link swing...I tried...My efforts failed. I could have chosen to fall face forward in the swing, and fall on him..Or instintively hold the chain with my arm, the inside of my elbow to catch my fall. What do you think happened? Yep, I caught my fall..Did not want to Carter to get hurt because of me, I caught myself and hurt my arm. Today, forgetting about the whole episode, I bent my arm...and remembered. Ouch does it hurt today. But thats okay...I would rather it be me than Carter. I would choose the same consequence over and over to save my child from pain.
This brings me to think about what we as parents do to protect our children. Sure, we wont always be able to save them from all pain and heartache..but we will try! I am sure that all of you would have done the same for your child(ren). I know that Carter has had more pain in his life already than I have had to endure my whole life. He has had surgery in his brain six times..more than any child or person should have to in my opinion. I will fight for my child til the end. I will be his and Camdens #1 advocate..I will be there whenever he or they need me..and that is a promise..I love my children so much and would do anything for them. Wow, with that thought~ we know that God loves us SO much more than we love our own children..thats what the bible teaches us. Ponder that today..Thats alot of love..Think of what Christ did for us so we can be saved from our sins. He didnt just get a hurt arm as I did, he was crucified on the cross for us. Thank you Lord for that!
Grace= God's riches at Christ's expense.
Have a great day everyone!
This brings me to think about what we as parents do to protect our children. Sure, we wont always be able to save them from all pain and heartache..but we will try! I am sure that all of you would have done the same for your child(ren). I know that Carter has had more pain in his life already than I have had to endure my whole life. He has had surgery in his brain six times..more than any child or person should have to in my opinion. I will fight for my child til the end. I will be his and Camdens #1 advocate..I will be there whenever he or they need me..and that is a promise..I love my children so much and would do anything for them. Wow, with that thought~ we know that God loves us SO much more than we love our own children..thats what the bible teaches us. Ponder that today..Thats alot of love..Think of what Christ did for us so we can be saved from our sins. He didnt just get a hurt arm as I did, he was crucified on the cross for us. Thank you Lord for that!
Grace= God's riches at Christ's expense.
Have a great day everyone!
Thursday, April 15, 2010
Great News
On Monday, my mom and I took Carter to his checkup in Omaha. Camden came also. Carter saw his neurosurgeon, Dr. Hellbusch, and had a routine cat scan and doctor visit. Cody couldnt come because of how busy he is at work right now. The mri tech was really good with Carter and gave him a chin strap and football helmit (both out of washclothes and tape) to keep his head still..we dont need him to move or it has to be re-done. He did pretty good..put up a little fight, but hey-thats Carter. :) When she has done, she told him touchdown and he gave her a high five and a pound. It was cute.
The scan looked pretty much exactly the same from his last scan...which is what we want to see...no increased fluid in his brain. We were told that Carter does not have to be seen for a year! While this is great news- keep in mind that a shunt malfunction cam happen at any time- doctors have no way of knowing this either. We pray against any malfunctions!
Carter has really been progressing lots lately..and it is SO awesome to see! He recently learned how to kick a ball..and he does it with both feet too..another brain obstacle he has overcome! Today he kicked the ball and then asked "Where is it?"--the words aren't out of the ordinary, he talks ALL THE TIME...but his comprehension is improving! He also said he has brown eyes and that "Camden is funny" when he heard Camden babbling. These are just a few examples..
I feel so blessed to have Carter, Camden and Cody in my life..I can't wait to see whats in store for our family!
The scan looked pretty much exactly the same from his last scan...which is what we want to see...no increased fluid in his brain. We were told that Carter does not have to be seen for a year! While this is great news- keep in mind that a shunt malfunction cam happen at any time- doctors have no way of knowing this either. We pray against any malfunctions!
Carter has really been progressing lots lately..and it is SO awesome to see! He recently learned how to kick a ball..and he does it with both feet too..another brain obstacle he has overcome! Today he kicked the ball and then asked "Where is it?"--the words aren't out of the ordinary, he talks ALL THE TIME...but his comprehension is improving! He also said he has brown eyes and that "Camden is funny" when he heard Camden babbling. These are just a few examples..
I feel so blessed to have Carter, Camden and Cody in my life..I can't wait to see whats in store for our family!
Monday, April 5, 2010
Its been awhile...since I have blogged!
Hello everyone...It seems like forever since I have updated my blog. I think that both good and bad things have happened since the last post...Lets start with the good. Carter has grown!
We went to Carter's Pediatric Endocrinologist back in february...from August 2009 to February 2010, Carter grew a whole inch! It was so exciting because that meant that growth hormone treatments were not going to happen (atleast now they aren't), because Carter was growing finally after a year of hardly any growth. Carter was between the 3 and 4 percentile in August and climbed up a little bit when checked in February...Carter is now 37 inches!! I measured the little guy again this morning and Carter has literally grown another inch and a half since the beginning of February! YAY! That puts him at the 16th percentile- which is definitely a step in the right direction. With Cody being 6'5'' I just didnt believe that Carter was/is going to be short. :) Maybe not as tall as Daddy but definitely taller than me (5'5"). Some of you may wonder, "Well why worry about this?"...well because the pituitary gland which controls growth is near where he has his fluid on the brain..so yes, there is some cause for concern! Now I am just praying for his feet to grow for more stability for walking, they are still smaller than the average 3 yr old.
The bad: Let me first tell you that I am happy to report that there has been more good than bad, but some bad has come our way..Its the pain that Carter experiences and has to deal with. No, this is nothing new. But, its been a little different lately. Yesterday, Easter day, Carter kinda screamed out of no where and covered his eyes with his arms...he had a headache..It was very evident. Poor little guy. We gave him tylenol, but he went on like this for a while, clenching onto his Daddy. Usually the pain he experiences is gone just as quick as it lasted, but that was not the case for him yesterday.. Please pray for Carter, he was so worked up and in so much pain that he wouldnt even tell me what was hurting..there have been times in the past where he would point to where it hurt.
CAMDEN~
Camden is getting around...He has been crawling like a little professional, pulling up to anything and everything and cruising occasionally. I have even caught him standing in the middle of the room..he let go after pulling up. Its really cute to watch. He definitely is getting more attitude and personality now also. Carter and Camden are playing together much better too lately, although I still have to keep an eye on Carter so he doesnt push Camden. Guess what Camden did the other day..Yep, you guessed it. HE pushed Carter! Ornery boys I tell ya!
Next Monday is a trip to Omaha for Carter. Please for a good check up with his neurosurgeon.
Thanks for all your prayers!
We went to Carter's Pediatric Endocrinologist back in february...from August 2009 to February 2010, Carter grew a whole inch! It was so exciting because that meant that growth hormone treatments were not going to happen (atleast now they aren't), because Carter was growing finally after a year of hardly any growth. Carter was between the 3 and 4 percentile in August and climbed up a little bit when checked in February...Carter is now 37 inches!! I measured the little guy again this morning and Carter has literally grown another inch and a half since the beginning of February! YAY! That puts him at the 16th percentile- which is definitely a step in the right direction. With Cody being 6'5'' I just didnt believe that Carter was/is going to be short. :) Maybe not as tall as Daddy but definitely taller than me (5'5"). Some of you may wonder, "Well why worry about this?"...well because the pituitary gland which controls growth is near where he has his fluid on the brain..so yes, there is some cause for concern! Now I am just praying for his feet to grow for more stability for walking, they are still smaller than the average 3 yr old.
The bad: Let me first tell you that I am happy to report that there has been more good than bad, but some bad has come our way..Its the pain that Carter experiences and has to deal with. No, this is nothing new. But, its been a little different lately. Yesterday, Easter day, Carter kinda screamed out of no where and covered his eyes with his arms...he had a headache..It was very evident. Poor little guy. We gave him tylenol, but he went on like this for a while, clenching onto his Daddy. Usually the pain he experiences is gone just as quick as it lasted, but that was not the case for him yesterday.. Please pray for Carter, he was so worked up and in so much pain that he wouldnt even tell me what was hurting..there have been times in the past where he would point to where it hurt.
CAMDEN~
Camden is getting around...He has been crawling like a little professional, pulling up to anything and everything and cruising occasionally. I have even caught him standing in the middle of the room..he let go after pulling up. Its really cute to watch. He definitely is getting more attitude and personality now also. Carter and Camden are playing together much better too lately, although I still have to keep an eye on Carter so he doesnt push Camden. Guess what Camden did the other day..Yep, you guessed it. HE pushed Carter! Ornery boys I tell ya!
Next Monday is a trip to Omaha for Carter. Please for a good check up with his neurosurgeon.
Thanks for all your prayers!
Thursday, March 11, 2010
Different...not better but different
I can definitely say that I am not used to my little Camden pulling himself up so early and also crawling...This very same task wasnt accomplished for my Carter until he was roughly 13-14 months...perhaps even a little later than that for full blown crawling (Carter army crawled for quite some time!)...I watch how naturally it is coming to Camden to crawl and pull himself up to things..his strength..Its just different, not better but different. Carter has always had to work a little harder to get to the same place or get the same results. And because of this, Carter is one persistant determined little man! I pray daily that as life goes for Carter that his mobility will get easier and easier..and I do think it will. I want him to just go- without giving it much thought. If any of you out there have any questions about Carter, I want you to know that I welcome them, in reason. Carter's diagnosis is Agenesis of the Corpus Callosum, meaning he is missing the middle part of his brain. This middle part is what communicates between the left half and right half of the brain. It was something that I had never heard of before my pregnancy with Carter. It was then described to me as a road. Lets say you and I take the interstate to get from point A to point B..Well, Carter's brain would have to take a gravel road..his trip may be a little more bumpy but all and all he gets to his destination..and once he does...his brain will pave that gravel road...and walla! its a blacktop..He IS learning and that is what is important! It is so encouraging to watch him learn too. He can count to 20, he knows his ABC's, he loves MUSIC..I definitely think that music is going to be a part of his life going forth! He is constantly singing song after song..Even songs that I dont think he knows, he proves me wrong and blurts the words out to me!
Again, I welcome questions. The point of this blog is to bring awareness to ACC and what we face daily.
Friday, February 26, 2010
learning
Carter is learning, he really is..and it is SO exciting. However- when I look at the sentences other kids his age or close to his age are saying..it saddens me a little..When I look and see the comprehension that they have it also saddens me. Dont get me wrong..Carter has some comprehension...and he is progressing everyday...but some days..I feel impatient and like a bad mother...I find myself yelling at him..and then I feel bad..because-does he understand completely? (tears-sigh)
I found myself yelling at Carter today because he pushed Emma down three steps...I am thankful she didnt fall down the whole set going down to the basement. Poor Emma was crying and wondering why Carter would do such a thing to her..I held her and made sure she was ok. Carter- that was SO NAUGHTY I tell him...DO NOT PUSH! It upsets me, I dont want her or anyone to get hurt.
I need insight from other mothers with issues like this...I need patience..I need more love. Please pray for this.
-Jess
I found myself yelling at Carter today because he pushed Emma down three steps...I am thankful she didnt fall down the whole set going down to the basement. Poor Emma was crying and wondering why Carter would do such a thing to her..I held her and made sure she was ok. Carter- that was SO NAUGHTY I tell him...DO NOT PUSH! It upsets me, I dont want her or anyone to get hurt.
I need insight from other mothers with issues like this...I need patience..I need more love. Please pray for this.
-Jess
Monday, February 22, 2010
The point...
If I have not said so yet, the point of this blog is to bring more awareness to what my family faces every day. More so, what Carter faces..but when we are all here, we face this hand in hand together. The point of this blog, if I have done a good job, is to make people more compassionate for 'others'. To not think of themselves on a higher level than others, to love others as Christ loved and loves us. There are days when I am more compassionate with Carter than others. Days where I show more patience with him and love..and I pray that I can always have this feeling in my heart. So what just happened to make blog right now? Anytime I blog its because something happens that stirs my heart. Today has been a pretty normal day at my house...Carter has been having a fairly good day...Thank the Lord...but out of no where...He screamed. PAIN. He had a really loud pain cry...I havent heard his pain cry for a while and so it definitely caught me off guard and made me feel sad. Although this new medicine is helping, its not 100%. But I do know its benefitting my Carter. Please keep Carter in your prayers...He is still on an obstacle course..one that I wish I knew the way out of, but dont..One that only God can lead him to the end of. Wow, do I love my two boys.
Friday, February 19, 2010
Update on Carter & Camden
I am able to have some time to update the blog today..Carter is sleeping and Camden is on the floor entertaining himself (trying to crawl!)...Things have definitely gotten better since the last time I blogged about Carter..the medicine 2 weeks ago was still 'if-y"...Now- it seems to be working, or atleast helping. He doesnt make his noise quite as much, doesnt seem to be dizzy as much and just seems to be more like himself..which is such a relief.
His PT, Barb, saw him today for the first time in 3 months and the first thing she noticed was his height! YAY for Carter growing! She was impressed by his physical gross motoring also and didnt really give us much homework... :) She does want us to work on Carter and steps though, holding his hand while going up and down with him..
We went to Sioux Falls last thursday for his Pediatric Endocrinologist appt with Dr Karmazin at Sanford Childrens clinic..that went well. Carters level was 4.95 and the cutoff is 4.94..The doctor told me that because he has been growing (1 1/2 inches since August) that we dont need to put Carter back on synthroid...we would simply just be treating a number. If I see in a few months that hes acting sluggish or any other of the classic thyroid symptoms, we can get his levels rechecked locally, but otherwise we dont have to go back to him for a year!
Camden- Camden is really becoming a little man! His personality is certainly coming out..Getting opinionated with what he eats...he just wants whatever we are having...not any of that meat stuff that comes in a jar! :) lol So far Cam has had bread, ground beef (small!!), chicken (small!!), banana, and spaghetti-actually angel hair noodles! He loves all of that too! He chomps with his ONE tooth so cute too. Camden is also trying to crawl...He gets on all fours-rocks, and moves ahead a couple steps....so he is SO close..Its definitely fun to watch him try and figure it out. Carter didnt crawl til, well, he was well over a year old because of all the obstacles he has had to overcome..
Carter and Camdens relationship is seeming to develop more lately also, which is so great to see. Just today Carter took his bread and broke off small pieces (like he sees me do!) and was giving them to Camden...He also tried to give him a drink of water and the list goes on.
Cody and I have been discussing the possibility of a 3rd child lately...If its even an option with our vehicle and house..Hey, its good to first talk about this, right? I still want to a girl someday, we will just have to see if that could/would happen!
More to come later! God Bless, Jess :)
His PT, Barb, saw him today for the first time in 3 months and the first thing she noticed was his height! YAY for Carter growing! She was impressed by his physical gross motoring also and didnt really give us much homework... :) She does want us to work on Carter and steps though, holding his hand while going up and down with him..
We went to Sioux Falls last thursday for his Pediatric Endocrinologist appt with Dr Karmazin at Sanford Childrens clinic..that went well. Carters level was 4.95 and the cutoff is 4.94..The doctor told me that because he has been growing (1 1/2 inches since August) that we dont need to put Carter back on synthroid...we would simply just be treating a number. If I see in a few months that hes acting sluggish or any other of the classic thyroid symptoms, we can get his levels rechecked locally, but otherwise we dont have to go back to him for a year!
Camden- Camden is really becoming a little man! His personality is certainly coming out..Getting opinionated with what he eats...he just wants whatever we are having...not any of that meat stuff that comes in a jar! :) lol So far Cam has had bread, ground beef (small!!), chicken (small!!), banana, and spaghetti-actually angel hair noodles! He loves all of that too! He chomps with his ONE tooth so cute too. Camden is also trying to crawl...He gets on all fours-rocks, and moves ahead a couple steps....so he is SO close..Its definitely fun to watch him try and figure it out. Carter didnt crawl til, well, he was well over a year old because of all the obstacles he has had to overcome..
Carter and Camdens relationship is seeming to develop more lately also, which is so great to see. Just today Carter took his bread and broke off small pieces (like he sees me do!) and was giving them to Camden...He also tried to give him a drink of water and the list goes on.
Cody and I have been discussing the possibility of a 3rd child lately...If its even an option with our vehicle and house..Hey, its good to first talk about this, right? I still want to a girl someday, we will just have to see if that could/would happen!
More to come later! God Bless, Jess :)
Wednesday, February 3, 2010
Why...
Why are some days the exact same as the day before but I am not? I mean how come I felt strong yesterday and so weak today? I am having a day where it is SO HARD to watch Carter flutter and roll his eyes...Its SO HARD to see his eyes fill up when this happens...Its SO HARD to see him fall down because he is so unsteady. Its SO HARD to feel so helpless. I am praying that this medicine will work, but is it? We started the 7.5 ml dose this morning, which is what his normal dose is supposed to be. We have to sort of 'build' it up in his system. Cody and I question what it is doing for him, if anything. Its not easy to get him to take the med to begin with..and if its doing nothing for him, almost feel like giving up. Of course we can't...cause maybe we just need more time!?
I sit here today with my two boys and think about this world we live in. How hard it can be sometimes and pray that they will find joy and happiness in every day. I pray that Carter wont get made fun of, and I pray that he will surpass everyones expectations. I know all things are possible. Right now I just want to get over this hump of 'brain disturbance.' I hope it will go away. I need to get out, to do something, cause today is eating me up!
Tears, Jess
I sit here today with my two boys and think about this world we live in. How hard it can be sometimes and pray that they will find joy and happiness in every day. I pray that Carter wont get made fun of, and I pray that he will surpass everyones expectations. I know all things are possible. Right now I just want to get over this hump of 'brain disturbance.' I hope it will go away. I need to get out, to do something, cause today is eating me up!
Tears, Jess
Thursday, January 21, 2010
So much hope, yet so much uncertainty at times
I am writing today as I am sitting here in my living room observing Carter. We are listening to Serious XM, the Message.. Carters favorite. I really believe that he knows ALL the songs that they play on this channel..I hear him sing a word, a lyric, or even most of the song at times. Its wonderful. In listening to this I feel such hope, such excitement, such " I knew he was capable!" He looks at me with his lit up eyes and continues to sing and I feel a tear fall down my cheek. I think, "Thank you Lord for the gift of this child, what a blessing he is." Even as I sit here to type out my thoughts so that you can read them, I cry. I love my boys so much and even though there are times where I feel like I dont have any patience or cant take anymore, the truth is I would rather be here at home with them, then anywhere else. To add to the miraculousness of my son (Maybe Im biased, I dont think so), he starts dancing- or bouncing at times while singing. Its the greatest. Who knew he would have such a melody in his heart. My thoughts go back to when I was pregnant and found out that my son might not walk, talk, or do much of anything..Wow, if those doctors could see Carter now...God gave Cody and I two gifts (so far): Carter and Camden. I really have no idea what I would do without my boys, I love them more than words can say.
On to the topic of his new medicine, Neurontin..It has been already causing dizziness for him. They told me the side effects could be dizziness & sleepiness. So far I have picked up on the dizziness. Once his body gets used to the medicine, it should get better. I pray that this medicine helps Carter and that it has no lasting side effects. Could you please pray the same? I want my Carter back, the Carter that was more steady just three months ago. The Carter that didnt get sick when he saw his brother eat or whose eyes didnt roll back (this is the worst)..The Carter that didnt have these 'noises' that he couldnt control. To make it even worse, sometimes after he does the noises and the eye rolling (which are usually hand in hand), he says "funny.", like he has to hide them or make me think hes laughing.
A praise I have is, Carters SLP (speech language pathologist) wants Cody and I to keep track of Carters sentences of 3 words or more..We set a goal in November of 100 by the end of 2010. Carter is already at 40. We are so proud of him and all that he is accomplishing despite all the symptoms that could have set him back. Way to fight Carter!
Also, Carter is practically running at times now too. Its quite scary to see him go that fast. "Slow down!" I always tell him!
Please be in prayer for Carters next ped endocrinology appt (Feb 1st in Sioux Falls). We are thinking now he doesnt have growth hormone deficiency because he has recently grown...but do think he still has an underlying thyroid problem. Please pray that the doctor will get to the bottom of this. He has been on thyroid med, but they took him off...Now his TSH has been borderline.
Thanks again for your prayers!
Gods Love, Jessica :)
On to the topic of his new medicine, Neurontin..It has been already causing dizziness for him. They told me the side effects could be dizziness & sleepiness. So far I have picked up on the dizziness. Once his body gets used to the medicine, it should get better. I pray that this medicine helps Carter and that it has no lasting side effects. Could you please pray the same? I want my Carter back, the Carter that was more steady just three months ago. The Carter that didnt get sick when he saw his brother eat or whose eyes didnt roll back (this is the worst)..The Carter that didnt have these 'noises' that he couldnt control. To make it even worse, sometimes after he does the noises and the eye rolling (which are usually hand in hand), he says "funny.", like he has to hide them or make me think hes laughing.
A praise I have is, Carters SLP (speech language pathologist) wants Cody and I to keep track of Carters sentences of 3 words or more..We set a goal in November of 100 by the end of 2010. Carter is already at 40. We are so proud of him and all that he is accomplishing despite all the symptoms that could have set him back. Way to fight Carter!
Also, Carter is practically running at times now too. Its quite scary to see him go that fast. "Slow down!" I always tell him!
Please be in prayer for Carters next ped endocrinology appt (Feb 1st in Sioux Falls). We are thinking now he doesnt have growth hormone deficiency because he has recently grown...but do think he still has an underlying thyroid problem. Please pray that the doctor will get to the bottom of this. He has been on thyroid med, but they took him off...Now his TSH has been borderline.
Thanks again for your prayers!
Gods Love, Jessica :)
Saturday, January 16, 2010
Some answers from Omaha.
So yesterday, Cody, Carter, Camden & I left at 6 am to make it to Carters first appointment in Omaha @ 9 am. His appt was with a Dr. Legge, a neuroopthamologist. This glorified eye appt went really well, and Cody and I were quite impressed with Dr. Legge. He is a very intelligent man and was really good with Carter, Carter didnt cry once for him (only when nurse put drops in his eyes!) A praise is that Carters eyes actually improved sight wise, he was last checked @ 5 months old and the doctor said his eye sight improved by 50%! YAY! Still has astigmatism in both eyes, but thats no big deal. There was no sign of cranial pressure and all was well, and he doesnt need to see an eye doctor for another year. This doctor was talking how he would need and like to see Carters last scans of his brain, and I got out our CT pics that we had...Those didnt show him much, and then Cody piped in saying, "Well, we have that cd."..Thank the Lord we had that cd! Dr. Legge looked at the disc of Carters CT scans and found that part of the brain didnt look equal in the middle...He had a special name for this area and I don't remember. He did call this a midline or mid brain disturbance. This area being disturbed can cause all of the symptoms that Carter has been experiencing; nauseasness, vomitting, drooling, dizziness, eye rolling/fluttering, etc. Wow, I can't tell you how grateful I was to have this doctors knowledge. He mentioned that there is some medicine that Carter maybe able to be put on (if the neurologist agrees) that would 'stabilize' his brain. He said that this is hard to treat though, so please pray that Carter can be put on this and that it would help him!
Our next appointment was with Dr. Hellbusch, a neurosurgeon that we have been seeing since Carter was born. Carter first had a CT scan (and did pretty well- normally he really fights!) Dr. Hellbusch looked at the scans and said that the fluid on Carters brain looked pretty much like it did last month and that there was no sign of his shunt malfunctioning. We told the Dr. what we learned from Dr. Legge and how he thinks Carter should be put on a brain stabilizer. This doctor agreed and was going to send info on to Dr. Pavcovik, the neurologist. Putting Carter on this medicine is ultimately up to Dr. Pavcovik, whom Carter just saw last month when he was experiencing the same symptoms. We are hoping that Dr. Pavcovik doesnt need to see Carter again, but can just prescribe this medicine for Carter. If he has to see Carter again, it could be as much as 2 months out (Which I would argue!) I am not gonna sit here any longer watching my son have all these awful symptoms.
So, by 12:30 we were done with all Carters appointments. We then went to Younkers and spent too much time there, but Carter was walking so well! He was going everywhere! Cody followed him and said that women were "ooo-ing and aww-ing" him..and Cody would tell people that Carter was taking him for a walk. :) After Cody and Carter went up and down the escalator 6 times, we took off for Sioux City. My mothers ring had gotten repaired and was ready to be picked up. We looked at some more carpet samples from Mozaks, which was great, and then went and ate and were on our way home. It was nearly 9 by the time we got home, we all crashed! What a long day. We were so happy that we are getting some where though. If there is a medicine that can treat and help Carter, I am all for it. My boy needs some relief. I am gonna call the neurologist Tuesday if I dont hear from them on Monday.
Thank you everyone for your prayers. God is good and if treatment is as simple as medicine right now, thats great with me. Anything is better than having to put Carter back into the hospital and/or having surgery.
Our next appointment was with Dr. Hellbusch, a neurosurgeon that we have been seeing since Carter was born. Carter first had a CT scan (and did pretty well- normally he really fights!) Dr. Hellbusch looked at the scans and said that the fluid on Carters brain looked pretty much like it did last month and that there was no sign of his shunt malfunctioning. We told the Dr. what we learned from Dr. Legge and how he thinks Carter should be put on a brain stabilizer. This doctor agreed and was going to send info on to Dr. Pavcovik, the neurologist. Putting Carter on this medicine is ultimately up to Dr. Pavcovik, whom Carter just saw last month when he was experiencing the same symptoms. We are hoping that Dr. Pavcovik doesnt need to see Carter again, but can just prescribe this medicine for Carter. If he has to see Carter again, it could be as much as 2 months out (Which I would argue!) I am not gonna sit here any longer watching my son have all these awful symptoms.
So, by 12:30 we were done with all Carters appointments. We then went to Younkers and spent too much time there, but Carter was walking so well! He was going everywhere! Cody followed him and said that women were "ooo-ing and aww-ing" him..and Cody would tell people that Carter was taking him for a walk. :) After Cody and Carter went up and down the escalator 6 times, we took off for Sioux City. My mothers ring had gotten repaired and was ready to be picked up. We looked at some more carpet samples from Mozaks, which was great, and then went and ate and were on our way home. It was nearly 9 by the time we got home, we all crashed! What a long day. We were so happy that we are getting some where though. If there is a medicine that can treat and help Carter, I am all for it. My boy needs some relief. I am gonna call the neurologist Tuesday if I dont hear from them on Monday.
Thank you everyone for your prayers. God is good and if treatment is as simple as medicine right now, thats great with me. Anything is better than having to put Carter back into the hospital and/or having surgery.
Wednesday, January 13, 2010
What exactly is going on...?
Carter's appointment is less than 2 days away, thank the Lord...I don't want to take him, but know we need to take him. We dont know what exactly is going on...wish we did. All we know is things are not right with Carter..His symptoms have gotten progressively worse the last few weeks...I cant even count the number of times he does his 'noises' lately and on top of that he has been experiencing: nauseasness, vomiting at the sight of spit up, camden eating, drool, etc. (which he never did before his last surgery).., dizziness (falling more frequently than before surgery), and the list goes on. I can't wait to give this child some relief of some kind and hope and pray we get answers on friday.
Although he has periods of "normalness", he has much eye fluttering and rolling..to the point of bringing me to tears..I told Cody that we will not be coming home from Omaha without answers..something needs to be done to help ouc Carter. Whether it be simply adjusting his shunt (which they would keep him for a period of 6 hrs, or overnight), or another surgery (because perhaps the catheter that they put in is too long; it is the longest one hes had so far)...we WILL get answers.
I hope and pray Dr. Hellbusch takes us seriously and listens to us..last visit he was so quick to call Carters irritation seizures, which they are not...Pray for an open mind for the neurosurgeon and also for wisdom.
I will update after we know more following friday.
Although he has periods of "normalness", he has much eye fluttering and rolling..to the point of bringing me to tears..I told Cody that we will not be coming home from Omaha without answers..something needs to be done to help ouc Carter. Whether it be simply adjusting his shunt (which they would keep him for a period of 6 hrs, or overnight), or another surgery (because perhaps the catheter that they put in is too long; it is the longest one hes had so far)...we WILL get answers.
I hope and pray Dr. Hellbusch takes us seriously and listens to us..last visit he was so quick to call Carters irritation seizures, which they are not...Pray for an open mind for the neurosurgeon and also for wisdom.
I will update after we know more following friday.
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