So after a good night sleep I figured I better backtrack and fill everyone in on a little more about my family. Seems a little silly to say we are doing great when either you don't understand what has happened or you know our struggles the last couple of years and that was just not enough information. So let the backtracking begin.
Two years ago we yet again moved. This time to Kansas for a school for Shawn. He is now a Major in the Army. The school was only a year. Sonora up to that point had been doing ok in school and was again starting to have seizures. From the time we started changing meds everything went downhill for her, seizures were all day and night, she couldn't focus on school and nothing seemed to be helping. During this time, Evret was born and we muddled along. Come July (one year later) we moved to North Caronlina (Fort Bragg).
Another move meant changing doctors yet again for Sonora, which was really for the better. During this move Sonora was upset, tired, and really just wasn't doing well. We started seeing Dr's at UNC Chapel Hill and for First Grade, put her in a self contained class room so she wouldn't have so many distractions. I should say that during all this the boys were doing just fine:) Well, long story short, 2 shunt revisions, several medicine changes, and almost a year later, (about May) we FINALLY got her seizure under control. So for about 2 years Sonora had constant seizures all day and night. I am not even sure if she learned anything in that time or if its all a nightmare to her.
So, anyway, we had a decision to make last spring too. Shawn was deploying late summer, early fall and we could stay at Fort Bragg or move to MN with my parents. My Mom was diagnosed with lung cancer in April and all our friends were moving from our neighborhood so we were leaning toward MN. But, change is not always good for Sonora and it meant leaving our good Dr's. Well the piece of crap school the kids were going to helped clinch the decision to move when they started switching everything around and were going to have my kids at two different elementary schools and refused to let her redo 1st grade, even though I am pretty sure she barely remembered most, and refused to main stream her. So we moved and since then, it has all been good.
Our little town has stepped up and has down EVERYTHING they can for Sonora. She is repeating first grade, they have mainstreamed her 100% with a full time para, and they keep me informed of everything she does. The best part, Sonora is READING!! I can not tell you how much that means to me. Carson is in K and LOVES it. I work at ECFE at the school as the Parent Educator two mornings a week and Evret gets to come with me. School is wonderful!! Oh and I need to give a special thanks to my cousin Nico, whom advocated for Sonora last year before we even moved. We could not have done all this with out you:)
We bring Sonora to Gillette Children's and for the first time I can say we love EVERY Dr we have seen. Their team approach is amazing. And as for my parents? Well my Mom is going through round two of treatment. I have taken over all cleaning and cooking duties. My parents both help teaching the kids to read and play with them, but best of all is the relationship between Sonora and my Mom. They are cuddle buddies and come 7 at night Sonora is excited to cuddle with her Grandma. They both needed each other I think.
And that brings us to today, Wednesday of MEA week here in MN. The kids are off for a couple of days and Sonora turns 8 on Friday. To all my family, friends and followers I wish you good night and a prayer to all those who have craziness in their lives. There is always a light at the end of the tunnel. I followed my light back to family and if god, and the Army, is willing, this is where we will stay for a couple more years.
Wednesday, October 19, 2011
Tuesday, October 18, 2011
Day One of New Blogging
As my husband is deployed I thought that I would take up blogging again. There are so many days that we do not get to talk and so many things that happen with the kids. Especially funny things they say. Unfortunately what happens is that by the time we can talk I have forgotten everything that has happened. So, this is my forum to relay what has happened, the funny things that were said, and my place to vent.
I am not sure how many days my husband has been gone, only about a month(ish) He will be gone for a whole year. I am not one for counting down days until the end. It just seems depressing to start counting down from the beginning.
Funny saying for the day: Carson says to my dad after he stopped at a stop sign, "Grandpa, you stopped for a long time." "Well, you have to be careful and watch for cars." "Yeah, because if you don't you will get flattened like a pancake, but Grandpa, I don't ever see any pancakes on the road. You don't want to run over pancakes." I have NO idea if we made a comment one time about being flattened, I guess but the fact that he remembers is funny.
On a different note, Sonora had a great day at school and Occupational Therapy and Physical Therapy. It was a very long day, but she really shined. It makes life so much easier!
Evret, well, poor buddy had to get a shot today which was totally traumatizing. He was though, and he was 23 pounds, 12 ounces. Great weight gain!
Goodnight Friends, Family and Followers
I am not sure how many days my husband has been gone, only about a month(ish) He will be gone for a whole year. I am not one for counting down days until the end. It just seems depressing to start counting down from the beginning.
Funny saying for the day: Carson says to my dad after he stopped at a stop sign, "Grandpa, you stopped for a long time." "Well, you have to be careful and watch for cars." "Yeah, because if you don't you will get flattened like a pancake, but Grandpa, I don't ever see any pancakes on the road. You don't want to run over pancakes." I have NO idea if we made a comment one time about being flattened, I guess but the fact that he remembers is funny.
On a different note, Sonora had a great day at school and Occupational Therapy and Physical Therapy. It was a very long day, but she really shined. It makes life so much easier!
Evret, well, poor buddy had to get a shot today which was totally traumatizing. He was though, and he was 23 pounds, 12 ounces. Great weight gain!
Goodnight Friends, Family and Followers
Monday, September 20, 2010
A new week
FFFs,
Well, it is a new week. The first full week of the increase in medicine for Sonora, and well, it isn't working well. In fact, I think her seizures are increasing. There are so many things that are better with her. She seems to be talking more, but it is so upsetting when she constantly has to stop doing what she is doing because she has a seizure. It is just so hard to sit and watch her have seizure after seizure. She comes right out of them but still, it just takes so much out of her after a while. So, I guess we will be emailing the doctor soon and getting a medicine change. So, it is still a long road ahead.
Well, it is a new week. The first full week of the increase in medicine for Sonora, and well, it isn't working well. In fact, I think her seizures are increasing. There are so many things that are better with her. She seems to be talking more, but it is so upsetting when she constantly has to stop doing what she is doing because she has a seizure. It is just so hard to sit and watch her have seizure after seizure. She comes right out of them but still, it just takes so much out of her after a while. So, I guess we will be emailing the doctor soon and getting a medicine change. So, it is still a long road ahead.
Thursday, September 16, 2010
Check and double check
FFFs,
Well, we are making it through another day. Have any of you ever been in a situation which you say, "what is going to happen today?" That is what I feel like everyday. Today, I really made sure I needed a count of how many seizures Sonora was having so we can see if the increase in medicine helps. Well, what I got was the statement that Sonora had more seizures today then she has ever had. Well, check that must be what I am waiting for. Then the nurse calls, double check, and says Sonora threw up her second pill that she had to take and that it must be the vanilla ice cream. No, I said, she eats the ice cream with the pill all the time for us. So, my little stinker is now gaging on purpose b.c she doesn't want to take the pills at school. What is a mom to do?
Here is a question for you. Do any of your children have problems going from school to the weekend and then back to school? I am wondering if I need to treat the weekends like a day of school. By the time Monday comes around Sonora does not want to go back to school because she has been living the good life at home all weekend. Any suggestions would be great.
Well, we are making it through another day. Have any of you ever been in a situation which you say, "what is going to happen today?" That is what I feel like everyday. Today, I really made sure I needed a count of how many seizures Sonora was having so we can see if the increase in medicine helps. Well, what I got was the statement that Sonora had more seizures today then she has ever had. Well, check that must be what I am waiting for. Then the nurse calls, double check, and says Sonora threw up her second pill that she had to take and that it must be the vanilla ice cream. No, I said, she eats the ice cream with the pill all the time for us. So, my little stinker is now gaging on purpose b.c she doesn't want to take the pills at school. What is a mom to do?
Here is a question for you. Do any of your children have problems going from school to the weekend and then back to school? I am wondering if I need to treat the weekends like a day of school. By the time Monday comes around Sonora does not want to go back to school because she has been living the good life at home all weekend. Any suggestions would be great.
Wednesday, September 15, 2010
My rant of the day
I have worked many of jobs in my life and in all of them I would like to think I was nice to the people whom I served no matter what the situation. Is customer service a thing of the past? Maybe poor customer service and rude people is seen mostly on military bases. If you haven't heard about this, you should. I believe many people working on military bases just do not care how they treat a person because it is next to impossible to be fired. I have often wondered too if the frame of mind is that these services are free for us military people so really what do we have to complain about. What ever the case, I am tired of it.
Poor Evret is not feeling the best and all I wanted to do was to finally get him in to the doctor. So I call the appointment line and am told, well sorry we are having a shortage of providers so there are no appointments. I think to myself...a shortage, hmmmm, how about we hire more providers or better yet then let our children see pediatricians off post if you can not handle the load. Ok fine, what is my next option, well we will direct you to the nurse line. Nurse line answers, I give them my husband's info to look up Evret on their computer and are then told, well he isn't signed in here. Me, "what do you mean" . So it appears that Evret's tricare info did not go through when Shawn signed us all in but everyone else's has. Well what do I do then? I have to call Tricare or go see them. I ended leaving a quick irate message with Tricare and after not hearing back I call again later. So the second time around some one answers and of course it is somehow my husbands fault. But wait the lady says, let me look what is going on first. Ahhh I see, first blame the soldier then check the computer. Thanks. So after a few minutes and her making some phone calls she tells me the problem is fixed call again to pediatrics. Finally, I think this is all going to be ok but NO peds is saying Evret is still not with them. Ok I said, I just talked to Tricare on post, to which they reply you can't do that over the phone. Yes I can and I did, thank you. Where in this whole situation, I wanted to say did you not forget my baby feels like shit and sitting in an office is probably not what he would like to do. Then I get the well if she (the Tricare lady) is going to start doing this stuff over the phone then she better tell us. Anyway, after severals minutes we have a referral to go off post and that is what matters right? Not the fact that really they could have given a crap that I have a sick baby? Or that maybe, just maybe a little saying such as "I'm Sorry how can we help?" was a better place to start. As I said, perhaps there is just no customer service in the military. How dare I try and fix the problem myself and on the phone. How dare I not take the blame because you know it just couldn't be their mistake. So, now I am waiting for Sonora to get home so we can go to the urgent care place and wait, pray that it goes fast. It is hard enough being in the military I don't think that being treated like crap is really necessary.
Poor Evret is not feeling the best and all I wanted to do was to finally get him in to the doctor. So I call the appointment line and am told, well sorry we are having a shortage of providers so there are no appointments. I think to myself...a shortage, hmmmm, how about we hire more providers or better yet then let our children see pediatricians off post if you can not handle the load. Ok fine, what is my next option, well we will direct you to the nurse line. Nurse line answers, I give them my husband's info to look up Evret on their computer and are then told, well he isn't signed in here. Me, "what do you mean" . So it appears that Evret's tricare info did not go through when Shawn signed us all in but everyone else's has. Well what do I do then? I have to call Tricare or go see them. I ended leaving a quick irate message with Tricare and after not hearing back I call again later. So the second time around some one answers and of course it is somehow my husbands fault. But wait the lady says, let me look what is going on first. Ahhh I see, first blame the soldier then check the computer. Thanks. So after a few minutes and her making some phone calls she tells me the problem is fixed call again to pediatrics. Finally, I think this is all going to be ok but NO peds is saying Evret is still not with them. Ok I said, I just talked to Tricare on post, to which they reply you can't do that over the phone. Yes I can and I did, thank you. Where in this whole situation, I wanted to say did you not forget my baby feels like shit and sitting in an office is probably not what he would like to do. Then I get the well if she (the Tricare lady) is going to start doing this stuff over the phone then she better tell us. Anyway, after severals minutes we have a referral to go off post and that is what matters right? Not the fact that really they could have given a crap that I have a sick baby? Or that maybe, just maybe a little saying such as "I'm Sorry how can we help?" was a better place to start. As I said, perhaps there is just no customer service in the military. How dare I try and fix the problem myself and on the phone. How dare I not take the blame because you know it just couldn't be their mistake. So, now I am waiting for Sonora to get home so we can go to the urgent care place and wait, pray that it goes fast. It is hard enough being in the military I don't think that being treated like crap is really necessary.
Tuesday, September 14, 2010
Let's try this again
Family, Friends and Followers (FFFs)
Another day here and gone. Sonora and I were at the doctors today. She had an EEG and then saw the neurologist. Still having too many seizures, so we had to up one of her meds. After a couple of weeks if she is having less seizures then great, if not it'll be time to try a new medicine. So, that is the news for Sonora.
More fun though is our little walker. Evret was walking SO much today. He took about 20 steps in a row. One of these days he will just stop crawling all together. Where did my baby go? In less then a month he will be a year old.
Carson is doing well in school, he let's us know he did the same thing as last time in school. He is too funny. Love them all.
Another day here and gone. Sonora and I were at the doctors today. She had an EEG and then saw the neurologist. Still having too many seizures, so we had to up one of her meds. After a couple of weeks if she is having less seizures then great, if not it'll be time to try a new medicine. So, that is the news for Sonora.
More fun though is our little walker. Evret was walking SO much today. He took about 20 steps in a row. One of these days he will just stop crawling all together. Where did my baby go? In less then a month he will be a year old.
Carson is doing well in school, he let's us know he did the same thing as last time in school. He is too funny. Love them all.
Monday, September 13, 2010
Starting anew
Dear Friends, Family, and Followers,
It has been quite a while since I blogged last. I am starting to blog again for the ease of letting people know what is going on with our lives, especially Sonora. So much has happened since the last time I wrote that I am going to give a "quick" recap. We moved from Kansas to North Carolina in June. Well, technically we went to Minnesota for a month first and then came to NC in July. We had a great time seeing family and fishing however, as the trend goes, by the end of our vacation Sonora was not feeling very good and was having some pretty bad days. We arrived at Fort Bragg and about one week later found the local ER and UNC hospital quite quickly as Sonora's shunt decided to stop working again. Sonora had surgery on her shunt and while in the hospital I started pushing for them to start helping us with her seizures. Ten days later we ended back at UNC in the hospital where Sonora had a video EEG machine hooked up to record her seizure activity for almost a week. The results were not good. Sonora was having a multitude of seizures both day and night. There were even times that she was having seizure activity but nothing about her seemed to change, ie no eye rolling or staring etc. So, a new drug regimen was started. By the end of her stay the doctors thoughts were and I quote, "she's a puzzle". As you can imagine Sonora's was still having much more seizures then they wanted to see on the EEG but it was time to get home and let the medicines work. If anyone has been in the hospital for a week you know the feeling of needing to be at home! The hospital is uncomfortable, boring and just plain depressing at times.
For the next couple of weeks the seizures really seemed to be disappearing. Sonora was not having many staring spells and just seemed more alert then she had been in a long time. Then one day she started getting a rash. Sonora was on a medicine that if a rash began, the medicine would have to STOP. Of course, that is what happened, so good bye to lamictal and hello to zonisamide. Now ever since changing, I have noticed more seizures again. Also, school started.
School, what can I say about thee. This year we put Sonora in a self contained classroom (there's about 8 kids with different special needs to 1 teacher and 3 aids) instead of a normal 1st grade class. Last year she just seemed to be overwhelmed by the amount of children and the pace. However, Sonora is going to "specials" with one of the 1st grade classes this year. I would love to be able to say so far so good, but that is just not the case. It seems Sonora is a little defiant and refusing to do some of her work. Per the teacher she gets up around 1 o'clock everyday to get her backpack to go home because she is done for the day. She still has no real desire for learning and I am just not sure if she really understands WHY she needs to. She would love to just stay at home and be the queen in her dress and crown and be able to watch her movies, play her games or put together her puzzles all day. Any suggestions would be great. I have reverted back to putting sight words and other information she needs to learn on paper that is pinned to the hallway walls.
Anyway, Sonora's neurology appointment is tomorrow so we will have to wait until then to find out what is next. As for the other 2, well Carson loves preschool. He goes for about 2 1/2 hrs in the mornings every day. He is the social butterfly who would rather be there all day! Evret is walking everywhere. He is a climber and is into EVERYTHING. His two favorites are the dog water and the cupboard with the kids cups and bowls. He is definitely giving us a run for our money.
Please feel free to post any questions, comments or suggestions. Thanks for lending an ear;)
It has been quite a while since I blogged last. I am starting to blog again for the ease of letting people know what is going on with our lives, especially Sonora. So much has happened since the last time I wrote that I am going to give a "quick" recap. We moved from Kansas to North Carolina in June. Well, technically we went to Minnesota for a month first and then came to NC in July. We had a great time seeing family and fishing however, as the trend goes, by the end of our vacation Sonora was not feeling very good and was having some pretty bad days. We arrived at Fort Bragg and about one week later found the local ER and UNC hospital quite quickly as Sonora's shunt decided to stop working again. Sonora had surgery on her shunt and while in the hospital I started pushing for them to start helping us with her seizures. Ten days later we ended back at UNC in the hospital where Sonora had a video EEG machine hooked up to record her seizure activity for almost a week. The results were not good. Sonora was having a multitude of seizures both day and night. There were even times that she was having seizure activity but nothing about her seemed to change, ie no eye rolling or staring etc. So, a new drug regimen was started. By the end of her stay the doctors thoughts were and I quote, "she's a puzzle". As you can imagine Sonora's was still having much more seizures then they wanted to see on the EEG but it was time to get home and let the medicines work. If anyone has been in the hospital for a week you know the feeling of needing to be at home! The hospital is uncomfortable, boring and just plain depressing at times.
For the next couple of weeks the seizures really seemed to be disappearing. Sonora was not having many staring spells and just seemed more alert then she had been in a long time. Then one day she started getting a rash. Sonora was on a medicine that if a rash began, the medicine would have to STOP. Of course, that is what happened, so good bye to lamictal and hello to zonisamide. Now ever since changing, I have noticed more seizures again. Also, school started.
School, what can I say about thee. This year we put Sonora in a self contained classroom (there's about 8 kids with different special needs to 1 teacher and 3 aids) instead of a normal 1st grade class. Last year she just seemed to be overwhelmed by the amount of children and the pace. However, Sonora is going to "specials" with one of the 1st grade classes this year. I would love to be able to say so far so good, but that is just not the case. It seems Sonora is a little defiant and refusing to do some of her work. Per the teacher she gets up around 1 o'clock everyday to get her backpack to go home because she is done for the day. She still has no real desire for learning and I am just not sure if she really understands WHY she needs to. She would love to just stay at home and be the queen in her dress and crown and be able to watch her movies, play her games or put together her puzzles all day. Any suggestions would be great. I have reverted back to putting sight words and other information she needs to learn on paper that is pinned to the hallway walls.
Anyway, Sonora's neurology appointment is tomorrow so we will have to wait until then to find out what is next. As for the other 2, well Carson loves preschool. He goes for about 2 1/2 hrs in the mornings every day. He is the social butterfly who would rather be there all day! Evret is walking everywhere. He is a climber and is into EVERYTHING. His two favorites are the dog water and the cupboard with the kids cups and bowls. He is definitely giving us a run for our money.
Please feel free to post any questions, comments or suggestions. Thanks for lending an ear;)
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