Sarah Ann Zicafoose
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Journal 2009
January 30th. 2009
Hello and Happy New Years to All!
Well this has been a crazy start to our new year. As I had said last year, if there has to be hard times, get all out of the way as soon as possible. Well some one must of heard me, because Sarah once again was in the hospital.
First, Sarah was having trouble adjusting going back to school. The first week was fine, the second week, was a bit difficult for her. She did not attend much, she was crying and having feeding issues. The 3rd week, she did not want to go at all. I realized that it she was just not herself. It turns out that she was having GI issues once again. She had not had a typical "Sarah" bm for over a week. On Wednesday, January 14th I took her to see the doctor. He ordered an x-ray of her adbomen and when it came back, he saw nothing but air in her stomach and bowels. We increased pedilite and Miralax and went easy on her feedings. She had one that day and we thought "Great... she is fine now". We continued this for several days. Then over the weekend, I increased her feedings and got her back on her regular feeding regiment. There was not another bm. She was fussy going to school and at school and that was not like her at all. So she came home with me. I called her GI and they had me give her Magneseum Citrate twice a day.... after Thursday morning, still nothing. So I called the GI and they were just shocked. They asked me to take her to her peditritans office to get a urine sample...(the painful way) and give the results to the GI. They also had set an appointment for later that day. So at 3:40, we saw the GI and after explaining in detail all that was going on, they needed to get another x-ray and CT scan, but they said she had to go thru ER to get that started. Well we all know how lovely the ER is, especially in the late afternoon. It was pretty crowded. Well, I was able to get Sarah a room after 3 hours. I told them all about her seizures, sensory disorder and anexity. I explained that the sensory is setting off seizures, and that they would not be able to do a CT scan unless she was calm. So luckilly we got a good room. They did another urine test, and gave her an IV for fluids and blood work. After everything was done, about 12:30 am, we were told she was being admitted. At 2am a room became available. The first night, both Sarah and I slept like rocks, till 7am. The next few days were tests after test, x-rays, Upper GI's and her tummy was roaring like being underwater next to a waterfall. Her bowels are not suppose to be noisey at all like that. Her tummy gurgled and grumbled and you could hear it across the room and feel the bubbles in her tummy. All she was getting the first 2 1/2 days was IV fluids to give her bowels a rest. The 3rd day was 1/2 pedilite and formula, the 4 day full strength formula and then she was put on Go Litely. That was going to really clean her out. Finally she was cleaned completely and we were able to finally take her home on the 5th day late that afternoon.
So needless to say, Sarah lost quite a bit of weight about 4 to 5 pounds, which is soooo much for her, she has bruses all up and down her arms and she was soooo very weak, that the first few days we were home, she could hardly walk. Wednesday, all she wanted was for me to hold her and rock her. Thursday, she seemed better and was regaining her strength. Today, she was crabby in the morning and still did not seem like she felt good... but as the morning went, she perked up. We still have not seen another bm, and we hope she is not backed up.
So I am going to try what we always do....increase Miralax and be easy on her feedings and if nothing by tomorrow, another call in to the doctors office.
They think she has something called Ileus...which is such a general term. They believe her bowels became paralized from a tummy bug or a neurological reason. They do not know. They are not sure why this keeps happening. The same thing happened last year on Christmas day and she was in the hospital for 3 days. She may also have Dismobility, which means her bowels are just not moving like they should be doing. So that is where it is at now and the doctors are kinda scratching their heads. We are just waiting for some more blood work and may have to look for a specialist in mobility. Which is not here in Arizona. So for now it is just wait and see. I feel soooo bad for her! But I just hope she feels better.
On a postive note, the one great thing that came out of this was that Sarah and I really bonded and made up for lost time. All we do is concentrate on appointments, school and therapies and we do not get much one on one time. Since it is the height of the cold, respertory and flu season for alot of kiddos, we were strongly advised not to take her out of the room. So for 5 days she was in her bed, only in her room either with me, daddy or Nana. Most of the time with me, and for the most part, it was so wonderful to cuddle with her and have her so close to me and sleep right next to me. The bonding was wonderful. It really brought us closer and she has become so much more loving and expressive. I am so grateful we had that time together. Also, there were several nurses that reconized our last name and came to say Hi. That was really nice. Not only that, she got some music therapy as well. Once she saw that gutiar... she lit up like the 4th of July. I have pictures and will post them here soon.
Hannah is feeling alot of the stress and it has been a bit diffucult to make up all the lost time. She understands, but still feels the stress and feels left out has been a bit anixous. But we too have our moments of bonding and making up to do.
Well, that is all for now. Please keep Sarah in your prayers to heal her and for this to not happen again. I hope and pray that her bowels and intestens are not loosing their mobility they are suppose to have. This just would be another set back for her and she just has tooo many other issues to deal with.
Thank you all!!!!
Love,
Vicki
February 23rd 2009
Well here it is... almost March... the time has flown by once again. We have been very busy with Sarah and her GI issues. After the hospital she had to go back into a different hospital as out paitent for additional tests. One was called a Sigmoid Oscopy and the other was a test where they looked down her throat, both to check the motility. This was last Wednesday. We got the tests back and they were all normal. Thank the Lord! However, she still has GI issues. She has what is called dismotility. Where stool just is not moved. That seems bad... but in reality... it is better than what could of been. So for now she will be on medicines to help with the motility and we are going from here. That is really about it. Not big news to report. She is feeling better and happy and sweet and just soo loving.
Hannah is doing well... getting an attitude lately... but she is still wonderful, sweet and funny than ever. She is doing great in school too. We are so proud of both our girls.
Thank you again for all your thoughts and prayers!
Love,
Vicki
March 4th. 2009
Hello Everyone!
Just a quick update here. Things are going pretty well for us or should I say, not much out of our ordinary. Sarah still seem to be recovering from her out patient testing. She seems to have a bug, but is slowly getting better. We met with the GI's P.A and she was extremely wonderful. We had so many questions and we talked for at least an hour. She really seems to understand what is going on and what we are going thru as a family. We even talked about her sister and us as well. She is concerned as well, because evidently I am having panic/anexiety attacks. I just thought it was a bout of stress. So that is something I need to talk to my doctor. She just feels since we both have such a load on both our hands, we need to find away to work with the stress. The day to day stress obviously will never go away... but we just need to find a way to take better care of ourselves. So that is our next step. If anyone is giving away a Hawaiian vacation.... we will be the first in line to take it!! (Ha! Ha! Just kidding)
We are going to need to change her feeding schedule and add a few extra things to her diet, one thing is Micro Lipids and add a longer duration of her night time feeds and hopefully she will get to feeling better and maybe start to gain weight.
Hannah is doing well. She is doing so great in school and in a few days will be on Spring Break. I am hoping to take her to some educational, but fun places like museums and maybe get some suggestions from her teacher as well. We sure need some bonding time together.
That is about it for now. Again THANK YOU ALL for all your love and support!
Vicki
June 5th. 2009
Well I know it has been quite a while since I last updated the site. We have been so busy and overwhelmed. Its just been a crazy time... but we are so used to it.
Just to give an update, on March 26, Sarah had a sleep study done. They really did not find much, except possible seizures that could be waking her up. She grinds her teeth and does not go into typical sleep patterns like she should. She also has a mild case of Sleep Apena. If it gets worse, she may have to have her tonsils and adenoids taken out. But it is not so bad that it has to been done right away.
In the earlier part of May, we met with the Shriners at Maricopa Health Care. They took x-rays of her hip - severalo of them and they said that she does not have hip displasia.... but because her left leg is shorter than the right, it looks that way. They are going to make her new braces, up date them and keep close tabs on her. She still uses her SWASH and that has made a great improvement on her walking and stability.
She has been doing really great with her GI issues.... HOWEVER... lately it seems like she is backing up again and this is causing extreme negative behaviors. She gets in such pain that she throws a gianormous fit....gianormous to say the least. They are such powerful fits that she thrursts herself on the floor, bangs her head on anything she can find, bits her arm to where it bleeds, hits herself, scratches her self and then I have no choice but to hold her and restrain her the best I can to keep from her really injuring herself. When anyone is in severe pain, they are unable to focus, concentrate and work and Sarah does not know how to help her body reduce or eliminate the pain. So we are back to giving her enemas and suppositaries and extra Miralax to get her bowles working. We are finally noticing a pattern here... this seems to occur every 3 to 4 months and with her extreme high sensory issues as it is.... this just add fule to the fire. On this past Friday, we even had a MRI stat just to make sure she had not hurt her shunt. Thank GOD that turned out fine. So its back to calling the GI docs to see what they suggest. I have done everything I know of and she still is having issues... she has gone some here and there, but not like I know she should be doing.
Ok... so on a better note, we, Sarah, Hannah, Grandpa Bob, Uncle Briggs and my self got to meet the Govorner, Jan Brewer on Friday, May 29th. She was signing a bill that will allow special needs and foster children to be able to choose the school of their choice...well the parents choice. It is called LEXIE'S LAW. So for children that have disabilites, no matter how great or how small, can attend a privite school that best fits their needs. The girls and I stood next to Governor Jan Brewer while signing the bill
Sarah was so freaked out and her sensory was so out of control that she screamed and cried and went bizark during the whole signing. Even one of the Senators I believe it was Jack Harper bent down to comfort her and she did not want anything to do with that. (lol) There was lots of media there and I was thrusted into the spot light. So many reporters and tv and raido crew were interviewing me. I had video cameras, micorphones and tape recorders spontainously up in my face asking me so many questions. It was so overwhemling, especially with Sarah having her episodes and trying to comfort her at the same time, but it was soo rewarding and just amazing and the best day of my life, next to giving birth to my girls. I had never, ever been under that amount of pressue in my life and I am so amazed at myself how I held up and just did it. We got to meet some wonderful and amazing people and Governor Jan Brewer, WOW!!! I had a chance to talk to her and thank her personally. Just in the short moments we spoke, I could tell right away what a strong, caring, smart and tough woman she is. She was such an inspiration to me. I will never forget this day!
I know witht the way the economy is... people are not too happy about this. But this is not state funded, the money will come from coporate tax credits, 90% of it and it will go to the STO's (Student Tutition Organizations) and they will distribute accordingly. Schools would face significantly higher costs if these children with special needs were to be forced back into the public schools. The scholarship amount is limited to 90% of what the state would have spent on the student, so the cost of the tax credit is more than offset.This is actually saving the state and they schools money. To find all the information on this, you can go to: http://www.azpolicy.org/blog/1 and go to where it talks about Lexie's Law and click on this link. Here you can find exactly what it does.
The Tuesday before that on 5/26, I got to speak to the Senate Appropriations Committee about Sarah and her sister, what the public could not and will not do for Sarah, and how public schools benifited Hannah as well as how much LIFE has helped Sarah in so many ways. You can view the video hearing by clicking on: http://azleg.granicus.com/ViewPublisher.php?view_id=13 go to the date 5/26 Senate Appropriations. The video is 1 hour and 17 minutes long.... I spoke about 40 mintues into the hearing.
Next stop is possible being a part of a law suite that the AEA (Arizona Education Assoication) is planning on suing to fight this bill. I can see both sides, but I feel that this is just about money and not whats best for special needs children and vunerable children.
So that is about it for now.... I know this is alot to cover in the last 3 months. The girls will be turning 6 on June 10th and they are having their party this year again at Peter Piper. I hope Sarah enjoys herself this year. She has never enjoyed a single birthday, I sure hope one day she will.
Thanks again for all your love, support and prayers thru the years and during the difficult times. WIth out that, I do not know how we could of ever gotten thru what we do.
Love to you all!
The Z Family
Hello and Happy New Years to All!
Well this has been a crazy start to our new year. As I had said last year, if there has to be hard times, get all out of the way as soon as possible. Well some one must of heard me, because Sarah once again was in the hospital.
First, Sarah was having trouble adjusting going back to school. The first week was fine, the second week, was a bit difficult for her. She did not attend much, she was crying and having feeding issues. The 3rd week, she did not want to go at all. I realized that it she was just not herself. It turns out that she was having GI issues once again. She had not had a typical "Sarah" bm for over a week. On Wednesday, January 14th I took her to see the doctor. He ordered an x-ray of her adbomen and when it came back, he saw nothing but air in her stomach and bowels. We increased pedilite and Miralax and went easy on her feedings. She had one that day and we thought "Great... she is fine now". We continued this for several days. Then over the weekend, I increased her feedings and got her back on her regular feeding regiment. There was not another bm. She was fussy going to school and at school and that was not like her at all. So she came home with me. I called her GI and they had me give her Magneseum Citrate twice a day.... after Thursday morning, still nothing. So I called the GI and they were just shocked. They asked me to take her to her peditritans office to get a urine sample...(the painful way) and give the results to the GI. They also had set an appointment for later that day. So at 3:40, we saw the GI and after explaining in detail all that was going on, they needed to get another x-ray and CT scan, but they said she had to go thru ER to get that started. Well we all know how lovely the ER is, especially in the late afternoon. It was pretty crowded. Well, I was able to get Sarah a room after 3 hours. I told them all about her seizures, sensory disorder and anexity. I explained that the sensory is setting off seizures, and that they would not be able to do a CT scan unless she was calm. So luckilly we got a good room. They did another urine test, and gave her an IV for fluids and blood work. After everything was done, about 12:30 am, we were told she was being admitted. At 2am a room became available. The first night, both Sarah and I slept like rocks, till 7am. The next few days were tests after test, x-rays, Upper GI's and her tummy was roaring like being underwater next to a waterfall. Her bowels are not suppose to be noisey at all like that. Her tummy gurgled and grumbled and you could hear it across the room and feel the bubbles in her tummy. All she was getting the first 2 1/2 days was IV fluids to give her bowels a rest. The 3rd day was 1/2 pedilite and formula, the 4 day full strength formula and then she was put on Go Litely. That was going to really clean her out. Finally she was cleaned completely and we were able to finally take her home on the 5th day late that afternoon.
So needless to say, Sarah lost quite a bit of weight about 4 to 5 pounds, which is soooo much for her, she has bruses all up and down her arms and she was soooo very weak, that the first few days we were home, she could hardly walk. Wednesday, all she wanted was for me to hold her and rock her. Thursday, she seemed better and was regaining her strength. Today, she was crabby in the morning and still did not seem like she felt good... but as the morning went, she perked up. We still have not seen another bm, and we hope she is not backed up.
So I am going to try what we always do....increase Miralax and be easy on her feedings and if nothing by tomorrow, another call in to the doctors office.
They think she has something called Ileus...which is such a general term. They believe her bowels became paralized from a tummy bug or a neurological reason. They do not know. They are not sure why this keeps happening. The same thing happened last year on Christmas day and she was in the hospital for 3 days. She may also have Dismobility, which means her bowels are just not moving like they should be doing. So that is where it is at now and the doctors are kinda scratching their heads. We are just waiting for some more blood work and may have to look for a specialist in mobility. Which is not here in Arizona. So for now it is just wait and see. I feel soooo bad for her! But I just hope she feels better.
On a postive note, the one great thing that came out of this was that Sarah and I really bonded and made up for lost time. All we do is concentrate on appointments, school and therapies and we do not get much one on one time. Since it is the height of the cold, respertory and flu season for alot of kiddos, we were strongly advised not to take her out of the room. So for 5 days she was in her bed, only in her room either with me, daddy or Nana. Most of the time with me, and for the most part, it was so wonderful to cuddle with her and have her so close to me and sleep right next to me. The bonding was wonderful. It really brought us closer and she has become so much more loving and expressive. I am so grateful we had that time together. Also, there were several nurses that reconized our last name and came to say Hi. That was really nice. Not only that, she got some music therapy as well. Once she saw that gutiar... she lit up like the 4th of July. I have pictures and will post them here soon.
Hannah is feeling alot of the stress and it has been a bit diffucult to make up all the lost time. She understands, but still feels the stress and feels left out has been a bit anixous. But we too have our moments of bonding and making up to do.
Well, that is all for now. Please keep Sarah in your prayers to heal her and for this to not happen again. I hope and pray that her bowels and intestens are not loosing their mobility they are suppose to have. This just would be another set back for her and she just has tooo many other issues to deal with.
Thank you all!!!!
Love,
Vicki
February 23rd 2009
Well here it is... almost March... the time has flown by once again. We have been very busy with Sarah and her GI issues. After the hospital she had to go back into a different hospital as out paitent for additional tests. One was called a Sigmoid Oscopy and the other was a test where they looked down her throat, both to check the motility. This was last Wednesday. We got the tests back and they were all normal. Thank the Lord! However, she still has GI issues. She has what is called dismotility. Where stool just is not moved. That seems bad... but in reality... it is better than what could of been. So for now she will be on medicines to help with the motility and we are going from here. That is really about it. Not big news to report. She is feeling better and happy and sweet and just soo loving.
Hannah is doing well... getting an attitude lately... but she is still wonderful, sweet and funny than ever. She is doing great in school too. We are so proud of both our girls.
Thank you again for all your thoughts and prayers!
Love,
Vicki
March 4th. 2009
Hello Everyone!
Just a quick update here. Things are going pretty well for us or should I say, not much out of our ordinary. Sarah still seem to be recovering from her out patient testing. She seems to have a bug, but is slowly getting better. We met with the GI's P.A and she was extremely wonderful. We had so many questions and we talked for at least an hour. She really seems to understand what is going on and what we are going thru as a family. We even talked about her sister and us as well. She is concerned as well, because evidently I am having panic/anexiety attacks. I just thought it was a bout of stress. So that is something I need to talk to my doctor. She just feels since we both have such a load on both our hands, we need to find away to work with the stress. The day to day stress obviously will never go away... but we just need to find a way to take better care of ourselves. So that is our next step. If anyone is giving away a Hawaiian vacation.... we will be the first in line to take it!! (Ha! Ha! Just kidding)
We are going to need to change her feeding schedule and add a few extra things to her diet, one thing is Micro Lipids and add a longer duration of her night time feeds and hopefully she will get to feeling better and maybe start to gain weight.
Hannah is doing well. She is doing so great in school and in a few days will be on Spring Break. I am hoping to take her to some educational, but fun places like museums and maybe get some suggestions from her teacher as well. We sure need some bonding time together.
That is about it for now. Again THANK YOU ALL for all your love and support!
Vicki
June 5th. 2009
Well I know it has been quite a while since I last updated the site. We have been so busy and overwhelmed. Its just been a crazy time... but we are so used to it.
Just to give an update, on March 26, Sarah had a sleep study done. They really did not find much, except possible seizures that could be waking her up. She grinds her teeth and does not go into typical sleep patterns like she should. She also has a mild case of Sleep Apena. If it gets worse, she may have to have her tonsils and adenoids taken out. But it is not so bad that it has to been done right away.
In the earlier part of May, we met with the Shriners at Maricopa Health Care. They took x-rays of her hip - severalo of them and they said that she does not have hip displasia.... but because her left leg is shorter than the right, it looks that way. They are going to make her new braces, up date them and keep close tabs on her. She still uses her SWASH and that has made a great improvement on her walking and stability.
She has been doing really great with her GI issues.... HOWEVER... lately it seems like she is backing up again and this is causing extreme negative behaviors. She gets in such pain that she throws a gianormous fit....gianormous to say the least. They are such powerful fits that she thrursts herself on the floor, bangs her head on anything she can find, bits her arm to where it bleeds, hits herself, scratches her self and then I have no choice but to hold her and restrain her the best I can to keep from her really injuring herself. When anyone is in severe pain, they are unable to focus, concentrate and work and Sarah does not know how to help her body reduce or eliminate the pain. So we are back to giving her enemas and suppositaries and extra Miralax to get her bowles working. We are finally noticing a pattern here... this seems to occur every 3 to 4 months and with her extreme high sensory issues as it is.... this just add fule to the fire. On this past Friday, we even had a MRI stat just to make sure she had not hurt her shunt. Thank GOD that turned out fine. So its back to calling the GI docs to see what they suggest. I have done everything I know of and she still is having issues... she has gone some here and there, but not like I know she should be doing.
Ok... so on a better note, we, Sarah, Hannah, Grandpa Bob, Uncle Briggs and my self got to meet the Govorner, Jan Brewer on Friday, May 29th. She was signing a bill that will allow special needs and foster children to be able to choose the school of their choice...well the parents choice. It is called LEXIE'S LAW. So for children that have disabilites, no matter how great or how small, can attend a privite school that best fits their needs. The girls and I stood next to Governor Jan Brewer while signing the bill
Sarah was so freaked out and her sensory was so out of control that she screamed and cried and went bizark during the whole signing. Even one of the Senators I believe it was Jack Harper bent down to comfort her and she did not want anything to do with that. (lol) There was lots of media there and I was thrusted into the spot light. So many reporters and tv and raido crew were interviewing me. I had video cameras, micorphones and tape recorders spontainously up in my face asking me so many questions. It was so overwhemling, especially with Sarah having her episodes and trying to comfort her at the same time, but it was soo rewarding and just amazing and the best day of my life, next to giving birth to my girls. I had never, ever been under that amount of pressue in my life and I am so amazed at myself how I held up and just did it. We got to meet some wonderful and amazing people and Governor Jan Brewer, WOW!!! I had a chance to talk to her and thank her personally. Just in the short moments we spoke, I could tell right away what a strong, caring, smart and tough woman she is. She was such an inspiration to me. I will never forget this day!
I know witht the way the economy is... people are not too happy about this. But this is not state funded, the money will come from coporate tax credits, 90% of it and it will go to the STO's (Student Tutition Organizations) and they will distribute accordingly. Schools would face significantly higher costs if these children with special needs were to be forced back into the public schools. The scholarship amount is limited to 90% of what the state would have spent on the student, so the cost of the tax credit is more than offset.This is actually saving the state and they schools money. To find all the information on this, you can go to: http://www.azpolicy.org/blog/1 and go to where it talks about Lexie's Law and click on this link. Here you can find exactly what it does.
The Tuesday before that on 5/26, I got to speak to the Senate Appropriations Committee about Sarah and her sister, what the public could not and will not do for Sarah, and how public schools benifited Hannah as well as how much LIFE has helped Sarah in so many ways. You can view the video hearing by clicking on: http://azleg.granicus.com/ViewPublisher.php?view_id=13 go to the date 5/26 Senate Appropriations. The video is 1 hour and 17 minutes long.... I spoke about 40 mintues into the hearing.
Next stop is possible being a part of a law suite that the AEA (Arizona Education Assoication) is planning on suing to fight this bill. I can see both sides, but I feel that this is just about money and not whats best for special needs children and vunerable children.
So that is about it for now.... I know this is alot to cover in the last 3 months. The girls will be turning 6 on June 10th and they are having their party this year again at Peter Piper. I hope Sarah enjoys herself this year. She has never enjoyed a single birthday, I sure hope one day she will.
Thanks again for all your love, support and prayers thru the years and during the difficult times. WIth out that, I do not know how we could of ever gotten thru what we do.
Love to you all!
The Z Family
October 19th 2009
Well I know it has been quite a while since I last updated Sarah's site. We have had soo much going on.
Summer came and went so fast. Sarah attended her center during the summer which was so wonderful for her.
We started her on a home made blended food diet, slowly decreasing formula, slowing adding fruits, veggies, protiens ect... and now she is on a blended diet full time. We started this in late June, with the wonderful donation of a Vita Mix blender from Grandma and Grandpa Denisons friends, we were able to do it and do it right. We consulted with her feeding therapist, her nutritionist, families from Yahoo Blended Food Group and other families, we finally got the diet down pat. So she has been doing so incredible since the change. She is gaining weight, slowly but surely, her color, hair, nails are soo healthy. Her bms are getting better, her cognitive skills are improving, and she is soo happy almost all the time.
Then we moved. URG!!! What a crazy time. We were suppose to of been in our new house in July, and it just kept getting dragged. So for a week or so we were "homeless"... staying at friends and relatives.... then having one large move all at once.... it was a crazy crazy CRAZY time... but all worth it. Just getting settled still taking our time.
Darin is still working at Big Two Toyota.... working crazy hours, missing him being at home at night and not bringing in much at all....but we are managing the best we can.
Sarah started back at her Academy in mid August. They have built a new building and it is amazing. It took some time transitioning, but after a few weeks she started to settle in. She had a new place to go to, new provider, new schedules and a new therapists... music.
She was doing soo well until the last week of September. Her academy teachers noticed the area above her shut was swelling. We had taken he in to see her dr and he referred us to a Neuro surgeon. So we got in with in the next few days and after evaluation, he said it was fine. WHEW!!!
But she continued to have mild but evident seizures. So on Thursday, Sept 24th, we took her to the ER. She had seen her pediatrician again and to his suggestion we get her in right away.
She was evaluated by the ER doc and soon after her new neuro surgeons Dr. Ruzicka and Dr. Elton came for a visit. After a urine and blood tests were done, it was determined that her sodium levels were really low 121. So she was admitted. We met a wonderful Dr. Jay Cook. He really took the bull by the horns and spent soo much time with her case and with us. Since her current neurologist is at another hospital, St. Joseph Medical Center, her pediatrician does not have rights there. He can not cross care for her or over see her at that hospital. So with alot of thought and discussions and after the compassionate care he provided not just to Sarah but to us, we have decided to switch. I would never want to take convience over quality of care, but these doctors are all in one group and are amazing and are at the same hospital as her pediatrician is at so it will make it so much easier for all her specialist involved to care for her.
So.... we spent a week in the hospital trying to regulate her sodium levels. He also wanted her to get off the Trileptal the ONLY seizure medication she has been on for a while, because that is a contributor to sodium depletion.
As of the end of September, she was being weaned off Trileptal and on to Topomax. We upped her sodium levels in her diet as well by adding in chicken broth. Once she was back up to a good level 131, she got to go home. She has to have weekly blood draws as well to check that levels are good.
We thought we were on a good track... but seizures were still coming on and they were becoming more frequent, stronger and lasting longer. They were soo often that again another call to both her pediatrician and her neurologist, they said to get her to the ER via ambulance. This occurred October 12th. Again another week in the hospital, for observation and adding more meds.
They did blood work, for medication and sodium levels. They put her on another mediation called Dilantan and for a few days checked blood levels to make sure it was doing what it is supposed to do. They did an EEG as well.
So.... the not so good news is that there are seizures coming not only from the left, but from the right as well. I was stunned, shocked and still in denial. I do know the reality of this and I am numb and heartbroken. I just do not know what to think right now. We don’t know why there are seizures on her good side, her left side. But they are and we are just going to have to take one day at a time.
We are home now and she is on a new medication Banzel as well as Topomax and Dilantan. It is alot for her to handle, but we are going on these slowly. We have noticed a change... they are different.... some are the same too. I am keeping track of all of her seizures that I possible can, her medication transitions, as well as changes in her behaviors. She has been a bit weak, due to the 5 day hospital stay and the new meds, but all in all she has been an awesome sweet girl.
We are keeping her home for the next few days just to be on the safe side and slowly transition her back to school. I dont want to overwhelm her too much to fast.
I will get post recent pictures on her Picture link. The ones that are on this page from June have disappeared.... dont know why, but I will try to get those back up once I can.
As for the rest of us ..... we are just dealing and living the best we can. Hannah started 1st grade this fall and so far she is doing wonderful. She has made some good friends and she is going to be accepted into the Accelerated Reading program some time this fall. She has been such a trooper thru all of this and we are all sooo proud of her. We are proud of both of are girls.
Thanks to all of you that has kept in touch with us via Facebook and THANK YOU ALL for all your thoughts and prayers. It has helped and been such a blessing to have your support.
I will do my best to keep this up to date.
I want to close by saying Thank You to Mandy, Sarah's provider, Grandma and Grandpa Karen, Aunt Chris, Nana, Darin, for helping me out these last 2 times Sarah was in the hospital. All your help has meant the world to me.
Love,
Vicki
October 28th 2009
Back again to go over our last week........
After discharged from the hospital last week, she was back in again. She was readmitted on October 24, Saturday afternoon due to a high fever, and a rash that was getting worse. I called her peditritian and he said to get her down to the ER right away. As I came in with Sarah, the nurse that took care of Sarah the last 2 times in the ER was at the front desk.... We saw each other and smiled and I said "Wereee backkk" So luckilly we got a room in the ER right away.
Again they did a urine and blood test. They said her blood count and white blood cells were low and hooked her up to an IV. We got there about 4:30 pm and had a room on the 3rd floor by 10pm. After going over ALLL the typical things when you get a room, and more blood work and a nose swab AND changing out and re doing the IV she finally got to rest a few hours. I may of slepted a hour at the most.
Sunday,morning came 10/25 and we saw her peditritian, since her fever was still going up and down and her rash coming in worse.... he said she will need to stay a few day until we can figure out what was causing what. Plus they think she had a virus of some sort.
So Sunday night, Dr. Cook came in. We had a long talk about how events were taking place and what could be going on. Since her platelets were not going up, he wanted to take her off Dilantan right away. So now she was just on Banzel and Topomax. We also are going to have to re start her blended diet and start from scratch. URG!!!!
I also asked about this out of the ordinary "Laughing Spells" she was having. It is as if she is a happy drunk child. I assumed that this was a side effect from one of the medications. Well he said it is not. It is called "GALECTIC SEIZURES" I practically fell apart. No way can she have another kind of seizure!!!!! So now that is something to keep our eyes open for and document.
Sooo... Monday moring seizures were on and off and given Adivan when she had seizures over 8 minutes. We were now also feeding her via pump Pedisure along with her blended diet and we were getting low on that too. She was sooo fussy and soo tired and could not get comfortable. Thank goodness Nana was there to releave some of the pressure for me.
She started to finally perk up around noon and seemed feeling a bit better. Still are waiting for the swab test to make sure she does not have a virus and she still has a mild fever.
Throughout the day..... she was on and off again fussy, on and off again happy. She did have at least 3 huge, huge diapers and we were happy about that!!!!
Finally she fell asleep about 10pm and slepted most of the night. I went home that night to sleep while Darin stayed. I was wipped out!
Tuesday morning, came in and Darin went home. Uneventful as it was. Dr. Salak... Sarah's other peditritian came in around 9am and checked all her vitals. He said.. he felt since Sarah did good the lst 24 hours and fever was down for quite a while, he saw no reason for us to still be here. There are wayyy to many sick kiddos here and dont want to jepordize Sarah's health any more than it is. So we got to come home!!
Once home Sarah got a bath. She was a bit out of sorts... and even threw up a feeding. But we are working on getting her back on track.
During the evening feeding Sarah was just in a funk. I think looking back she was just so over tired and just could not get settled. It took her a few days to get back on track. But for now she is doing well. We will check in later.
I added new pictures from the beginning of the year to just before Halloween. I will get those added lsoon. Please check out her "Picture" tab!!
Thank you all for your loving support and all the prayers!!!
Love,
Darin and Vicki
Well I know it has been quite a while since I last updated Sarah's site. We have had soo much going on.
Summer came and went so fast. Sarah attended her center during the summer which was so wonderful for her.
We started her on a home made blended food diet, slowly decreasing formula, slowing adding fruits, veggies, protiens ect... and now she is on a blended diet full time. We started this in late June, with the wonderful donation of a Vita Mix blender from Grandma and Grandpa Denisons friends, we were able to do it and do it right. We consulted with her feeding therapist, her nutritionist, families from Yahoo Blended Food Group and other families, we finally got the diet down pat. So she has been doing so incredible since the change. She is gaining weight, slowly but surely, her color, hair, nails are soo healthy. Her bms are getting better, her cognitive skills are improving, and she is soo happy almost all the time.
Then we moved. URG!!! What a crazy time. We were suppose to of been in our new house in July, and it just kept getting dragged. So for a week or so we were "homeless"... staying at friends and relatives.... then having one large move all at once.... it was a crazy crazy CRAZY time... but all worth it. Just getting settled still taking our time.
Darin is still working at Big Two Toyota.... working crazy hours, missing him being at home at night and not bringing in much at all....but we are managing the best we can.
Sarah started back at her Academy in mid August. They have built a new building and it is amazing. It took some time transitioning, but after a few weeks she started to settle in. She had a new place to go to, new provider, new schedules and a new therapists... music.
She was doing soo well until the last week of September. Her academy teachers noticed the area above her shut was swelling. We had taken he in to see her dr and he referred us to a Neuro surgeon. So we got in with in the next few days and after evaluation, he said it was fine. WHEW!!!
But she continued to have mild but evident seizures. So on Thursday, Sept 24th, we took her to the ER. She had seen her pediatrician again and to his suggestion we get her in right away.
She was evaluated by the ER doc and soon after her new neuro surgeons Dr. Ruzicka and Dr. Elton came for a visit. After a urine and blood tests were done, it was determined that her sodium levels were really low 121. So she was admitted. We met a wonderful Dr. Jay Cook. He really took the bull by the horns and spent soo much time with her case and with us. Since her current neurologist is at another hospital, St. Joseph Medical Center, her pediatrician does not have rights there. He can not cross care for her or over see her at that hospital. So with alot of thought and discussions and after the compassionate care he provided not just to Sarah but to us, we have decided to switch. I would never want to take convience over quality of care, but these doctors are all in one group and are amazing and are at the same hospital as her pediatrician is at so it will make it so much easier for all her specialist involved to care for her.
So.... we spent a week in the hospital trying to regulate her sodium levels. He also wanted her to get off the Trileptal the ONLY seizure medication she has been on for a while, because that is a contributor to sodium depletion.
As of the end of September, she was being weaned off Trileptal and on to Topomax. We upped her sodium levels in her diet as well by adding in chicken broth. Once she was back up to a good level 131, she got to go home. She has to have weekly blood draws as well to check that levels are good.
We thought we were on a good track... but seizures were still coming on and they were becoming more frequent, stronger and lasting longer. They were soo often that again another call to both her pediatrician and her neurologist, they said to get her to the ER via ambulance. This occurred October 12th. Again another week in the hospital, for observation and adding more meds.
They did blood work, for medication and sodium levels. They put her on another mediation called Dilantan and for a few days checked blood levels to make sure it was doing what it is supposed to do. They did an EEG as well.
So.... the not so good news is that there are seizures coming not only from the left, but from the right as well. I was stunned, shocked and still in denial. I do know the reality of this and I am numb and heartbroken. I just do not know what to think right now. We don’t know why there are seizures on her good side, her left side. But they are and we are just going to have to take one day at a time.
We are home now and she is on a new medication Banzel as well as Topomax and Dilantan. It is alot for her to handle, but we are going on these slowly. We have noticed a change... they are different.... some are the same too. I am keeping track of all of her seizures that I possible can, her medication transitions, as well as changes in her behaviors. She has been a bit weak, due to the 5 day hospital stay and the new meds, but all in all she has been an awesome sweet girl.
We are keeping her home for the next few days just to be on the safe side and slowly transition her back to school. I dont want to overwhelm her too much to fast.
I will get post recent pictures on her Picture link. The ones that are on this page from June have disappeared.... dont know why, but I will try to get those back up once I can.
As for the rest of us ..... we are just dealing and living the best we can. Hannah started 1st grade this fall and so far she is doing wonderful. She has made some good friends and she is going to be accepted into the Accelerated Reading program some time this fall. She has been such a trooper thru all of this and we are all sooo proud of her. We are proud of both of are girls.
Thanks to all of you that has kept in touch with us via Facebook and THANK YOU ALL for all your thoughts and prayers. It has helped and been such a blessing to have your support.
I will do my best to keep this up to date.
I want to close by saying Thank You to Mandy, Sarah's provider, Grandma and Grandpa Karen, Aunt Chris, Nana, Darin, for helping me out these last 2 times Sarah was in the hospital. All your help has meant the world to me.
Love,
Vicki
October 28th 2009
Back again to go over our last week........
After discharged from the hospital last week, she was back in again. She was readmitted on October 24, Saturday afternoon due to a high fever, and a rash that was getting worse. I called her peditritian and he said to get her down to the ER right away. As I came in with Sarah, the nurse that took care of Sarah the last 2 times in the ER was at the front desk.... We saw each other and smiled and I said "Wereee backkk" So luckilly we got a room in the ER right away.
Again they did a urine and blood test. They said her blood count and white blood cells were low and hooked her up to an IV. We got there about 4:30 pm and had a room on the 3rd floor by 10pm. After going over ALLL the typical things when you get a room, and more blood work and a nose swab AND changing out and re doing the IV she finally got to rest a few hours. I may of slepted a hour at the most.
Sunday,morning came 10/25 and we saw her peditritian, since her fever was still going up and down and her rash coming in worse.... he said she will need to stay a few day until we can figure out what was causing what. Plus they think she had a virus of some sort.
So Sunday night, Dr. Cook came in. We had a long talk about how events were taking place and what could be going on. Since her platelets were not going up, he wanted to take her off Dilantan right away. So now she was just on Banzel and Topomax. We also are going to have to re start her blended diet and start from scratch. URG!!!!
I also asked about this out of the ordinary "Laughing Spells" she was having. It is as if she is a happy drunk child. I assumed that this was a side effect from one of the medications. Well he said it is not. It is called "GALECTIC SEIZURES" I practically fell apart. No way can she have another kind of seizure!!!!! So now that is something to keep our eyes open for and document.
Sooo... Monday moring seizures were on and off and given Adivan when she had seizures over 8 minutes. We were now also feeding her via pump Pedisure along with her blended diet and we were getting low on that too. She was sooo fussy and soo tired and could not get comfortable. Thank goodness Nana was there to releave some of the pressure for me.
She started to finally perk up around noon and seemed feeling a bit better. Still are waiting for the swab test to make sure she does not have a virus and she still has a mild fever.
Throughout the day..... she was on and off again fussy, on and off again happy. She did have at least 3 huge, huge diapers and we were happy about that!!!!
Finally she fell asleep about 10pm and slepted most of the night. I went home that night to sleep while Darin stayed. I was wipped out!
Tuesday morning, came in and Darin went home. Uneventful as it was. Dr. Salak... Sarah's other peditritian came in around 9am and checked all her vitals. He said.. he felt since Sarah did good the lst 24 hours and fever was down for quite a while, he saw no reason for us to still be here. There are wayyy to many sick kiddos here and dont want to jepordize Sarah's health any more than it is. So we got to come home!!
Once home Sarah got a bath. She was a bit out of sorts... and even threw up a feeding. But we are working on getting her back on track.
During the evening feeding Sarah was just in a funk. I think looking back she was just so over tired and just could not get settled. It took her a few days to get back on track. But for now she is doing well. We will check in later.
I added new pictures from the beginning of the year to just before Halloween. I will get those added lsoon. Please check out her "Picture" tab!!
Thank you all for your loving support and all the prayers!!!
Love,
Darin and Vicki
These are MY girls!!!
