Well I will take this opportunity to get you up to date with what is going on with our family now. Christmas is approaching and as a result, school is a flood of parties and field trips. Today I went on a field trip with McKay and the elementary honor choir around the community caroling. Those kids are so cute and they sing so well. They were in the local Albertsons dancing and singing away. They also visited the post office, the local bank, the police department, and the Home Depot. McKay is in 4th grade now, and just turned 10 back in October. She is getting so big and growing up too fast if you ask me. It is all about Webkinz and electronics now. She has a lot of friends and is doing amazing in school. She is consistently on the honor roll and she is also in the gifted and talented program.
Alexa is in 2nd grade now, she just turned 8 on Nov. 24. She and McKay both had their birthday parties at the Texas Teddy Bear Factory. They love those stuffed animals! I have tubs of them and they just can't seem to get enough. The Webkinz are the biggest thing now though, and I had to make a rule to cap them at 20. I know that seems like a lot, but there are kids with more than 50! They want to use any money they earn or are gifted to buy them. Alexa is also doing so great in school. She is the only 2nd grader in the gifted and talented program! They had to put her up with the 3rd graders and the gates teacher said that she even brings that group up with the questions she asks. I know -I can't help but brag on my girls.
I was just thinking the other day that I should be enjoying every day of this age they are at right now. They are not adolescents yet, and they still think I am pretty cool. They have their moments of fighting, but for the most part, they are just a joy.
Grace is also at a great age. She is starting to notice more things and still is not too big to hold and carry. She loves to cuddle and is just so sweet. She will crawl up to me and put her head on my arm or leg or put her arms up to be picked up. If I ask for a hug, she will put her head down on me for a hug. She squeals with delight and flaps those little arms every time she sees someone she loves. She has become so much better with the crying for me now that we are working on a program in Applied Behavior Analysis(ABA). She would cry for me when she wanted me or wanted something. We have begun under the direction of our Behavior Analyst to ignore the problem behavior, and only praise or acknowledge her when she has been calm for at least a minute. She will now come and sit at my feet as I cook or do chores and tug on my pants. I think it is so cute. She still does horse therapy every week and is consistently making progress with that. Her teachers at school love her and she does so well there.
Life is good at the Dendy house. I have Jenny our respite caregiver 30 hours a week, she started back in June and has really bonded with Grace. She and her husband Forest have become members of our family. I am so grateful for her help and so glad to have found someone that we both trust and like.
We finally broke ground on our new home! The bulldozers were clearing out trees the other day and I can't wait to see them level it and lay the forms. We are hoping to be done in June sometime. This house is amazing and it was designed by me, Dallas, and my brother David. It will be wheelchair accessible and also have a part of the house that is Grace safe as well as a part of the house that we can put all of our breakables and other things and they will be safe. We are so blessed to be able to do this. Our builder is a friend of Dal's brother and he agreed to do this for our family at a significantly lower profit for him. He is amazing and we are so greatful to him for doing this for us.
Dallas is still working for Fidelity Investments after more than 11 years and they are so good to him. He is still in the bishopric in our church congregation and works 80-100 hours a week on top of his calling at church. People often wonder how we do it with him gone so much traveling etc., but we have just grown accustomed to it. He does get 4 weeks of vacation every year and when he is in town, his hours are flexible allowing him to come to school and church activities with our family.
I am on the PTA board this year and I just love our little school. The principal is great and the staff are as well.
I will update more as the days progress, this journaling thing is new, but I hope to make a habit of it. It is a great way to record thoughts and activities.
Friday, December 7, 2007
Sunday, November 18, 2007
Acceptance
This is the last post of my back history and after this I can begin to blog about life in the present. This has been so helpful to relive this experience. One of the leaders of our church gave a talk in our general conference from Salt Lake last month and in it he said that keeping a journal helped him to see the hand of God in his family's life. He began to recognize the things that he might have missed if he had not been recording it. I feel so much the same way, and it was actually his talk that inspired me to start this blog. So as I bring you up to the present, I do it with gratitude in my heart for all that the Lord has done for me as I have traveled this road.
I failed to share this earlier in my posts because I felt like it would sound to preachy to those who might not be of my faith, but as I think about it it is merely evidence of the fact that God hears and answers our prayers. The experience is this:
Shortly after finding out about Grace's issues, I found myself on my knees frequently. In the past, I have searched for comfort in the scriptures. One night while I was on my knees, begging for comfort that Grace would be alright, I decided to open the scriptures randomly and see what I might be guided to read. The verses I opened to read: "Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks;
Waiting patiently on the Lord, for your prayers have entered into the ears of the Lord of Sabaoth, and are recorded with this seal and testament-the Lord hath sworn and decreed that they shall be granted. Therefore, he giveth this promise unto you, with an immutable covenant that they shall be fulfilled; and all things wherewith you have been afflicted shall work together for your good, and to my name's glory, saith the Lord." This was a revelation given to the saints in the early church, but as we know the scriptures can be applied to us today.
I have read and re-read this scripture countless times. It could not have come at a better time and I have received such strength from its words.
I know that it does not mean that Grace's disability will be cured or taken away. I know that it means that we will be ok. I love the part about it being for our good and to the Lord's glory. It has been exactly that and I know it always will be. We have a beautiful spirit entrusted to our care. She deserves to have a good, happy life. She wants to be loved and cared for just as much as anyone else. Her disability did not take that away. In addition, I have two other children who deserve a good, happy life as well. My husband and myself deserve the same. I can't let a defect in a mortal body steal those fundamental needs and wants. I am the type of person who wants to be happy. If something is happening in my life to make me unhappy, I will fight like heck to get back to happy again.
Right before Grace began having problems, I was kneeling in prayer one night. I was overwhelmed with a feeling of gratitude for such a great life as we were leading at the time. Grace was the sweetest baby, McKay and Alexa were doing so well, and our lives seemed charmed. I remember thinking, it is almost too perfect. I hope it never ends. When is the other shoe going to drop? When will the trials start? Shortly after that, they did start.
The other night- five years after that experience, I found myself thinking the same thing. I can be as happy as I was prior to having a child with a disability. I am as happy as I was. It took a while to get here, and it took a long struggle, but I am here.
As I became more involved in the Angelman community, I found friends, insight, help and support. Those were the things that pulled me out of my hole. Every parent of a SN child needs to be with other parents in similar situations. It helps so much, that I dare say it is requisite to coming to the vital acceptance stage.
Grace now attends school a half day. She has been going since she was three and loves her class. She gets therapy at school and does lots of inclusion with the pre-k class. She does private physical and occupational therapy in conjunction with horse therapy every week. She gets private speech therapy as well. There are things that are still difficult, like her crying when she wants me or wants to communicate something and her lack of speech stops her from being able to. She pulls my glasses off several times a day, she pulls hair sometimes and throws her toys when she is through playing with them. She bites her hand when she gets frustrated and puts her hands in her mouth alot. Along with the drooling, it can be a futile effort to keep her dry. She is still not walking and getting bigger and heavier to carry. These are small inconveniences compared to the ways she blesses our lives.
She loves to laugh. She recognizes songs on the radio she likes and giggles when they come on. She loves it when you threaten to tickle her and come to get her. She giggles and puts her foot up as a shield. She squeals and giggles when she sees someone she likes and crawls to see you. She puts her arms up to be picked up and loves to cuddle. She gives great hugs even though she hasn't learned how to put her arms around people yet. She just puts her head down on your shoulder. It is so cute I could die. She crawls up to you and puts her head down on you or gently rubs your arm or leg. She loves crashing or banging sounds and they can send her into fits of giggles. She loves to watch the funniest home videos show and see people crash. She has one word:"HI" and she uses it a lot. She says it to strangers walking by and it is so cute. She patty cakes and high fives with the best of them. She does the sign for more and claps very well. She loves Blues Clues, Dora, and Elmo. When you start one of her favorite videos- she squeals with delight. She bounces to music and smiles. She laughs at jokes and we can't figure if she really understands them, but she sure seems to a lot of times. She will walk with you if you hold her hands, and if she sees someone or something she likes, she will almost take off without you. She loves babies and will get nose to nose with one and giggle. She gives the best open mouthed slobbery kisses. She loves it when I say her prayers for her as if I were her, she smiles and squirms with delight through the whole thing.
I will be able to share more wonderful things about Grace and about our lives with her as I make more entries, but for now, I need to go to bed.
I failed to share this earlier in my posts because I felt like it would sound to preachy to those who might not be of my faith, but as I think about it it is merely evidence of the fact that God hears and answers our prayers. The experience is this:
Shortly after finding out about Grace's issues, I found myself on my knees frequently. In the past, I have searched for comfort in the scriptures. One night while I was on my knees, begging for comfort that Grace would be alright, I decided to open the scriptures randomly and see what I might be guided to read. The verses I opened to read: "Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks;
Waiting patiently on the Lord, for your prayers have entered into the ears of the Lord of Sabaoth, and are recorded with this seal and testament-the Lord hath sworn and decreed that they shall be granted. Therefore, he giveth this promise unto you, with an immutable covenant that they shall be fulfilled; and all things wherewith you have been afflicted shall work together for your good, and to my name's glory, saith the Lord." This was a revelation given to the saints in the early church, but as we know the scriptures can be applied to us today.
I have read and re-read this scripture countless times. It could not have come at a better time and I have received such strength from its words.
I know that it does not mean that Grace's disability will be cured or taken away. I know that it means that we will be ok. I love the part about it being for our good and to the Lord's glory. It has been exactly that and I know it always will be. We have a beautiful spirit entrusted to our care. She deserves to have a good, happy life. She wants to be loved and cared for just as much as anyone else. Her disability did not take that away. In addition, I have two other children who deserve a good, happy life as well. My husband and myself deserve the same. I can't let a defect in a mortal body steal those fundamental needs and wants. I am the type of person who wants to be happy. If something is happening in my life to make me unhappy, I will fight like heck to get back to happy again.
Right before Grace began having problems, I was kneeling in prayer one night. I was overwhelmed with a feeling of gratitude for such a great life as we were leading at the time. Grace was the sweetest baby, McKay and Alexa were doing so well, and our lives seemed charmed. I remember thinking, it is almost too perfect. I hope it never ends. When is the other shoe going to drop? When will the trials start? Shortly after that, they did start.
The other night- five years after that experience, I found myself thinking the same thing. I can be as happy as I was prior to having a child with a disability. I am as happy as I was. It took a while to get here, and it took a long struggle, but I am here.
As I became more involved in the Angelman community, I found friends, insight, help and support. Those were the things that pulled me out of my hole. Every parent of a SN child needs to be with other parents in similar situations. It helps so much, that I dare say it is requisite to coming to the vital acceptance stage.
Grace now attends school a half day. She has been going since she was three and loves her class. She gets therapy at school and does lots of inclusion with the pre-k class. She does private physical and occupational therapy in conjunction with horse therapy every week. She gets private speech therapy as well. There are things that are still difficult, like her crying when she wants me or wants to communicate something and her lack of speech stops her from being able to. She pulls my glasses off several times a day, she pulls hair sometimes and throws her toys when she is through playing with them. She bites her hand when she gets frustrated and puts her hands in her mouth alot. Along with the drooling, it can be a futile effort to keep her dry. She is still not walking and getting bigger and heavier to carry. These are small inconveniences compared to the ways she blesses our lives.
She loves to laugh. She recognizes songs on the radio she likes and giggles when they come on. She loves it when you threaten to tickle her and come to get her. She giggles and puts her foot up as a shield. She squeals and giggles when she sees someone she likes and crawls to see you. She puts her arms up to be picked up and loves to cuddle. She gives great hugs even though she hasn't learned how to put her arms around people yet. She just puts her head down on your shoulder. It is so cute I could die. She crawls up to you and puts her head down on you or gently rubs your arm or leg. She loves crashing or banging sounds and they can send her into fits of giggles. She loves to watch the funniest home videos show and see people crash. She has one word:"HI" and she uses it a lot. She says it to strangers walking by and it is so cute. She patty cakes and high fives with the best of them. She does the sign for more and claps very well. She loves Blues Clues, Dora, and Elmo. When you start one of her favorite videos- she squeals with delight. She bounces to music and smiles. She laughs at jokes and we can't figure if she really understands them, but she sure seems to a lot of times. She will walk with you if you hold her hands, and if she sees someone or something she likes, she will almost take off without you. She loves babies and will get nose to nose with one and giggle. She gives the best open mouthed slobbery kisses. She loves it when I say her prayers for her as if I were her, she smiles and squirms with delight through the whole thing.
I will be able to share more wonderful things about Grace and about our lives with her as I make more entries, but for now, I need to go to bed.
Saturday, November 10, 2007
Emergence
I think that it is rather interesting that my emergence from my "funk" began with a series of unhappy events. In the spring of 2006, I began to notice that Grace would stop periodically and look down. She almost looked tired as if she were dozing off. My mother in law said that she noticed them too and always thought Grace was tired when it happened. One night as I was laying by Grace and putting her to bed, I had a sudden realization. These were very likely to be seizures. My heart jumped up into my throat. I thought we were free and clear from seizures by now. It had been more than two years since her infantile spasms seizures stopped. I got onto the internet and looked up absence seizures. I was relieved when they described these type of seizures as basically harmless- just a bit of a nuisance. I called the neurologist's office and let them know that I suspected Grace was having these seizures. They scheduled Grace for an eeg. He confirmed my suspicions, but when I asked if they were harmless, he told me that in a normally developing child that would more likely be the case. With Grace, any type of seizures could cause her development to slow down or regress. I was sad, but not as devastated as before, mostly because I felt numb to that emotion anymore. I also knew that these were not as damaging as the infantile spasms.
The neuro put Grace on a seizure med called Keppra, and they stopped very quickly. I was relieved. It was kind of funny because I had just recently commented to family that I was so grateful that I didn't have to worry about seizures or giving seizure meds anymore. I began to look for more resources on the internet finally. I joined an internet group of parents of children with infantile spasms. It was so nice to chat with parents whose kids had been through what Grace did. I wondered why I waited so long to do it. It proved to be very healing and therapeutic.
About three months later, however, Grace began having the seizures again. After two or three med increases, they still did not stop. The neuro scheduled her for a 24 hour video eeg. It was our first overnight stay in a hospital- and so far our only one. (knock on wood) These eegs are different from the one hour ones. They get out a big vacuum sounding air machine and basically glue the connections onto the patient's head with a very nasty smelling adhesive. It was loud, and Grace hated it. Once she got settled though, we sat on her bed and played with toys and books and watched tv. We had to stay in view of the camera at all times though, with only short potty breaks allowed. We had a four year old roommate who made constant visits to our bed to play with Grace. It was nice to visit with her mom, but I would have preferred a private room. I hear that they have a new epilepsy dept. there with remodeled private rooms now. I hope we don't have to go back to visit it though. Getting the glue out of her hair the next morning was almost impossible, and we were picking it out of her thick hair for a few days.
The neuro turned us completely over to the care of an epileptologist. I hated to lose him, he was a great doctor. Our new doctor read the eeg and made an interesting comment in the chart. He said that her eeg looked like a typical eeg of a child with Angelman Syndrome and that we should have Grace tested for it. Well when the nurse told me this, I immediately went online to research it. When I read the diagnostic criteria for Angelman, I was floored by how much it sounded like Grace. Seizures, small head size, arm flapping, balance disorder, lack of speech, happy disposition, frequent laughter, drooling, mouthing behaviors etc... I made a list of about 50 characteristics and she matched almost all of them. I was convinced that she had AS. I felt like I belonged somewhere and couldn't wait to get her tested.
I had an appt with the epileptologist that read her eeg and coincidentally he was the one assigned to be our new neuro. He remembered her eeg and agreed that we should get her tested. Angelman Syndrome is a genetic disorder where the 15th chromosome is affected. The most common form is where there is a deletion or piece missing on the 15th chromosome. There are tests for about four other mutations on the gene as well. All are different variations of Angelmans. I began to look for support groups for parents of kids with AS. I found a forum and a listserv. I stayed on the listserv and made many good acquaintances and friends there. They were so welcoming and encouraged me to pursue the diagnostic tests for AS.
We had Grace tested for a few of the forms of AS and unfortunately they all came back negative. We also had her tested for Rhett syndrome which is in a similar family as Angelman and it also came back negative. Despite feeling a bit unsatisfied, I wasn't sad because I had found a group of parents with kids just like Grace. I eventually left the group for kids with IS as Grace was so far removed from that experience and settled into the AS community full time. I am still on the listserv and have met many families and received so much help and support from them. Joining this group has been the single most helpful thing I have ever done to help me and Grace.
I have gotten almost every helpful piece of equipment for Grace that we own from a link or suggestion from this group. I have made good friends. We were able to meet a cute family who have an adopted son with AS who is only a year younger than Grace. We get together rather regularly. Grace is cute with him and they like to see each other.
I need to end this for now, but next time....acceptance.
The neuro put Grace on a seizure med called Keppra, and they stopped very quickly. I was relieved. It was kind of funny because I had just recently commented to family that I was so grateful that I didn't have to worry about seizures or giving seizure meds anymore. I began to look for more resources on the internet finally. I joined an internet group of parents of children with infantile spasms. It was so nice to chat with parents whose kids had been through what Grace did. I wondered why I waited so long to do it. It proved to be very healing and therapeutic.
About three months later, however, Grace began having the seizures again. After two or three med increases, they still did not stop. The neuro scheduled her for a 24 hour video eeg. It was our first overnight stay in a hospital- and so far our only one. (knock on wood) These eegs are different from the one hour ones. They get out a big vacuum sounding air machine and basically glue the connections onto the patient's head with a very nasty smelling adhesive. It was loud, and Grace hated it. Once she got settled though, we sat on her bed and played with toys and books and watched tv. We had to stay in view of the camera at all times though, with only short potty breaks allowed. We had a four year old roommate who made constant visits to our bed to play with Grace. It was nice to visit with her mom, but I would have preferred a private room. I hear that they have a new epilepsy dept. there with remodeled private rooms now. I hope we don't have to go back to visit it though. Getting the glue out of her hair the next morning was almost impossible, and we were picking it out of her thick hair for a few days.
The neuro turned us completely over to the care of an epileptologist. I hated to lose him, he was a great doctor. Our new doctor read the eeg and made an interesting comment in the chart. He said that her eeg looked like a typical eeg of a child with Angelman Syndrome and that we should have Grace tested for it. Well when the nurse told me this, I immediately went online to research it. When I read the diagnostic criteria for Angelman, I was floored by how much it sounded like Grace. Seizures, small head size, arm flapping, balance disorder, lack of speech, happy disposition, frequent laughter, drooling, mouthing behaviors etc... I made a list of about 50 characteristics and she matched almost all of them. I was convinced that she had AS. I felt like I belonged somewhere and couldn't wait to get her tested.
I had an appt with the epileptologist that read her eeg and coincidentally he was the one assigned to be our new neuro. He remembered her eeg and agreed that we should get her tested. Angelman Syndrome is a genetic disorder where the 15th chromosome is affected. The most common form is where there is a deletion or piece missing on the 15th chromosome. There are tests for about four other mutations on the gene as well. All are different variations of Angelmans. I began to look for support groups for parents of kids with AS. I found a forum and a listserv. I stayed on the listserv and made many good acquaintances and friends there. They were so welcoming and encouraged me to pursue the diagnostic tests for AS.
We had Grace tested for a few of the forms of AS and unfortunately they all came back negative. We also had her tested for Rhett syndrome which is in a similar family as Angelman and it also came back negative. Despite feeling a bit unsatisfied, I wasn't sad because I had found a group of parents with kids just like Grace. I eventually left the group for kids with IS as Grace was so far removed from that experience and settled into the AS community full time. I am still on the listserv and have met many families and received so much help and support from them. Joining this group has been the single most helpful thing I have ever done to help me and Grace.
I have gotten almost every helpful piece of equipment for Grace that we own from a link or suggestion from this group. I have made good friends. We were able to meet a cute family who have an adopted son with AS who is only a year younger than Grace. We get together rather regularly. Grace is cute with him and they like to see each other.
I need to end this for now, but next time....acceptance.
Saturday, November 3, 2007
The years of being stagnant...
After Grace finished her round of steroid treatment and her seizures were now gone, I began an interesting era in my life. I was still spooked from the things I had read on the internet, and I did not get back on to search for help with Grace for about 2 1/2 more years. I came out of my deep grief and denial, but I was still bargaining. I still had hope that Grace would grow out of this and at least catch up to the point where noone could tell she had a disability. I was just thinking about this time the other day. I recall the constant feeling of guilt and almost panic that we needed to be doing therapy therapy therapy. I went over body parts in the bath tub. I used flash cards and books to teach her words over and over. I would do stretches on her legs to alleviate the tightness in her muscles. We were receiving in-home therapy through the early childhood intervention program, and I set goals to do a set amt of therapy with her every day. I found a book called "What to do About Your Brain Injured Child" by Glenn Doman. I read in this book about a type of therapy program which supposedly "bridges" the injured part of your child's brain and helps them to achieve many physical and mental goals. The program, however, was very time intensive. In some cases more than 8 hours a day. The results reported in the book though, were amazing.
I decided to ask my neurologist about this approach. He knew about the Doman method, and recalled when it first came about in the 70s people flocked to try this therapy. He said that people gave up everything and all of their time to do this and only achieved what he called "mild" improvement. He said that all of the best parts of the method, like vestibular stimulation, repetitive movements and therapies, brushing techniques etc were adopted into mainstream therapies and that the allure of the program wained. I have to admit that the thought of doing therapy 8 hours a day and depending on volunteers to help with it seemed a bit daunting. One particular part of the therapy was a thing called "patterning" which consisted of four people, one for each limb, to make bending and straightening movements which resembled crawling, a repeated number of times every day. This required patience and a lot of help obviously. The theory is that these repetitive movements create the bridge in the brain over the part that is impeding crawling or walking in the affected individual. We tried this with the enlisted help of Dallas, McKay, and grandparents. We were only mildly effective at keeping a routine up. It was just too hard to get that many people twice a day and besides that Grace became increasingly unhappy about this therapy.
I did read a couple of stories of children with IS on the internet. I was desperately looking for stories of children who had recovered and were leading normal lives. I have found that alot of parents do this in the initial stages. I found the story of a girl whose parents were very holistic and had not even gotten their daughter vaccinated and she still got infantile spasms. There is speculation that getting the pertussis vaccine increases the risk of IS. A friend and chiropractor told me that it was Grace's vaccine that had caused her IS. After reading this story the guilt of getting her vaccinated subsided. Another story I read was about a family who visited a facility similar to the Doman program facility in Pennsylvania in Oregon. It was called the Northwest Neurodevelopmental Training Center. I began to read up on this place. The more I read, the more I became interested in visiting their facility. I talked to Dallas and we decided to use his frequent flyer miles to go up and pay them a visit. I have an aunt-my mother's sister- who lives in suburban Washington state and we thought that the trip would be a good way to visit her and the NNTC and also have a nice trip for our tenth wedding anniversary.
We made the travel arrangements and called my Aunt Daisy Dean to see if we could spend a couple of nights with her. We left McKay and Alexa with Dallas' parents for the time we were gone. We went in the spring of 2004- Grace was 1 1/2 yrs. old. We had a lovely vacation, we went to Canada, to the beach in Oregon, visited with my aunt, and also went to the NNTC. They set us up on a program similar to the Doman one, and it only required about 45 minutes a day. The only problem for me was the patterning. It would require the help of volunteers to do it with her twice a day. We were to do brushing on her skin to help with the sensory issues, we were to do spinning to help with vestibular issues, -I can't remember all of the recommendations, but there were a few more. Grace proved to be a good traveler, and we enjoyed ourselves.
When we arrived home, getting on this program proved to be a chore. Whenever I thought about trying to get all the volunteers required for the patterning alone, I became very overwhelmed. I have a hard time functioning when I feel this way. I had guilt to the max thinking that I was being selfish for not wanting to commit to this. I also had guilt whenever I let any of her traditional therapies slide at all. Some days I just was too tired or overwhelmed and couldn't get them done. I felt like if I didn't do these things that Grace wouldn't make the progress she needed to.
I still felt desperate to find the "miracle cure" for Grace. As I mentioned before we had Grace in chiropractic care for a while. I think we pursued it for about a year. She had many problems with IBS and constipation and we thought the chiropractic would help with that if anything. It really didn't have much of a result even with regular adjustments. I have used chiropractors frequently for back problems and the treatment saved me from what were some pretty substantial back injuries, but the other aspects of the treatment never materialized for Grace. We tried two different nutritional supplements that both promised and advertised amazing results with kids with disabilities. We tried each one for a year thinking that if we were to have any results that would be long enough to get them. These supplements both were very costly and we invested a lot of money to try them. Luckily, the second one had a program to help with the cost for using the supplement for kids with medical conditions and we used that gratefully. I will not put the names of the products here, but if you want to know, you can contact me directly. One of them even has an almost miraculous story about pretty much "curing" a young girl of down syndrome. After this time of chasing miracle cures and therapies and not getting any results, we learned a lot of valuable lessons.
We continued like this until Grace was 3 years old. The continuous cycle of therapy, guilt, therapy, hope, and remaining a shell of the person I once was. I didn't enjoy cooking, gardening, scrap booking, or any of the other hobbies I used to enjoy. I was able to go through every day life feeling about half way back to normal. We had fun vacations, family get togethers, and overall it was an ok time, but on the inside I had constant guilt, hope and the feeling of being overwhelmed. I was grateful however, that she had not had any more seizures. We concluded that since she had not had any more seizures for more than 2 years, that she would most likely never have any more.
Next time....emergence.
I decided to ask my neurologist about this approach. He knew about the Doman method, and recalled when it first came about in the 70s people flocked to try this therapy. He said that people gave up everything and all of their time to do this and only achieved what he called "mild" improvement. He said that all of the best parts of the method, like vestibular stimulation, repetitive movements and therapies, brushing techniques etc were adopted into mainstream therapies and that the allure of the program wained. I have to admit that the thought of doing therapy 8 hours a day and depending on volunteers to help with it seemed a bit daunting. One particular part of the therapy was a thing called "patterning" which consisted of four people, one for each limb, to make bending and straightening movements which resembled crawling, a repeated number of times every day. This required patience and a lot of help obviously. The theory is that these repetitive movements create the bridge in the brain over the part that is impeding crawling or walking in the affected individual. We tried this with the enlisted help of Dallas, McKay, and grandparents. We were only mildly effective at keeping a routine up. It was just too hard to get that many people twice a day and besides that Grace became increasingly unhappy about this therapy.
I did read a couple of stories of children with IS on the internet. I was desperately looking for stories of children who had recovered and were leading normal lives. I have found that alot of parents do this in the initial stages. I found the story of a girl whose parents were very holistic and had not even gotten their daughter vaccinated and she still got infantile spasms. There is speculation that getting the pertussis vaccine increases the risk of IS. A friend and chiropractor told me that it was Grace's vaccine that had caused her IS. After reading this story the guilt of getting her vaccinated subsided. Another story I read was about a family who visited a facility similar to the Doman program facility in Pennsylvania in Oregon. It was called the Northwest Neurodevelopmental Training Center. I began to read up on this place. The more I read, the more I became interested in visiting their facility. I talked to Dallas and we decided to use his frequent flyer miles to go up and pay them a visit. I have an aunt-my mother's sister- who lives in suburban Washington state and we thought that the trip would be a good way to visit her and the NNTC and also have a nice trip for our tenth wedding anniversary.
We made the travel arrangements and called my Aunt Daisy Dean to see if we could spend a couple of nights with her. We left McKay and Alexa with Dallas' parents for the time we were gone. We went in the spring of 2004- Grace was 1 1/2 yrs. old. We had a lovely vacation, we went to Canada, to the beach in Oregon, visited with my aunt, and also went to the NNTC. They set us up on a program similar to the Doman one, and it only required about 45 minutes a day. The only problem for me was the patterning. It would require the help of volunteers to do it with her twice a day. We were to do brushing on her skin to help with the sensory issues, we were to do spinning to help with vestibular issues, -I can't remember all of the recommendations, but there were a few more. Grace proved to be a good traveler, and we enjoyed ourselves.
When we arrived home, getting on this program proved to be a chore. Whenever I thought about trying to get all the volunteers required for the patterning alone, I became very overwhelmed. I have a hard time functioning when I feel this way. I had guilt to the max thinking that I was being selfish for not wanting to commit to this. I also had guilt whenever I let any of her traditional therapies slide at all. Some days I just was too tired or overwhelmed and couldn't get them done. I felt like if I didn't do these things that Grace wouldn't make the progress she needed to.
I still felt desperate to find the "miracle cure" for Grace. As I mentioned before we had Grace in chiropractic care for a while. I think we pursued it for about a year. She had many problems with IBS and constipation and we thought the chiropractic would help with that if anything. It really didn't have much of a result even with regular adjustments. I have used chiropractors frequently for back problems and the treatment saved me from what were some pretty substantial back injuries, but the other aspects of the treatment never materialized for Grace. We tried two different nutritional supplements that both promised and advertised amazing results with kids with disabilities. We tried each one for a year thinking that if we were to have any results that would be long enough to get them. These supplements both were very costly and we invested a lot of money to try them. Luckily, the second one had a program to help with the cost for using the supplement for kids with medical conditions and we used that gratefully. I will not put the names of the products here, but if you want to know, you can contact me directly. One of them even has an almost miraculous story about pretty much "curing" a young girl of down syndrome. After this time of chasing miracle cures and therapies and not getting any results, we learned a lot of valuable lessons.
We continued like this until Grace was 3 years old. The continuous cycle of therapy, guilt, therapy, hope, and remaining a shell of the person I once was. I didn't enjoy cooking, gardening, scrap booking, or any of the other hobbies I used to enjoy. I was able to go through every day life feeling about half way back to normal. We had fun vacations, family get togethers, and overall it was an ok time, but on the inside I had constant guilt, hope and the feeling of being overwhelmed. I was grateful however, that she had not had any more seizures. We concluded that since she had not had any more seizures for more than 2 years, that she would most likely never have any more.
Next time....emergence.
Sunday, October 21, 2007
Treatment of IS
Infantile Spasms are the nastiest seizures. They steal your child from you. I dreaded putting Grace to sleep because I knew that shortly after awakening, she would begin seizing. I would hold her as she had her cluster of seizures and hug her and talk her through them. Sometimes we were in public and if I held her close no one could tell that anything was wrong. We just happened to be scheduled for an MRI a few days after Grace began having IS seizures-we had made the appointment at our first neuro visit a couple of months earlier. We met the doctor prior to the MRI and he agreed to do a spinal tap on Grace while she was under anesthesia to check for a certain metabolic disorder we had read about recently. He was the most awesome doctor- he sat on the board at the children's hospital and we caught him right in the middle of a week of inspections and meetings. We were walking with him to the room where they would put Grace under anesthesia and we happened upon a pack of suited hospital big-wigs on their way to another meeting. They inquired of our doc if he was on his way to the meeting as well. He replied that no, he was being a doctor right now. I loved that. I held Grace as they gave her the sedation and in only a few seconds she was as limp as a noodle. She had the spinal tap and MRI and all went well. When we received the results, they were normal except that her brain was a bit small for her age. One thing that IS does is show that development in the brain has stopped and this is evidenced by the head stopping growing. During the couple of weeks Grace was having her seizures, her head circumference was measured several times and it wasn't until the seizures stopped that it grew at all. Pretty scary when you think about it.
Grace's spinal tap test came back normal as well as several other metabolic and genetic tests for abnormalities. It seemed as though we had a mystery as to what caused these seizures. IS very rarely occurs in typical children. Most often it is a secondary condition brought on by some other health or developmental issue. I knew that Grace had a developmental issue of some kind, but we were in the dark as to whether it was genetic, metabolic, or just something that happened in utero. I read a statistic in my researching that said that only 50% of children with developmental delay ever get a diagnosis as to what caused it. When visiting with a metabolic/genetic specialist once he told me that we have only scraped the top of the myriad of genetic and metabolic disorders out there. There are thousands more we haven't even identified yet. I was floored by that. To some parents of these mystery children it is a constant battle and search to find what their child has-many will not solve that mystery. Jumping forward in time to now when she is five, I am content with accepting Grace as she is and I am not burdened with the unsolved diagnosis issue. If I hear of other tests, we will get them. Until then, Grace is just Grace.
Grace began steroid shots ten days after she began having IS. The steroid of choice in this country at least is called ACTH. When I picked it up at the pharmacy, I looked at the receipt. I paid 40.00 for two vials-the price before insurance: more than 2500.00. That might have even been per vial. I can't remember now. I was just forwarded an email recently stating that the price of ACTH is going up to more than 5 times that amount. Thank heaven for insurance. Grace began her shots on a Monday. It was the first day of kindergarten for my oldest child McKay. We took her to school and I left to the hospital. McKay lost her first tooth while this was going on as well. I should have been enjoying these momentous firsts with her, but I was steeped in grief. The nurse at the neuros office gave Grace her first shot. I would be getting a home health care nurse to my home for either two or three more injections (again I can't remember which) to teach me how to administer them and then it would be up to me. Our insurance didn't cover any more than that. I was scared to death. I hate needles. The nurse taught me how to give an intramuscular injection in her leg. She taught me how to put some numbing cream on first for about 15 minutes per my request. I felt much better about poking her if her skin was numb. I actually did a pretty good job for an amateur, but one time (I hate to even share this) I accidentally went too far to an angle and the needle came out the side of her leg. I about died-and I never did that again.
By the time Grace got her second shot, her spasms had disappeared completely. One other thing I read in my research was that stopping IS within the first month was crucial to getting the best outcome. I was thrilled that I didn't have to see those nasty seizures anymore. Unfortunately, not all parents get these results from ACTH or even other treatments, and they have to have their child on the shots longer or try several things before the seizures stop. I felt so thankful that we didn't have to go through that. ACTH has terrible side effects. Long term use can lead to serious problems. The worst side effect to me was the fact that it causes one to withdraw. No eye contact, no smiles, just a moaning blob. I missed Grace while she was in the fog of ACTH. I missed her smile and her laugh. She wouldn't look me in the eye. She also gained weight in her face and got what is called "moon face" from the swelling caused by the steroid. She would sit in her car seat on the floor and moan all day. I hated it. One time, we were having dinner at Dallas' cousin's house with a lot of family. She was on the floor in her car seat moaning away. Someone said something funny and we all laughed. Suddenly, Grace laughed too. Just a sweet giggle. Now that she is older, she does that a lot. She likes the sound of laughter. We were amazed to hear it that day though, and it seemed like a sign that our girl was on her way back.
Our neuro gave us great news after a follow-up eeg. We had just gotten the best case scenario for IS. Her eeg showed no more hyppsarythmia and her head began to grow again. We were so relieved. We were now able to wean her off of the shots. The day of her last shot I felt like celebrating. She stayed on topomax for a little while longer, but we were soon able to take her off of that as well.
Slowly, Grace began to come back to us. Her smiles were so welcome. This was a nightmare I will never forget and 2003 was one of the worst years of my life. By the time December came, I was ready for a new beginning and a road to healing and acceptance.
Next time....the years of being stagnant.
Grace's spinal tap test came back normal as well as several other metabolic and genetic tests for abnormalities. It seemed as though we had a mystery as to what caused these seizures. IS very rarely occurs in typical children. Most often it is a secondary condition brought on by some other health or developmental issue. I knew that Grace had a developmental issue of some kind, but we were in the dark as to whether it was genetic, metabolic, or just something that happened in utero. I read a statistic in my researching that said that only 50% of children with developmental delay ever get a diagnosis as to what caused it. When visiting with a metabolic/genetic specialist once he told me that we have only scraped the top of the myriad of genetic and metabolic disorders out there. There are thousands more we haven't even identified yet. I was floored by that. To some parents of these mystery children it is a constant battle and search to find what their child has-many will not solve that mystery. Jumping forward in time to now when she is five, I am content with accepting Grace as she is and I am not burdened with the unsolved diagnosis issue. If I hear of other tests, we will get them. Until then, Grace is just Grace.
Grace began steroid shots ten days after she began having IS. The steroid of choice in this country at least is called ACTH. When I picked it up at the pharmacy, I looked at the receipt. I paid 40.00 for two vials-the price before insurance: more than 2500.00. That might have even been per vial. I can't remember now. I was just forwarded an email recently stating that the price of ACTH is going up to more than 5 times that amount. Thank heaven for insurance. Grace began her shots on a Monday. It was the first day of kindergarten for my oldest child McKay. We took her to school and I left to the hospital. McKay lost her first tooth while this was going on as well. I should have been enjoying these momentous firsts with her, but I was steeped in grief. The nurse at the neuros office gave Grace her first shot. I would be getting a home health care nurse to my home for either two or three more injections (again I can't remember which) to teach me how to administer them and then it would be up to me. Our insurance didn't cover any more than that. I was scared to death. I hate needles. The nurse taught me how to give an intramuscular injection in her leg. She taught me how to put some numbing cream on first for about 15 minutes per my request. I felt much better about poking her if her skin was numb. I actually did a pretty good job for an amateur, but one time (I hate to even share this) I accidentally went too far to an angle and the needle came out the side of her leg. I about died-and I never did that again.
By the time Grace got her second shot, her spasms had disappeared completely. One other thing I read in my research was that stopping IS within the first month was crucial to getting the best outcome. I was thrilled that I didn't have to see those nasty seizures anymore. Unfortunately, not all parents get these results from ACTH or even other treatments, and they have to have their child on the shots longer or try several things before the seizures stop. I felt so thankful that we didn't have to go through that. ACTH has terrible side effects. Long term use can lead to serious problems. The worst side effect to me was the fact that it causes one to withdraw. No eye contact, no smiles, just a moaning blob. I missed Grace while she was in the fog of ACTH. I missed her smile and her laugh. She wouldn't look me in the eye. She also gained weight in her face and got what is called "moon face" from the swelling caused by the steroid. She would sit in her car seat on the floor and moan all day. I hated it. One time, we were having dinner at Dallas' cousin's house with a lot of family. She was on the floor in her car seat moaning away. Someone said something funny and we all laughed. Suddenly, Grace laughed too. Just a sweet giggle. Now that she is older, she does that a lot. She likes the sound of laughter. We were amazed to hear it that day though, and it seemed like a sign that our girl was on her way back.
Our neuro gave us great news after a follow-up eeg. We had just gotten the best case scenario for IS. Her eeg showed no more hyppsarythmia and her head began to grow again. We were so relieved. We were now able to wean her off of the shots. The day of her last shot I felt like celebrating. She stayed on topomax for a little while longer, but we were soon able to take her off of that as well.
Slowly, Grace began to come back to us. Her smiles were so welcome. This was a nightmare I will never forget and 2003 was one of the worst years of my life. By the time December came, I was ready for a new beginning and a road to healing and acceptance.
Next time....the years of being stagnant.
Wednesday, October 10, 2007
About Grace....the beginning
On Oct. 1, 2002, Grace was born. I was induced at 38 1/2 wks and being that she was our third child, I felt so prepared and knowledgable. I only had a couple of hours after the pitocin was started until she was born. She was as perfect and as sweet as can be. She nursed well, slept well, and was a good natured baby. I remember enjoying every moment of my 2 days in the hospital with her. We brought her home and she did very well for the first few months. She smiled at 6 weeks, and even laughed for the first time @ two months. I remember thinking that she was very advanced for doing that! She pushed up on her arms on time and was very aware and engaged. Because of this, however, I failed to notice the things she didn't do on time. I threw away the month-by-month developmental guide they give you at the hospital because I figured I knew it all by now.
At her four month appt., she passed her exam quite well. Now though, when I look back, I realize that she was already showing her delays by not rolling over or grasping at objects. At her 6 month check-up, it suddenly dawned on me during the exam that she was not even close to sitting up unassisted yet. The doctor didn't seem worried though, and told me just to take her home and work on it with her. I began trying to get her to grasp and hold objects and to work on her sitting. She kept her hands up in fists by her shoulders and arched her back while stiffening out straight-making it almost impossible to help her to sit.
One day when Grace was 7 1/2 months old, I got a phone call from a friend from church. We talked about some other things and then almost in passing, she asked me if Grace was sitting up yet. I told her that I was working with her on it. She said that she didn't want to worry me, but she had noticed in church that Grace was clenching her fists up high and acting stiff. She suggested that I get Grace into an early intervention therapy program. She worked in early intervention with kids with hearing impairments and she gave me a phone number to call. She said that we could get therapy to help Grace catch up. Then I noticed a hint of something behind the casual suggestion and I asked her point blank what she thought might be wrong with Grace. What she said next changed our lives forever. She said that she didn't want to worry me, but with the stiffness she was displaying she could have mild cerebral palsy. She said that she might only need special shoes or some therapy for a while until she catches up.
I really took the news quite well initially. My mother in law commented later that when I told her I seemed so matter of fact about it and without any hint of emotion. I think I was in shock. Suddenly, one day within a week or two, I just lost it. My good friend from high school called me at that very moment. I remember sobbing into the phone: "We think that Grace might have cerebral palsy!". My husband and one of our friends from church gave Grace a priesthood blessing. A few days later at church our friend commented to me that he felt very peaceful that we would be ok while he was giving Grace her blessing with Dallas. I recall feeling a sense of peace also. I received comfort from reading the scriptures as well. As I thumbed through them, I found passage after passage about peace and being thankful. I realized that we were in for a journey, and that we needed to count our blessings along the way in order to receive the peace we sought. This has proven true again and again.
We got Grace into early intervention therapy, and I took Grace to see our family practice doctor again. I began explaining to him what had happened over the past two months and just broke down again. He is a wonderful doctor and calmly referred me to an excellent pediatric neurologist at the local childrens' hospital. I remember wanting to go to this neuro and have him reassure me that everything would be ok. Dallas and I both went to the appt., and after a brief exam, he told us that he thought on a scale of 1 to 10, Grace was probably a 2 or 3 and that she would probably be able to catch up with the proper therapy. We left that appt. on cloud nine. We went out to celebrate on the way home at our favorite restaurant.
I began taking Grace to a friend who was a chiropractor. He heard our story and thought that regular adjustments would help her. I remember at this time, the thing that bothered me the most is that she would tip over even when sitting in her stroller or highchair. It was so depressing to me that my 8 month old needed to be propped up. I had hope at this time though, and was looking forward to getting Grace caught up. Then one night in August of 2003, everything changed dramatically again. This time it was much worse.
We had gone out to dinner with just Grace one Friday night. She was so sweet sitting there in her carseat while we ate, and I felt so happy and hopeful that evening. We got our kids into bed and went to sleep. When Grace awoke in the middle of the night, I picked her up and began to nurse her back to sleep. Suddenly, she began making movements as if she were startling every minute or two. She would put out her arms in front of her and jump as if someone had slammed a door. I suddenly remembered something the neuro had said to us in his office: sometimes startling can be a seizure. At that moment I knew that she was having seizures. I really wasn't terribly worried, I figured I would call the doc on Monday and that we would get them taken care of.
She only had the seizures right after she woke up and for only a few minutes. They weren't even violent or strong. I remember calling my chiro friend to ask him what he knew about seizures and he just said that adjustments do help to stop seizures in many cases. I called the nurse at the neuros office on Monday at 8 am and left a message. I got a return call rather quickly. She asked for a more detailed description of what was happening, and said she would ask the doc and call me back. Within another short period the doctor himself called me. He asked for another detailed description. When I finished I will never forget what he said. He simply said "Oh nuts" and I knew from the tone in his voice that it wasn't what he wanted to hear.
He informed me that it sounded like Grace was having a type of seizure called infantile spasms. He needed to do and eeg to confirm what he suspected. At first he could only get me in later in the week, but he sounded worried and called back with an appt. on Wednesday. Dallas and I took Grace in for the eeg. It was so sad to see her head all wrapped up with those wires coming out the top of the bandage. It was an hour for the eeg and we were taken directly in to see the doctor as soon as we were finished. Little did I know that that rarely happens-especially on such short notice. She didn't have any seizures during the eeg, but while they were taking her vitals in the nurses station after the procedure, she began having a cluster. I told the nurse to call the doc so he could see them. He came running and when he saw them, he just nodded and said that they were most definitely seizures. When we met with him in the office, he confirmed his suspicion of infantile spasms by showing us a particular wave pattern on her eeg called a hyppsarythmia (sp?). Hers was faint, and not as noticable as other kids he had seen with IS, but it was definitely there.
He told us that the gold standard for treating IS was a steroid called ACTH. It had to be special ordered and administered by intramuscular injection. He also started her on a sprinkle seizure med called topomax. We had to wait until Monday for the ACTH to be in and picked up so we could start it. It was so somber in that room. The doctor said that his hopes for her future had suddenly become much more bleak. He told us that he unfortunately could not tell us what to expect for her future, he just didn't have a crystal ball. I cried while holding her and saying-"but she's just so smart"...over and over. The nurse very quietly told us that she was sorry and that this type of seizure is the worst kind to have. I remember coming back to my in laws house where our older two were and breaking the news.
Our doc told us to go on the internet and read about IS. That was both the best and the worst idea. The best because I learned what we were really up against, but the worst because it was the most depressing internet search of my life. Sunday was my birthday. It was also the most depressing birthday of my life. I got up the courage to search on the internet that morning. When I read that IS has a very poor outcome and that 75-80% of children who get it end up moderately to severely mentally retarded, I began shaking and crying. I just wept and wept. I also learned that if the seizures are not stopped within the first month, that you can almost guarantee the worst outcome. Basically, these seizures are a sign that development in the brain has completely stopped. I couldn't believe that this was happening to us. We went over to my husband's parents for a birthday dinner and presents. I couldn't even eat a piece of cake and barely touched my dinner. Seriously, it was the saddest birthday ever.
I will continue her story next time. My fingers and eyes are tired. This is a story that may take a few posts to tell. Next time....treatment of IS.
At her four month appt., she passed her exam quite well. Now though, when I look back, I realize that she was already showing her delays by not rolling over or grasping at objects. At her 6 month check-up, it suddenly dawned on me during the exam that she was not even close to sitting up unassisted yet. The doctor didn't seem worried though, and told me just to take her home and work on it with her. I began trying to get her to grasp and hold objects and to work on her sitting. She kept her hands up in fists by her shoulders and arched her back while stiffening out straight-making it almost impossible to help her to sit.
One day when Grace was 7 1/2 months old, I got a phone call from a friend from church. We talked about some other things and then almost in passing, she asked me if Grace was sitting up yet. I told her that I was working with her on it. She said that she didn't want to worry me, but she had noticed in church that Grace was clenching her fists up high and acting stiff. She suggested that I get Grace into an early intervention therapy program. She worked in early intervention with kids with hearing impairments and she gave me a phone number to call. She said that we could get therapy to help Grace catch up. Then I noticed a hint of something behind the casual suggestion and I asked her point blank what she thought might be wrong with Grace. What she said next changed our lives forever. She said that she didn't want to worry me, but with the stiffness she was displaying she could have mild cerebral palsy. She said that she might only need special shoes or some therapy for a while until she catches up.
I really took the news quite well initially. My mother in law commented later that when I told her I seemed so matter of fact about it and without any hint of emotion. I think I was in shock. Suddenly, one day within a week or two, I just lost it. My good friend from high school called me at that very moment. I remember sobbing into the phone: "We think that Grace might have cerebral palsy!". My husband and one of our friends from church gave Grace a priesthood blessing. A few days later at church our friend commented to me that he felt very peaceful that we would be ok while he was giving Grace her blessing with Dallas. I recall feeling a sense of peace also. I received comfort from reading the scriptures as well. As I thumbed through them, I found passage after passage about peace and being thankful. I realized that we were in for a journey, and that we needed to count our blessings along the way in order to receive the peace we sought. This has proven true again and again.
We got Grace into early intervention therapy, and I took Grace to see our family practice doctor again. I began explaining to him what had happened over the past two months and just broke down again. He is a wonderful doctor and calmly referred me to an excellent pediatric neurologist at the local childrens' hospital. I remember wanting to go to this neuro and have him reassure me that everything would be ok. Dallas and I both went to the appt., and after a brief exam, he told us that he thought on a scale of 1 to 10, Grace was probably a 2 or 3 and that she would probably be able to catch up with the proper therapy. We left that appt. on cloud nine. We went out to celebrate on the way home at our favorite restaurant.
I began taking Grace to a friend who was a chiropractor. He heard our story and thought that regular adjustments would help her. I remember at this time, the thing that bothered me the most is that she would tip over even when sitting in her stroller or highchair. It was so depressing to me that my 8 month old needed to be propped up. I had hope at this time though, and was looking forward to getting Grace caught up. Then one night in August of 2003, everything changed dramatically again. This time it was much worse.
We had gone out to dinner with just Grace one Friday night. She was so sweet sitting there in her carseat while we ate, and I felt so happy and hopeful that evening. We got our kids into bed and went to sleep. When Grace awoke in the middle of the night, I picked her up and began to nurse her back to sleep. Suddenly, she began making movements as if she were startling every minute or two. She would put out her arms in front of her and jump as if someone had slammed a door. I suddenly remembered something the neuro had said to us in his office: sometimes startling can be a seizure. At that moment I knew that she was having seizures. I really wasn't terribly worried, I figured I would call the doc on Monday and that we would get them taken care of.
She only had the seizures right after she woke up and for only a few minutes. They weren't even violent or strong. I remember calling my chiro friend to ask him what he knew about seizures and he just said that adjustments do help to stop seizures in many cases. I called the nurse at the neuros office on Monday at 8 am and left a message. I got a return call rather quickly. She asked for a more detailed description of what was happening, and said she would ask the doc and call me back. Within another short period the doctor himself called me. He asked for another detailed description. When I finished I will never forget what he said. He simply said "Oh nuts" and I knew from the tone in his voice that it wasn't what he wanted to hear.
He informed me that it sounded like Grace was having a type of seizure called infantile spasms. He needed to do and eeg to confirm what he suspected. At first he could only get me in later in the week, but he sounded worried and called back with an appt. on Wednesday. Dallas and I took Grace in for the eeg. It was so sad to see her head all wrapped up with those wires coming out the top of the bandage. It was an hour for the eeg and we were taken directly in to see the doctor as soon as we were finished. Little did I know that that rarely happens-especially on such short notice. She didn't have any seizures during the eeg, but while they were taking her vitals in the nurses station after the procedure, she began having a cluster. I told the nurse to call the doc so he could see them. He came running and when he saw them, he just nodded and said that they were most definitely seizures. When we met with him in the office, he confirmed his suspicion of infantile spasms by showing us a particular wave pattern on her eeg called a hyppsarythmia (sp?). Hers was faint, and not as noticable as other kids he had seen with IS, but it was definitely there.
He told us that the gold standard for treating IS was a steroid called ACTH. It had to be special ordered and administered by intramuscular injection. He also started her on a sprinkle seizure med called topomax. We had to wait until Monday for the ACTH to be in and picked up so we could start it. It was so somber in that room. The doctor said that his hopes for her future had suddenly become much more bleak. He told us that he unfortunately could not tell us what to expect for her future, he just didn't have a crystal ball. I cried while holding her and saying-"but she's just so smart"...over and over. The nurse very quietly told us that she was sorry and that this type of seizure is the worst kind to have. I remember coming back to my in laws house where our older two were and breaking the news.
Our doc told us to go on the internet and read about IS. That was both the best and the worst idea. The best because I learned what we were really up against, but the worst because it was the most depressing internet search of my life. Sunday was my birthday. It was also the most depressing birthday of my life. I got up the courage to search on the internet that morning. When I read that IS has a very poor outcome and that 75-80% of children who get it end up moderately to severely mentally retarded, I began shaking and crying. I just wept and wept. I also learned that if the seizures are not stopped within the first month, that you can almost guarantee the worst outcome. Basically, these seizures are a sign that development in the brain has completely stopped. I couldn't believe that this was happening to us. We went over to my husband's parents for a birthday dinner and presents. I couldn't even eat a piece of cake and barely touched my dinner. Seriously, it was the saddest birthday ever.
I will continue her story next time. My fingers and eyes are tired. This is a story that may take a few posts to tell. Next time....treatment of IS.
Sunday, October 7, 2007
About our family
I thought I would take this post to tell you about our family. Next time I will tell the story of our journey with Grace so far.
Dallas and I were married in 1994. We met at church shortly after we both returned from serving volunteer missions for our church. He was in Australia for two years and I was on the other side of the world in Finland for a year and a half. We both arrived home early in 1993. Dal's family had just been transplanted here from northern Virginia. His mother worked for Mobile Oil and had a job transfer here to Dallas, Texas. Dallas and I met in a singles congregation-both very new back to life after a mission. I was preparing to go to Utah and live with my sister and attend the University of Utah. So much for that idea. I met Dallas and knew that I wouldn't be leaving after all.
We dated for a year and got married in the Dallas Temple. A few days after returning from our honeymoon, we packed up his dad's truck and moved to Austin so Dallas could finish up his bachelor's degree at the University of Texas (hook 'em horns!). We lived there for a year and a half. I worked for NationsBank and Dallas went to school full time. We were the typical young married couple: complete with cheap furniture, trips home to mooch off our parents, and scraping change together to go to Taco Bell for cheap food. We made great friends down in Austin and fell in love with the city and the university.
In December of 1995, Dallas graduated with his degree in Political Science. A couple of weeks before that, my father died of a heart attack at the age of 73-the day after Thanksgiving. My parents are truly amazing people and I plan to write a book about them soon. My mother and father raised 6 children on their own--not so amazing you say, but when you find out that they were both blind, it does become quite amazing. I was the youngest of the 6. My father was a great man. I only wish Dallas could have known him better. My mother still lives with one of my brothers and his family here in the Dallas/Fort Worth area and we visit her weekly. She is about to be 80 next week.
After graduation, Dallas and I moved back to DFW and lived with his parents for a year. Dallas got a job at an investment company here locally thanks to the contacts of some friends. We decided to begin trying to have a child. In August of 1996 I found out that I was pregnant. We were so excited and began telling everyone our great news. At my 12 week appt., I was having a sonogram when the doctor began to look worried. He could not find a heartbeat. Apparently at about 101/2 weeks the fetus had stopped growing and the heart had stopped. We had the fetus tested for genetic abnormalities, but there were none. She was a normal little girl. We do not know why the pregnancy terminated, but miscarriage is fairly common. This was a difficult time. I had to be scheduled for a D&C. I felt so devastated. We had to un-tell all of the people we had told- not a fun task. After that, we vowed never to break the news until I was safely into my second trimester.
I was still working for NationsBank, but the miscarriage prompted me to want to go part time. I took a position closer to home and with less hours. Within the first couple of months of 1997 I was pregnant again. McKay was born in the fall of 1997. She was a fun, roly poly little girl, with lots of energy. She was a fairly easy baby with only a brief brush with jaundice and mild colic.
We decided to move out of the apartment we had moved into in the fall of 96 and build a home. We moved into a little 3 bedroom house that we rented from Dal's parents when McKay was almost 1 year old. I began getting baby hungry again, and we found out we were pregnant again in the spring of 1999. Alexa was born the day before Thanksgiving that same year. She was what we called "our little peanut" weighing in at 6lbs 8 oz. A little ball of fire with endless energy. Both of our girls were right on time with their milestones, and even a little early with the talking and cognitive ones. I was just like any other mom, comparing my girls to other peoples' kids and patting myself on the back for all of their great accomplishments. Life was carefree and simple. I had no idea what our third child would bring.
When Alexa was almost 2 and McKay was almost 4, we moved into a new four bedroom home that we built a little closer to Dal's work. We qualified for a relocation package and shortened Dal's commute from almost an hour to about 10 minutes. Again, I began getting that baby itch.....
Dallas and I were married in 1994. We met at church shortly after we both returned from serving volunteer missions for our church. He was in Australia for two years and I was on the other side of the world in Finland for a year and a half. We both arrived home early in 1993. Dal's family had just been transplanted here from northern Virginia. His mother worked for Mobile Oil and had a job transfer here to Dallas, Texas. Dallas and I met in a singles congregation-both very new back to life after a mission. I was preparing to go to Utah and live with my sister and attend the University of Utah. So much for that idea. I met Dallas and knew that I wouldn't be leaving after all.
We dated for a year and got married in the Dallas Temple. A few days after returning from our honeymoon, we packed up his dad's truck and moved to Austin so Dallas could finish up his bachelor's degree at the University of Texas (hook 'em horns!). We lived there for a year and a half. I worked for NationsBank and Dallas went to school full time. We were the typical young married couple: complete with cheap furniture, trips home to mooch off our parents, and scraping change together to go to Taco Bell for cheap food. We made great friends down in Austin and fell in love with the city and the university.
In December of 1995, Dallas graduated with his degree in Political Science. A couple of weeks before that, my father died of a heart attack at the age of 73-the day after Thanksgiving. My parents are truly amazing people and I plan to write a book about them soon. My mother and father raised 6 children on their own--not so amazing you say, but when you find out that they were both blind, it does become quite amazing. I was the youngest of the 6. My father was a great man. I only wish Dallas could have known him better. My mother still lives with one of my brothers and his family here in the Dallas/Fort Worth area and we visit her weekly. She is about to be 80 next week.
After graduation, Dallas and I moved back to DFW and lived with his parents for a year. Dallas got a job at an investment company here locally thanks to the contacts of some friends. We decided to begin trying to have a child. In August of 1996 I found out that I was pregnant. We were so excited and began telling everyone our great news. At my 12 week appt., I was having a sonogram when the doctor began to look worried. He could not find a heartbeat. Apparently at about 101/2 weeks the fetus had stopped growing and the heart had stopped. We had the fetus tested for genetic abnormalities, but there were none. She was a normal little girl. We do not know why the pregnancy terminated, but miscarriage is fairly common. This was a difficult time. I had to be scheduled for a D&C. I felt so devastated. We had to un-tell all of the people we had told- not a fun task. After that, we vowed never to break the news until I was safely into my second trimester.
I was still working for NationsBank, but the miscarriage prompted me to want to go part time. I took a position closer to home and with less hours. Within the first couple of months of 1997 I was pregnant again. McKay was born in the fall of 1997. She was a fun, roly poly little girl, with lots of energy. She was a fairly easy baby with only a brief brush with jaundice and mild colic.
We decided to move out of the apartment we had moved into in the fall of 96 and build a home. We moved into a little 3 bedroom house that we rented from Dal's parents when McKay was almost 1 year old. I began getting baby hungry again, and we found out we were pregnant again in the spring of 1999. Alexa was born the day before Thanksgiving that same year. She was what we called "our little peanut" weighing in at 6lbs 8 oz. A little ball of fire with endless energy. Both of our girls were right on time with their milestones, and even a little early with the talking and cognitive ones. I was just like any other mom, comparing my girls to other peoples' kids and patting myself on the back for all of their great accomplishments. Life was carefree and simple. I had no idea what our third child would bring.
When Alexa was almost 2 and McKay was almost 4, we moved into a new four bedroom home that we built a little closer to Dal's work. We qualified for a relocation package and shortened Dal's commute from almost an hour to about 10 minutes. Again, I began getting that baby itch.....
Saturday, October 6, 2007
Subscribe to:
Posts (Atom)
