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.
Sunday, November 18, 2007
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.
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