It is finally done!

Well there it is! We close on our house on Monday. I apologize for not posting for a few months. I was just like this when I kept a written journal. I get busy and I forget and then by the time I write again, about a thousand things have happened.

Sorry for the van in front- I will take a pic without it later and post it. Man, this house is so cool. I can't believe it is ours. Richard built us the most amazing place to call home. It turned out far better than we could have imagined.

This next few weeks will be crazy with moving and everything going on with the last six weeks of school. We close Monday, but we are not moving ourselves in until May 24 because of schedule conflicts with work and other things. This will give us a few weeks to move in a little at a time and to clean and get organized. The economy in this country is in the trough of a downturn, and we are hunkering down to ride this thing out. Gas is sky high at about 3.50 a gallon, food prices have risen, and everyone is just sick and tired of this war with Iraq. I just want to hole up in our new home and stay there until this whole thing passes. We are not taking a vacation this summer, so I will have to be creative keeping the girls busy. They will have their own rooms to enjoy though. We will spend a lot of time at the many pools we frequent I am sure. Grace will be in summer school for about 6 weeks as well. Our contract with MDCP was just renewed at a higher rate of hours for Jenny to work. They upped our hours of respite care from 1560 for last year to 1993 this year. Jenny will be able to spend lots of time with us this summer trying to get as many hours as she can so we don't lose any. She and Forest just bought a new home and they will be moving in close to the time we do. It will be great for them to get out of that apartment and into something they can call their own.



I was brave and volunteered for a bigger position on the PTA board next year, I am going to be the volunteer coordinator. My job will be to drum up volunteers to come help with the various activities we have going on. I think it will be good for me and I will have more time for it now that Grace is going to be in school all day in the fall.

I am excited to get out of the apartment-- our upstairs neighbors like to stomp around alot and we are right next to the train tracks. Not to mention the ants. This has been a bad year for ants everywhere. I bait one colony and they die and then within a few days it seems another one pops up somewhere else and I just have to chase them around with the baits.

We had a family home evening this week about wastefulness in honor of earth day. We made goals as a family to watch our consumption and to do more to be kind to the environment. I am going to go completely chemical free inside the house. I am buying "green" cleaners so that the chemicals won't be on the things we use. We are going to work on the three r's reduce, reuse, recycle. Even a few changes will make a difference.

It will be so nice to be able to set down roots again and to have lots of room for all of our stuff. My sister LouAnn is coming to visit after we move in so she can break in the guest room and help with the unpacking. We love it when Aunt LouAnn comes. She and I are really close and sit and talk non stop when we are together. One time I will post about all of our fun that we have had dealing with my mother. She is a card that lady. (My mother that is)

I need to go to bed- it is a stormy spring night here in Texas and the thunder and lightning are going to town. I love spring in Texas with the bluebonnets and tornadoes. I really don't mind the storms as long as the scary stuff stays away from my house. A good thunderstorm is quite relaxing to me if there are no tornado sirens!

I promise I won't wait so long to post again this time.

The story of our new home

This is a picture of our new house in progress....it is only framed so far, but it is about two years in the making and its story is an interesting one...

About two years ago we began discussing when we wanted to move, where we wanted to move, and what kind of a house we wanted to buy. Dallas found out that he was getting a raise and we decided to start saving our money and looking for ideas. We knew that the house we would be moving into would need to be accessible to Grace as well as safe for her. This really whittled down our choices as far as existing homes were concerned. There was a lot in a neighboring town that we really liked, and we lost it by a week. Now that we can look back, we are glad we didn't get that lot. We knew we wanted to build by this point and so I emailed my brother David who has his degree in architecture to ask for advice. He proceeded to offer to design us a house and make the plans for us all free of charge. This was very kind of him as well as a great savings to us. The plans can cost in the thousands of dollars.

We began to throw around ideas via email and we came up with some interesting ideas for homes that are Gracie friendly and good for our whole family. We had our hearts set on a subdivision in the same town we had lost the first lot in. After working on a floorplan for a month or two with David, we found out by calling the developer that no outside builders would be allowed in to the neighborhood. This really threw a wrench into the works and we were back at square one.

On the builder side, we decided to network and find a builder who would build us a house on a cost plus basis. My good friend Erin and her husband had built two homes that way and it seemed like a good way to do it. We would have a lot of input and say in a process like that. We knew of two builders in the area, one of them being the one who built for Erin, and decided to meet with them and discuss our options. The other builder was a member of our church who we had been acquainted with for years. He was at the time employed by a large tract home builder, and was overseeing the construction of several homes. We had dinner with him and told him of our plans. He agreed to do the job for us, and we thought that he seemed like our best choice. The other builder lived farther away and we had never met him, so we decided to go with this guy instead....( I will call him "Fred"). So we began looking for lots. We had our builder and our architect and now all we needed was a lot.

Someone we attend church with was telling Dallas about how he was pursuing a set of lots in an upscale gated community in the same town we had lost the other lots in. He mentioned that they would be at a reasonable price and so we contemplated waiting for him to sell us one. Over the course of several months, we realized that it would be quite a while until these would be available since they weren't having much luck negotiating with the land owner and they hadn't even been developed yet. I couldn't get this neighborhood out of my mind though. One time a few years earlier, we had been playing a little game at Dal's family's house. We said if money were no object, where in the Dallas Fort Worth area would you live? Dallas' answer was the upscale gated community where our friend was developing homes- but at the time it was just a seemingly unattainable goal. We figured everything in there was over million and we would never get a chance to live there, but we sure loved the feel of the neighborhood. It is a golf course community with lots of trees and ponds and is very quaint.

As I was out driving around one day looking at lots that were for sale, I decided to drive into this neighborhood and see what was available and what the prices were. I drove in and in one corner of the community is a little circle of villa homes- meaning zero lot line homes with tiny lots. Some of the people in the circle had bought two lots and built on both, but most were only on one lot. On one end were three lots in a row backing up to a pond with a waterfall. They all had signs from the property company on them and no builder signs in sight. I decided to ask about them at the property company's office across the street. I found out that they were all for sale and within our budget! Two were cheaper than the third, and we found out that that was due to a utility easement that ran right through the back of two of them. One of them had the easement so deep that we realized that you could never build a house of a decent size on it. The one in the middle however, had trees and really struck me. We went over and looked at the lots and decided to put and hold on the middle one.

We told Fred about the lot and he went over to look at it. He was excited, because it was a great neighborhood and the homes were going for great prices. He decided he wanted to buy the corner one and build a spec home in it as well. He put in an offer on both lots because they said that they would give a discount for a multiple lot purchase. They accepted his offer and we were excited because we were getting our lot for 6 grand less than the asking price. He signed the contract on them and we were off and running.

David and his wife came for Thanksgiving that year and stayed with us. We took them over to see the lot and tossed around ideas for the house. He designed us a great home with lots of great features. Suddenly one day I get a call from the property company informing me that Fred had let the deadline to close on the lots expire almost a month prior and they had someone interested in our lot. Legally, they could sell it to them because the time limit to close had expired. I had no idea there was a deadline to close, so this was news to me. I called Dallas crying. I told him that we probably lost our lot due to Fred's negligence. I went over to the property company and asked what we could do to keep the lot. They told us that they could sell it to us, but only for full price since it would not be with the other lot. I signed the contract as soon as possible and even though I was just glad we didn't lose it, I was a little upset that Fred's mistake has cost us six thousand dollars.

We stuck with Fred however, and we sat down with him to talk numbers. He pulled out a budget that was much higher than we had expected. He wanted 15% as his commission as well. We told him that we wanted some time to think about it. As we took the time to do so, we just didn't feel right about using Fred. We decided to meet with some other builders and get their opinions and offers. Dallas' brother and his wife had recently built a home and were friends with the builder and one of his contractors. Well the contractor was named Richard and he had recently gone out on his own to be a custom builder. Dallas decided to meet with him. Richard gave us some great ideas on our plans and said that he would build for us. He normally didn't do cost plus jobs, but because we were related to Dal's brother (who Richard is friends with) he agreed to do this for us. When he saw our desired budget, he said that the only way he could get even close to that is to cut his commission to 10% from 15%. Right then I knew we had someone special. He was willing to take a cut in pay to help us- that said alot about his character.

At first, Richard was a little bit perturbed I think with the lack of detail on the plans and expressed a desire for David to make a set of plans more like the ones he uses on a regular basis. We took and old set and sent them to David to use as a reference. This began the most frustrating and harrowing part of this whole process. I am so glad it is over. First it was trying to get the plans to look the way Richard wanted them, then it was fitting the house on the lot without crossing the easement. After that, we had to get the plans out to subs to make a budget. We spent a couple of weeks picking flooring, lighting, cabinets, etc... and then Richard sat us down and gave us a proposed budget. It was definitely more than we had hoped, but still far less than Freds and at least within reach for us financially.

We took time to think about it and run the numbers. We kind of laughed about this later that in states like California, Massachusetts, or any of those other high priced real estate areas, that we would have to spend this amt just to get something livable! We told Richard that it was a go. We had paid him some earnest money and since then he had been far more eager to help with the start up process- probably since his mind had been eased that we wouldn't bail on him.

Then even more headaches....the city had no elevations or surveys on the lot! That was a major headache. Then we had to find a construction loan. Finally on the fourth bank (the first three did not have the terms we wanted) we closed on the loan. The very next day Richard had his guys out there clearing trees. Earlier in the process I sent Richard a very heartfelt email thanking him for doing this for us. He really went above and beyond for us. I teared up thinking about it.

When we got the loan, we had to get an appraisal on the future home. The appraisal came in almost WAYYYY over what we were paying for it. We were all collectively floored! We would have so much equity in the home- it was amazing. What a blessing. More headaches came, the plans were too big and the house was 6 inches into the setbacks requiring approval from the property company. We got that way before we thought we would and we didn't even know if we would! The garage was too small for code in the town, which was ridiculous because it was still a standard size. When Richard went to the town to argue it, the man in charge was someone he went to high school with! He approved it after Richard pled our case regarding the easement. The electric pole which was to provide electricity to the plumbers had tipped over and fallen down a hill after weeks of rain in the summer and after many dead ends and hours of phone calls, Richard got the city to agree to fix it, but it would take several weeks. In the meantime, we were faced with paying extra for a generator. Richard then thought to call the builder across the street to ask if we could use their t-pole until ours was fixed. He agreed and even said he didn't care if we didn't reimburse him for the overage in cost!

Soo many "coincidences" that saved us from untold headaches and expense...Richard even agreed with us that it seemed that a higher power had to be involved in some way. David's plans had a flaw with the roof line and it hit lower than in the plans in one place requiring a change. That is the latest issue, but Richard thinks we can change it with only minor cost difference.

We stood in the rooms for the first time this week, and after almost two years of heading for this and one year of designing this floor plan, it is finally coming together! It is so surreal. I forgot the part of the story when we sold our house. That is a different entry all together. It was also an amazing process.

We are so blessed to have this opportunity to build a house that is safe for Grace and a nice place for us to settle for the next 20 to 30 years. I am so excited to see how it looks when it begins to come along in its progress!

Life in the present

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.

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.

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 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.

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.