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November 2009
Grant had a lot of wheelchair problems this month. Due to several items breaking or needing repair on his wheelchair, Grant was unable to take the bus to school. The process of getting a wheelchair repaired by the state funded insurance is long and cumbersome. Once Grant's wheelchair needed repair we had to get permission to have the wheelchair looked at by the medical equipment company. Once we received permission to move forward we had to make an appointment with the wheelchair repair company to bring Grant's wheelchair in for an estimate. Once the estimate is received we have to take the estimate back to the insurance company for approval. In the meantime Grant needs to get a prescription from his doctor indicating a medical necessity for the wheelchair to be repaired. So, once we have the doctor on board, and the insurance on board, and the estimate for the repair approved then we have to wait for the parts to be ordered. In Grant's case the parts could take several weeks to a month to be received! Then the repair shop calls us to make another appointment to get the wheelchair repaired. If the repair is complicated or requires more than one day the wheelchair needs to be left at the shop (God forbid that it is a holiday weekend or something). Once the wheelchair is repaired then we are called for pick-up. In this case Grant's brake cable was shredded from constant use. We started the process in October and the parts have yet to arrive at the repair shop! Since Grant has no other piece of equipment in which he can sit safely, while his wheelchair is not functional he must lay in bed or on mats in our living room. He is unable to go out in the community or even to school. The process is so ridiculously long and funds are so tight that children like Grant really suffer in situations like ours. I sure wish I had enough discretionary funds to buy all of my boys' back-up wheelchairs.
April 2009
Grant enjoyed celebrating his 14th birthday twice once with his birth family and once with us. He spent the day at Wild Animal Park with his birth parents and some of his brothers and his nurse, Chris. Grant loved all of the special attention and had a great day. At home we had the family sing two rounds of "Happy Birthday!" as is the tradition, had a big ice cream cake and opened presents. If there is one thing that makes Grant smile is a birthday party, especially if the party is his own.
November 2009
Grant has been going to Saddleback Church lately. He used really get upset when he went to church. We never quite knew why he disliked church so much. We took a couple of years break from attending but have recently started up again. Now that Grant is older he can attend with the high school kids. The high school ministry is very exciting with live music and lots of action to teach the weekly message. Grant seems to enjoy the music and the other high school students are very friendly with Grant as well. I am excited that Grant is expanding his horizons and enjoying a more varied activity schedule. i am also looking forward to seeing Grant's great smile as the holiday activities begin in the next weeks or two! Looking at Christmas lights and sailing on the Holiday Harbor Cruise are some of Grant's favorite winter activities.
September 2008
Grant spent his summer days mostly in the water at Wild Rivers. Grant has always loved hanging out in the water even as a much younger child he would get so excited if we even drove in the direction of Wild Rivers or the Huntington Beach City Pool. We were saddened to think this was the last year for Wild Rivers as the property was bought and will be converted to housing and retail shops. Luckily for Grant we recently heard that Wild Rivers will at least be around for the summer of 2009. Additionally we hope to FINALLY get our pool and spa up and running very soon. We are sure Grant will love the opportunity to swim every day if he feels up to it!
Grant returned to Edison High School last month. He is well into the routine at school and seems happy to attend every day. In fact recently Grant had to stay home while his wheelchair was being repaired and he let us know very clearly he was upset about missing the school bus!
May 2008
Grant is so excited that Wild Rivers is open again
for the summer season! Grant never tires of the water
park. We have already purchased season passes for the
whole family thanks to several generous donations from
David Schaffer. Grant went to Wild Rivers on
opening day and will probably be there every weekend
from now through September! Just wait to see Grant's
summer pictures and his beautiful tan!! Besides swimming
at Wild Rivers Grant has enjoyed our season tickets to
the local children's theater. Grant has started to
really like seeing live performances. We are looking
forward to watching Grant's reaction to the Orange
County Performing Arts Center's performance of "High
School Musical." Grant loves the movie so we think he
will really love the play! The singing and dancing makes
him smile and laugh.
February 2008
Poor Grant had a terrible cold last month. He had to stay home from school and other activities for two weeks! This is probably the worst Grant has felt in a long time which is incredible considering how medically fragile Grant was once considered. Happily Grant is feeling better now and back to his regular routine.
Grant enjoyed all of the holiday festivities of the past few months. He went on the harbor cruise to look at Christmas lights, he enjoyed several holiday parties and multiple visits with Santa Claus. Grant loves the excitement of the holidays. His face really brightens up when he starts seeing all of the holiday decorations. Grant received many gifts but his favorite was a remote control dinosaur which his biological family sent. He gets the biggest kick out of watching this large dinosaur move slowly across the floor. Its great to see Grant giggle and laugh!
November 2007
Grant is loving Edison High School. Every day the school bus arrives to pick-up Grant he gives us a big smile Even though Grant is a bit young for high school, this school placement seems the best able to serve his educational needs. We are happy that Grant enjoys going to school and that he continues to be physically healthy. Grant will certainly enjoy the upcoming Christmas parties and activities. Besides summer swimming, Christmas seems to be a favorite time of year for Grant.
September 2007
Grant is back in school after an action-packed summer. Grant spent most of his summer around the water. Of course his favorite place of all was Wild Rivers, but he did also get a chance to go to the beach, local pools and other water parks. besides swimming and working on his tan, Grant saw many new release movies and went to a fair amount of amusement parks and museums. Grant continues to amaze us with his stable health, alertness and loving personality. We are looking forward to Grant having a great year as a freshman in high school!
June 2007
Grant recently started high school! Its hard to believe that he is a student at Edison High School. Grant joined our family at the age of two. When he was a baby the prognosis for living past the age of five was very poor. We struggled to keep Grant healthy and to control his seizures. During his early elementary school years Grant has frequent hospitalizations due to his unstable medical conditions. There were times that we really didn't think he would make it another day. That's why seeing Grant get on the high school bus this summer is so amazing! We are thrilled with the program that Edison High School can provide Grant. With Mitch Tandler as Grant's case carrier we know that he will be well-cared for at school. We also believe that Grant will be stimulated with a variety of classes and students and staff interacting with him. Grant's happiest moments are when he is in the middle of all of the action. We know that Edison High School will be able to provide Grant with an ideal stimulating and interesting educational program.
March 2007
The weather has started to warm up and Grant is very happy. We think that Grant knows that summer is around the corner. Grant loves summer, especially going to his favorite water park, Wild Rivers! Grant could spend every day of summer hanging out at Wild Rivers.
Thanks to the generosity of The Moise and Carol Ann Emquies Trust we have been able to prepay for a 2007 Season Pass to Wild Rivers for Grant and an attendant.
We are sure Grant can't wait to get in the water and to start working on his tan!
February 2007
We have had a flurry of birthdays over the past couple of months. Grant loves a good birthday party, it doesn't even have to be his own! We have a tradition with all of our birthday parties, that is first we sing "Happy Birthday" to the person celebrating his/her birthday then we sing a special round of "Happy Birthday" for Grant. He absolutely loves that! Grant squeals and smiles with delight. All of the brothers enjoy it when Grant gets so happy that they often lead the "Happy Birthday to Grant" song. Grant also loves watching his brothers blow-out the birthday candles. Sometimes it is difficult to figure out what will Grant happy but we can always guarantee that birthday party is at the top of Grant's list.
December 2006
Grant received his new wheelchair last month. He had finally outgrown the old chair. Grant has lots of special supports to keep him positioned appropriately. Although the new chair is very sturdy, Grant has already broken the abductor. Grant has extremely strong spasms and after a particularly strong one the abductor just popped off. We have requested that everything on the wheelchair be reinforced so we don't have to hire a wheelchair repair person on retainer!
October 2006
Grant is happy to be back in school but not too happy that Wild Rivers is closed for the season. We will start back at the community pool later in the month. Grant enjoys getting in the warm pool at the Huntington Beach City Gym during the free swim times. Generally the pool is pretty quiet during the week nights and we get over there about twice a week. Besides swimming Grant is starting to enjoy going to the library. On the weekend he is exploring a different Orange County Library each Sunday afternoon. Grant is starting to enjoy having books read to him. Grant is also very interested to look at the holiday decorations around town. He loves to see all of the kids in costume and dress-up himself on Halloween. He will definitely enjoy walking around Knott's Berry Farm and Disneyland during the holidays.
July 2006
Summer is Grant's favorite season. He loves the
water and anywhere he can swim is his favorite place.
This summer, as usual, Grant is spending many of his
days at our local water parks. Grant loves hanging out
with his older brothers who slash around and play with
him in the water. Grant has also had several
opportunities to hang out with his biological mom, dad,
and older brother at Wild Rivers as well.
Besides
swimming and working on his tan, Grant has seen several
of the new movies. We are so excited to be able to take
Grant to a movie and for him to enjoy it so much that he
can sit in the movie theater for over two hours with
barely a peep. Sometimes Grant will even laugh at parts
of a movie that he finds humorous. We had always hoped
that there would be time that Grant could attend a movie
happily enough that he wouldn't need to leave the
theater early. We are always so delighted to see the
growth that Grant has made over the years!
March 2006
Grant (10) still loves a good birthday party. We have had so many birthday parties lately that Grant must feel as if he were in heaven. We have a tradition in our family with regard to birthday parties. When it is time to sing "Happy Birthday" we always sing the song twice. The first round is for the person celebrating his birthday and the second round is for Grant. We are always guaranteed a big smile from Grant when he gets his turn to be the recipient of the "Happy Birthday" song. All of the kids in the family know this tradition and often jump-in to lead the song on Grant's behalf!
Grant continues to enjoy visiting with his biological family members. This month he had a nice visit at their home and we are sure to schedule something for Grant's birthday next month. Its great for Grant to have such a wonderful circle of support. Grant really enjoys himself when he is the center of attention.
Check out his web site:
Special Education Software, Hardware and Assistive Technology Products - Special Needs Children and Special Ed Learning Resou.. RJ
January 2006
Grant had a great year. Although Grant continues to have a diagnosis of Leigh's Disease Leigh's Disease Information Page: National Institute of Neurological Disorders and Stroke (NINDS) , he was hardly sick at all during 2005. We have noticed that as Grant gets older his health has really stabilized. We are so happy that Grant has out-lived and out-performed the early medical predictions about his condition. We are hopeful that Grant will continue to remain healthy and defy the general progression of a person living with a mitochondrial disorder.
This year Grant is a fourth grade student at Perry Elementary School. This semester Grant has started working with RJ Cooper, a specialist in technology for persons with severe disabilities. Check out his web site:
Special Education Software, Hardware and Assistive Technology Products - Special Needs Children and Special Ed Learning Resou..
RJ has come up with some new ideas to help Grant learn how to communicate more efficiently with those around him. Although Grant can be a little resistive about using the computer, with RJ's energy and enthusiasm Grant seems more willing to try. We hope that the Perry School staff will learn how to implement this technology and RJ's strategies to work with Grant in the classroom. We are enthused about the available technology and software options available for Grant and students like him.
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