We rented a van for our CA trip. Thank goodness we did since our van blew up a week ago here at home on Paul a week after we left. We would of been broken down on the road. I was against renting a van but I am glad that is the route we took. Somebody up there watches over us.
The long drive to CA and home was not as treacherous as last year. Is was not too bad.
Thank you for the two organizations that helped us get there!!! We could of not gotten there with out your help!!
Windy in Nevada and Nebraska but Christen did great driving that huge van.
Lizzy had no issues what so ever on the road. Rachael did pretty good until about 8pm every night. Then, she would get cranky. Lizzy did really well on the road and the whole trip. it was a fun trip for all of us and a much needed get away.
DR.Wang's visit was great. He is always so impressed with Lizzy.
We got Lizzy a rolling book bag at the gift shop because of she bad time with the blood draw. Big Ol purple bruise she got during the blood draw.Where is our Noni when we need her? The (Neonatal Nurse from UW that gets aperfect stick every time)
We spent time with Andy and Molly and it was was great time just chatting to them and being around them. Excellent time. They treat us like family.
The FSMA conference was amazing. Thank you FSMA for allowing us to attend. We had rooms on the first floor. Right around the corner from the front desk. It was great.
So, many people were so excited to meet Lizzy. We met families we have all met online and many new ones. Elizabeth felt like a celebrity Many people stopped her and was talked to her. Even researchers from out of the country talked to Christen about Elizabeth. They were shocked on how well she manages her power chair.
Its is shocking the care of SMA Type 1s is so different.
DR. Wang's luncheon was great. I was VERY nervous because of an incident that happened with in seconds of the luncheon and my focus was not there. It was so hard to speak with shaking the way I was. I wanted to say what "HEROs "these kids are for going through the studies and staying in the studies among other things. SMA has come a long way since 2004 when Elizabeth was diagnosed in the Midwest. DR.Wang is very proud of Elizabeth and told everyone there at the luncheon how much he is. He mentioned how we always made it to see him some how even if we have to drive. Thank you Hope and Light Foundation for the luncheon. It was very good. Thank you for helping fund his study also.
I am excited the UW dietitians Mary and Erin were at the conference!! It was great talking to them and seeing them.
It was great seeing Colleen , Mary B( Jenna's Mom) and many others.
Its was great to see Hayden, Veronica, Jacob,Roman and their families. All the kids it was great to see
It was great to talk to others from other countries and share what we do for Lizzy.
Elizabeth did not want to leave!!! She wants to move there. She says it every time there is a conference.
The weather was Perfect.
We got home last Thursday about 9pm. The reality about our van has set in. Its just so upsetting. We thought the warranty was going to work by because we can not find all the receipts for the oil changes it sounds like we will have to pay for a new one out of pocket. We were trying to get a new( used van ) and that fell through right before we left and have not heard a thing since. Mine and Paul's income will not allow a loan at this time. So, I guess we are GROUNDED. Elizabeth is so upset!! No van ....we can not go any where . I am afraid we will be kicked out of swim therapy and speech if we miss anymore sessions. I understand why Lizzy is so upset.
Now we get the figure out how to get a van. I don't think we need a handicapped one. A Ford E150 worked well on our trip to CA. We have a manual ramp that will not work in the Dodge Caravan. Maybe we might win the lotto? I have no clue what we are going to do. Pray for us to find a way. We travel so much for Lizzy's medical needs.
On a good note it sounds like the Gene therapy is going to help these kids( OSU). Then, the kids on the Hydroxeurya have a 250% more chance of survival then kids that are not( From DR. Wang Study). Its seems to help Type 1s so much.
VPA and PBA were unfounded.
Many more pics I will put on my face book!!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
Lizzy had no issues what so ever on the road. Rachael did pretty good until about 8pm every night. Then, she would get cranky. Lizzy did really well on the road and the whole trip. it was a fun trip for all of us and a much needed get away.
DR.Wang's visit was great. He is always so impressed with Lizzy.
We got Lizzy a rolling book bag at the gift shop because of she bad time with the blood draw. Big Ol purple bruise she got during the blood draw.Where is our Noni when we need her? The (Neonatal Nurse from UW that gets aperfect stick every time)
We spent time with Andy and Molly and it was was great time just chatting to them and being around them. Excellent time. They treat us like family.
The FSMA conference was amazing. Thank you FSMA for allowing us to attend. We had rooms on the first floor. Right around the corner from the front desk. It was great.
So, many people were so excited to meet Lizzy. We met families we have all met online and many new ones. Elizabeth felt like a celebrity Many people stopped her and was talked to her. Even researchers from out of the country talked to Christen about Elizabeth. They were shocked on how well she manages her power chair.
Its is shocking the care of SMA Type 1s is so different.
DR. Wang's luncheon was great. I was VERY nervous because of an incident that happened with in seconds of the luncheon and my focus was not there. It was so hard to speak with shaking the way I was. I wanted to say what "HEROs "these kids are for going through the studies and staying in the studies among other things. SMA has come a long way since 2004 when Elizabeth was diagnosed in the Midwest. DR.Wang is very proud of Elizabeth and told everyone there at the luncheon how much he is. He mentioned how we always made it to see him some how even if we have to drive. Thank you Hope and Light Foundation for the luncheon. It was very good. Thank you for helping fund his study also.
I am excited the UW dietitians Mary and Erin were at the conference!! It was great talking to them and seeing them.
It was great seeing Colleen , Mary B( Jenna's Mom) and many others.
Its was great to see Hayden, Veronica, Jacob,Roman and their families. All the kids it was great to see
It was great to talk to others from other countries and share what we do for Lizzy.
Elizabeth did not want to leave!!! She wants to move there. She says it every time there is a conference.
The weather was Perfect.
We got home last Thursday about 9pm. The reality about our van has set in. Its just so upsetting. We thought the warranty was going to work by because we can not find all the receipts for the oil changes it sounds like we will have to pay for a new one out of pocket. We were trying to get a new( used van ) and that fell through right before we left and have not heard a thing since. Mine and Paul's income will not allow a loan at this time. So, I guess we are GROUNDED. Elizabeth is so upset!! No van ....we can not go any where . I am afraid we will be kicked out of swim therapy and speech if we miss anymore sessions. I understand why Lizzy is so upset.
Now we get the figure out how to get a van. I don't think we need a handicapped one. A Ford E150 worked well on our trip to CA. We have a manual ramp that will not work in the Dodge Caravan. Maybe we might win the lotto? I have no clue what we are going to do. Pray for us to find a way. We travel so much for Lizzy's medical needs.
On a good note it sounds like the Gene therapy is going to help these kids( OSU). Then, the kids on the Hydroxeurya have a 250% more chance of survival then kids that are not( From DR. Wang Study). Its seems to help Type 1s so much.
VPA and PBA were unfounded.
Many more pics I will put on my face book!!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
3 comments:
It was great seeing you guys at the conference and I can't believe how big Lizzy is getting! Glad you had a great trip.
great seeing you too Mary!!!
Loved, loved seeing you guys. How is our super star? Miss you!!
Post a Comment