Building of Medieval Cathedrals Built
6 years ago
Tuesday, April 14, 2009
Child Saftey Locks-Public Service Announcement
So after charging the car battery all night last night I was looking forward to our trip to stock up on all the sale-priced Easter goodies this morning. The car started just fine but I wanted to make sure and drive for a good 20 or 30 minutes so that the battery could continue to charge. So there we were in the car driving down the interstate to charge the battery. Olivia is a little fussy because she generally likes to listen to the radio when we are in the car so to keep her happy we were singing "Old MacDonald" at the top of our lungs. Then I hear Olivia say "open please" and before I can even ask what it is that she wants opened I hear her open the car door. She's buckled into her car seat so I'm not worried that she will actually fall out but then again we are going down the road at 60 mph. I didn't even know she could reach the door handle, let alone open it. Remember we are driving the Audi because the Durango was having tire issues last week. I know that she can't reach the door handle in the Durango but obviously she can in the Audi. I know it's completely irrational but I had always been a little afraid that I would somehow get locked inside the car if I turned the child safety locks on. Obviously I have gotten over this irrational fear and the child safety locks are fully engaged.
Sunday, April 12, 2009
Looking forward to Easter
No, you didn't read the title wrong. We are still looking forward to Easter at the Leiva house. Since Mike is out of town we are celebrating Easter next weekend after he gets home. This has been a really trying week with a lot of ups and downs. We started off the week by getting a flat tire just hours after Mike left. The weather during the first part of the week was absolutely beautiful so we were spending lots of time outside. Olivia was argumentative and temperamental exhibiting all the signs of the "terrible twos". We worked a lot on discipline this week and listening to each other. Olivia has added a lot of words to her vocabulary this past week and she has started to sing some of her favorite songs. She spent a lot of time in "time out" this week but she has learned to sort and pick up all of her toys when I start singing the clean-up time song. We added a new member to our family, a little beta fish, Olivia named him Jack. The lights were left on in the car all night yesterday so I woke up to find the car battery completely dead. No church for us. After spending a couple of hours cleaning out the garage I found the electric battery charger but at least the garage is clean.
I am really looking forward to hitting the after-Easter sales tomorrow so that I can load up on goodies for Olivia and Peter's Easter baskets. I hope that everyone else had a good Easter!
I am really looking forward to hitting the after-Easter sales tomorrow so that I can load up on goodies for Olivia and Peter's Easter baskets. I hope that everyone else had a good Easter!
Thursday, April 9, 2009
Tuesday, April 7, 2009
North Carolina-the Medical stuff
So I posted last week about the fun parts of our trip to North Carolina, today's post is about all the medical stuff.
We spent 3 very full days in North Carolina. On Monday we spent all day at the Center for Development and Learning at UNC-Chapel Hill. It was a long day but it was a great experience for us. The specialists we've seen at Seattle Children's Hospital had seen other children with MPS disorders but never any with MPS III so it was really rewarding for Mike and I to discuss Olivia with doctors who had seen so many other kids with MPS III type B. This was the very first time that we were able to get a sense for how Olivia is progressing compared with other kids who have Sanfilippo Syndrome. Olivia met with speech therapists, audiologists, a physical therapist, an occupational therapist, and a pediatrician. The team that evaluated her met together to share their findings while we got a quick lunch break and then we all meet together again for them to go over their findings. It was a really long day, we started at 8am and didn't leave until after 5pm! We took a lot of "tips" away from that meeting, things that we can start working on right now, reguardless if we are able to move forward with the clinical trial. We learned that Olivia needs hearing aids, we learned some stretches that we can do with her to help Olivia retain her mobility, we learned that developmentally Olivia is just a few months behind other kids her age but she still falls within the range of normal for her age group.
The second and third days we went to the Children's Health Center at Duke University Medical Center. We met with the doctors that are running the clinical trial. We spent a long time discussing the treatment and what it entails. We toured the Pediatric Bone Marrow Transplant Unit at Duke. We met with a social worker and Olivia had some blood work done. We spent a lot of time talking with various doctors about what we could expect for Olivia if we do go through with the treatment and what to expect if we do not go through with the treatment.
So where are we now.......right now Olivia does qualify for the treatment but we would need to get moving, we only have till August! Kids start to display more serious physical symptoms after they turn 3 and Olivia will be 3 this July so if we haven't started by August then the doctors would not recommend allowing her to go through the treatment. We decided that we do want to go through with the treatment and now we are stuck waiting. We have to wait to see if our insurance company will cover the treatment and we're waiting to see if Mike can get reassigned to Ft. Bragg so that at least we'd be living in the same state. So keep your fingers and toes crossed folks and pray that the insurance company will cover the treatment!
Oh and the treatment.........we're hoping that the treatment would heal Olivia physiologically, that it would keep the disease from progressing and repair the damage that has been done. Cognitivly it's another story, ideally the treatment would stop the progression of the disease (meaning it would keep Olivia from regressing) there may be some modest cognitive development but that's not very likely. The treament is harsh. Olivia and I would live in the Pediatric Bone Marrow Unit at Duke for 6-8 weeks. Olivia would go through 8 days of really intense chemotherapy to completely destroy her immune system. Then the would do a blood transplant using umbillical cord blood that has been donated, then we would stay in the hospital until her immune system is strong enough to handle being out of the hospital and we could move into an apartment within 10 minutes of the hospital for about 4 months. Olivia would have to go back to the hospital for several hours every day so that they can continue to monitor her. After about 6 months we would be allowed to move away from the hospital (hopefully to Ft. Bragg). Olivia would be on anti-rejection medicines (that compromise her immune system) to make sure that her body doesn't reject the transplant for at least a year. It's certainly not an easy solution but we are confident that untimately it will improve Olivia's quality of life!
Wow, are you as exhausted from reading all of that as I am from typing it? Please don't be afraid to call or email us. Of course you won't know what to say, most of the time we don't know what to say either! Being parents of a child with special needs is tough. We know that all of our friends and family want to help and there will be plenty of ways that you can do that, don't worry we will let you know! For right now just pray that the insurance company will approve the treatment and that the Army will reassign Mike to Ft. Bragg!
We spent 3 very full days in North Carolina. On Monday we spent all day at the Center for Development and Learning at UNC-Chapel Hill. It was a long day but it was a great experience for us. The specialists we've seen at Seattle Children's Hospital had seen other children with MPS disorders but never any with MPS III so it was really rewarding for Mike and I to discuss Olivia with doctors who had seen so many other kids with MPS III type B. This was the very first time that we were able to get a sense for how Olivia is progressing compared with other kids who have Sanfilippo Syndrome. Olivia met with speech therapists, audiologists, a physical therapist, an occupational therapist, and a pediatrician. The team that evaluated her met together to share their findings while we got a quick lunch break and then we all meet together again for them to go over their findings. It was a really long day, we started at 8am and didn't leave until after 5pm! We took a lot of "tips" away from that meeting, things that we can start working on right now, reguardless if we are able to move forward with the clinical trial. We learned that Olivia needs hearing aids, we learned some stretches that we can do with her to help Olivia retain her mobility, we learned that developmentally Olivia is just a few months behind other kids her age but she still falls within the range of normal for her age group.
The second and third days we went to the Children's Health Center at Duke University Medical Center. We met with the doctors that are running the clinical trial. We spent a long time discussing the treatment and what it entails. We toured the Pediatric Bone Marrow Transplant Unit at Duke. We met with a social worker and Olivia had some blood work done. We spent a lot of time talking with various doctors about what we could expect for Olivia if we do go through with the treatment and what to expect if we do not go through with the treatment.
So where are we now.......right now Olivia does qualify for the treatment but we would need to get moving, we only have till August! Kids start to display more serious physical symptoms after they turn 3 and Olivia will be 3 this July so if we haven't started by August then the doctors would not recommend allowing her to go through the treatment. We decided that we do want to go through with the treatment and now we are stuck waiting. We have to wait to see if our insurance company will cover the treatment and we're waiting to see if Mike can get reassigned to Ft. Bragg so that at least we'd be living in the same state. So keep your fingers and toes crossed folks and pray that the insurance company will cover the treatment!
Oh and the treatment.........we're hoping that the treatment would heal Olivia physiologically, that it would keep the disease from progressing and repair the damage that has been done. Cognitivly it's another story, ideally the treatment would stop the progression of the disease (meaning it would keep Olivia from regressing) there may be some modest cognitive development but that's not very likely. The treament is harsh. Olivia and I would live in the Pediatric Bone Marrow Unit at Duke for 6-8 weeks. Olivia would go through 8 days of really intense chemotherapy to completely destroy her immune system. Then the would do a blood transplant using umbillical cord blood that has been donated, then we would stay in the hospital until her immune system is strong enough to handle being out of the hospital and we could move into an apartment within 10 minutes of the hospital for about 4 months. Olivia would have to go back to the hospital for several hours every day so that they can continue to monitor her. After about 6 months we would be allowed to move away from the hospital (hopefully to Ft. Bragg). Olivia would be on anti-rejection medicines (that compromise her immune system) to make sure that her body doesn't reject the transplant for at least a year. It's certainly not an easy solution but we are confident that untimately it will improve Olivia's quality of life!
Wow, are you as exhausted from reading all of that as I am from typing it? Please don't be afraid to call or email us. Of course you won't know what to say, most of the time we don't know what to say either! Being parents of a child with special needs is tough. We know that all of our friends and family want to help and there will be plenty of ways that you can do that, don't worry we will let you know! For right now just pray that the insurance company will approve the treatment and that the Army will reassign Mike to Ft. Bragg!
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