Proud Momma!

This past Friday Olivia had a CT scan (also known as a CAT scan). For those of you unfamiliar with this process you have to lay down on a table and then they use giant Velcro straps to hold you in position. You have to place your head in between two padded boards. Then they move the table into a giant round tube and take several x-rays at the same time so that they can create a multidimensional image. Because Olivia is just over 3 years old they booked her appointment into a sedated appointment slot. Adults or older children are not normally sedated for this procedure but most young children are. Our appointment was for 11am and since we were expecting Olivia to be sedated we were not able to give her anything to eat or drink that day. Naturally they were running behind and we didn't actually get into the room to have the CT scan until almost 1:30. The technician agreed that they would attempt to do the scan without sedation but that they were ready to sedate her if necessary. I promised Olivia that if she was very still then she could have juice and a snack as soon as the scan was over. Olivia calmly laid down and allowed herself to be strapped down to the table. She even giggled as the technician moved the table back and forth to get it into position. She held my hand and was very still and the entire thing was over in about 10 minutes! I am so proud of her for being such a big girl!


My big girl waiting for the CT scan. Look at that smile!

Peter's Final Mini-Deployment Update

Hey Mom & Dad--
I'm getting ready to make a break for it--If every thingworks out ok--I'm gonna blow this joint--I just have to get past the ranch security--ETA is 10pm tonight--can you guys pick me up--my bag of stuff is too big for me to drag and it's got my favorite toys in it--see you soon--

Your son,
Peter S. Leiva

PS don't tell Grandma--she'll try to stop me!!!!

A year ago today...

Oilvia was diagnosed with Sanfilippo syndrome. When Olivia was hospitalized for an eye infection in January of 2008 they had one of the interns on the children's ward come do a general developmental test. The doctors all assured me that they didn't have any real concerns but and they were mainly doing it to give the intern some practice administering the test since it was a teaching hospital. The results of that test indicated that Olivia was within the normal range but on the lower side. Olivia was discharged from the hospital with a referral to see an ENT (her eye infection started in her sinuses so the ENT follow-up was an absolute necessity) and a referral to see a Developmental Pediatrician (the would repeat the developmental testing so we could get an accurate result). In the months (yes I say months because we were working with the army medical system here) Olivia had her referral appointments. Those led to more tests and more referrals to different tests. The Developmental pediatrician assured us that Olivia was meeting all of her milestones. She wasn't talking much yet but at this point she was only 18 months old, that wasn't all that oncommon. Some kids are late talkers. He did put in a referral for Olivia to see an audiologist to determine if she was having difficulty hearing. The ENT recommended that Olivia get tubes put in her ears and since she'd had such complications with her sinuses (an infection in her eye that landed her in the hospital) her andeoids should be removed. The surgery was scheduled. That first surgery was so very different. I don't think that we're any less nervous now but there's something about the first time your child is having surgery. So much about the process is unfamiliar and unexpected. I will never forget the way the surgeon came to find Mike and I following the procedure. He assured us that she was doing fine and that he would take us to see her. He did say that he noticed some "genetic abnormalities" and he referred us to a developmental pediatrician again. It took several weeks for us to get in to see the developmental pediatrician again. When we finally saw Dr. H the developmental pediatrician Olivia had just started speech therapy. I didn't have any real concerns about her development, lots of kids need speech therapy and do just fine! Dr. H was always pretty open with us, he was careful not to alarm us unnecessairly but he did tell us what his concerns were. We were told that they suspected that Olivia might have a type of MPS but that she was doing so well developmentally that they were sure it was one of the milder forms of MPS. I was told to bring in some family pictures, especially pictures of Olivia at different ages. The doctors at the army hospital went to a weekly meeting with doctors at Seattle Children's and they were going to present Olivia's case. By this time I was pregnant so we started to become a little concerned. Olivia had several other tests done as doctors tried to find out which type of MPS Olivia had. Dr. H told us not to start looking online yet, he didn't want us to be frightened, they thought Olivia had a mild type of MPS. Of course I went right home and started researching, Mike was able to exhibit some self-control and was there to calm me down when I would completely freak out about what was going on. At one point we were told by specialists at Seattle Children's that they had narrowed it down to MPS types that were treatable with replacement enzyme therapy but that further testing would need to be done.

That brings us back to a year ago today....Dr. H called to say that they had the restults and he wanted to know if Mike and I could come in to meet with him. I was still optimistic, did we really need to come in I asked? Well, do you want me to tell you over the phone, he asked. I could tell by his voice that it was not good. Mike was able to meet me at the doctor's office that afternoon. He told us that Olivia had MPS III type B, Sanfilippo syndrome type B. She woudl continue to make developmental progress for a time but then she would begin to lag behind her peers then she would stop making any progress at all. I remember trying to ask something about her ability to learn and retain knowledge---would she stop learning new things or would she forget/loose the things that she already knows? She would loose the ability to learn new things as well as things she already had learned. Her life expectancy would be shortened, average is between 10-14 but sometimes people live into their 20's. Dr. H referred us to the biometabolic specialist at Seattle Children's and I already had an appointment for a few days later.

Our lives changed in an instant that afternoon. I was a complete mess, I had done all the research, I knew what MPS III was. I thank God that Mike didn't know exactly what we were in for. He was able to help me remain calm and process things one step at a time.

Several different scenarios kept running though my head that afternoon and in the weeks that followed. I never would have imagined that just one year after Olivia's diagnosis we would be 78 days post unbilical cord blood stem cell transplant! We know that this transplant is not a cure for Sanfilippo Syndrome. We are impressed with the developmental progress that she continues to make each day. Olivia's journey will be very different, our journey as parents will be very different than what we had anticipated but at least we're on a road! We might go in circles for a while or get a little lost along the way but at least we're going somewhere! I am so much more hopefull today than I was a year ago. I can't even imagine how I will feel this time next year...

The Bad News, the Good News, and the Even Better News

The Bad News is that on Sunday night/early Morning my Mom's truck was stolen from the driveway of the house that Mike is living in Fayetteville. Background info: my Mom was nice enough to let us borrow her truck after Olivia was discharged from the hospital. The plan was for Mike to use her truck for about 2 months until he was able to go to New Orleans to meet up with his parents who are generously giving us one of their cars to use. The truck was stolen from the driveway of the house that Mike is living in with one of our friends from Ft. Carson (CO). We later learned that 2 other cars in the same neighborhood were stolen, 3 other cars were broken in to and 2 other cars were vandalized.

The Good News is that on Tuesday night the police were able to find the truck in the parking lot of a strip club in Fayetteville. The truck appears to be in good condition. They haven't apprehended any suspects but hopefully they will get some fingerprints from my mom's truck.

The Even Better News is that my Mom and Dad are flying here THIS WEEKEND to pick up the truck and drive it back to Texas and.......THEY ARE BRINGING PETER! We talked to the doctor about it on Wednesday and they said it's time for our family to be reunited. Olivia is doing well and there's no reason why Peter can't be here! After 103 days we will be a family again (at least on the weekends when Mike is here of course)!