The Good, the bad and the Ugly......

We just got back from our Evaluation for Tyson in San Francisco. It was so "stinkin" fun! Our best friends the Petersen's flew out with us and as always we had a blast and laughed until we wanted to cry or puke from all the yummy food we ate. We did lots of shopping. I was in HEAVEN. I love San Fran's shopping. We drove lil mini go carts down the streets of San Fran and the "crookedest street, we went on a double decker tour bus, visited Alcatraz, went to the Aquarium and wax museum, and went to the Oakland A's and San Fran Giant's Baseball game. We played so hard we were exhausted by the end of the day's. Tyson was amazing as usual. It was hardly like we had him with us. He didn't even make a peep. Then came the evaluations read down for the update on Ty.

Sorry this post is so huge I took so many pictures.

union square

Fetal Treatment Center

I got to Meet up with Nicole who also had fetal surgery. It was great to meet another Spina Bifida mom. I am really excited for her. She is incredible and will be great mom.

GIANTS GAME

My California BABY!
Ocean Beach

I Love this girl..... My best friend in the whole world. Seriously not sure what I would do without her. Who would have thought when we met 7 years ago we would become best friends.

Riding the MUNI

After a million people wanted to touch Tyson in San Fran he needed a good scrub. What's with people touching other people kids.

Ty loved this trick, with daddy.

Alcatraz

China Town

Tyson Update:

The good, great and awesome. While we were in San Fran Ty got all of his testing done. The first day we had physical which they also checked his nerves the were very impressed by his motor ability and could not say enough on how happy they were to see the 4- point crawl. YEAH. They said he is likely going to be one of the people with Spina Bifida that you see walking down the street and have know idea they have it. The doctor said his motor function is almost normal. He is more like s2 or less and he actually is a L5. Hooray! The were very optimistic he will walk. Now at 13 months he just pulls to knees. He is pretty wobbly on his legs. Hopefully he just needs some more muscle strength. It was quit interesting. They cover is back with large bandage so the Physician will not make a biased judgement depending on which surgery we had. This because the scars look different. We are not allowed to talk about it while he is being evaluated. They also pok him with a sharp toothpick to determine what he can feel. He was not showing any feeling in the bowel area. Which surprised me because we haven't encounter any issued there yet. KNOCK ON WOOD. He was showing feeling in the bladder area although. Which is weird because those are the biggest issues now. He did so great on the developmental exam.All in all it was weird to be back in San Fran and even weirder to think that I lived there and ever thing i experienced there. Defiantly bitter sweet. I love UCSF. Incredible staff, truly caring.

The Bad. came the second day. I had kind of prepared myself for this part but still was a little disappointed. His kidney ultrasound look okay although one kidney was slightly enlarged and showed slight hydronephrosis. Then on to urodynamics. This shows how well the bladder is working. Well he is not emptying his bladder and the test showed he has high pressure in his bladder so in order to prevent kidney damage we are uping his dose of ditropan and cathing now every 4 hours. I was a little disappointed cathing is getting harder because he hates to be strapped down so likely he will be cathing for the rest of his life and when it comes time to do underwear hopefully we can keep him dry. I was okay with this and felt like if this is the one thing we had to deal with somehow I would manage. Next was the MRI. We left San Fran feeling really optimistic and I was feeling one of those days when I feel fortunate to have a child with Spina Bifida.

Then comes the ugly the nest day I get a shocking phone call for the fetal treatment center nurse Rachel stating that Ty's MRI report showed severe hydrocephalus in all three ventricles. I was shocked, all along every one has told us that they would be shocked if he ever needed a shunt. If you remember back this is the second on my list that I didn't want, the list of three things I wanted for Ty. I have been very bitter and mad why us? He is past 1 the stats go way down and babies with SB usually don't need a shunt after one. He shows none of the typical signs of hydrocephalus. All in all I am juts upset and wonder why now and why this kid can't have a break. I spent four months away from my family to prevent this. Even though other miraculous things came from the surgery. I need some answers of why? Have I not been tested enough?

One more update on a happy note. We have been through heck with Ty's glasses and after much debate I felt like i needed to see a new eye doctor after our doctor did some shady things. P.S. I would not ever go to Dr. Dries. So I finally got into Hoffman who I loved and Ty does not even need glasses can you believe this. We just have to patch two hours a night and likely eventually remove the cataract from his eye which then we may need glasses. But boy am I glad to get rid of those. He really hated them. It was pure HECK trying to keep them on.

Tommorrow is our big day and Primary's I am hoping for a miracle or some answers. I really don't want a brain surgery. I don't think I am strong enough for this.

SB mom's any suggestions. Have you had similar experiences.

The "famous" sea lions

If you ever go to San Fran you have to drive these. So FUN!!!