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Sunday, June 20, 2010

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.


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.


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!!!


Sarah Hull said...

Your trip looked like so much fun! I am so happy for you guys about the good! That is awesome! The shunt is a hard blow. We had that same experience with Katie. She was doing so well and we thought we would be shunt free. Well, at 18 months she needed one. It was SO tough b/c I was pregnant and was a basket case. I did not want her to have to go through all of that.
BUT, i must say looking back I am SO glad we did. Once she got her shunt it seemed like she was even happier. Like possibly she was having headaches and pain that we did not know about. She seemed to THRIVE way more once the shunt was in place. It was amazing, but WAY tough while going through it.
If you need to talk things over or have more questions always feel free to email me.
Good luck and take care!

Robert and Lindsay said...

Looks like a fun trip! I'm so sorry about the bad news you received. Good luck and hope things improve! Ty is so adorable! You really would never know just looking at him. That's a huge accomplishment in itself!

Jaci said...

Wow Jess!!
I am thinking you went to nursing school for Ty! All of this information is way over my head. It's a blessing that you have so much education on what is going on.
I will keep Ty in my prayers for sure. Poor guy has been through so much already! many prayers that the trials slow down and he can just have a happy childhood! He looks like a happy camper and I'm sure it's from all the love you give him!!
If you ever need to vent, I am only a phone call away! Take care and good luck!!! said...

Jessica, I love reading your blog and seeing how strong you have been throughout this whole endeavor. You are seriously a strength to me because you have done it all and you continue to be strong and moving forward. Keep your chin up!

Emily S said...

Looks like a fun trip, your little guy is so cute! And what a blessing to have all the motor skills he does. SO SORRY about the bad news. That must be heartbreaking for you. You are a good, good person and a great mommy.

Mandy said...

Jessica Oh how I can sooooo relate to this!! It seems so long ago but yet like yesterday when I was going through all these emotions!! I remember telling Mike you have the priesthood and you can heal him I Know it!! I remember asking the Lord for a miracle and pleading with Him that I knew He could heal him and then when He didn't, feeling like I must be doing something wrong or just feeling like He wasn't hearing me so I needed to fast more or sacrifice more. After the first two years of Tucker's life even more close to his third year I started to look at what I had asked the Lord of and what I was expecting of Tucker and myslef and Mike really. I realized I was always wanting something different and not accepting things the way they were and are and what the Lord had intended me to learn. Very hard lesson and still to this day I still wonder if I am expected to have faith in changing things or accepting things I was always asking where the line was!! I have slowly come to realize that I can't do anything without the Lord and no matter how many doctors I take him to or no matter how much time I spend in therapy with him or no matter how much I pray and plead or beg, the Lord, the ultimate realization for me was the Lord is the one in charge and I have to have faith in His plan! HARD for me to do!! I just want to take the wheel all the time and fix things or prevent other things!!
Two years ago we had to go through Tucker's first shunt revision and once again I started pleading and begging the Lord to fix it change things make him better. It took three shunt revisions for it to work. He has done well for two years almost three now. Before that he had gone 8 years without one.!! What a blessing. I guess what I am trying to say for me I have learned the same lesson over and over again. It is that He is the one in charge and I can state my case and pray like I never have before but His will even though it may be the hardest is always the best. It is my job to find the silver in the lining and to teach Tucker that He has to see the good in this. He completely understands and has never complained but a few times has asked me "why" in the darkest moments when I feel like ok seriously enough already!! :) We cry together and then we start thinking of all the great blessings we have been given. He even cheers me up on some of those moments I have always thought I can't show him my emotions or how I really deeply feel about all of this because his life is hard enough he doesn't need anymore to worry about but then I realize he knows. There is always moments I can't hide it!!
A few years ago he noticed someone with out a leg and without an arm and he said oh mom I am so blessed I can use my arms and even move my legs. He teaches me all the time about gratitude!!
I still have my days and even nights where I go to my alone place and cry and then I pick myself up and remember the many blessings we have been given and the many things I have learned from all of this.
I am going on and on. I am sorry I just so can relate to this post and I ache for you and wish I could change it!! I just want you to know that I am here!! ANYTIME you need to vent, yell, cry, whatever.! I know I didn't get to know you very well in our last ward before we were split and wish I would have but please know you can call me anytime or visit anytime! I have come to believe that these little guys come to us like this for us to all pull together and have more empathy for others! I don't know if anything I said can help you but it always helps me to share what I forget often!! THank you for listening!
You are an amazing mother and person I know that you can do this and that there will come something good from all of this there always is! Good luck and please let us know how you are doing!! If you are ever at primarys we would love to come visit!! It is always good to get visitors when we are there it makes it a little bit easier!!
Sending our love and prayers! Mandy

Heather Weir said...

Sorry about maybe needing a shunt. I had fetal surgery too and My little girl had to get a shunt at 1 month old. But her Chaiiri almost totally reveresed. you really do need to look at all the positives that came with it. I had a few moments of why did I just go through all this 3 months away from my family if it was for nothing.. But it wasn't for nothing I'm sure the surgery helped our Charlotte.
Surgery stinks. It's so scary seeing them after it's all over with tubes all over but I think God made little kids stronger then we think. I'm looking forward to our One year visit back to UCSF. I loved all the people and doctors there too. I'll sit back and watch Charlotte grow until that time comes.

We have to Cath her 4-5 times a day too and on ditropan.