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Friday, January 13, 2012

They call my son the "model child for Fetal Surgery"



Our San Francisco trip was amazing! Tyson was so full of excitement this time and I loved spending time with just my boys. Tyson would yell are names and point out different sites, and street acts. He loved the birds all over the city. It is hard to believe that it has already been 2 1/2 years since we were here pregnant with Tyson praying for miracle. I have really special memories of San Francisco. At times as I was walking the streets it seemed a bit surreal. Did I really live here and go through that?
The first night we stayed on the Wharf at the Holiday Inn and loved the location. It was the best place we have stayed in San Francisco. We ate at this delicious iris coffee shop called Biena Vista and Jared Still talks about the amazing roast he ate. We spent the first day touring the Wharf, Ghiradelli Square, shopping and visiting Pier 39. The weather was spectacular I haven't ever seen San Fran so nice.
The second day we checked into are MOMS study hotel Stanyan Park. It was a small Bed and Breakfast hotel right by Golden Gate Park. As I mentioned it was small the three of us shared a queen bed, which made for some sleepless night. Ty got sick the first night and threw up in the bed on us 3 times during the night. It was great fun! After we checked in we headed to my favorite Restaurant The CheeseCake Factory. The entire city was decorated darling for Christmas. After dinner we enjoyed walking around China Town. I must say Jared and I are pros getting around the city now after a total of 5 months being there with all of are visits. We are especially good with all of are luggage it stresses me out a bit getting on and of of the train AKA Muni, We definitely see some crazy people on the muni. One day the underground train was jam packed. I set down and for some reason Tys started singing a song he learned in his musikgarten class. He wasn't being loud and about 10 minutes later this grouchy lady yells " somebody make him shut up" I wish I was confrontational and may have said a few choice words to her. Come on lady he is a toddler stuck on a crammed bus. I kept my mouth shut and was able to get of the train the next stop, thank goodness. Rude people. I think San Francisco brings out the craziest.
Our third day was at the hospital for Tyson evaluation. A little about the evaluation for those who don't know what it is. They study ended in Feb. 2011. This is when we appeared in the newspapers and on the news. These were the preliminary results. They have to wait for all of the 186 kids to reach the age 2 1/2. The study gives a full expense paid vacation to San Francisco to test Tyson. The first day they test Tyson bladder by a urodynamic study and renal ultrasound. Both of these tests are used to check his bladder function and kidneys. The study has not seen much difference in this area from pre-natal surgery. I don't think it helped us. This seems to be where Tyson's biggest issues from Spina Bifida are. We cath (insert a tube into his bladder to drain it) him 4-5 times a day. It is fine and has just become a way of life for us. He also takes Ditropan and Senna for his bowel and bladder. At his last check up at 1 year old his bladder was small and the told us we would eventually need a bladder surgery called a bladder augmentation. Tyson hated the urodynamics test and didn't like the cords hooked up to him. We had to hold him down and it made him really sad. I felt bad for him. It was fun to see Anne Arnhym and her assistance. They are always so nice and positive. They love seeing how far Tyson has come. We did get positive results but still need to cath and can plan on that for life. His bladder held 79ml slightly more than his 1 year evaluation and his bladder appeared smooth around. He also had no reflux on his kidneys.
Since Tyson was born we have known that the results were very positive with him. He was worst case scenario and went to being the best case scenario. I felt overwhelmed with the words that were said to me. From the study nurse Rachel she said Tyson is the "model child for fetal surgery and she could only think of a one other child in the study that has done as well as Tyson. I felt my heart swell. Why were we so lucky! I immediately thanked my heavenly father for giving us such a sweet spirit and for his success. She also told us only 30% have benefited from the surgery. He was the perfect case scenario he benefited in all the areas. He walks great with out asisitive devices, no SHUNT, and appears to be progressing cognitively.
After we finished are evaluation Day 1 we took a bus to Olive Garden and then back to a full day at the the gorgeous Golden Gate Park. Most of are time was spent at Stowe Lake. It was very peaceful and gave me more time to ponder on "our miracle"
On the second day we had very "brain blasting day. It was grueling and my brain was fried before it was over. The first part was spend my asking us questions about Tyson, How many words does he have? Does he stack blocks? How many hours does he sleep? ETC... Then they have lady come from the MOMS study center in DC. She films Tyson walking and doing other various activities. Then the doctor evaluates Tyson. Because the study is completely blinded the doctors and evaluators are not allowed to know whether we were part of the pre-natal or post-natal leg. Because the scars look very different between the two surgery's they put a large bandage on his back scar and we are not allowed to mention any thing about are surgery. The doctor tests all of his reflexes to see how much function he has. She also stick toothpicks in his skin to determine what he can feel. So Tyson's lesion is L5 But he actually functions like a S4. The doctor evaluated him at S4 which is which is three level below what he really is. This was super exciting for us.
On to the worst part of the evaluation process. A psychologist evaluates Tyson's cognitive level. We go into a room. Tyson sets on a chair facing the psychologist. Jared and I are in back and we can't smile talk or say anything to him. So he does something good look at us for praise and we have to stay silent. It is super hard and Jared usually can't do it and gets warned by the crazy psychologist to keep quiet. Well the test usually only last a couple of hours. Ty was very uncooperative. He didn't want to do the stupid task 5 times like the psychologist wanted him to. I was bothered because I couldn't say anything but I knew he could do the things she wanted him to but wouldn't. We had been working on them before we flew out. They call the test "baby brain boot camp". To me it looks like the ACT. After about two hours he was done. He was crying wouldn't do anything and would even talk. I felt bad because he was looking so bad for the study who had done so much for us. I wanted him to look smart and he wasn't cooperating. I was frustrated with the crazy psychologist. Finally we all decided he needed food and a nap. We left the hospital went across the street to the food court and before we even hit the road he was asleep. Long story short he did he a little better after food and nap but was still upset and I kept telling him just answer the questions then we will leave. The test lasted about 5 hours. One cute moment after he was down putting a puzzle together or doing whatever task she wanted he would throw his hand in the air and shout "done". It was so hard not to laugh. I left feeling frustrated and Jared said who cares, " we know he can do the task and that's all that matters".
Last we walked to the fetal surgery center said are goodbyes to Rachel and the tears started streaming down my face. As I tried to babble out the words "Thank You", I could never Thank You enough for giving my son the best life, for your kindness, go above and beyond your job. The goodbyes never get easier and each time. I leave a small piece of my heart in San Francisco we look forward to are next trip in 4 years.




























































































3 comments:

The Hunsakers said...

What an incredible trip Jess! I can't imagine going through what you and your husband have been through- as well as little Ty! You are each so amazing!

Adrienne, Scott, Hanna & Hayden said...

I don't know how I have missed so many of your posts. I have been shedding tears for your words and experience. I am so happy for you all and especially Tyson! I am so glad to have you in our lives. We probably never would have met if it weren't for our boys. Your bravery with the surgery is amazing and that along with the Priesthood worked miracles for you all. So glad to read of your trip!

Amanda said...

What a great trip!
I can only imagine being a part of such a momentous study. I love all of your pictures and looks like a great time!
Just ignore those crazy psychologists - you'd think they'd know better. But what a smart husband you have - you know he can do it!