Tatiana's Trials with Hurlers Syndrome

Welcome to our little one's website. It's a journal of all the challenges and trails that Tatiana has and will face.

Serenity Prayer:
God, grant me the Serenity
To accept the things I cannot change...
Courage to change the things I can,
And Wisdom to know the difference.

Tatiana Chloe Tuckett

Born: 2/19/03

Weight: 7 11 Length: 21

Tatiana has a sister Natasha who also was born with Hurler's syndrome. Natasha Chloe Passed away May 15, 2001 while in transplant in Minnesota. Tatiana was misdiagnosed prior to being born. The Dr's assured us that they had never had a false outcome from the amino that was done. When she was born both my husband and I knew she had Hurlers. The genetics Dr confirmed what we feared but knew. She recieved a transplant May 30, 2003. She was reborned.

Journal

Thursday, June 28, 2007 4:32 PM CDT

Hi all,

I don't have much access to a computer right now. We are staying at the Ronald McDonald house in Palo Alto, California. Tatiana had her second surgery on Tuesday. She wasn't in as long as the last surgery. She went in at 7:30 am and was out by noon. She also did not swell up as much. She does seem sleeper than the last surgery she had. I was alot less scared this time around. The first surgery was really scarry for me because I did not know what to expect. We are still in ICU, this is standard for the first day. The hospital has been so busy that we are still in ICU and aren't able to get a room on the 3rd floor. This is where all the patients go for recovery. We are hoping that they at least let her out to the Ronald Mc Donald house until her final appointment next week by Friday. Dr. Steinberg wants to see her in clinic before we go home next week.

I have to say that I feel very blessed with Tatiana because she did not suffer any permanent damage from her strokes I met another parent with the same type of diagnosis. This little girl was misdiagonised for along time and has suffered paralizes and brain damage. She other wise had no other problems.

The Doctors here at Stanford and in Salt Lake City feel that perhaps this might be one case diagonised for MPS patients, but that perhaps they will see more, especially with Post BMT kids. They are hoping that with Tatiana being diagonsed, perhaps Doctors will start checking MPS kids for Moya Moya. I will add the link Moyamoya.com in case anyone is interesting in learning more. Lets just hope they don't see any other cases.

I did want to take Tatiana and her brothers to Disneyland before we went home, but it seems that it is not a good idea to have her get on any rides for a short while.

I lost my cell phone at the hospital last week. My husband brought his old one for me to activate, and of course it does not work. I don't want to leave Tatiana alone. so I will probably get another one this weekend when she is out of the hospital.

I really wanted to thank everyone for all your support and kindness while my family is having to go through this. It really does make a difference to know that people care. I feel lucky to be able to stay at the Ronald Mc Donald house while Tatiana is having to these procedures. Thank goodness for FMLA as well so that I can take time off work to be here for her. I should go back to her room now. God bless,
Maria & family

Hospital Information:

Lucille Packard Hospital at Stanford
725 Welch Road
Palo Alto, CA 94304
(650) 497-8000

Links:

E-mail Author: maria.tuckett@jetblue.com

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