History

Tuesday, June 19, 2007 10:17 PM CDT

Hi Everyone,

My son Alex and I drove to Palo Alto California Thursday. We had Tatiana's first appointment on friday. We were in the hospital all afternoon a procedure called a brain spec. This is done to check where she is getting blood flow. We had the weekend to recover. We took Tatiana to Monterey Bay Aquariam on Saturday. On Sunday we took her to Great America theme park. Alex and I wanted to do something special before her surgeries. On Monday we were back to the hospital by 9 am to see Dr. Steinberg and get another Brain spec done to the other side of her brain. She also had an MRI. She did quite well through it all.

Tuesday, came and we arrived at the hospital to register at 6am. She was preped for surgery and ready by 7:30 am. We were all really scared but felt that we could not be in a better place for this type of surgery. Dr. Steinberg has now preformed well over 430 Moya Moya surgeries. My whole little family(Joe, Alex, And Graden) was at the hospital and even my Mom came to be with us for support. The surgery was alot longer then we were initially told. We did not get to see her until 3 pm. Although we kept getting updated on her condition. Dr. Steinberg came out and told us what he did and said Tatiana was doing great. We finally were able to see her. She is in the intensive care unit for the night. She was very nausas, Sleepy and in pain. We were told that for today she would be very sleepy, but by tomorrow she should feel better and perhaps we could get her to eat. Tatiana was really scared when we would leave so we would try to leave when we knew she would be asleep for a while. Sorry for the brief update I will write more when I get a chance. She still has her next surgery scheduled June 27th. Thanks everyone for you support. God Bless.

Maria and Family

Monday, May 14, 2007 10:42 PM CDT

HI all,

Happy Belated Mother's Day. Hope everyone had a good time.

We finally established that indeed Tatiana has Moya Moya and will need two operations soon. We decided to take her to Stanford University in California. They have alot of experience with this particular disease. Dr Steinberg, who will perform the surgery, has done over 400 surgeries. This facility takes patients from all over the world for this condition. I feel really good about having it done in Stanford as oppose to having it done in Utah.

We are leaving June 8th through July 5th. She has one procedure scheduled for June 19th and the other June 27th. The in between time is the recovery time. We are hoping to stay at the Ronald McDonald house close to the hospital. I am waiting to hear back from a Stanford social worker soon to find out more.

We are leaving a bit earlier than the scheduled surgery because they want do some test prior to surgery. I am scared, but feel right about this decision. Not that I have much of a choice like most of the surgeries our kids have to have.

Tatiana has not had any strokes since the last one she had in December. I am praying that she doesn't have any before her surgery date. She does complain that her head feels funny. She also says that her left eye hurts.

Hopefully we can take her to Disneyland before her surgery date. I think she would really enjoy it. I will try and post more when I know more. Please pray for all MPS kids going through major procedures.

God Bless,

Maria & Family

Monday, March 26, 2007 7:08 PM CDT

Hi all,

I really wanted to update when I knew for sure what was going to happen with Tatiana, but she keeps having test after test. Her seizures turned out to be what they called mini strokes. She has a condition in her head called (Moya moya). Moyamoya disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage. If her narrowing is severe she will need surgery. She has yet another test on wednesday. So I am hoping that it is not so serious. So far she has not had any more episodes. Everything else ( Knee surgery & ERT) has been put on hold until we know whether she will require surgery in her head.

We also had an unexpected surprise. We found out we were pregnant (IUD). We were quite scared and unsure of what the right thing to do is. So we decided to run testing and hopes that it was OK. It's a boy, he is unaffected. He is a carrier of my husband's gene. The genetic counseler felt better about it. She said she would be a little worried if it would have been my mutation. I think she was worried that we would have the same problem we did with Tatiana. I am relieved that I don't need to worry about this too.

I will update more once I know more on Tatiana. Please pray that it nothing too serious and this can be fixed. I just have to say that this seems unfair for our kids to always go through so much.

God Bless and Happy Easter,

Maria

Tuesday, February 6, 2007 8:53 PM CST

Hope everyone is well. Our family has been a little busy. The doctors found a white mass in Tatiana's CT scan that made them suspicious enough to have an MRI scheduled. Her MRI showed that she has a blood clot in the front part of her brain. Her Drs told me that they normally see this in patients that have had radiation treatments while in transplant. Her BMT did not have radiation as part of the regiment, so they aren’t sure what the cause is. We have been scheduling various testing since. They requested blood work which we did Friday to make sure her blood is not coagulating. She has an echo scheduled this Thursday. We are trying to schedule in angiogram as well. Hopefully we can see what caused it soon. She hasn’t had a seizure for a while. We have an appointment with Genetics also to see what can be done regarding the pain she has been getting in her hands. She also has complained in the mornings that her tummy hurts. I am wondering if she is having acid reflex.We had the flu in house for the last month. I think it finally cleared up. We all had it so far and it was a nasty one that lasted over a week.
Tatiana will be starting school on Feb 13th. She is really excited. All she ever talks about is making new friends even though she is incredibly shy. Her birthday is coming upon Fen 19th and she has requested a BIG birthday party. I am not sure exactly what that entails. I am sure she will be happy just having a little something that day. I will keep everyone posted on her testing. I am hopeful that this is something manageable. Have a Great Valentines’ day..

Best wishes,

Maria

Wednesday, November 22, 2006 8:42 PM CST

Happy Thanksgiving. Hope everyone is well we have been really stressed and busy. Both my parents suffered stroke and were quite ill this summer. Thankfully they have recovered a little. We moved to a new home and are still trying to sell our old home. The thought of having two mortgages is stressful. Hope we sell our home soon. The kids are enrolled in a new school district and seem to be OK. We like the extra space in the new house but we are getting use to the move and the new environment.

Tatiana had a sleep study in September and the Dr said she has restless leg syndrome. She gave her medication for it. She also told me that she paradox in her breathing while she sleeps and makes her little body work really hard when she is not wearing her C-Pap. As you all know this is something really hard to make them wear. I have another orthopedic appointment in December to check her back and make sure that it has not gotten worse. For the most part she is doing well. My niece (who is 28) is always amazed at Tatiana's intelligence. My niece always says that Tati is my smartest kid. She can remember things from days past. She surprises me with what she retains. I am hoping that she qualifies for special needs program and will be able to start preschool soon. I will post pictures soon.

God Bless,

Maria, Tati & Family

Wednesday, November 22, 2006 8:42 PM CST

Wednesday, August 30, 2006 7:59 PM CDT

Hi everyone,

Thank you for the well wishes. Jodi, I am so glad you wrote to me. I think of you often. I miss you so much. I can't believe how much time has passed. Everything that we went through with our little angels is still fresh in my mind as if it were yesterday.

I am not really sure what is happening with my Dad. He seems really depressed and refuses to take his medications. Mom says that she tries to explain why he isn't allowed that much to drink and he gets mad. Now I understand why some of the nurses would say that kids are easier then adults. I was going to Cali to see him for Labor Day, but my Mom thought I should wait. So I guess we will just play in Salt Lake this weekend and go camping somewhere.

Tatiana is well. Her enzyme level weren't that high when we got the results back. I have a genetics appointment and a pulmonary appointment next week to see about ERT. What is normal enzyme activity? I always seem to get very vague answers on this. I do not want to do ERT if it means more harm then good, but why can I not know what is normal enzyme levels? If hers are low, how much enzyme activity does she need to function normal?

Wishing everyone the best. Hope everyone has a great labor day weekend.

God Bless

Friday, August 4, 2006 1:26 AM CDT

Hi all,

Summer has been busy. Hope everyone is well. Tatiana has been doing really well.

July 26th is My Angel's B-day Natasha. Right before her birthday I always start feeling a little sad. I still miss her very much. I know that dwelling on the past does not help anyone. I just wish I could have helped my baby. I guess we all wish that.

My father has been quite ill. He suffered a stroke early this year and currently has suffered another one. My sister Letty has had to drive my Dad to all his appointments and helps take care of things. My dad is on Dialyses. We were waiting for him to recover from his first stroke so that he could have heart surgery, but his kidneys are only working 40%. The Drs felt he would not survive surgery because his kidneys are so bad. We are hopeful that he can have surgery soon. Please keep him in your prayers that he may recover.

My kids are getting a little restless this year. I think they are getting bored. I feel that it’s because I work nights and have very little time to go places during the nights I work. Next summer I think I will put Graden & Tatiana in a summer camp. Alex came back a week early from his dads because he was bored. His dad works allot so he had very little time to spend with him. We do go places on the weekends, perhaps now it is expected and when I don't they get disappointed. Such is life. LOL

Hope everyone is keeping cool this summer. We have had some crazy weather. Wishing everyone the best always,

Maria & family

Tuesday, July 11, 2006 2:08 AM CDT

Hi All,

I hope this message finds everyone well. As for Tatiana she has been well. She complained that her legs hurt a lot so I made an appointment to see the orthopedic doctor. We saw the Dr and he said that her back was at a 60 degrees. He said if it continues this way, we should plan on her having back surgery next summer and same with her knees. As for the pain he said it was probably growing pains. Tatiana's little brother alos wakes up at night crying because he has leg cramps. I did notice that her feet are bigger. Perhaps that's all that it was. I still have to see pulmonary and do labs again. We are planning on labs tomorrow and then the Zoo. It is always so scary for me to take her in. I hate hearing that she needs anything surgical done.

We have been going swimming a lot this summer so she is quite tan (dark). Like her Mommy. She just love being in the water. We have had some house guest come to visit. My friend's husband was working on the premiere of Pirates of the Caribbean, so she came out the week it was due to open because he was so busy. I was really nice to have people over. She kept us so busy sight seeing Utah that we are still recovering. LOL Nicole we love you. Now we have my nephew and niece visiting.

Hope all had a great 4th of July. In Utah they also celebrate July 24th (Pioneer Day). So we have another day to celebrate. Sorry that I have not been better at updating, but like they say no news is good news. God Bless everyone. Wishing everyone well.

Peace

Wednesday, May 10, 2006 11:51 PM CDT

Hi all,

I hope everyone had a great Easter. We spend Easter in Las Vegas with my cousin Ali and his family. I thought it would be nice to go down there because the weather in Utah was still pretty cold. The kids had fun searching for eggs. Tatiana has been well. She really likes school. I am not sure if I should continue to have her go to school through the summer or not. I feel she needs a speech therapy, but at the school that she is going to, they do not seem to think that she needs any extra help. She has her yearly check up for BMT coming up in July so she needs more tests done to see how she is doing.

Nothing came back on the tests that she had done to see why she was having seizures. She has not had anymore seizures. I am hoping that it was nothing. Knock on wood. Every so often she complains that her feet and her knees hurt. The pain does not slow her down one bit though. She still is quite active.

Tatiana had a CNA that came to take care of her four days a week for the past 2 years who moved to another job. So she was without a CNA for a couple of weeks and she kept asking for Krystal. Well, Monday she got a replacement. She is an older lady who's from Louisiana. Tatiana really seems to like her. She isn't sad anymore when I have to leave for work because she has Diane that will take her to the park and for walks. I am so glad because I do not like leaving her alone with the boys for that long (3hrs until her daddy comes home). Alex was watching her until her Dad came home from work. You know teenagers though, taking care of little ones is the last thing that they want to do.

We are planning a small trip to Vancouver, Canada for my friend Amy's wedding. The kids will be going to California while we are in Canada. My family is always happy to have them around so I feel more comfortable flying them down there. They are excited to go, my niece already planned to take them to Sulvan (A small Danish town North of California) for a couple of days.

I hope that everyone has a Great Mother's day and Memorial Day weekend if I am not able to write sooner. God Bless.

Wednesday, May 10, 2006 11:51 PM CDT

Tuesday, March 28, 2006 11:50 PM CST

Hi all,

Just a quick hello to let everyone know that Tatiana is well. She started school a week after her b-day and she just loves it. She is really cute. She packs her back pack and waits so that I can take her to school for a couple of hours twice a week.

I did receive the results from her EEG barely yesterday. Her Dr. called because she said she was concerned. She said Tatiana’s test came back fine, but she was worried because she had just had an MPS child in and did the LP test that needed a shunt, which this poor child had lost some of her eye sight. Tatiana does have her MRI scheduled this Friday and will get her eyes checked on Tuesday. The only thing Tatiana has complained about is her tummy and her legs hurting. The genetics Dr wanted to wait for these results because he feels Tatiana does not need ERT. I how ever am not completely convinced. I guess we will continue to wait and see. Please pray for all the MPS babies still going through BMT.

Best wishes to all.

Thursday, January 26, 2006 0:20 AM CST

Hi All,

Tatiana has been doing well. It seems like such a miracle to hear her speak and interact. She is truly my miracle baby. We are still waiting to have more tests done to see what is causing her seizures. She has not had any in a while so let's pray that she doesn’t. She did have a CT scan that showed no changesd since the last CT scan which was done 6 months ago.

What I have seen in her is a slight change in her walk. She seems to be off balance a little. Nothing can slow her down she still runs and climbs and does everything her little brother does. I will update when I have more information once she has the Eco, EEG, sleep study, and MRI done. Thank you all for your continued support and god bless.

Maria, Tatiana, & family

Thursday, September 29, 2005 4:14 AM CDT

Hi Everyone,

I know it's been awhile, but no news is sometimes good news. Tatiana has been doing well. She will be starting ERT soon. She also has been speaking full sentences and loves to sing songs. She has always had quite the personality, but to her speak amazes me. She is so smart and eager to learn.

Tatiana is quite the princess fan and the Dora Fan. The first thing she does when she wakes up in the morning is turn on the TV so that she can see Dora. So she was asked Santa to bring her Dora doll house and a princess doll.

She still seems to have small episodes where her hips hurt. Now that she can speak, she clearly lets me know what is wrong. I am hoping that she can let the Drs' know where she has pain. She has an orthopedic appointment December 19th and she has a genetics appointment January 4th to discuss ERT. The Drs are hoping that this will help her bones. I am hoping that it does as well. I really am very grateful that she has been doing so well.

May everyone enjoy the holidays and have a prosperous New Year. Our thoughts and prayers are with the families who have had a loss and who are having health challenges.

Peace & Love to all,

Maria & Family

Tuesday, September 6, 2005 1:44 AM CDT

Hi All,

Tatiana and family have been doing well. We are getting back to the normal routine with the boys going back to school. Graden started kindergarten and Alex is a junior at Murray High School. Alex started preparing for his pre SAT. He is trying really hard to prepare for college.

This past Sunday we took Tatiana and Graden to the park to ride there bikes after dinner. The kids decided the playground seemed more enticing. As the kids were playing we bumped into one of the nurses that took care of Tatiana when she was in the hospital. She was so excited to see how well Tatiana was doing. Climbing and playing. She told me how nice it was to see her because after the kids leave the hospital they hardly ever see the kids that do well again. Seeing how well she was doing made her feel that all of the kids go through is worth it. She is the second nurse that I have run into and both have made me feel good to see how elated they are when they see Tatiana.

Joe and I are going on an Alaska Cruise September 10th that has been planned for over 2 years. It was something his sibling wanted to do for there dad. Joe is really excited and can't wait to go. I am more afraid to leave the kids. I know I need to have a time away. Tatiana is staying with Liz and Tryon. They had a little named Daniel who had Hurler's syndrome. Natasha and Daniel are both in the same cemetery. Alex and Graden are staying home. Graden will be picked up and dropped of by my friend Angie who lives down the street from. She has always been so good to help us out. I thought of taking the two little to my family in California, but I felt that if anything happen there Dr's are all in Utah and they would be better of.

Tatiana did have a cardiology appointment last week where they wanted to sedate her. I prefer to schedule some other doctors at the same time. I am not very comfortable when they need to use anesthesia. That appointment is scheduled when we return. She has been doing well. She hasn't complained of any pain. She also has been increasing her vocabulary which is always nice. Perhaps soon she will just talk. Hope eveyone had a great Labor day Weekend.

Peace & Love,

Maria and Family

Thursday, August 25, 2005 6:18 PM CDT

Hi all,

I recieved this from Jean and thought some people would be interested in reading:

Who can relate?
Jean

Where Are the Parents?
By Sue Stuyvesant, Parent

Reprinted with permission from the Forgotten Kids webpage

Hey everyone. For those of you who don't know me (I'm only an occasional
poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder -- and CUTE! OK, now for the reason I'm posting.

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren't more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, "Where are the parents?" I went home that night, started thinking - and boy was I pi**ed - and banged this "little" essay out the next day on my lunch break.
By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around.............

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, "Is this the time when my child doesn't pull through?" They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact.

Sue passed away in October 2003. Michelle turned 18 in September 2005.
Peace & Love, Maria & family

Friday, August 12, 2005 1:37 AM CDT

Hi All,

I thought I would update. The last update I wrote I was just a little down. Perhaps I should take Yoga. LOL I do feel a lot better regarding Tatiana’s Donor cell count. When we did her blood work we had drawn blood to check her enzyme levels as well. The actual value was 0.20 with the range being 0.17-0.54. I felt a big sigh of relief. Her genetics Dr informed me that ERT does improve joint mobility, at least in the shoulders and the knees and maybe in the hands - and that BMT doesn't really help the orthopedic manifestations. I will be seeing genetics soon. Tatiana has been talking more and is very expressive when she wants something. She is a cutie.

Just a short note. Thank you all for you support.

Peace & Love,

Maria

Saturday, July 30, 2005 7:28 PM CDT

Hi all,

Tatiana and family have been doing well. She had a Bone Marrow follow up and had blood work up to see how she is doing. Dr. Asche checked her and said she looked great. She felt that her face looked really good. She mentioned some thickening in her chest bone in front, but that her heart rate, blood pressure, and lungs sounded good. During our visit the blood work had yet to come back, and she said she would call me to let me know. She then called me the next day to let me know that her donor cells were at 79%. This alarmed me because to be honest I am a paranoid Mom. I am so afraid of losing her. Last year her test was 85%. I worry about her losing her engraphment. I wish there was a way to make it 100%. She did say we needed to see what her enzyme levels showed before we panicked. I am not sure how to feel about this, since they had mentioned that in theory she could potentially lose her engraphment when you do ERT and BMT. The genetic Dr said, “If the levels are low then they will want to do ERT.” Tatiana had a test 3 months back to check her enzymes and they were low. They were going to retest to make sure. I know that they will be low, but what I don't know if getting ERT has anything to do with how low her Donor cells got. The BMT Dr did say that kids with genetic transplants that do not have 100% engraphment she has seen there Donor cells flexuate. I know I just have to have faith because it really is out of hands.

July 26th was my Natasha's birthday. Usually when that day starts creeping up for me, it is emotionally hard. I still get very sensitive. I subconsciously start having all those memories of her passing fresh in my mind. I loved her so much and would have done anything for her that my heart feels really heavy with feeling she no longer is with me. The only consolation I have is that I will be with her someday and that I am needed here now. I remember being in parent hour at the hospital how I always said jokingly that they would have to put me away if something happened to Tatiana because I don't think that I could handle it. But as we all know many a true words are said in jest.

It was also Graden's Birthday. His B-day is July 23rd. We celebrated this Friday. He had a great party with all the neighborhood friends and family. He seemed really excited, especially when it came time to opening presents. Last year he was a big Spiderman fan and this year he is a big Star Wars fan. Tatiana loves playing with Graden. Those two are so competitive, they always want what each other has not matter what it is. So off to the store I go to buy her a toy as well so that they don't fight. He stayed up till 11:30 pm when he finally fell asleep. He was having so much fun with his sword that he would not fall a sleep.

I have to go for now. My regards and God bless.

Tuesday, July 19, 2005 2:29 AM CDT

Hi all,

Hope everyone had a good 4 of July. We spend the day up in East Canyon with my husband’s family. We ate, played games, and had dinner. Both Tatiana and Graden enjoyed the fireworks show for about 5 minutes. It was much more fun to chase each other instead. The kids really enjoyed just being able to run around and play by the mountains.

Weather in Utah has been interesting as am sure everyone else feels the same way about where they live. We have had so much rain that the rivers are really full.

Tatiana has been doing well. She hasn't complained about pain as much. We had an appointment with Dr. Ogilivie for orthopedics. He said that her back has not gotten any worse and that her hips, interesting enough seem to be better then the last check up. I felt good to hear that. I still was curious about the pain that she has been getting. He did suggest getting a CT scan done. This is the same thing that her Genetics Dr suggested. He said that when she has the pain to bring her right in. She still needs to get the PT, OT and speech become more regular. For some reason they have not been on time. I hoping that after the summer thing will be more regular.

Tatiana has also shown an interest in potty training. Except that she just takes her diapers of instead of bringing wipes and a diaper like she use to. She really hates to be wet and dirty. I need to find a better way to potty train her.

Just a quick note to let everyone know that she is doing well. God Bless and Peace

The Tucketts

Tuesday, June 28, 2005 2:40 AM CDT

Hello everyone,

Since we have been home things have gotten a little normal. We have been busy dealing with setting up therapy and lunch dates with friends. I also have to work a bit more than normal in return for the help that I got during the 2 weeks I was off. I should be done with that in a couple of weeks.

Tatiana seems to be doing alot better. She hasn't been in pain that much. She has been less active because we don't allow to jump around as much. We don't let her out of sight. I also have not seen another seizure. I can deal with the pain because I am pretty sure it's her hips, but the seizure I hope I never see again. She does have a Shriner's appt in July and a BMT one as well.

Small note. Hope everyone is doing well. Have a safe and memoriable 4th of July. God Bless.

Tuesday, June 21, 2005 2:27 AM CDT

Hi all,

Well we have been somewhat busy. Sorry that I haven't written much. I was working a lot so that I would be able to take 2 weeks and go to California to visit my family.

I left for California on Friday, June 3rd. Graden, Tatiana, my husband and I drove down. I must say it was nice to get away. We wanted to forget about home for a while. Tatiana was very excited to be out so much and she played outside most of the day. We went to Sea World and she seemed to have lots of fun. Most of time we just spent time with Auntie Letty having her drive us everywhere. I did get a little scared with all the earthquakes that accrued within the 2 weeks that we were there.

Tatiana seemed really excited and did really well on the road trip. We arrived in Las Vegas for the night. We stayed with Connie and Ali. Tatiana seemed OK. I gave her a bath and she started to cry. I just thought she wanted to go play, but when we put her down on the floor, she lay down and just seemed really out of it. I called to her and she was unresponsive. I feel that she had a seizure, because when I picked her up her little body was limp. I freaked out and wanted to call 911. This is the first time this has happened. Just as I got ready to call she seemed to snap out of it but she was still really quite and did not want to interact. She just wanted to sit. We weren't sure whether to go back or to continue our travel to California. We decided to continue. When we got there I would call Tami to see if she could give me the name of a Dr that most of the MPS kids see. She did and I called, but he never called back. Tatiana did not have another episode the rest of the trip. What she seem to have was a lot of pain from playing so much. This was the most active I have ever seen her. I felt that perhaps she over did it and that her hips might be hurting. She did have a day where she seemed to be in pain. The pain would go away for an hour and then come back. I got really worried that it would be her back or her hips. I took her to Kaiser, which was the nearest hospital in Riverside. The Dr felt that without having her history he wouldn't be able help much. He also said that it wouldn't make any sense to leave because we would have wait anyways to see someone at shriner's After that I just didn't let her go out and play as much. We would just do fun things together where I could watch her closely and not let her climb and jump as much as before. She seemed better on the remainder of the trip. I hope Shriner's can see her soon. Hopefully I won't hear anything bad. Lately I have been dreading to take her to see more Drs because I just don't want to hear negative news. I know we have to. This is our life. I just have to have faith that things will b e alright.

I hope that everyone had a great Father's day.

God bless,

Maria & Family

Wednesday, May 4, 2005 1:35 AM CDT

Hope everyone is well. Tatiana has been doing well. We are still waiting to hear more on ERT, but so far the test haven't came back. She just got a new pair of glasses that I need to pick up. We are still not sure about the hearing aids. The Doctor has not informed me whether he thinks she needs them or not. We have another BMT appointment in July, but before that we have to see ophthalmology, orthopedic, Neuro Physic evaluation, and Pulmonary. She hasn't had any heart problems so far, but I am wondering if it wouldn't be a bad idea to have her checked soon.

She has also been talking more. She has been repeating everything we say. I think she will be talking. I hope. We took her to the park and I was so amazed to see her climb the stairs with very little effort. She was jumping on the chain link bridge at the playground. She was able to hold herself up on a swing. I can't believe how active she is. I feel like I need to be careful because she seems to feel invincible. My husband thinks I baby her to much. He is constantly telling how capable she is. I know, but I can't help but worry especially since she has been through so much.

I will update with pictures soon. I am actually improving on how to download them. Peace and love to all.

Sincerely,

Maria, Tatiana and the rest of the Tackett’s

Wednesday, April 6, 2005 3:42 AM CDT

Greetings Everyone,

I trust that everyone had a good Easter. Tatiana had lots of fun picking up Easter eggs that the Easter bunny left in our yard. She seemed to be enjoying herself with her little brother. I only wish it would stop snowing and raining here. Tatiana went to see an audiologist last week and again they couldn’t get a good result from testing, because she hated wearing the head phones. She would say no and cross her little arms. They wanted to sedate because they felt that would be the best way to get more accurate results. I said no. I feel that the risk of sedation out way the benefits. The speech therapist and I felt that Tatiana is saying at least 40 words or more. So she is close to talking. The therapist said that Tatiana can’t hear soft sounds and so it makes it hard for her to pronounce words correctly. I am trying to get her an ENT appointment soon so that they can check her tubes and re-test her again that same day. Hopefully then we could get a better idea what her hearing loss is. I do feel that she has a mild hearing loss. So she will be getting hearing aids no matter what. I also have notice that her hips seem to hurt. The orthopedic Dr. wanted to go as long as possible before he would do any surgery to correct it, but I think I need to go in and see him as well. The orthopedic Doctor is from Minnesota and has had a lot of experienced with Hurler Kids. Tatiana was tested last week to check what her enzyme levels are. Her enzymes were normal when she had stopped ERT. So now that it has been about 3 months they wanted to retest her to see if they dropped and how much? This will determine when she will start up again on Enzyme Replace Treatments. In spite of her many challenges, I feel that Tatiana has been doing really good. Her breathing is pretty normal, which is the biggest thing I worry about. We have planned a trip to California in June. This our yearly trip home. We are excited to see our friends and family. I only wish we could visit for longer than a week. I pray for all of you that are going through transplant still that god may protect you and give you strength. As always wishing everyone great health and happiness.

Maria & Family

Wednesday, March 16, 2005 1:15 AM CST

Hi All,

Sorry I haven't written. I have been working a lot lately, so I haven't had a chance to get online.

Tatiana's party was a lot of fun. We had her party at Jungle Jim's. It's an indoor ride/arcade for kids. She was enjoying the play land as long as we didn’t leave our sight. My oldest son Alex tried taking her to the rides and she would just cry. I guess she just loves us to much. She was only happy with her daddy. Her theme was butterflies and fairies. It was really cute.

Health wise she has been doing really well. Her last day in bone Marrow was last week. She will be able to get vaccinations in May. She had a hearing test on Monday of this weak. The test came back that she has mild hearing loss and she should have a hearing aid. I still need to have another sleep study done soon as well.

As far as ERT (Enzyme replacement treatment), I haven't heard back from the doctors. I was suppose to hear back by Feb 28th and haven't. I did call the genetics department and left a message I am just waiting to hear back from them.

I will check on everyone since I have a little time right now. Hope everyone had a great Valentine's Day and a fun St. Patrick’s' day.

Peace & Love,

Maria & Family

Wednesday, January 19, 2005 2:19 AM CST

Hi all,

Hope everyone is doing well, as for Tatiana she is doing good. We met with Dr. V from genetics regarding all the questions that I had. He did have some answers however there were some questions that still needed to be addressed. He said he was going to follow up with some other doctors that are currently doing the same thing we were with Tatiana, which is giving her both CBT (cord blood transplant) and ERT (Enyzme replacement therapy). I know that the reason we decided to do both was because she should a high level of urinary gags. Her enyzme levels were low, which is common after transplant. Most kids have low enyzmes. That is why they continue to progress at least for the first year after transplant and then start getting better. Like Dr. Muenzer mentioned at the conference. The other reason was that Hurler/shie and shie have some enyzme activity, but it is really low. That is why they are recieving ERT. They have been known to develop antibodies as well agnaist there existing enyzmes. As they continue treatment, Drs' tend to see the antibody slowy disappear. I feel and the Genetics Dr feels as well that if we give ERT to Hurler/ shie and shie even though they have some activity, why wouldn't a Hurler's patient benefit from it as well. I have not heard of any cases where the CBT has been done and the patient has had normal enyzme activity. By the way, I don't think that they know how much enyzme a normal person needs. Below are 2 of the questions that was asked.

1. Our patient's mother (Mrs. Tuckett) mentioned that you suggested a RFLP test to be performed on her daughter. What would this test show? Is it to detect chimerism in more detail. Her last chimerism test (performed 2 weeks ago) showed 85% donor cells (similar to the
previous test done several months ago). Is the RFLP test something that we should be doing? or is that the test that they already performed to detect chimerism?

I don't have a good feel for the medical course of this kid. Was she ever 100% donor? If yes, then she could potentially loose this graft and should be followed with chimerism every 2 months or so. On the other hand, if she's been stable at 85% for over a year, I would check every 4 months. All of the kids we've transplanted maintain 100% donor chimerism. Thus I'm concerned because this patient's chimerism is not 100% If you can check, lymphoid/myeloid and total cells, you can make predictions about the likelihood that she could loose her graft. If
the lymphoid fraction is <50%, graft rejection is likely. If this were the case, I would restart immunosuppressive therapy with either FK or CYA.

2. While the fear of graft failure is ever present, do you happen to know of situations where this has occurred (not necessarily for MPS1, but for any other conditons)? Would you happen to have those references available where I could access abstracts/articles?

I only know of early graft rejections in patient treated with myeloablative therapy for UCBT. Early means in the first 3 months or so. Late graft rejections have only been reported in patients receiving "mini" transplants or t-cell depleted transplants.

Tatiana also saw Dr. Olgivie for orthopedic. He told us her spine has a 50 degree curve and her hips sockets are out. Hip displasa. He mentioned that because she is so little, he wanted to wait at least a year of so before surgery. When they are little, MPS kids tend to have soft bones ( I think its because of the steroids that they get from transplant). If the curve on her back gets worse then they will consider surgery. I just hope she improves instead of getting worse.

I am planning her Birthday party. I am having fun planning it. I will write soon. I know I promised pictures, but I don't have a scanner and I suck at inputting them, but I will try.

God Bless,

Maria & Tatiana

Wednesday, January 5, 2005 2:29 AM CST

Hi Everyone,

Hope everyone has had a great Christmas. We had a good one. Tatiana loved opening the presents more than the actual present Graden her 4 yr old brother was so surprised that Santa left him a note and ate his cookies. Soo cute.

The conference was great. I learned a lot. The doctor from Duke was the one that I was most concerned about. She spoke at the conference and said that she did not recommend anyone that has had a Cord or Bone Marrow transplant to get ERT. She said that there could be a possibility to develop an antibody against her Cord blood enzyme and cause her to lose her engraftment. Of course I freaked out and asked her based on what facts did she say that at the conference? She had none kids with Hurlers, but she said that have seen it on other kids with similar transplants that receive infusions. I asked her if there were any tests to take to see if she was losing her engraftment. She mentioned RFLP test. I called my BMT Doctor as soon as I came home and he didn't seem very concerned he said that the information that Dr. Kurtsberg had was all theory and nothing was based on facts. Nonetheless I requested testing and stopped infusion.

I have heard back now from Genetics and BMT. First of all I should write that Tatiana had developed an anti body and so was really worried that she could be losing her engraftment. The BMT Drs' checked chemerism and make sure her engraftment the same. It was. I did hear back from Genetics because they had done a test to check her urinary gags. The less gags the better. The test came back that when she was getting ERT she had no gags. It was as if she was normal. I knew it. I could tell how well she was doing and those that met her at the conference could attest to that. I still want to have the RFLP test done. If it helps to know more concretely what her graft is doing that I will feel a little safer to start her on ERT. Also Genetics had informed that some of the Hurler Schie patients had also developed antibodies. It was just a matter of time before there bodies got use to the treatment. After a few months they no longer saw the anti-body.

I am so scared and torn. I certainly feel that she benefited from ERT, but I don't want to lose her Like Tasha. I am not that prepared to have that happen any time soon. I guess none of us are.

Back to the conference I felt really good that I would see my daughter grow up and quite possibly have a normal life. We met a teenage girl that was going to high school and was driving. She had some limitations, but for the most part she was your typical teenager. Also it is always nice to see Eddie he is 18 years old and seems to be doing good as well. Of course we all know that they will have numerous surgeries. But at least they will have a better quality of life.

I hope everyone had a good time and sorry that I did not write sooner. I was very worried about Tatiana and I did not want to write anything negative. I will let everyone know if we decide to ERT again. I hope that we can. I could even see a difference in this last month that she hasn't received it. She is not as active and she seems to be less motivated to get around. As always, wishing everyone the very best.

Love Maria & Family

Friday, December 10, 2004 11:41 PM CST

Today my little family and I are packing to leave to Orlando for the MPS conference. We are leaving Saturday morning. We were lucky enough to have a friend that has a condo and so we are leaving early to go sightseeing. The kids and I have never been to Florida, so I'm excited to see them enjoy it all. I was a little worried that we wouldn't make at all. Tatiana has been having stomach problems for well over 6 weeks now. She had C-Dif so they gave her Flagyl and then gave her vancomyicin because the infection seems to still be in her system. She started to cramp 2 days after she was off the vancomycin and cried as if she was in pain. I thought for sure she started getting GVH again. Her stool has been green and runny. The Doctors still feel that it's an infection and decided to put her on Vancomycin & gentamicin orally for 30 days. The medications seem to be helping. She hasn't been stooling as much. She is also more active and seems to be feeling better. I am still concerned of possible infections on the flight, but I guess she has been off steroids and has for the most part been healthy. I need to relax. I hope to see some of you there.

The genetics Dr took blood samples and urine samples to see if her gags had improved with the enzyme replacement therapy that she has been receiving. The less gags would indicate that it's working. I have no doubt that it will reflect a difference. She has been poked less because they have been putting hot packs on her hands and feet prior to finding a vein. She seems to be getting use to it. She doesn't cry as much and she even helps out.

I know that the holiday season is really difficult for some of us. Try to stay strong and focus on the wonderful things you still have in your life. As I will try myself. I pray that everyone is doing well and that you'll have a prosperous New Year.

Peace & Love,

Maria & Family

Saturday, November 13, 2004 2:14 AM CST

Hi All,

Tatiana for the most has been improving so much I just can't believe it.

She did have an allergic reaction to the ERT last week. They stopped and started back up slow and then they increased it again. When they increased it she broke out in hives everywhere. So they stopped it again and went slower. I don't think that they know why this is happening. So this week when she got started they went really slow. She didn't break out in hives this time. They did draw blood to test it and make sure she isn't developing antibodies against the treatment.

Her stooling had increased and it was runny. She had been having loose stools for almost 2 weeks before they took the test. They told me she had Cdif and started her on this nasty medication Flaygl that makes her throw up. We finally got her to take it with chocolate (nutritional powder). She takes a while to drink it put she eventually does. She still is stooling and on Wednesday night she gave us a little bit of a scare. She started really bad from 3pm till 10pm at night and her dad was freaking out because he couldn't change her fast enough. I got worried so I just took her in. They drew more labs to check for other bugs. They also drew blood and gave her some fluids just in case. I haven't heard back so I am hoping that
she is OK. She did get of all BMT meds. So I am hoping that she does get GVH again.

Well all things are pending. So I am hoping that none of them are anything serious. Hope everyone is doing well.

Maria, Tatiana, & fam

Wednesday, November 3, 2004 9:06 PM CST

Hi All,

Just wanted to let everyone know that Tatiana is finally walking!!! We are so excited. She is doing really good. She still has to stand up by pulling herself up on the furniture. She has grown too. I am so happy for her.

She finally got her glasses, but I can't get her to wear them. I tried to put them on while she is asleep but she can still feel them on so she takes them right off. Any suggestions? I really need to include pictures in here so everyone can see how cute she is.

She is still getting ERT. Last week was hard because she was poked twice before they could find a vein and the week prior she was poked 3 times. She cried so much last week that she almost made herself throw up. It is getting really hard to see her get poked so much. That is still hard for me to see her have to have any pain. I can't wait until we can do a port.

I will try and update pictures this week. Thank you for checking her updates and feel free to leave a note.

Sincerely,

Tatiana & family

Monday, October 4, 2004 10:51 PM CDT

Hi All,

I thought I would add a quick little note. Tatiana got her cast off. Her little arm healed fine. Her treatments are every Thursday now because of my schedule changing at work. She really hates getting poked, but the Drs' and I both feel that rather than be sorry and put a port in now we should wait. She is still on Neoral. Very little of it, but none the less she is on it. She is getting tapered and has been doing well. She looks really good. She sits and plays on her knees. She can squat on her knees. She can also reach for things that are on her dresser. She gets around the house fine and uses her walker every chance she gets. I know that all of this sounds like something all kids can do, but Natasha my first daughter with hurlers couldn't do it. I am so excited for her to be able to play and run. The Doctors that knew Natasha and know Tatiana always tell me that if they didn't know she had hurlers they would think she was a normal child. I only wish that I could have done this for Natasha.

She has a bit of sleep apnea and is on a C-pap at night. Dr Hoffman had told me before that she was near sighted and that her tear ducts are clogged. He gave her a prescription for glasses and said that when her port goes in to let him so that he can schedule to fix her tear ducts then as well. I need to go to the Moran center in order to get her glasses, but I work 10 hr days and have very little time to get there. I will for sure do it on this Thursday. She will look so cute with glasses. I think that as long as I wear my glasses she will be more comfortable wearing hers. I hope.

The only thing bad thing that I have noticed is that she has become irritable. She hits her brother and yells at him. Sometimes it's cute and I have to stop myself from laughing. I know I have created a little monster, but it's so nice to see her defend herself. I have been trying to add pictures, but every chance I get to update her journal is when I am at work. I will do this soon. We took her to a studio and had some summer shots taken with her and her little brother Graden.

Hope everyone is doing well. Please pray for everyone in Florida that they may be save and recover quickly from all the damage that they faced.

Best wishes to all,

Maria & Family

Thursday, September 16, 2004 0:06 AM CDT

Hi All,

Tatiana did get her first scheduled ERT (Enzyme Replacement treatments) Friday Sept 3rd. She did really well. She was a little upset because they poked her twice. She did not seem to have any reactions to the infusion which is really great. Her blood pressure did drop a little bit, but nothing to be concerned about it. She had a sleep study that day as well. So we had a long day Friday. The following week that we did the infusion it seemed less stressful. We seem to have breezed through it. The process started late because the infusion wasn't ready to be given. I can't wait for the Port to be put in. Right now we are holding off because of all the infections she got in her central lines and per pic lines. She still is immuno compromised. I want to wait until she is off all the medications and her immune system is back to normal.

Tatiana started the week off a little bit rough. That Monday she had fallen down the stairs and would not stop crying. I took her to the ER and they took x-rays. Sure enough she had a buckle fracture. Nana got a temporary cast and we took her in on Wednesday to get a more permanent cast put on. I called her BMT Doctors and they told me that it wasn't uncommon for post BMT patients to have fractures easily. Your bones tend to get brittle due to all the steroids they are on. That is why they try to get the patients off steroids as soon as possible.

My experience has been positive. She seems to breathe better. Sometimes I can't even hear her. Before I hated the way she breathed it was fast and noisy. She still sometimes breathes fast but not every night. She is also much quieter while sleeping. She has tolerated being on her knees more and is crawling instead of scooting on her butt. She seems to be able to have better range in motion. I.E., she can fully extend her arms over her head. Stamina is better. She used to take some cat naps here and there. Now I get tired before she does.

The only thing I have noticed is that she has been incredibly moody. But it could be her teeth or just her age. Not sure what it could be. Right now we are just hoping she grows out of it.

I honestly don't know if it’s the ERT that is making the difference or her just coming off the steroids. She's still on a taper. I am sure it will be sometime before we will know which it is the steroid taper or ERT. For now I am just glad that we are doing ERT. As much as I hate to get her poked just thinking that it will help her makes me feel like it’s so worth it.

Please pray for all the people that have been impacted due to the storms and hurricanes. Hopefully soon it will stop. God bless and well wishes for all,

Maria, Nana & the rest of us

Thursday, August 26, 2004 6:16 PM CDT

Hi All,

I am excited to report that Tatiana will be starting ERT (Enzyme Replacement Therapy) on Friday, September 3rd up at Primary's Children’s Hospital. I am a little nervous that it won't make much of a difference. Nonetheless I have to try. She also has a sleep study scheduled that night. I wonder if I should cancel the sleep study.

Tatiana has been doing well. She has a little bit of a cold, but for most of the summer she has been pretty healthy. She still is continuing her taper (neoral). She stands and wants to walk around the furniture and loves to do somersaults. I get afraid when she climbs down the stairs still. She hasn't quite mastered that yet. Her therapists are excited and feel that any day she will take off on her own.

I will write after her infusion and let everyone know how she does. I am so glad to hear from so many of you. It is always nice to know that you are not alone. Keeping all of you in my prayers and wishing everyone the best.

Sincerely,

Maria & Family

Thursday, August 5, 2004 11:30 PM CDT

Hi Everyone,

Just a little update on my Tatiana. She is still doing really well. Lately she has been coughing here in there. It does seem to go away when I have a humidifier on in her room at night. She is scooting everywhere and every so often she will crawl. Her little muscles are still pretty weak. I can tell how excited she gets when she sees her brother running. She giggles and tries to scoot faster.

I did have a genetics appointment, he examined her and asked me how committed I was to have her do enzyme replacement treatments. I had asked if the enzyme levels that she had were on the lower end of what most kids get after transplant. She said that there was no documentation that had that information. I asked the Dr, how can you say that it won't benefit her without anyone trying? He agreed. He then asked me how long I was willing to try and see if it made a difference. I told him that at least 2 years. I don't think a few months would show anything, but I do think that perhaps 2 yrs would give enough information to see if it made any difference at all. I am waiting to hear back from the Dr to see when she will begin.

She had an ENT appointment this week. Dr Muntz sent me to get a hearing test done on her. We did. It came back inconclusive. He said he would like to repeat in about 3 months and also wanted me to schedule a sleep study as well. These are the things that are in the works for her.

Oh she is learning how to sign. She knows how to say please and more. I am sooo excited. She also has started waiving by and hi.

Hope everyone is doing great and for those new friends we have made thank you for checking in on us. We love to meet new people and appreciate all the prayers and well wishes.

Maria, Tatiana & Family

Thursday, July 22, 2004 7:37 PM CDT

Hi All,

I guess no news for a while can be good news. Tatiana has been doing very well. She has sustained her red cells and has not needed anything other than Zantac, Neoral and vitamins. She does have a little bit of a cold right now but nothing major right now. She had a sedated eco done a week ago and she did really well. She came out of it with no problems. I haven't heard from the Dr. yet as to what he saw. She also has an appointment on Tuesday for genetics and neuro physic evaluation. I am sure she will do fair, not great but fair. As far as genetics go, I'm not sure what they will say. From what I understand they keep changing there minds because there isn't enough information available whether or not she will benefit from it. My insurance does cover it, so as far as I'm concerned if she is making less enyzmes than most kids right out of transplant than it can't hurt to try and see if it will help or not.

On a lighter note Tatiana got her first hair cut. Graden, her little brother no longer looks like a girl. His hair was all cut off. I will update pictures soon. I am just not that savvy with altering photos and inserting in the webpage.

Hope all of you are doing well for those of you just starting tranplant, know that we wish you the very best and you are in our prayers.

Maria, Tatiana & the rest of the family

Wednesday, June 30, 2004 11:36 PM CDT

Hi everyone,

Just thought that everyone would be happy to hear that Tatiana got her Pic line pulled out. Yeah!!!!. She is now officially better. She is on very little medications mainly vitamin supplements and her neoral. The neoral is being tapered slowly but surely. She should be done by the end of Novemeber. I know it seems long but thankfully she won't get anymore infections. Most of her infections were in her lines. The only worry is, what are they going to use when she starts ERT. Not sure how she is going to get that. She was getting Procrit for her red cells and she is off right now. I found out from the Drs' that she has 2 antibodies against red cells (not good). So they are going to see what her little body does in the next 2 weeks if she starts to drop then she will be getting shots for a while. They informed me that the shots will be like insulin shots and those aren't too painful(so I am told). She has also been seen by all specialist, except for a heart Doc. That I hope will be soon. She is still recovering from her surgery and she snores quite a bit. Hopefully that will heal as well. We still have to see if she breathes better once she heals.

I have to update her pictures. She looks so grown up. She scoots everywhere in order to get around. Boy is she fiesty too.

Wishing everyone the best. Please know that I hold all of you in my prayers. XOXOXO

Maria, Tatiana, & family

Wednesday, June 23, 2004 8:47 PM CDT

Hi All,

Well Tatiana is still recovering from her surgery. She has had hard time breathing at night because of the swollen tissue. She had a lot of mucus drainage right after her surgery and so I suctioned her almost every 2 hours in efforts to help her breathe better. Within the last couple of 2 days she seems to be improving. Still waiting to hear from genetics as to when Tatiana will start ERT.

Tatiana had an appointment at Shriner’s hospital on Monday for her overall skeletal exam. The Dr that examined her is from Minnesota and has many years experience with Hurlers Kids. I was so happy to know this; because we were preparing to go to Minnesota and have an experienced Dr look at her for repairs on her little bone structure. The Dr. said that she didn't look too bad and felt that no repairs would be needed for a while. I have an appointment in 6 months. He did mention that back surgery is usually not done until there about 5 years old.

Anyone going the MPS Conference held at Disneyworld in December? We are planning on attending and was wondering who else is as well? Please pray for all of our special little children.

Best wishes to all,

Maria, Tatiana and the rest of the Family

Saturday, June 19, 2004 0:20 AM CDT

Hi All,

Tatiana and the family went to California and it was a little scary at first because she developed a fever and caught a cold when we stopped in Las Vegas. We stayed there a couple of days visiting with my cousins and then drove to Cali. She did seem overwelmed being in a new environment, but she quickly adjusted which is great. Her cold only last 3 days but it was scary enough that I decided not to take her out too much. My sister Letty was kind enough to let us stay in her home. It was nice to visit with Grandma, Grandpa and all her aunts. We did take Graden to Disneyland on a Friday and Tatiana stayed with my sister Letty. I think Graden was overwelmed because he didn't act like his hyper self that day. We had a great time. I only wished we could have stayed longer. There were alot of other people that I didn't get a chance to see. Hope you how know much I miss all of you.

Tatiana did go into surgery this Thursday and had her tonsils and adenoids removed and had a new set of ear tubes put in. Her hearing test and her eyes were checked too. Surgery went O.K. we were admitted overnight in the BMT area because she threw up and would not hold fluids down. We did get release the very next day and she seems to be recovering quite well. Her pain seems manageable now and she wants to play and scoot on her bum everywhere. She did have mild hearing loss, which is much better than before. The last test she had she had severe hearing loss. I was told that she's near sighted and might need glasses. Can't wait to see if ERT helps.

Best Wishes,

Maria & family

Monday, May 24, 2004 6:01 PM CDT

Hi All,

Well we were in for what I thought would be a short stay lasted a week. Tatiana got released on Friday afternoon. She had a Gram - infection again and was on 2 antibiotics. Her pic line came out and so we had to wait until she got a new put in. She went home with a bit of runny stools, but otherwise she was great. She was happy to be home.

I talked to someone from Genzyme regarding her enzyme replacement. It looks like she will be receiving it and our insurance will cover it. I am so glad. We are really looking forward to see if this helps in any way. She will also be getting her tonsils removed and adenoids in hopes that it will help her breathing. I have noticed that since she has been on antibiotics her breathing has been more normal. You have no idea what a relieve this is.

We are looking forward to visiting my family in California and flying there with JETBLUE Airways (Hopefully). Which is who I work for? Graden really wants to go to Disneyland. He is always asking if we are leaving today. So I turn around and ask him, (Graden when did I say we were going?) He responds, (In June). He wants to go to Sea world and San Diego ZOO. I just pray that Tatiana will be healthy enough to go.

Saturday, May 15, 2004 1:22 PM CDT

Hi all,

I am writing because today was the day of Natasha's passing 3 years ago and its a strange feeling type day. Emotional to say the least. Natasha is my first little one who underwent transplant for Hurlers syndrome and passed away.

Tatiana developed a low grade fever and was admitted last night. The good news is that the Dr's said we caught it early and she should be going home tomorrow. She didn't sleep most of the night so the nurse informed she was sleeping most of the morning away. That's a good thing because I had to come to work this morning.

Please remember all those that have little angels and keep them all in your prayers.

Friday, May 14, 2004 0:46 AM CDT

Hi Friends & Family,

Hope all had a Great Mother's day. We are doing well Tatiana has managed to remain at home. She has been really playful now that she seems to have more energy do to the epogen shots she is getting to build up her red cells. She wants to try and walk and she stands any chance she gets. She likes to scoot on her bum and reach for things. Her knees seem to hurt and she will not stay on them for very long. I think she will walk and skip the crawling stage. My son Graden loves to play with her and just make her laugh. I really enjoy seeing them interact together. My oldest son likes to read to her and make her use her muscles. I am blessed to have such good loving boys.

We were in the emergency room on Mother's day because she was breathing so fast and her little heart was beating so fast. She did not have a fever so I couldn't figure out what was happening. She has had some respitory problems and most likely will have her tonsils and adenoids removed soon from the ENT Drs'. I have made an appointment at Shriner’s hospital in Utah to have her seen for her legs. The Pulmonary Doctor decided to put her on a Cpap and we are waiting to hear from Genetics to see if they will let her try ERT. I have made an appointment at Shriner’s hospital in Utah to have her seen for her legs. I hope they do. It is really strange, I thought that the Bone Marrow was so suppose stop the progression and I don't feel that it completely does it seems to slow it down perhaps. I am still hopeful that she will eventually be able to just run and play with the other little ones her age. The BMT seems to work differently for every child.

Lisa Post, I see your name on a lot of our baby’s websites. Thank you for your support and love.

Sincerely,

Maria, Tatiana, & Family

Wednesday, April 28, 2004 7:29 PM CDT

Hi All,

Hope this new note finds everyone well. Tatiana had a low red cell count that dropped as low as 18. They didn't want to transfuse because of the antibody that her body created that attacks foriegn red cells. I was really scared to see her so weak. They finally gave her blood and added epogen (procrit) a drug that helps your body produce red cells(don't know why they didn't do this sooner). Right now her red cell count is 27 and she is so happy and playful and not that little fragile baby at all. She has wanted to use her legs more. Her Physical Therapist and her Speech therapist were really impressed with how much she wanted to interact and how she has improved. I feel positive with all the changes. She did have a slight fever last week but nothing grew out. Thank goodness. We are hoping to taper her of the anti rejection drug and have her free on medications no later than November. I am really looking forward to that day. I just wish it would end sooner. This is Small update. I will update with any changes as they occur. Thank you all for your continued support and prayers

Maria, Tatiana & Family

Wednesday, April 14, 2004 7:14 PM CDT

Hello All,

Hope all of you had a great Easter break. We had a semi good time. My sister Letty's kids and one other niece flew to Salt lake city. My sister drove down for the weekend from California That Friday night that my sister got in, we had to drive Tatiana to the hospital because she got a Gram infection. We also found out that her body developed an antibody against blood transfusions. Go Figure. Her red cell count was down from 23 to 18. I believe normal is 30 to 40. She looked like a rag doll today when I left to come to work. They were really worried about her because she react and also her body could eat up the new red cells. They transfused her and went from 18 to 26. So far she is holding on to them and she was happy and smiling again. I was soooo worried. I guess I still am. I hate all this. Did any of you parents that went through transplant have to deal with this? If so can you share please? Please tell that things will resolve. I think I am getting a little discourage with all that she is going through and not knowing what will happen next. I am however really relieved that her red cells did go up. She will get checked again tomorrow to see what her little body will do. Please keep her in your prayers and please ask god to give strength to continue. Thank again and wishing everyone health and happiness.

Sincerely,

Maria, Tatiana & Family

Wednesday, March 31, 2004 1:36 PM CST

Hi All,

Like Jody said never a dull moment. Well she got a gram- infection and then she got c-dif. I am sure I didn't spell that right. After that she got GVH again. Not sure when things will start feeling normal again, but I can't wait. Her platelets dropped down to 15 and so they started her back up on full strength anti rejection medicine. Her platelets did pick and today they at 48. The Dr said that hopefully in a month they will try to taper her again. They feel that as long as she stays healthy they should be able to get her off everything. That's if the GVH isn't chronic and there is no way of telling until they try tapering off again. She is getting bigger, but is really thin. Hopefully she will start to eat more and gain some weight. We have been back and forth for a month now with everything that has been happening to her. We are all looking forward to visiting with my family in June in California. Hopefully the Drs' won't have a problem with it. She also has been having alot of test done to get her started on ERT treatments soon. She will be one of the first kids that has had a BMT(Bone Marrow Transplant) and ERT (enyzme replacement therapy). I pray that she will have a good qaulity of life with all that she has to endure. As always she is a happy baby and loves life. Hope everyone has a great Easter Holiday.

Sincerely,

Maria & Family

Thursday, March 18, 2004 5:45 PM CST

Hi All,

I know its been awhile sorry. Tatiana had a great birthday and she actually had some of the forsting of her cake. We went home from the last infection and the doctor told us if the same infection comes back, her line would be pulled. She did get sick again with the same gram- infection grew back. Her central line was pulled and had a pic line put in her arm instead. She doesn't seem to like it very much. But she is adjusting. She is in the hospital right, but should be released tomorrow. (I Hope). She is soo cute. Loves to talk (chatter) and she has these stern expressions when she's interacting with her little brother. Oh remember the bump on her head. It's almost gone. Hey!!. The Neoral (steroid) is being tapered and she she's eating more. Hopefully soon we will feel safe. We are planning a trip to California to visit my family in June and we are hoping that she will be off ivy feeds by then. Graden has been asking to go to Disneyland. I will put new pictures up soon.

This last month has been hard. There has been 4 kids who passed away post BMT. Please pray for the families in hopes that they can find comfort that they will suffer no more.

Thank you all for all you support and love towards Tatiana it really is nice to know that people care.

Sincerely,

Tatiana, Mom and the rest of the family

Wednesday, February 11, 2004 9:57 PM CST

Hi All,

I haven't wrote in a while. Tatiana had a little accident about 3 weeks ago and gave us a bit of a scare. She fell backwards and bumped her head pretty good. I took her into the ER, they checked her and said she looked fine and send us home. The very next day the bump was twice the size and it was like fluid in her head. Really strange feeling. I kept calling the Doctors and they would just tell us to watch her behavior and make sure she was responsive. Well she didn't want to play and looked droopy. Not herself at all. The Doctors kept telling us she probably has a headache give her tylenol as needed. I did and she still didn't look great. Joe and I got really worried and so we brought her in and asked for her to get a CT scan. We got one that was inconclusive and we waited a little bit longer. They were not sure if it was spinal fluid or blood. She was getting worse throwing up and just wanted to sleep. We took her into to ER because BMT did not want her to go up there unless she had a fever. I took her to Er and was there all night, they did a CT scan. That very night she spiked a fever and they admitted her in clinic after all. The Dr thought I was lying because she asked what do you want us to do admit her or wait till the morining and bring her in? I was so mad that we were send to ER. I told the Doctors that if anything happened to my little one, they were going to be liable. They send to ER with a bunch of sick kids with RSV, colds, etc. Well she had a infection(Gram-) brewing. While we were in the hospital they scheduled an MRI to see where she was leaking fluid from? That went really bad as well she almost wind up in the intensive care unit because she was breathing so fast and we couldn't calm her down. The drug that they gave her to sedate her for the MRI only worked for 20 minutes and it was supposed to have lasted 2 hrs. This drug makes you incredibly moody when you woke up from it. We got over all that and now she is home with round the clock ivy medications. She still has the bump that was at first the size of my hand on the top of her head. I do feel that the bump is getting a bit smaller. Thank goodness. She is turning 1 hey!!!! Her birthday is February 19th. The longer we have her the more confident we feel that things will work out. She is applying for ERT (Enzyme replacement Treatments) because she does have extensive damage. Just a small update. Wishing everyone the best and thank you for checking in on us.

Maria & family

Monday, January 19, 2004 5:36 PM CST

Hi all,

Tatiana is still home. Hey. She is such a happy baby. Loves to play and interact with us any chance she gets. I have been slowly taking her out. Just to places that doesn't have alot of people around. She does seem to get overwelmed if she's in a different invironment other than her home for too long. She tends to start throwing up and gets really fuzzy. So we don't usually stay long in one place.

Her throwing up and Diarrhera still continues off and on. The Dr's have stopped her taper on the steroids. Just until they figure out what it is. They check everytime she starts up for infections and everything has come back negative, which is good. So they aren't sure if its GVH. The Dr's did say that her body is not absorbing the steroids, so they keep increasing the dose. I don't know if it helped, but it seems like her throwing up has gotten better.

Just a little brief update. We will write soon if anything changes. Today she is 11 months old.

Maria

Wednesday, January 7, 2004 11:42 PM CST

Hi All,

Well not alot of news is good news. Tatiana has been doing good. I still can't get her to eat much. Every time that I try and increase her feeds she starts throwing up. I think the mobilty in her belly is really slow and needs a little more time to heal. She is still getting tapered of the steroids and thus far we haven't seen the GVH(Graft VS Host Disease) come back. Which is what you worry about when you are tapering the steroids. Knock on wood. The only thing she has going right now is that she continues to tug on her ears. This morning she had dry blood from her right ear and was throwing up more than normal. I did call the Docs and we are going in tomorrow morning to make everything is O.K.

We had a little boy visit us around New Years who is post transplant about 2 1/2 years. He came to Utah for his yearly checkup. He looks great. The Dr's are going to check to see if he would benefit from Enzyme Replacement Therapy. Tatiana is having her check up done around late January, early February. I think she will need ERT just until her enzyme has come in and shows to be normal. So maybe both kids can get ERT together.

I will write more soon. Hope everyone had a great Holiday season. For those of us that had a missing member in your family this year, I pray that with time the memory of our loved won't be so painful.

Love everyone,

Maria & Family

Sunday, December 21, 2003 8:33 PM CST

Hi All,

I hope that everyone is having a great holiday season. Planning all those parties and making sure all the presents are bought. And of course remembering the real reason why we celebrate Christmas in the first place.

Tatiana is still home. We feel so blessed thus far because hasn't catched any bugs. We don't take her out very much and certainly not to anyone's home for this reason. she did develop a yeast infection in her ears and so we took her to the doctor to get that checked out and they increased her dose of caspofungin. She still tugs on her right ear, but doesn't have anymore puss oozing out. The BMT Doctors did say that they wanted her to be seen by an ENT soon. She wasn't eating much, so the doctors decreased her tpn and lipids(Ivy feeds. They did this so her appetite would increase. It's working, except that she hates to eat and makes herself throw up when she is drinking out of a bottle, but when I put the milk in her NG tube, she doesn't really seem bothered by it. Her Oralpred (steriod) is getting tapered and should be complete by 1/16/04. Her next appt is Tuesday, I feel that I can wait till then to ask about the yeast infection(Thrush). I will update if anything changes. Please pray for everything to keep going well and for all the other little children going through similiar situations.

There is a special little girl that had a transplant in April and her cancer came back. She has ALL a form of luekemia. Please pray that her mom can a make a decision whether to continue with chemo or notnad have peace about it.

Wishing everyone a great Christmas!!!

The Tucketts (Joe, Maria, Alex, Graden, Tatiana, & Natasha (in memory)

Sunday, December 7, 2003 9:53 PM CST

Dear Friends and Family,

I just wanted to tell everyone that she came home!!! It is always so hard when they come home at least it is for Tatiana. She is so sick and was throwing up all day the first day and that Saturday as well. So much so that she turned blue and I called 911. Well by the time they showed up, she got her color back and was playful again. We went up to Primary's Children's Hospital anyways to make sure she was fine. Her lungs looked better and she seems o.k. The Docs just think she is overwelmed with the all the changes there is at home. Grandma came to visit and she has been a great help. I always hate when she goes. Tatiana or Tati as the nurses so tenderly call her, for the most part it's an adjustment and she is becoming more playful everyday. She tries to sit up longer and is putting more weight on her little legs. She is still pretty weak. The Oralpred that she is on is getiing tapered and she should be done with it by Jan 16th. So no more fat checks. We are not letting her come out unless we absolutely have to. The flu has been terrible this year and I am so afraid for her to catch that or RSV. She did come home with more antibotics, but less blood pressure medications which to me is really great. She will be off the antibotics by the end of December. I am feeling really good about all this and it seems that things will get better. It will just be a slow and hard road. Thanks all.

Sincerely,

Tatiana, Maria, & Family

Sunday, December 7, 2003 10:40 PM CST

Sunday, December 7, 2003 9:53 PM CST

Dear Friends and Family,

I just wanted to tell everyone that she came home!!! It is always so hard when they come home at least it is for Tatiana. She is so sick and was throwing up all day the first day and that Saturday as well. So much so that she turned blue and I called 911. Well by the time they showed up, she got her color back and was playful again. We went up to Primary's Children's Hospital anyways to make sure she was fine. Her lungs looked better and she seems o.k. The Docs just think she is overwelmed with the all the changes there is at home. Grandma came to visit and she has been a great help. I always hate when she goes. Tatiana or Tati nurse so tenderly call her, for the most is adjusting and is becoming more playful everyday. She tries to sit up longer and is putting more weight on her little legs. She is still pretty weak. The Oralpred that she is on is getiing tapered and she should be done with it by Jan 16th. So no more fat checks. We are not letting her come out unless we absolutely have to. The flu has been terrible this year and I am so afraid for her to catch that or RSV. She did come home with more antibotics, but less blood pressure medications which to me is really great. She will be off the antibotics by the end of December. I am feeling really good about all this and it seems that things will get better. It will just be a slow and hard road. Thanks all.

Sincerely,

Tatiana, Maria, & Family

Sunday, November 30, 2003 8:07 PM CST

Hi all,

Hope everyone had a great Thanksgiving holiday. Tatiana and I had a great holiday. We spent it at the hospital playing and we went for a walk outside for a little bit. Her new line was placed and she required a little oxygen and pain meds because she wasn't feeling to hot. The very next day she was alot better. She was happy and playful and was full of life ready to go home and play. She did get to come home friday. Granted of course she has round the clock medications and ivys. She did have a hard night friday. She would not stop throwing up and kept crying unless she had some adivant. That calmed her down and I gave her some all night. She did well in the morning, but that Saturday night she was throwing up again. Only this time she kind of scared me because she turned blue and was blue for a about 2 minutes and I called 911. I was kind of embarrassed because by the time they got there she was much better and she was playing with her toys. I think she just likes to scare me. Keep me on my toes. I did take her in to the hospital to make sure she was OK. Her Xrays actually looked better than the last ones she had. That is sooo great. We took her home and so far so good (knock on wood). This time she is not going anywhere unless we have to. At least not until the oralpred is reduced a bit more and it should be by Christmas!!! She is home now and for the most part is doing good. Thanks to all for all the blessings, love and support.

Love,

Maria, Tatiana, & family

Sunday, November 30, 2003 7:48 PM CST

Hi All,

Hope everyone had a great holiday. Tatiana did really good. The Doctors were really happy with how well she did once her new line was placed. Her respiratory rate and heart rate decreased significiently. She did need a liitle oxygen the first day that the line was place and some numbing meds. She was in bit of pain. But once she settled down she acting like her happy playful self. That biaxin really makes her lose her appetite and she has a hard time tasting things. Well we didn't go home for thanksgiving, but we went home friday yeh!!! We are happy to finally have her home again. This time she isn't going nowhere until the oralpred gets tapered more. That should be by Christmas. I hope. Although she did gives a little bit of a scare on Saturday. She just wouldn't stop throwing up and this time she turned blue for about 2 minutes. I freaked out and dialed 911, by the time they should up she was her happy self again. She is so use this that it doesn't even phase her. I did take her to Primary's Children's hospital and they took xrays and checked her over to make sure that everything looked good. She did and we went home and so far I give her meds to calm her down and she relaxs. She hasn't thrown up and she looks stable. She is getting better, I feel. The Doc said that she is over stimalted and needs to get use to being home. So hopefully it will only be a rocky week. Thanks for all the support and prayers.

Sincerely,

Maria, Tatiana, & Family

Tuesday, November 25, 2003 0:14 AM CST

Dear Friends and Family,

Tatiana is doing so much better. She is like a different baby. She's beginning to interact and be more playful. She got her central line pulled on Thursday. The only bad thing is that her ivys keep going bad (her vein keeps moving out of place) and her little limbs get twice the size. We keep putting hot packs to help the circulation and reduce the swelling. Her new line gets put in tomorrow and hopefully we can go home Wednesday or Friday depending on how well she does with the new line. She also started to take formula again and for the most part she's keeping it down. She just needs to get gas drops prior to feeding. Her little tummy is still tender from the GVH (Graft Host disease). Have a great Thanksgiving Holiday. Please pray that she may come home and spend the holidays with us. As always thanks for all the support and prayers.

Sincerely,

Maria & family

Thursday, November 20, 2003 0:55 AM CST

Hi all,

Well if Tatiana would just stop growing out those bugs we might be able to enjoy her at home. Poor little one just as she gets better something happens and she gets sick. She grew a gram + bug in her line on Saturday and got really sick Sunday. They started her on gentamician and vancomician right away. The gentamician causes hearing loss, but the doctors said it was either this or the infection would just take over. They since have stopped the vanco and are only doing the gentamcian for this particular bug. She is still on Biaxin for the other bug that they thought was a horse bug. So poor little thing has no appetite. I do have to say that she looks alot better than she did on Sunday. Her respitory rate has decreased and she is not throwing up as much. Her heart rate is a little on the high side and I am wondering if the fluid around her heart is causing her to work harder. Her central line is getting pulled tomorrow and will have ivy's through out the weekend. Those look pretty painful because after a while her little hands and feet swell up. We are hoping that they can put the central line in by next week. I don't forsee us being home for Thanksgiving. But one can only hope. I am however grateful that she is hanging in there and that she is so strong. Please keep praying that things turn around for her and that she get a bit of a break soon. Thanks for all the support.

Love,

The Tucketts

Wednesday, November 12, 2003 11:28 PM CST

Hi All,

Good news!!! Tatiana seems to be doing well with the IVIG (Immunio globlin) infusion and is breathing much easier now. She is breathing around 30s or 40s. Much much better than 50 or 60. Her heart has dropped down from its high 140 - 160 to 120 - 130. She has had no fevers and grown nothing out for a couple days now. She still requires a little oxygen, but not much and they are thinking of letting her go home. We had been waiting to hear from the lab regarding the Equi bug she has, but they haven't finished testing it. The Doctors did say today that if she continues to do well, shows that she can keep food down without vomiting, and her respiratory rate stays within normal range she will go home. They have been reducing her steroids and she has not had a GVH (Graft verses Host disease) flare up. That is great too because the less steroids she is on the better her little body can start making her own immune system back up and be able to fight infections on her own. I know I need to put pictures in perhaps tomorrow I can change some. I wanted to take some pictures of her in her new Christmas outfits so you all can see what a happy, loving baby she is. I am hoping my Mom comes down to help out and spend some time with us. It will be nice to have her around. Overall Tatiana is still on 2 antibotics for the equi and the adno virus. The adno virus is really hard to get rid of and will take months. The equi will take months but they can treat that with antibotics. I have to say that Tatiana's Night nurse Ric really makes sure that she is taking care of while I am working.

The Doctors did say to have her brothers and Dad go get Flu shots. I have to schedule the whole family soon. It is a dead virus and we shouldn't get sick with it. I hope. Thanks to all again for all your moral support and love. Keep that positive energy flowing. For the school that is checking in on Tatiana for your project I hope this helps and let me know if you need to know more information. Oh and don't forget to keep all those other little people in your prayers that are going through the same thing we are.

God Bless,

Maria & Family

Monday, November 10, 2003 7:53 PM CST

Hi All,

Hope this new note finds everyone well . We are getting so close to the holidays. Well, Tatiana is still struggling, but is stable. She still requires O2 and throws up. That infection that is in her lungs and in her nose makes it really hard for her to breathe. She was looking great for a while there and then this weekend she seemed to have a little set back. But I am still hopeful that she will come this week perhaps Friday? They are still tapering her steroids which is really great because it allows her little body to make her own antibodies. Her X-rays still show lung damage from the adnoa virus. It also shows that she is moving O2 pretty good and her respiratory has gone down. Sorry this is short, I am always in a hurry. Please pray for all those little ones going thru the same struggles as Tatiana.

God Bless,

Maria, Tatiana & Family

Monday, November 3, 2003 0:15 AM CST

Dear friends and family,

As most of you already know we are still in the hospital. She caught another bug and it has affected her lungs. Her respiratory rate is high about 78 at times. Normal should be in the 30s'. She is on a little O2 to help her. We are hoping that with a strong dose of IVIG that it will clear right up and she will feel better. If not she will need to get a really strong antibotic that has a 70% chance of causing Kidney failure. Pretty scarry stuff. Just when you think that things are getting better. I guess this serves as a reminder that we still need to be way careful with her and not take any chances what so ever. Infectious Control came by to talk to us, because one of the bugs that she fot was a bug that only horses get rhodacuccas equi. So of course they were curious to know where she got it. We tracked back and the only two places we can think of. I had gone to my sister in laws' house and she has horses. Graden had gone out and rode one of the horses. The time was when we walking on Jordan river path behind our house and on way home there is a house that has horses. We told the doctor and we even called the the vet to find out if the horses have ever had it and they of course call if something else. Well they vet said that the horse never have tested positive for equi, but that doesn't mean that they aren't carriers. The bug that is in her lungs is the called the adnol virus. I am sure I have mispelled this. They treated her for this 3 weeks ago and thought it cleared up so they didn't think of checking for it again, but when her lungs started wheezing they checked again. Sure enough she was positive. I am writing this kind of fast so forgive the mispellings. She got the IVIG 2 days ago so we are waiting to make sure it clears up. PLease, please pray that she gets better and that it clears up.

Thank you,

Maria Tuckett & Family

PS. in case anyone want she is in room 3131 her old room at Primary's Childrens' hospital

Sunday, October 26, 2003 2:41 PM CST

Dear friends & family,

Since my last entry we haven't had much progress, we are still in the hospital and waiting for Tatiana to improve. In the process they found another bug and had to start antibotics for that one. She has needed red cells twice since we have been here, but no platelets. The doctors said if she would be able to take a bottleand hold food down, they would allow her to go home. She is still throwing up. I think the doctors' want to wait now and see if it's the antibotics that are making her sick before they scope again to see if she has GVH (Graft verses Host). I am hoping that it isn't GVH. She seems in good spirits and plays alot when she can. She tries to sit up and roll over. The only other concern I have is her heart tends to have a high heart rate (150 - 180). I am hoping she can have a cardio check up soon. Oh they have checked her enyzme levels and the Dr informed me that they are normal findings after transplant, but are not yet normal. Her genetics Dr was going to consult Dr Peters in Minnesota to see if felt that she would benefit from enyzme Replacement Treatment at this point. My only concern would be if there was a way to check different enyzme. Whether it her own that she is making or the one she is recieving. Thank you again for all the calls, good wishes, and prayers. We love you all.

Sincerely,

Tatiana, and Family

Friday, October 17, 2003 9:33 AM CDT

Hi All,

It has been a while since I have written, since then Tatiana has been back in forth into the hospital. She kept getting sick and the first time we came in they didn't find what it was. They said it was viral and that her little body would need to get rid of on her own. The second time we came in They found three different bugs growing. The Doctor said it was a good thing I brought her in when I did because her body was becoming septic (poisioned). I didn't know what that meant right away, but when I found out boy did it scare me, because I thought I brought her in as soon as I saw signs of a fever or vomiting. Now just 2 days after we have been home we are back again she has been throwing up and started to have runny stools that look like GVH (Graft verses Host). It really worries, but I am hopeful that she will recover soon. She has been so strong to endure all this pain and change within her. Inspite of all of this she is still really happy and playful. She is beginning to sit up on her own and she tries to roll over. She is almost there. The strength in her legs is increasing and she tries to stand on them, but of course not for very long. She is quite chunky, mainly from all the steriods she is on.

I will be going back to work on October 31st. In some ways I worry, because she will continue to come back and forth to the hospital for at least the 1st year. I know it will be a challenge. Come on you Moms' that have gone through this, does it get better? and when do you start seeing a change that you can relax and say she is finally save?

Thank you again for keeping in touch and for checking in on us. Please keep praying that she will get better and that perhaps things will be easier for her. I would love to see her by Easter playing and walking.

God Bless,

Maria & Family

Sunday, October 5, 2003 11:14 PM CDT

Hi all,

Well Tatiana has been home for almost 3 weeks and it hasn't gone as smooth as I thought it would be to have her home. The first four days she cried so much I wanted to take her back. I thought something must be wrong with her if I have to constantly be medicating her. She finally calmed down and seems alot more pleasant at home. She's beginning to interact more. She still only wants me so it takes a while to leave her with Joe or Alex. I am overly tired. She sleeps 2 to 3 hours at a time during the night. Just like a new born.

Perhaps the hardest thing for me was all the medications that she needed to take at home. She is still on IV feeds and requires over 6 different medications throughout the day. I am sure this is no different than most of you parents that took your baby home after transplant. It's a tad overwelming. I so badly want her to make it that I am afraid to make a mistake with her. I do wish sometimes that I was back home in California where all my sisters are so that things would be alot smoother for me.

The only thing that has happened was that she spiked a fever and had to go back to the hospital for a day. She had a virus, but there is not much they can do except make sure that she doesn't get worse. She has had this cold for at least 2 weeks so I get really nervous when she starts breathing funny at night or starts to struggle.
She's still a very loving, happy little girl. I just can't wait till they tell me she's 100% out of the clear. That day can't come soon enough for me. So please keep those prayers coming her way.

Tuesday, September 16, 2003 10:54 PM CDT

I have great great news!!! Tatiana came home last Wednesday and let me tell you it has been wicked. The first two days she cried so much I just wanted to take her back to the hospital. We finally got over that and she seems to be adjusting a little better. She's still on IV feeds and came home with 8 different medications. I was so stressed that I would not give her the right dose or that it wouldn't absorb well. I guess you can say I am really worried that I will screw something up and she will have a set back. On her first clinic visit we found out that she was 90% engrafted. That was really great to hear! They did say that the first week is hard and boy they weren't kidding. Today I got a call from the nurse practitioner and she informed us that Tatiana's enzyme levels are normal. I was really excited about that. I had to turn around and ask how much enzyme activity there was because when we had the amnio done they told us she had 5.9 enzyme activity and that any activity at all would mean she was normal, well we know how that went. I have to go right now, but I promise to write as soon as I can. "Thank you" to the Relief Society for helping get my house ready for her to come home. Please keep the prayers and good wishes coming, I promise they are working.

Sincerely,

The Tucketts

Tuesday, September 2, 2003 2:25 PM CDT

Dear friends and Family,

Thank you for taking the time out of your busy lives to check in on us from time to time. It really means alot.

Tatiana is back at Primary Children's Hospital. We moved back on Wednesday the 21st of August. They started giving her pedalyte through her ng tube I believe that Monday prior to us moving back. At first she just seemed fussy and then she started stooling alot and cramping. I pulled the feeds off because she was so seemed to be in pain and she still had some blood in her stool. So they waited until she had no visible signs of blood prior to starting her up again. They started her on that Sunday, Aug 24th at 2cc per hour. This time she is doing better and didn't start stooling or cramping. They continued the feeds and now it is up to 5cc per hour. They are going way slow because of the problems she has shown in the past when they go fast. She hasn't needed much blood products in a while. She did have a red cell transfusion today, but I believe it has been almost 2 weeks since she has needed one.. They all are tapering her steroids and giving her some of her medicines orally instead of through her ivy. She likes them. I think she think it's candy or food because she just can't wait to get them. Her stooling has change now it isn't runny. It looks normal and has blood. Yeh!! We are still here, but are hoping that soon they will let us take her home. I feel alot better now that her GVH seems to have healed up. Hopefully she will be able to go home in a couple of weeks. They also want to decrease the remicaide and I think they will be able to now.

The boys have come up and visited and we are able to take her for walks outside the hospital only. It's alot nicer to be able to that once in a while and get her out of her room. We rent movies and have movie nights on the weekends in her room. I feel she likes it. I will update again soon. Thank you again for the positive thoughts and prayers.

Sincerely,

Maria

Sincerely

Thursday, August 14, 2003 5:21 PM CDT

Hi All,

Tatiana had her line put in after having a picc line and IV lines for a week. She kept getting edema (swelling)on her little hands and foot. Before they finally put the central line back in. She continued to have really runny stools even though the doctors increased her steroids. They decided to start her on another drug called Remicaid to help with GVH (Graft Versus Host Disease where the body fights the new marrow). When they started Remicaid it gave her really bad cramps and also caused her to get hemorrhoids, The nurses said they have never seen a baby get hemorrhoids. They are giving her 1 dose every Tuesday, and will do that for a whole month. After that they might continue to do it once a month. The drug suppress her immune system so she has a high chance of getting fungal infections. They also increased her antibotics to counter-act the side effects of Remicaid. She has had less stooling and seems to be able to retain her fluids better. Hopefully soon they can start her feeds again. She has gotten soooo hairy. It's strange how her face is hairy and the hair on her head hasn't grown back very much. She has retained her platelets and hasn't required too much blood. All in all she is really cute and happy most of the time. She loves to suck on her binky and her hands. We are still at LDS hospital, but are planning to return to Primary's Children's Hospital next Thursday. Hopefully we won't have to be there for too much longer. I just wish we could bring her home soon. She is at day 76 out of transplant today. On day 100 they can see how the graft is working. Please keep praying and having positive thoughts. Thank You all.

Friday, August 1, 2003 7:58 PM CDT

Hi all,

Tatiana had her central line pulled on Monday due to the infection and they put two ivy lines in, one her foot and the other on her hand. She did pretty O.K. The Doctor gave her that drug that helps them forget, so she didn't remember much. She only hated it because she couldn't suck on her hand. Everything went really well that they send us back to LDS hospital within 45 minutes of them taking the line out. Due to the infection and the throwing up we are set back about 3 to 4 weeks. The nurse today told me that when they do start feeds they will go alot slower then they did the first time. They did put in a pic line today to make easier to draw labs and give her meds otherwise they would be poking her for labs everytime. We are going up to Primarys' on Monday to put the Central line back in if the infection is clear by then. So we are looking at going home in the end of August now if everything goes as plans and she doesn't have another set back. She is still in really good spirits most of the time. The only thing that is hard is leaving her. She falls asleep in my arms and wakes up as soon as she feel me putting her down. Whenever I put her in her swing she follows me around the room with her eyes. She is so cute I could be with her all day long. As always thanks for checking in on us and keeping us in your prayers. Love you guys.

Sunday, July 27, 2003 8:07 PM CDT

Hi all,

Natasha's b-day was yesterday and it was a little bit hard because Tatiana is still in the hospital. Josie I had little childern sing that song at Natasha's funeral. Gosh I miss her soooo much. She would have been 5. Tatiana had a little bit of a set back. When they started her on full strength formula her little stomach couldn't hold it down. She kept throwing up and runny stools. They stopped her feeds for a day and will start back again really slowly and on half strength formula. With the Graft verses Host disease being as bad as it was some of the doctors felt that we started her on feeds to soon. She also had developed a little bit of a fever about 4 days back. They drew blood and it grew something out. They started her on antibotics for that. It didn't completely clear the infection and so they added another antibotic and she still has fevers. The Doctors now think that she may have her central line infected and will need it pulled out. She is being transported to Primary Childerns Hospital to have that done and will be in the Intensive Care Unit for about 72 hours to give it time to heal before they place a new line in. After that, they will place the central line back in and send us back to LDS hospital. I am not crazy about moving her back and forth but I guess I don't have much of a choice right now. This sets us back another 2 weeks before she can come home. Today my sister in Laws and my mother in law came over and helped clean my house. I am trying to do a major spring cleaning prior to her coming home. I haven't finished. I did not get a chance today to go see her because I was cleaning and then I had to come to work. I felt OK to be gone because she had Mary (a really great nurse) sit with her and she gave her bath and dressed her for the day. She also stays with her and plays. The nurses are great. The patients here tend to have one nurse for one to two patients at any given time. She has had one nurse to herself most of the time. I guess I need the two weeks to still prepare. Anyone have any suggestions as to what I can do to prepare for her homecoming? I feel a little overwelmed to think of how sterile everything needs to be. I will update soon. Thank you to all for checking in on us. Love you.

Friday, July 25, 2003 4:24 PM CDT

Thanks to everyone who has taking the time to see how she is doing. It so nice to meet knew people.

Friday, July 25, 2003 4:19 PM CDT

Tatiana is doing better. She is on full strength formula 5cc every hour through her ng tube. I tried to give her the fluids orally and she threw up. I think she will be coming home with her ng tube. She had a slight fever last night but so far nothing has grown out. I am back at work so it's been hard to be with her as long as I wish. I put some pictures on the website that are post transplant. She is getting her hair back and it coming in on her face more than her skull. She is soooo cute.

Tuesday, July 22, 2003 10:04 PM CDT

As all of you know Tatiana was born with Hurlers Sydrome and we started transplant May 19th. She got her transplant May 30th at Primary's Childern Hospital in Salt Lake City Utah. We decided to do it at home because the BMT Doctors here assured us that they were following the same regiment that they do at Duke University for Cord Blood Transplants. She has had alot of things happening with her breathing and High blood pressures while in transplant. It almost seemed that a week after she recieved her transplant she started having bloody stools. At first the doctors increased her platelet parameters and hopes that it would help. It did at first and then the bleeding continued and so the doctors put a scope down to check for infections and for GVH. They found that she had GVH in her GI tract and in her Colon. Her colon being a grade 3. The higher the grade the worst it is. My heart just dropped at that point. Prior to that I had started feeling that things were going to be O.K. and then they told us that she had GVH and I wasn't sure she would
make it. The bleeding seems to have stopped and so they started her on Clear fluids through an NG tube yesterday. She seemed to have handled that pretty good and so today we are doing formula. She looks really good and I am feeling like she just might make it through this. I know that I don't sound very confident, but when you have lost a child through transplant it is really hard to put your hopes up to high and get crushed. We love her so much that we hate to have anything happen to her. I have decided to put her in Gods hands and have him do his will. Please continue to keep her in your prayers and thanks to all for all the support and love you have shown us.

Click here to go back to the main page.

----End of History----