Monday, May 1, 2006 3:18 PM CDT

We are home. We arrived Saturday afternoon. No one got sick while we were in Orlando which was great so everyone could enjoy the trip. Izzy did have two bad nights where she only slept a few hours. I was so afraid this was going to happen because I imagined her waking up Jay Jay too but that wasnt the case so it wasnt too bad. Thank goodness he is a good sleeper.

I'll write more later about the trip. Thanks for stopping by. Leslie

Wednesday, April 26, 2006 4:51 PM CDT

Today we went to Universal Studios and Izzy had a great time. She saw Barney and his show with all his friends, saw an animal actors show were we had our picture made with the pug from Men in Black, and then she rode the ET ride. We are front row for everything and she had a blast today. Yesterday at the Magic Kingdom I was a little disappointed becuase she was in fear mode and scared to ride just about everything including the POoh Bear ride and It's a Small World. Of Jay Jay loves all of it. On Monday we went to Animal Kingdom and Jay Jay was in heaven. He LOVES animals. Izzy also had fun there but was scared at the Lion King Show so I walked out with her. I am writing from the computer sattion at Give Kids the World. This place is so wonderful and the treatment they give you here at at the parks (from your badge as being at GKTW) is incredible. We havent had to wait at all for any ride. I better go because Jay Jay is going to tear this place apart if I don't get off now. Thanks for checking on us. We are having so much fun! Leslie

Saturday, April 22, 2006 3:44 PM CDT

We Leave tomorrow for DISNEY!!!!

Izzy was granted a wish through Carolina Sunshine for Children, a SC wish granting agency. We will be staying at Give Kids the World a place for children with life altering illnesses. It is supposed to be incredible. We are all packed (mostly) and will fly out tomorrow at 1:00pm from Charlotte.

We went to Audrey's b-day party this afternoon. It was a pool party and although Izzy became somewhat fearful of the pool last summer she didn't have Jay Jay then. As predicted she followed him right in and had a blast. We all stayed in the pool for about an hour until Jay was shivering and Izzy was shriveled up like a prune.

Izzy was made a big mess so I better go. Hope Disney is ready for the like of us. I'll post when we get back.Leslie

Tuesday, April 18, 2006 3:50 PM CDT

Hi Friends!

I just wanted to share that as of yesterday Jay Jay has officially spent more of his life with us than in the orphanage. I don't know why but this is very emotional for me. It hurts my heart to think of him crying as a little infant and me not being there...but we have the rest of our lives to make up for it. Even when I am tired and frustrated and at my wits end I will always thank God for my babies. I pray that his biological mom and sister are happy and healthy. Maybe one day she will know what a gift she has given us. God bless her, Leslie

Saturday, April 15, 2006 2:10 PM CDT

Hi Everyone!

I know, I know, this entry is long overdue. Izzy did completely recover from her yucky virus. She finally got her appetite back in full and is quickly gaining back any weight that she lost. I have been very busy taking care of the kids as Jimmy is on a long business trip in China. Yes he will be away for Easter. This is the drawback of his job for me...all the traveling. I am very grateful that he has such a good job though.

Izzy had several nights in a row of sleeping until 2:00am and then being up for the DAY! This is also why I have'nt had much time to get on the computer, I have been too tired. Thank goodness my sister came up from Clemson on Wednesday night for her spring break and has been helping me alot. She and my mom went with me to take the kids to the zoo yesterday and then my friend Dana helped me take them to the Jazz on the Lake event last night for our town's spring festival. There is tailgating and fireworks tonight at the lake and we my get to do that also.

Izzy has been working overtime at getting into EVERYTHING to make up for any days lost during her virus. She is so tall that she can reach almost everything and even though we have locks on many doors she can get anything laying on any counter and hide it from me. Therefore cleaning the house is nonstop. She also continues to throw everything she touches.

Last night was her best night of sleep all week and I am praying for more. I am counting the days (and sometimes hours) until Jimmy comes home.

HAPPY EASTER to everyone!!!!!! Leslie

Thursday, April 6, 2006 1:37 PM CDT

Izzy went back to school and is feeling better. It looks like she is just going to have a slow recovery from this one. They took blood yesterday to make sure nothing else was going on and everything looked OK. Her bottom looks much better and the poops have slowed significantly. She is still not herself but is getting there. She was up at 3:00am and ready to go for the day this morning. Right now both kids are napping. Gotta go enjoy my free-time. Hugs, Leslie

Monday, April 3, 2006 8:50 PM CDT

Well I hesitate to say that Izzy is doing better. She is much better than on Saturday. She went about 8hrs through the night without a poop diaper Sat night and this was a blessing for her bottom. Sunday it looked better but still not great as she still had about 8 poop diapers through out the day. Then she went again all night on Sunday which was great for her bottom. We thought today was going to be the turning point for ending the diarrhea as the morning was better but when she woke up from her nap the diarrhea started again. So hopefully she will have a good night and give her bottom some more time to heal. I am calling the doctor about getting some of the paste that Lynne and Karen mentioned in the guestbook tomorrow.

Izzy is still not herself. Crying and whining more than usual. She did actually eat some today which made me very happy. Izzy has always taken great joy in eating so for her to go a week basically eating nothing was upsetting. I pray that tomorrow will be good. I don't see her returning to school tomorrow though. She hasn't had fever anymore but she is weak and cranky and of course I can't send her if she still has the diarrhea. School for her is only 2 and 1/2 hrs but it is the highlight of her day.

For my friends with much bigger issues to deal with medically with their children, please forgive me for going on and on about this. I know that compared to chemo and transplant this is so minial but I do hate to see her in pain. Basically my goal everyday is to squeeze as much quality of life in her day as possible and this yucky bug has stolen a week from us.

Thanks for checking on us. God bless, Leslie

Saturday, April 1, 2006 6:23 PM CST

Well despite prescription butt cream, using only water and wash clothes, using a hair dryer on her bottom and just holding her bare-bottomed on a towel on my lap, Izzy's poor bottom is the worst I have ever since it. We have used every cream known to man in her short life and often had to forgo baby wipes and use washclothes but never have I seen her in so much pain from a rash. Little parts are bleeding and the whole thing is blood-red. So we just got some prescription pain killers and are praying for the diarrhea to slow down. Today she has probably had about 14 poop diapers and during the night I changed 4. All the cleaning is killing her skin.

She has had some moments of happiness but all in all she is miserable. She has only had Pedialyte and nibbled on some Baked Lays since Tuesday so she looks noticably thinner. Anyway, I better go back to poop patrol. Leslie

Friday, March 31, 2006 9:12 PM CST

Hi Friends!

Thanks for all your prayers and sweet notes for Izzy. This evening she seems to be feeling better. This bug really got her good. She had the vomiting for about 24hrs and now 48hrs of diarrhea. It has been a nonstop poop-a-thon around here. Her little bottom is not in good shape and she screams with pain everytime I have to change her.

The good news is that she seems to be feeling a little better this evening and the diarrhea has slowed down a bit. Also, so far the rest of us are not sick. I have been Cloroxing, Lysoling, and washing everything to try to prevent it from spreading. Jay Jay has a little bit of congestion and I'm sure all these chemicals arent helping but I am desparate to keep us well. I have been trying to open windows to air things out but am very careful of this since Jay Jay is MR Busy Body and would probably try to crawl out the window.

THANK YOU so much Kelly for taking Jay Jay to the park this morning and for helping me sooooo much all the time. You make life so much better for all of us. Thank you for helping me care for my babies with such patience and compassion. I know you will be an awesome teacher!

Thanks for checking in on us. Hopefully I will have great news to report soon....no more diarrhea...please!!!!!

God bless, Leslie

Wednesday, March 29, 2006 7:12 PM CST

Well, we discovered Sunday night the source of the swollen lip was a huge ulcer in Izzy's mouth. That was kind of a relief to me since she was suddenly drooling..I was getting scared that something neurological was changing. Anyway the ulcer must of been a precursor to the bug she now has. She started throwing up this morning as my mom was taking her to school and has been at it ever since. SHe has nothing in her stomach so she just keeps gagging and looks like she is choking because she is straining so hard. I absolutely hate seeing her like this. So we are waiting it out and washing loads of laundry. Please say a prayer that this thing passes fast and spares the rest of us. Thanks for checking on Izzy. Lots of love, Leslie

Sunday, March 26, 2006 7:37 AM CST

Hi Friends

Izzy's neurology and cardiology appointments went well last Monday. I think we are going to like our new neurologist. He seems very open to consulting with other doctors throughout the country for Izzy's care. He has also worked with a few Sanfilippo patients before (not while here in SC). We both agreed that we do not feel the need for another MRI of her brain right now as things seem pretty stable...no signs of seizures, change in motor function, etc. I discussed the night terrors with him and because they only seem to occur about once a month we will just monitor that unless they become more frequent. The cardiologist ordered an ECHO of her heart and because my sister came along to help we were able to distract Izzy enough with pictures and singing to get through that test. Thank you Liz for our help!! The good news is that everything still looks great with her heart. This means we dont have to worry about that and we dont have to go back to the cardiologist for another year. YIPPEE!!

The last few days Izzy has been much more discontent..just fussy and irritable. We are doing guess work as to what could be bothering her. We have read that these kids often experience headaches so we have been giving her Tylenol with mixed results. Her sleep has still been good which is wonderful but we do want her to be as happy as possible during the day. We did notice yesterday that her bottom lip seems a little swollen and though she always fights having her teeth brushed, she is fighting it even more...so we are wondering if something is going on in her mouth. SHe is still eating pretty well though and no fever or anything like that.

Even though she is more fussy right now she still has her fits of uncontrollable laughter which of course makes us laugh. SHe gets the "silly's" and just giggles and giggles.

If you get a chance please visit and/or say a prayer for two of our Sanfilippo friends who are having a difficult time.

Andrew Jump www.caringbridge.org/ky/andrewjump

Abeerah Begg www.helpourgirls.com

I have mentioned Andrew before on the site. He has experienced many problems lately especially with pressure on his brain and now he is not taking in enough fluid so he will need a feeding tube. Of course this is all so scary for his parents. Please sign their guest book if you get a chance.

For those of you that do not know the Beggs have five children. All three of their daughters have Sanfilippo and their baby boy was recently diagnosed with autism. That means that 4 of their 5 children have special needs. PLEASE stop by their site and sign their guestbook to show your support. This is an amazing family facing huge challenges with such grace.

These are just two of the many families in the US and around the world living with MPS. To meet more families go to the MPS forum www.mpsforum.com


Over the last year through the miracle of the internet I have grown to love and rely on so many of these families.

Thank you for checking on us

Leslie

Sunday, March 19, 2006 8:52 PM CST

We have had a good weekend here in little Rock Hill, SC. Once again we have been blessed with more beautiful weather so we spent most of Saturday outside.

Saturday was such a good day. My aunt Susan came over with her two boys to spend the morning playing with Izzy and Jay Jay. Susan came bearing gifts of donuts and cappucino and the boys were so sweet to Izzy. They are 3 and almost 6 yrs old but they know that something is wrong with Izzy . John (the 6yr old) came in and patted Izzy on the back and said "Are you feeling better Izzy?" Then he asked if her temperature was OK and I told him yes. How do you explain something like Sanfilippo to a six-yr-old? It is complicated enough to explain to adults. Andy (3yrs) wanted to come and share his Blue's Clue's cards with Izzy to make her feel better. SO SWEET!!!!

This summer when we first received the diagnosis and were doing lots iof fund raisers John really summed it up when he said "Izzy is OK on the outside but sick on the inside right?" Out of the mouths of babes. Izzy looks as healthy as a horse. She is huge, has a great appitite, and is as strong as an ox.

Anyway we had such a great time playing inside and outside. The kids played ball, played on the swing set, and just ran all around having a great time. Of course this is all a wonderful sight for parents but in the back of your mind you are really thinking "the harder they play the harder they sleep!"

After naps we bought a bike trailer (since Izzy is now too heavy for the baby bike seat) and we all went biking. Luckily, Izzy seems to enjoy being pulled around like the queen of Sheba in the bike trailer. This is a great family activity that we can all do together. We decided to go biking again this evening before dinner. We rode our bikes to the school about a mile or two away so the kids could play on that playground. Well things didnt go so smoothly. When we got there we discovered that the queen had pee-peed through her royal diaper and all over her carriage. Then within two minutes she tripped and busted her lip (not too bad but enough to make her hysterical). Jay Jay was none to thrilled to be put back on the bike seat when the park was right there, so the threw a grand temper tantrum. It didnt help that we accidentally snapped one of his chins in the buckle of his helmet and now he is afraid of it. Yes he is a skinny, skinny toddler who hates to eat yet he has a double-chin. Go figure.

Tomorrow Izzy has a neurology and a cardiology appointment at the USC clinics in Columbia. This is just for consultation. We have never seen either of these doctors before and pray that they will be open and willing to consult with other doctors about Sanfilippo. Thank you for stopping by to check on Izzy. May God bless each and every one of you this week. Leslie

Saturday, March 11, 2006 7:24 PM CST

Hi Friends,

All is well in the Jurado household. We spent most of the past week outside enjoying more early warm weather. Izzy is doing fantastic. Since turning three and/or starting the soy extract (she turned 3 in May and started the soy in June) she has been much healthier than during her first two years....much less congestion, runny nose, ear infections, and constant stomach problems. For the first two years I could not go anywhere without a tissue in hand to wipe her forever runny nose and endless diarrhea was the norm. I have read before that the constant congestion often improves with Sanfilippo kids as they get older but I also have to wonder if the soy (geinstein) is a factor. She also takes many other supplements but geinstein has been proven to help decrease the build up of the muccopolysacharrides(AKA: the BAD STUFF)that causes all the damage in MPS kids.

The other HUGE thing that is helping Izzy is the clonidine. This allows her to sleep much better and gives us all a better quality of life. All of her wild Stage II Sanfilippo behaviors are still there but for the most part we have adapted.

The other night at dinner we were all sitting around the table enjoying an unusually calm and quiet dinner. Dinner normally involves much chaos with Jay Jay refusing to eat and Izzy slinging food everywhere. Jimmy and I were looking at each other with such a sense of joy and accomplishment at our sweet little family. We remarked on how nonchaotic this meal was and how we could have "normal" moments afterall. Jimmy and Izzy exchanged a loving look when out of nowhere she hurled her sippy cup at his head. With his quick reflexes he dodged just in time for it to miss his head by about an inch. All the while Izzy is looking at him like he is the greatest daddy on Earth. Izzy is into tough love. Of course Jimmy and I are trying not to spit food everywhere for laughing so hard. So much for normal.

Yesterday my mom and I took the kids to Clemson to spend the night with my sister Liz. I must say the three hour drive was much better than I had anticipated. Izzy slept the whole way there and the ride back today was saved by the DVD player along with some short naps. We all had a great time and enjoyed being with our Lizzy.

Jimmy had some time with his cousin Nick and some college buddies and should be totally rejuvenated.

This is around the time last year that we first heard of MPS. For those of you that dont know, my friend Jessica read an article about MPS disorders on a Viacord (company that stores umbilical blood) pamphlet and thought she would mention it to my mom and sister because she saw some similarities to Isabel. Reluctantly my mom confronted me about MPS and asked if the previous genetic and metabolic testing we had done had already ruled these disorders out. As soon as she said MPS I got on the web and starting reading. Of course my hear stopped when I saw the words "terminal." I was angry. How could she plant such a horrible seed in my head? How could she suggest that Izzy had something this horrible? We were trying to accept that she was delayed, was different, maybe mentally retarded. That all seemed bad enough until I read about MPS. I quickly got on the phone and found out these disorders were not ruled out and set up further testing. When I mentioned to my pediatrician that we were ruling out MPS disorders he assured me that she didn't have MPS. Of course he, like many other pediatricians, was not well informed about the various types of MPS. Izzy didnt have any of the orthopedic issues common with Hurlers and she wasn't male (Hunters) and I guess he didnt know that she was the classic Sanfilippo kid. Driving to UNC for the testing I kept telling myself she doesnt have this. My pediatrician doesnt even think she has this. But driving home after talking with Dr Muenzer at UNC, I knew she probably did. A long two and a half months later we finally got the confirmation that yes she did have MPSIII or Sanfilippo Syndrome.

Many dreams were crushed a year ago. Since Izzy was three months old I had been keeping a journal for her. Telling her about herself as a baby, how much we loved her, and what was most important in life. I titled it "Love Letters for Isabel." As I started to notice some delays I became scared to write new entries. My fear was "what if she can never read this?" The entries became fewer and fewer as I thought "what if she can never even understand the words if someone reads them to her?" I put the journal away. It made me too sad.

Anyway now that it is a year later I can say that I am soooo grateful to have a diagnosis. To understand my child and not blame her. To be blessed enough to know that she is a special gift and that each day is so precious.
Diagnosis is a hard thing but a good thing. The MPS Society has started a campaign called Join the Search which is dedicated to early diagnosis of MPS disorders. You can visit the site at wwww.jointhesearch.org.

Oh and guess what. God has slowly shown me over the last year that all the big life lessons I had been writing about in her journal, that I thought she would some day read, she was actually here to teach me. Not the other way around.

Again God has humbled me. As much as my human brain thinks it can reason and rationalize, God reminds me that I cannot. Life is not fair but still it is good. Leslie

Sunday, March 5, 2006 7:52 PM CST

UUURRRGGGGGG!!!!I just wrote a very long entry only to have it erased. I have been having problems signing in to leave a new entry lately too. Does this happen to anyone else with a caring bridge site?? It keeps saying my password is invalid.

OK so here are the Cliff Notes from my erased entry:

Izzy has had a good week.
We've had some great weather her lately.
Sleep is still much better
Izzy continues to teach us patience and unconditional love.
We feel blessed to have her and Jay Jay in our lives.
We are looking forward to Spring!
Thanks for all your love and support.
Big hugs and kisses to everyone.


Leslie

Friday, February 24, 2006 8:42 PM CST

Saturday February 25th is National MPS Day.

Please take a moment out of the day to say a prayer for all the children affected with MPS, their families, and the doctors/scientists working to find better treatments.

Monday, February 20, 2006 10:18 PM CST

Hi Friends

I added some new pictures for your viewing pleasure. I am afraid that I was unable to crop/edit them as I wanted to. It only takes me about an hour to change the pictures. I am definately not a "techie." Jimmy has the computer brains in this family.

We are doing well. Just busy counting our blessings and enjoying our sleep-filled nights. YIPEE!! Izzy stopped the vomiting (at least for now) so that's made life better for everyone. I am continuosly amazed at our love for these two little buggars. We get better and better at laughing at the chaos that often is our lives. Jimmy and I are both pretty high energy people so we are pretty good at keeping up with these guys. They definatley keep us laughing.

Izzy's bizarre rituals are often hillarious. She always says "thank you" after everything even after kicking and screaming through self-care tasks like changing her diaper or getting her hair fixed. SHe will be mad as a hornet and fighting as hard as she can and then as soon as I am finished the sweetest little "thank you" comes out. SHe is still very much into wearing my bras around her neck(don't ask???), caring around as many baby dolls as she can, and of course throwing her cup across the room as soon as she is finished. Oh and last week she got into my wallet again. As I was gathering up all my credit cards, insurance cards etc I came across a soaking wet crumpled piece of paper. Kathy Acker you will get a kick out of this. Guess what? It was my OT license. Good thing I am not looking for a job right now. I can see me trying to explain to the friendly people at the state licensing board. "Yes, I said my daughter ate my OT license." That might be a first.

Yes Izzy's tantrums get old, we do get tired but we are learning to think of these things as normal life for us. Izzy is still a little snuggle bunny. She loves to sit on our laps and is just silly laughing for the sake of laughing. We love these moments. Izzy has taught me more in three years than than all my formal education ever could.

Jay Jay is such a character. He is so curious and into everything. I love sharing things with him everyday..such as discovering the moon, shadows, and just basic communication. He observes things that Izzy never really picked up on. He can sign (as in sign language) at least ten words and is trying to sound out words. It is so much fun. He loves animals so we spend our days going over picture after picture with Mommy doing the sound effects. I can't really do the elephant. Need to work on that. Right now he is hung up on signing Gorilla. Every morning when we get him out of the crib he signs "book" and then points to the gorilla and makes the sign. He wakes up ready for action. Thank you God for this precious little boy. It seems like we have had him forever. I could not love him anymore than I do, it is not possible.

So right now life feels pretty good. Sleep does wonders for your perspective and non-vomit days don't hurt either. I am eagerly anticipating spring so we can get outside everyday and burn off lots of kid energy. Thanks for keeping up with us. Leslie

Thursday, February 16, 2006 8:03 PM CST

Hi Friends

I think my last entry might have been been shockingly honest for some. I appreciate everyone's words of support for letting me vent. I guess I want people to know just how horrible this disorder is so they will be as mad as I am that there is no cure.

Anyway...The good news is that Izzy has only had two bad nights in the last two weeks. This is WONDERFUL for us. It makes life soooooo much better to have some sleep. The bad news is that she has started her random vomiting again. About a month ago Izzy was vomiting atleast once a day, everyday for over a week. We started some reflux medicine and after a few days it improved. AFter forgetting the meds a few times with no vomiting we stopped giving it. Well she threw up four times today. The thing is that she is not sick and immediately wants to refill her tummy. One of our MPS friends told us their daughter started doing the same thing around Izzy's age.

Izzy and I went back to Columbia (USC School of Medicine) on Tuesday for more psychological testing. We are trying to get her qualified for DSN (disabilities and special needs) so we will have a caseworker and open some more doors for meeting her needs now and in the future. Well the review board in Columbia did not think that her diagnosis nor her extensive testing from Duke and UNC were enough so we went for more. URGG!!!The psychologists were very good with her. They basically ignored her (ignoring her is good if you are a stranger wanting her to do something) as they placed tasks in front of her and she was fairly cooperative for the first hour. Her overall skills still fall in the 18 month range.

Communication continues to be her weakest area. Her receptive language scored out around 13 months. This is about right. Jay Jay is 15 months and his rec. lang. is definately higher than Izzy's. They placed several objects in front of her and tried to get her to name them. They would say does she ever say "....." (i.e. cup) and I kept finding myself saying yes she used to but not anymore. By doing this over and over it really hit home how much of her words she has lost. She does sometimes add new ones but they are becoming less and less.

Izzy has always been better with names than other words but lately I find she is losing many of those too. ABout a month ago she started calling Jimmy "mommy" instead of "daddy." She will say "daddy" if I keep saying "no that is daddy." Now everyday when he comes home she gets soooo excited and says "mommy" and Jimmy is so sweet and just says "that's right baby, I can be mommy, whatever you say."

He is so good with her. God skipped over Jimmy when he was handing out patience but not when it comes to her. Izzy can do no wrong with her daddy (or mommy as she calls him).

********A precious little girl that lives near us named Jenna is having a very important surgery tomorrow. This will be her second brain surgery this week. She did great with the first surgery but the tumor they are trying to resect tomorrow is right at her brainstem so it is a very critical situation. Please say a prayer for Jenna and leave then a message of encouragement at www.caringbridge.org/sc/jennawit if you have a chance. These guestbook entries do mean so much to families. Thanks to all my friends, family, and "strangers no more" who have not only kept up with Izzy's site but also our other MPS friends. May God bless us all with peaceful sleep tonight. Leslie

Saturday, February 11, 2006 8:48 PM CST

Hi Friends!

Izzy continues to be (knock on wood FAST) sleeping! We are so thrilled. Again we have been warned that sometimes the effectiveness of such drugs wears off for Sanfilippo kids but we are enjoying it while it lasts. The recent nights of sleep have sort of slowed our desire for home modifications but we know we must take care of this.

Currently Izzy's room is upstairs connected to Jay's by a "Jack and Jill" bathroom. This sounded like a great idea when we were building the house but now with the symptoms of Sanfilippo, it is not a good set-up. Our bedroom is downstairs but since this summer it more like ours and Izzy's bedroom. When Izzy is awake she is very loud and we dont want two kids awake all night so we need her distanced from Jay's room and closer to us. We are planning on converting our office which is downstairs near our room into her room. We need a safe place to contain her that is close to us, far enough away from him and with a TV/DVD so she can be occupied when she is awake. Many other parents (MPS parents that is) have told us that they use the half-doors (remember the old doors split in the middle with a top and bottom) as a way to contain the children yet not have them in a closed off room. Keep in mind that we do not plan on locking her in her room all day but there are times (like 3:00am) that we just need to have her contained in a safe environment.

We currently have locks now on the pantry door (got tired of cleaning up all the food) and we must keep the doors locked (found her outside last week)and everything except her toys must be out of reach. All these issues are very common with Sanfilippo. Imagine dementia in a child. This is what I often think off atleast....my grandfather with Alzheimers. Sometimes they are agitated, wandering, restless, confused, and yes sometimes they are combative. Overall Izzy is a happy little girl but she is still a little girl with Sanfilippo. Since we cannot change most of her behaviors we have to change the environment.

I think most people do not understand the extent of this disorder. It not only slowly robs you of your child but in the process it takes away so many things. Tonight we went to a basketball game...me, Jimmy, and Jay Jay. Izzy stayed home with my mom. I wish she could have gone like last year but even last year it was very hard, this year it is virtually impossible. This stage of the disorder leaves us pretty isolated. People ask how Izzy is doing but do they really want to know? Most people dont want to hear the reality. That she has to wear large onsies under her clothes or overalls to keep her from pulling off her diaper, that we have to sit on her to brush her teeth, that everyday brushing her hair is like going into battle, that we go days without more than 3 hrs sleep at a time, that she throws her food and cup across the room atleast once a day. Izzy is very loud and often defiant so just taking her simple places can be difficult. Most of the time I just dont want to deal with the stares. I can see it in their faces..judging eyes like we are bad parents. Like we havent disciplined her. It just becomes stressful for me so we do take out and only go loud places.

This entry may sound negative but that is not my intention. For people that really do want to know, this is what life is like at our house. Atleast for now. We are grateful for everything that we have (especially our support system) but I will not pretend like it is easy. We adore Izzy but hate this disorder and yes that does sometimes create some internal conflict. We constantly remind ourselves that these symptoms are not her, they are just symptoms.

I hope this helps bring home the ugly truth about this disorder that is stealing so many kids from their parents. For my friends with two and three children with Sanfilippo, I dont know how you do it. Yes I do, one day at a time. May God bless you, Leslie

Monday, February 6, 2006 8:51 PM CST

I am almost too scared to write this for jinxing myself BUT Izzy has been sleeping much better. It appears that with an increased dosage her medicine is working (watch her have one of her famous 5 hr middle-of-the-night parties tonight.) She has slept for many nights in a row and we are praying for more. I feel like a new person! I just wanted to share the goods news and say thank you for keeping us in your prayers.

Of course their is still never a dull moment in our house. I laugh now but this morning I was almost crying from the madness. Izzy has always been gifted at vomiting for no reason. She had a first even for her today. Just minutes after Jimmy pulled out of the driveway this morning, she (for whatever reason) starts throwing up her few bites of biscuit and juice ALL OVER THE DOG. Ever tried getting vomit out of fur? Of course she managed to get it all over herself and take off running as I stood frozen trying to decide which kid or animal to grab first. SOmetimes I feel like my life is one long episode of Candid Camera but when do I get let in on the joke. YIKES!!!! But guess what it wasnt that big of a deal because I was nice and refreshed from my great night's sleep. Being Izzy's mom is a marathon of exciting and often smelly events. Keep laughing, Leslie

Wednesday, February 1, 2006 3:32 PM CST

I am sorry I have not updated lately. I have had some trouble signing into the site the last few times I have tried. It is working today so I'll try to update everyone.

Izzy continues to be having more difficulty sleeping. Her doctor prescribed a medication to help with the sleep last week but so far we havent seen much improvement. It could be that the dose is not high enough but since her doctor is out of the country for the next two weeks we are at a standstill. Jimmy was out of the country last week so it was a very long week...only about two nights of sleep. Thanks again mom for helping me out so much. I don't know what I would do without you. Anyway we are looking into modifying our house some to be able to better deal with her all night hyper sessions. We will probably move her room to what is currently our office and is downstairs close to our room. Izzy sleeps with one of us in our bed now and we are hoping to be able to get her into her own bed once we have changed things around. We need to have a TV/DVD player in her room to keep her occupied while she is awake. ANyway Jimmy just came home Monday night so we are still kind of brainstorming.

One of our MPS friends Andrew Jump is having a hard time. PLease say a prayer for him and visit his site to offer some encouraging words if you can.

www.caringbridge.org/ky/andrewjump

I will try to write more often. As usual things are pretty busy around here. Thanks for stopping by. Leslie

Thursday, January 19, 2006 7:12 PM CST

Hi Friends!

I just realized that it has been a while since I had last written. Things are fine here. We are still having the same sleep issues with Izzy. About every third night she is up for 4-5 hrs and is wired. We are working on having some more tests done before trying some sleep meds. I am terrified that she is going to be doing this every night soon. I am praying hard. Please pray for Izzy to sleep when you are saying your prayers at night if you think about it. It seems like a silly thing to pray for but right now it is priority number one in our house. When she doesnt sleep the next day is horrible and our patience is less when we are sleep-deprived.

Jimmy leaves on Sunday for a week and I am dreading doing sleep duty by myself. My parents usually take her one night when Jimmy is gone so that is very helpful. I am so blessed to have such devoted parents!!

Jay Jay is doing great. He still has mommy-fever as Jimmy calls it. He is soooooo cute and we adore him but none of us adore him as much as Izzy does. He loves her too and they are so cute to watch hugging and playing together. We still have to keep a very close watch on Izzy with him though because her hugs can quickly turn into head-locks.

Izzy had a great day today. So sweet and loving and happy all day. She is due for a bad night of sleep tonight though so tomorrow might be a different story.

Thanks for keeping up with Izzy and for all your prayers and support. Hugs and head-locks from Izzy. Leslie

Saturday, January 7, 2006 8:15 PM CST

Hi Friends!

For all the sad and frustrating things that come with having a child with Sanfilippo syndrome there are also many great and funny moments. I thought I'd share our Izzy laughs for today. We finally took down our artificial Christmas tree and began putting away all the nick nacks until next year. Izzy was so funny because she kept trying to put the branches back onto the remaining tree pole. She would reach up and hold a branch in place and then when she let go it would of course fall to the ground. She kept trying and trying to put the tree back together. I got a few pictures and will try to post one. This occupied her for a good ten minutes before she went back to trying to put her shoes on the dog.

A few days ago I starting taking ornaments off the tree and found some of Izzy's hidden decorations. I found a very small cookbook from the pantry, an empty sippy cup that was beginning to grow microorganisms, a stacking box, and a small baby doll. I guess this year she finally got the message that mommy and daddy didn't want her taking the ornaments off but why not add some.

Yesterday I found her trying to put the shock collars (invisible fence) for the dogs on her neck. There is never a dull moment in our house!!!

Wishing you many reasons to laugh at your life! Leslie

Thursday, December 29, 2005 8:06 PM CST

Hi Everyone!

We had a nice Christmas despite Izzy waking up at 3:00am on Christmas morning. Santa must not have gotten my wish list: SLEEP!!!! PLEASE!!! Oh well, such is life with Izzy. She had an absolute blast opening her presents. We have great video and pictures of her looking like she is on top of the world with pure joy. We live for these moments. We have had a nice couple days of milder weather. Yesterday we went to the park with Gandy (grandma) and today we met our friends from playgroup at Chuck E Cheese. My mom and sister went with us today. I am so lucky to have them. We all enjoyed Izzy's excitement with the rides and games. I also got some beautiful pictures of them yesterday at the park.

Izzy is doing well but we miss the little things she has lost. SHe used to say her ABC's up to S and now it is more the tune with some letters thrown in here and there. She seems to have forgotten some names lately but maybe they will resurface. She has days where she does alot of "hand flapping" and almost autistic-like behaviors. We adore her and mostly laugh at her but as her parents deep down is always the longing for her to better understand us.

Sometimes I panic with Jay Jay because he is at the age where things started to get fuzzy with Izzy. Where she started to stagnate in her development. I tell myself not to be paranoid but sometimes I just get scared. Again I tell myself I AM NOT IN CONTROL OF ANYTHING and not to ruin what I have by worrying.

On a good note: Izzy's developmental pediatrician Dr Wuori submitted her for a program similar to Make a wish in SC for terminally ill children. They are going to send us to Disney World. We are very excited and will probably be going in March or April. I know she will love it and I cant wait to see her in awe of everything.

Happy New Year!!! Leslie

Sunday, December 18, 2005 9:08 PM CST

Looking back at my babies all bundled up cozy and asleep in their carseats tonight as I drove home, I thought this must be what heaven feels like. Feeling like all is right in the world...knowing my babies are warm, safe, and at peace. More and more I tell myself that tomorrow is not promised for any of us and not too worry so much about the future, just live in the moment. At the moment we are excited about Christmas, enjoying snuggling up together and keeping warm by the fire, grateful for each night of decent sleep, and trying to laugh even when we feel like crying.

Please say a prayer for Jim and Rosalind Stringer who will undergo a kidney transplant on Tuesday morning. They are a sweet couple in our church whom we greatly admire. Rosalind is giving Jim a kidney for Christmas...I don't think she'll ever be able to top that gift.

We also know a couple who unexpectedly lost their infant son last night while he was sleeping at home in his crib. I cannot imagine their pain and sorrow. Please say a prayer for them...God will know who you're praying for.

Blessing to all, Leslie

Wednesday, December 7, 2005 3:48 PM CST

Hi Friends!

We are doing well. I can't belive how quickly Christmas is coming. I always think that I have plenty of time and then BAM! it's here.

Izzy has been sleeping pretty well this week. SHe did wake up at 4:00 this morning but I'll take that any day over 1:00. I just spoke with Jimmy and he will be boarding a plane in about 2 hrs to start his trip home. He will arrive in Charlotte around 9:00pm on Saturday.

Hopefully we'll get the Christmas tree up soon. We are finally giving in and doing a fake one this year. I need easy, low maintenance.

Izzy is doing well. No major problems, illnesses, anything. Her difficult behaviors seem to come and go. We have several days where she is just so calm and sweet and then days where she is very aggitated and hyperactive. Izzy is always loving, cuddly. Sometimes I think I could kiss her face off. After all our sicknesses I told myself to stop kisses the kids but I just can't. I'm addicted.

Izzy and I had such a great trip to Walmart the other night. She was so well behaved the whole time. She never tried to get out of the cart, cry, anything. She just enjoyed the trip but not half as much as I did. It was so nice for me. I used to be able to just deal with her behaviors and take her anywhere and not worry too much. But now that she is approaching 45lbs, her limp noodle routine is just too hard on my body especially when I am trying to shop at the same time.

Jay Jay is really something. He has figured out how wrapped he has me and has learned how to turn on the tears at any time. He starts to do something he knows he shouldnt and I tell him "No." Then he crinkles up his face and squeazes his eyes until tears come. It is so fake. The whole time I am just trying to keep a straight face. He nevers stops going. He is so cute toddling all around here sucking his thumb and holding his blankie. He investigates every area of the house and has his little favorite spots. He is definately our Christmas present this year and I think that we are his too.

Without my mom I would really have a hard time when Jimmy travels. SHe is wonderful and helps me so much. Sometimes I feel like I am stealing her retirement, taking up so much of her time, but I know she adores the kids as much as I do. The best thing about having my mom to help me is that she also helps me find the humor in all of this.

Thank you God for my FAMILY!!!

Hugs and kisses to my friends near and far, old and new.

Leslie

Saturday, December 3, 2005 4:14 PM CST

Hi Friends!

Well it seems that we are all finally over our terrible stomach bug. YEAH!!! It went through the ENTIRE family. It always takes Izzy a while to shake a virus but she is doing fine now. She is happily watching "JoJo's Circus" right now.

I just got home from going to Clemson. I went with my brother yesterday so we could pull for the Clemson Tiger Soccer team and support Liz and Phil. It was such a great, nerve racking game and CLEMSON WON and is off to the final four. Phil (my brother-n-law) is an assistant coach and is always traveling here and there for games, recruiting, etc. So we are very excited and pulling for the Tigers to beat New Mexico on Friday.

Jimmy is leaving very early in the morning for a week in Taiwan. I dont envy him with that flight (or flights I should say).

Jay Jay is doing well and still into everything now that he is walking. Our biggest challenge seems to be keeping him out of the toilets. He thinks they are little pools for him to splash in. He is still as cute as can be and has us all wrapped around his finger.

Izzy is doing OK but sleeping has been more of an issue. She seems to be moving to two nights per week of being up for 5-6 hrs instead of one night and I am exhausted most of the time.

Many of you may know that little Frankie DeMattis is back home in Connecticutt and doing well. GO FRANKIEPANTS!!! I received a call Wednesday from a father of a two year old little boy also in Conn. that was just diagnosed with MPSIIIA. Please say a prayer for this family as they try to come to terms with this diagnosis and make some big decisions.

Hope everyone is getting into the holiday spirit. We need to decorate! Happy Holidays. Leslie

Friday, November 25, 2005 8:20 AM CST

Well we had an interesting Thanksgiving. I had a visit from the stomach flu so I spent it here in bed (and in the bathroom) while Jimmy and the kids went to mom and dad's. It made me very thankful that I hadnt had a stomach bug in three years and has me praying that no on else in the family will get it. Hence my Thanksgiving entry is late.

I am thankful for....
A loving God
my children
my husband
my family and friends
my country and freedom
my health
prayers from loved ones and strangers that carry us everyday

Blessing to you and your family. Leslie


UPDATE: Unfortunately Izzy now has my little stomach bug. Needless to say our washer and dryer are working overtime as is our bathtub. Please say a prayer that it will pass quickly and spare the rest of the family.

Thursday, November 17, 2005 6:56 PM CST

Hi All

Well Izzy had another great day today. I am not sure why she is doing so much better but she is. SHe has been much calmer, more focused for tasks, and less obsessed with Jay Jay. The result has been that we have had an amazing week. Everyday when I pick her up from school, they tell me about a new activity she did with better attention or how she is following the routine. It is great!! I am so happy. I pray that things will continue in this direction. Have a great weekend. I know I will...Jimmy and I have a date tomorrow night. Yippee!! Leslie

Wednesday, November 16, 2005 11:36 AM CST

Hi Friends!

Well I cut Izzy's hair this morning (dont laugh Liz and Dana) and it looks OK if I do say so myself...for a moving target anyway. I always did love to cut hair. Her hair has changed so much over the last year. It used to be soft and have big loose curls and now it is more frizzy and brittle as is typical with Sanfilippo. She fights me almost every morning when I try to fix it so now that there is a little less hair maybe I'll be at an advantage. I just cut it to her shoulders.

Izzy and I went to the park this morning before school and we had such a great time. It was a windy perfect fall day and I kept thinking "I hope I remember this day forever." She kept holding my hand and wanting me to do everything that she did. I felt a connection with her like I havent in a while. I mean she was all present, no confusion, no hand flapping. I chased her and she laughed and ran and ran. We have always gone to the park alot. I started taking her before she could walk so for me it is a special place for us. She had not one tantrum the whole time. It was her without the difficult behaviors, just a sweet innocent little girl. I treasure these moments and pray for many, many more. Have a great day and enjoy your family, faults and all. Leslie

Sunday, November 13, 2005 7:32 PM CST

Hi Friends!

Sorry I havent written in a while. Last week was busy. Jimmy left Monday morning and of course Izzy had a bad night (up from 2:00 am on) Sunday night so Jimmy and I got almost no sleep. He was gone all week. Thank God for my mom. She took one of the kids alot so I would only have one at a time. Izzy spent two nights with her last week and then one night this weekend. Thank goodness she slept better for her.

I got away for the weekend to go to Myrtle Beach with two of my girlfriends. We did this last year and are trying to make it a tradition. We shop, eat, sleep, and just relax. It was so nice and I got started on my Christmas shopping.

I took Izzy to see Dr Wuori in Columbia last week. He is a very well known and highly respected Developmental Pediatrician in SC. I had heard his name for years as a pediatric OT and had heard how great he was but he is even better than I'd imagined. We first saw him in May while we were waiting for Izzy's test results. We didnt mention the testing so as not to bias him and he came to the conclusion himself. AFter an hour or so of taking her history he said "I think you need more metabolic testing." I confessed that we were waiting on the results and he showed me where he had just written down MPS with a big question mark beside it.

Any way besides being so knowledgable he is so kind and goes the extra mile. He seems to care about the children and the parents. He has called several times to check on us over the last several months. The only bad thing about Dr Wuori is that everybody wants to see him so it takes a while to get an appointment.

From this visit we acomplished getting a stroller (or light-weight wheel chair) for Izzy. We need this not because she cannot walk but because the disorder causes many behavioral problems one of which is deciding to sit down on the ground and refuse to walk. Since she weighs 43lbs carrying her is not easy and normal strollers are too small. We will get this in a few weeks.

We discussed medications to help with sleep and hyperactivity. He doesnt want to start her on anything until he has seen another EKG to make sure her heart is still OK. Her EKG at Duke in June was fine. For now we are upping her melatonin to 5mg. He also brought up the fact that many kids with MPSIII show no improvements with these meds but he is wiling to try.

He is also submitting her name for SC's program that grants wishes to kids with life-threatening illnesses. He feels like she will be granted a wish and we would like to take her to Disney. Hopefully this will happen pretty soon. We go back to see him in December.

Izzy has also switched to the afternoon preschool class at school. Now she goes from 11:30 to 2:00. This class is a little more structured than the morning class and Izzy seems to be doing well in it.

Izzy continues to be a loving sweet child with the greatest smile you'll ever see however caring for her right now is very challenging at times. She is completely dependent for all self-care, extremely hyperactive, and at times very destructive and difficult. Of course we know these behaviors are not her fault and we just try to love her through it. Some days are very hard for us as parents and grandparents so we asked for your continued prayers for guidance, faith, and patience. Thank you for reading our site. God Bless, Leslie

Wednesday, November 2, 2005 10:44 AM CST

Hi Friends!!

The GOLF TOURNAMENT was yesterday and was a complete success. A thousand thank yous to Clint and Shelley Crocker, Craig Gettys, Terry Robertson, Mike Smith and so many more who worked for months to make this such a success. The weather was absolutely beautiful and it looked like the guys (plus Kathy) had a great time. Izzy had fun running around with Samantha Crocker who is two and lives across the street from us. To her every event is a party.

Izzy is still doing pretty well. I am almost scared to say that she has gone an incredible 4 months without congestion. Before now we were lucky if she had a week out of the month without a runny nose. I am not sure if it is the Soy Extract that is contributing to this or not. The congestion got better around when we started the soy. I have since read that many MPS kids have a reduction in the chronic congestion after they turn three. Whatever the reason we are soooo grateful.

Izzy continues to add new words but also continues to lose them. By far "Jay Jay" is what she says more than anything else. SHe is still running and loves playing outside. Pushing continues to be an issue but is a little better than before.

I hear Jay Jay waking up from a nap so I better go. God bless, Leslie

Saturday, October 29, 2005 8:39 AM CDT

Hi All!!

Yesterday was such a good day for Izzy. She was less hyperactive and just happy and cuddly all day. It was like going back a year in time...like she was then. I went to school with her for their "Trunk or Treating" where all the kids dress up and Trick or Treat in the parking lot as parents hand out goodies. Izzy is Dorthy this year and of course she is the cutest Dorothy ever. Most of the kids in her class also dressed up and were so cute. Last night Tonia and Olivia came over and Izzy was much better with Olivia (less pushing.)

Izzy's only destructive moment yesterday was when she dumped out a Sam's-sized box of Goldfish and proceeded to stomp on them like Lucy and Ethel on the episode where they stomp the grapes. Of course this all occurred as I was up stairs trying to put Jay Jay to sleep. I got a picture so when Jimmy comes home and says "So what did you do today?" I can show him.

Jay Jay did not have such a great day as he had the little boy surgery done. Apparently this is something done mostly in the US and in the Southeast especially. With much consideration we went ahead and did it. He was in pain yesterday but today seems to be just fine with no medication.

Jimmy has been very excited lately because his brother Pedro is running for a city office in Bogota. The elections are in March and Jimmy is planning to be there to support him. Pedro loves Colombia very much and wants to be president some day.

Tonight we have the Fall carnival at our church for the kids. So they will wear their costumes tonight. Jimmy and I are going to an 80's costume party later tonight. We are going to go as Jim and Tammy Baker. HeHeHe!!

Tomorrow is the neighborhood Halloween parade and party and then finally Monday night is Trick or Treating. By then Izzy's costume will probably be able to walk on its own. I forgot to say that Jay Jay is going to be the Lion from the Wizard of Oz.

Well I better go. I hope everyone has a great Halloween and that our kids' teeth don't rot out. Leslie

Thursday, October 27, 2005 4:21 PM CDT

Hi Everyone!

Well Jay Jay's b-day party was so much fun especially for Izzy. We invited many people, especially children, and we had my friend Kathy's bounce house so it was a blast. Jay Jay enjoyed his cake and all his presents but of course in Izzy's mind it was her b-day party. Fine by Jay Jay.

Jay Jay was also baptized last Sunday. This was also a blast and again Izzy thought that too was her b-day party as she partied in the sanctuary. Thank goodness our congregation understands her condition and just enjoyed the liveliness of the ceremony. And our minister Joe Brooks did such a wonerful job and put so much effort into making it special for us.

Jimmy's sister Carmen and her family were here from Florida and got stuck up here b/c of the hurricane. They had to rent a car and drive home because the airport was closed and the flights were booked for many days. She actually has power but apparently her trampoline ended up in the neighbor's pool. Ooops!

Last night we were again "Sleepless in South Carolina" (at least at our house). Izzy was up (and I mean UP) from 11:00pm to about 6:30am. YIKES!!! Jimmy and I are stumbling through the day and of course she is still going strong. Is there such a thing as hyper-hyperactivity? If so put her picture by the definition. Just a side-note. I just retrieved Jay Jay from the TOP of our staircase. HEART ATTACK!!! Note to self...more gates!!! He is starting to take a few steps on his own and boy is he a climber. Izzy never was. OK my hours are spent preventing and dealing with chaos.

Jimmy's sister saw first hand how quickly Isabel can get into and dump out a whole bag of chips, throw her food half-way across the room, and have a throw down tantrum at random. At any moment in time, if I am cleaning nonstop, there may be one square foot of the house that is clean.

Busy but still blessed. Has Isabel ever taught us all patience!!! Praying for sleep. Leslie

Friday, October 21, 2005 8:53 AM CDT

Good Morning!

Jay Jay had a nice day yesterday but today is his party. Jimmy's sister Carmen and her family are flying up this morning. We are so excited. We love them all so much and wish we lived closer. Izzy loves when the house is full of children especially her cousins.

We went to the York County Fair yesterday and it gave me the best feeling. Yesterday the fair was open to all people with disabilities in the county and everything is free. I went last year with one of the classes I worked with to help with the kids but this year I knew that my child now qualified as having a disability. But here I felt at home. I looked around and saw so many special children that I love and their families and their teachers who are my friends. I felt like nobody there was looking at Izzy for chewing on her chewy and judging her. Yesterday at the fair everybody was special, different and there different was normal. I saw parents just like me trying to give their children the best out of life.

I found out at the fair that one of my sweet children from the schools, a little girl named Mariah now needs a heart transplant. Please pray for little Mariah to get her new heart and thrive. She is such a jewel. A pure, innocent loving child.

So now I must go and get ready for the party. Have a great weekend! Leslie

Wednesday, October 19, 2005 6:59 AM CDT

Hi Everyone!

Tomorrow a precious baby boy named Jay Jay will turn one year old. Lately I have been thinking more and more about his mother. Will she be thinking about him tomorrow? Will she say a prayer for him? I hope so. One thing is certain. SHe will never know just how much her decision to have her baby, not abort him, and then place him for adoption has changed our lives forever. He has brought us so much joy and happiness. To me adoption is a miracle.

I must say that he is about the happiest baby I have ever seen. His personality is amazing. Even when he is sick he is still smiling. My family knows that I still have much sorrow over Izzy's illness. Nothing can take that away BUT this sweet baby boy has helped heal our family in many ways. Izzy still adores him and never gets bored with him. His spirit is incredible. Despite spending the first 9 and a half months of his life in an orphanage (a good one BUT still an orphange) he is such a personable and happy baby. I think the greatest thing about Jay Jay is how quickly we could sense his love for us.

So tonight I will pray for his mother. I pray that she feels peace about her decision, a decision made out of love. Thank you God for our babies! Leslie

Sunday, October 16, 2005 3:16 PM CDT

Today I wanted to share a poem I recently heard on the Christian radio station. It helps me answer those people who say if you pray enough you will be healed. There are many God fearing people around the world who pray as hard as anyone can but still have suffering...that doesnt mean God has forsaken them or is punishing them. I tell myself this in times of doubt.

They told me “Just have faith!”
“You must believe it’s true!”
“Because believing is the key
To this illness leaving you!”

They quoted scriptures on healing
Said He died so we wouldn’t be sick;
They told me if I’d just claim it,
This illness I would kick.

So I prayed and cried and wondered
Why the Lord seemed so unwilling
To heal my sickly body
And answer to my bidding.

My prayers I prayed unwavering
And I read all the right verses
But instead of the hopeful blessings,
I felt my life was full of curses.

Then one day as I was praying
The Lord spoke to me through a verse
He showed me that suffering produces character
And that my life could be much worse.

He showed me that the purpose
Of my suffering would be
A closer walk with Him
And His faithfulness I would see.

Because suffering and illness
Can bring us closer to our Jesus!
And when we rely on Him for strength,
.Others notice and believe us!

Because what speaks louder to this world
Than a thankful, joyful man
Who doesn’t appear to have much luck
But nonetheless can stand!

Our Lord, He draws us close
When we need Him to be near
He puts His arms around us
And teaches us not to fear.

So consider it pure joy, my friends
When you face trials of many kinds!
Our Lord has paused to teach you
That He will never leave your side.

Because my Bible makes it clear
That times of suffering will come
And that He will be there guiding me
Through each and every one.

And another thing He tells me is
That trials are in store.
Because the testing of my faith
Will help me grow to trust Him more!

My goal should not be to live
A life of comfort and of ease
It should be to become HOLY
And my Heavenly Father to please!

Written by Leslie from New Life 91.9 morning show

Friday, October 14, 2005 5:22 PM CDT

Hi Friends!

Let me start off by saying that the last two times I have written an entry, they have been erased as my computer loses internet connection as I am writing. URGGG!!!!

Anyway here's a recap of what I said in the other entries. Izzy is doing really well. She has been talking alot and adding new words. Her favorite word is still Jay Jay. SHe is obsessed with him. She still loves school and tries to mother all the kids. Our biggest problem area continues to be behaviors. The tantrums have decreased some and she will follow me almost anywhere if Jay Jay is in my arms so that is good BUT she is really pushing and pulling alot. She still throws her food across the kitchen when she is finished so I have be quick and she would be a millionare if "Mess Maker" was a profession. Man is she a hard worker. She is so quick it feels like she has eight arms instead of two. Overall she is happy and enjoying life which is our goal.

We have two fundraisers coming up. One is a golf tournament at Pinetuck on Oct 22 and the other is also a golf tournament on Nov 1 at Waterford. Both are in Rock Hill. All proceeds fund research for MPSIII. For more info go to the fundraisers section on the www.helpisabel.com site.

Jay Jay is doing well. He has become very clingy to me lately which secretly I love, but it makes things a little harder. He has an ear infection but is still a pretty happy boy.

Better go attend to the zoo, I mean the crew. God bless, Leslie

Monday, October 3, 2005 9:57 AM CDT

Good morning!

Jimmy is home. Everyone had a good nights sleep last night. YEAH!!!! Izzy is over whatever she had on Friday and went to school this morning.

Jay Jay is doing well and still amazes us with his easy temperament.

I am beginning to think some of the behaviors Ive been seeing in Izzy and thinking were neurological regression are more of a three year old dealing with a new baby in the house. Jay Jay spent the night with mom and dad on Friday and most of the day Saturday and Izzy's was so loving and more cooperative. I think she just wants to be the only child sometimes. She does love her brother but sometimes needs all mommy's attention. I can't blame her for that, normal sibling rivalry stuff.

October is very busy for us. Lots of birthdays....Tonia, Jennifer, Ethan, Jimmy, Edith, Jay Jay, Carmen...and lots of parties!!! Also Jay Jay will be baptized at the end of the month. Jimmy's sister (and maybe her family) is coming up to stay with us.

Jimmy was happy to be home but not so happy with the Clemson game. Overall we are all doing well. Hopefully the kids will stay healthy and the weather will begin to feel like Fall.

You can tell I had a good night's sleep. My moody messages come when I am sleep deprived. God bless, Leslie

Friday, September 30, 2005 1:13 PM CDT

Hi Friends!

It is Friday afternoon and we are supposed to be on our way to Clemson to spend the night with Liz and then go to the Lauren's Hope Foundation 5K (Lauren also has MPSIII)in the morning BUT Izzy is running fever. She didnt sleep well Wednesday night and last night was horrible. Jimmy is in Argentina this week but will be home tomorrow morning.

Right now she is on a Tylenol high and feeling well enough to play. Jay Jay was going to spend the night with my parents tonight so Izzy and I could go to Clemson. Mom went ahead and took him to her house to keep him well and to help me out. I am praying for a good night tonight.

PLease keep the family of Jillian Fitzpatrick in your prayers. She was the 5th child with Sanfilippo Syndrome to be transplanted. She passed away this week. Yet another life lost to this disorder.

I am so sorry to all my dear friends that I have not called since I have been home from Colombia..ALison, Jennifer, Ann Marie, and all my friends from playgroup. I havent forgotten you, just trying to catch my breathe. Love you all, Leslie

Monday, September 26, 2005 3:16 PM CDT

I just read on the Bennett's website that little Asher passed away yesterdayat Duke. We met Asher and his mom and big sister one day while we were in a waiting room at Duke. He was a big "healthy looking" baby boy with a huge smile. Reading about his death hit me hard. I feel so badly for his family. Asher was just a year old and had MPSI or Hurler's syndrome. He was transplanted in August I believe. PLease pray for his family. Leslie

Saturday, September 24, 2005 11:20 AM CDT

Hi friends

Well it is Saturday again and I've found a few minutes to write. Things are still quite busy. We took Jay Jay to the pediatrician here and his weight is now on the charts. YEAH!!! He is up to 18 lbs. But now we have a million more tests and things to complete for an international adoption...more blood work, early intervention evaluations, PPD test, hearing screening, etc. But the doctor thinks he looks pretty good. He is tiny bit delayed with his fine motor skills but his OT (me) is not concerned.

Izzy is doing OK. When I see people out and about and they ask me how she is, I really dont know what to say exactly. She has been pretty "healthy" as far as not getting sick for a while. BUT she has Sanfilippo and there is not a day that goes by that you dont know it. She has become extremely hyperactive and I wonder if this is the peak or if it can get worse. We are lucky that she is sleeping pretty well but when she is awake I am pretty much constantly on the go with her. Jay Jay is really pretty easy, he can play by himself at times, and is generally very content but sometimes I have to protect him from Izzy. Again I will say that she is not malicious and would never intentionally hurt him but she can be rough.

It is very frustrating, this disease, because no matter how much time you invest trying to teach her, discipline her, etc the disease always wins. I cant beat it. It is destroying her cognitively and I cant stop it. Izzy has moments of true confusion (the dementia). Sometimes at night she doesnt even know me and Jimmy. SOmetimes I am so exhausted from picking up after her, wrestling her to change her diaper, trying to sooth her through an unexplainable tantrum, trying to get her to cooperate to walk to the car, and so forth that I dont know how I 'll find the strength to keeping fighting the effects of Sanfilippo. But I tell myself "one day at a time."

This may sound negative but this is the really of this disorder. Not only does it slowly take your child away but it does so in the cruelest of ways.

Overall we are doing well. We are grateful to have a house, Jimmy's job, a wonderful support system, and so much nore. We know that there are people dealing with this disorder with much less in the way of resources. We hope to help these people in some way as soon as we establish our foundation. God bless, Leslie

Saturday, September 17, 2005 9:09 PM CDT

Hi Everyone!

We are all doing well. Izzy still loves Jay Jay but doesnt always understand when she is not gentle enough with him. They are taking their baths together now and it is so cute to watch them try to out splash one another.

Jay Jay is doing just great and Jimmy has gotten him sleeping much better at night. I hardly have time to do much of anything these days especially get on the computer. It takes me hours to check up on all our friends with sites now as we have added some new ones from our adoption adventure.

We are truly blessed with great neighbors, friends, family, and through our children we keep meeting more and more wonderful people.

I KNOW we have to update the pictures but that is Jimmy's area of expertise so fuss at him please. If you know Izzy you know that it is hard to keep her still long enough to get a good picture (especially with the delay on our camera), so we dont have many with both of them where she is facing the camera. I will ask him to put some new ones on here.

We had a great but very busy day (every day with Izzy is a busy day.) We went this morning to see Audrey play soccer and Izzy really watched her on the field and yelled her name. Audrey is such a sweetheart and is so good to Izzy. Izzy thinks Audrey hung the moon. Then we ran errands and played outside and played inside and then repeated that whole cycle a few times. My mom keeps saying I need to gain weight but it is impossible when you are keeping up with Izzy all day.

Jimmy went to the Clemson game with his brother. I think they lost to Miami. Tomorrow Jimmy has his first soccer game on a team in Charlotte. This should be interesting because apart from the 30 minutes he spent playing with Audrey the other night I dont think he has played soccer since I met him (that was 10 yrs ago.) I am sure we will all get a good laugh if nothing else. Jimmy can make almost anyone laugh, especially at himself. Thank you Lord for giving me a husband that makes life a comedy, even in our circumstances.

Have a great rest of the weekend. God bless, Leslie

Monday, September 12, 2005 11:46 AM CDT

Hi Friedns!!

Yes we are all home and life is BUSY!!! We knew that would be the case and are really enjoying our chaotic life. Jay Jay wraps us around his little finger a little more each day. Izzy loves him so much but we have to be very careful with her at times because she can be a little rough. They say that kids with Sanfilippo are aggressive but it is more that they are unaware of their bodies and kind of throw themselves around and if youre in the way ...watch out. Their is not a malicious bone in Izzy's body..stuborn YES, Malicious NO.

Jay Jay also loves his sister. He thinks she is very funny and tries to show off his cruising skills to her. He'll crawl up beside her and make alot of noise and watch her to make sure she's looking as he pulls up to stand. Then he smiles and laughs if she is looking.

As for Izzy we are seeing some progression of the disorder. She seems to have increased hyperactivity and the urge to chew is getting stronger. We have ordered some chewy tubes like her friend Sam in Colorado has. These are safe to chew on...cant hurt her teeth or break off.

Izzy had a tantrum at the park today because she didnt want to leave and she wanted to stay and play with her friend Ethan (and his truck.)It was not a pretty site and Im sure people just thought what a brat, but I know how confusing life can be for her and that she often cant be reasoned with. I just have to try to smooth things over and distract her.

Yes this disease is horrible and it has robbed us of "normal" three-yr-old interactions. We still morn what could have been at times. Seeing kids she has grow up with that have passed her in development and understanding is hard. It is not all rosey. As much as we love her and are learning to accept parts of this disorder, we still long to really talk with her, share things with her, hear all the why questions, etc. BUT we look around and see how lucky we are to have a home, a family, a support system. Jimmy and I have talked about the fact that their must be many displaced children from Katrina with special needs. Children with autistic disorders that need their routine, who are even more confuseed and now traumatized by this. We pray for these families and thank God that we can provide stability for Izzy.

Hello to all our friends that we met in Colombia. Hoping you will have a quick journey through the Colombian courts so you can get home with your new children. A thousand times thank you to everyone who helped us get Jay Jay home. Everyone who watched Izzy, fed the dogs, called Terminex, got our mail, prayed for us, met us at the airport, and the list goes on and on. We love you all. Leslie

Tuesday, September 6, 2005 3:31 PM CDT

YEAH!!!!!

Jay Jay's AMerican Visa is ready!!!!
Jimmy is on his way back to the Embassy to pick it up.
We are coming home tomorrow!!!!!
Cant wait to see Izzy and all our family and friends.
God bless, Leslie

Tuesday, September 6, 2005 11:26 AM CDT

Hi Everyone!

We went to the US Embassy this morning and will hopefully have Jay Jay's visa in our hands around 4:00. If this happens we will be leaving EARLY in the morning to go home. We will arrive in Miami around 12:30 and go through customs where Jay Jay will become a US citizen.

Jimmy's sister Carmen and her kids will meet us at the airport so we can spend some time together. OUr flight to Charlotte leaves at 5:30 and arrives at 7:40. YIPEEE!!!!

Thank you for all the sweet birthday messages!!!!Leslie

Sunday, September 4, 2005 8:56 PM CDT

Hi Everyone!

Well I never imagined spending my birthday in Colombia but SURPRISE SURPISE!! It has been a nice day starting with a beautiful fruit plate with a candle, a round of Happy Birthday and a handmade card from the staff here at the hotel.

The most touching moment came when Yamile, a lady here at the hotel who cleans the rooms and helps with the cooking gave me a present wrapped in flowered paper. It was a necklace and earrings. I was so touched and I didnt know what to say because I should be giving to her not the other way around. She and I talk when she cleans the room and have shared much with my limited spanish. I have learned much more spanish being here, especially the week without Jimmy. I really like the ladies here and will definately miss them. Anyway, one day I asked her if she had any children and she told me two but one had died. Then the other day she told me that her little girl had gotten a shot of penicillin because of a high fever and hours later she died in her arms. She was allergic to the penicillin. We cried together and I told her about Izzy's disease. Her baby girl was three years old when she died. She told me that the day before she was running around playing and full of life. SHe would be six years old now.

She works half the week here and then wherever she can find work in homes as a maid. I dont have the words in spanish to tell her how much her gift meant to me and I dont want to use Jimmy to translate because it is between she and I. Thank you God for daily lessons in life and love! Three more nights and two days until we board the plane home to our baby girl. God bless, Leslie

Saturday, September 3, 2005 1:43 PM CDT

Hi Everyone!!!

Well Yesterday was quite a day. First we went to the town called Chia where Jay Jay was born to change his birth certificate. Then we dropped Jimmy off at the emergency room where he passed a kidney stone and was loaded up with pain meds. While Jimmy was still in the hospital, Jay Jay and I went to get his Colombian passport and then finally to the US embassy doctor for his medical report. It was quite a busy day.

Jimmy says that he gave birth and is very proud of the stone that they captured. We are wondering if we will have to do more paperwork to bring the stone back into the country (passport, visa, etc.) A CAT scan showed 4 more in his kidneys so we are praying that they stay put for a few more days. Jay Jay is fine and so incredibly mobile. We will have to put up so many gates to confine him in our house.

We were able to see Izzy this morning on the webcam with my family and she looked so pretty in her Clemson orange. We are scratching out X's on the walls here to count down our return home. Can't wait!!! God bless, Leslie

Thursday, September 1, 2005 10:31 AM CDT

Good morning

I went this morning to the little town where Jay Jay was born to change the birth certificate and the registrar was not there. This puts us off until tomorrow with all of our appointments for today. In other words we will not be able to come home until Wednesday.

Another glitch but at least we know we can get home by Wednesday. Jimmy is still in the air on his way here and I am sure he will be disappointed as he pictured himself at home on SAturday watching the Clemson V Texas A&M game. RATS!!!

Jay Jay had a good night last night and I got some sleep. ANother mom here gave me Mylecon drops and they really seemed to help his tummy during the night.

Hopefully things will go better tomorrow. The US Embassy is closed on MOnday for Labor Day so we cant get his Visa until Tuesday morning. I am thinking maybe we could catch fthe afternoon flight to Miami on Tuesday and stay the night with Jimmy's sister Carmen. Yes Carmen I am just inviting myself but I know how hospitable you are. This would allow Jay Jay time to spend with his cousins in Florida (oh and get us out of this room a day earlier). Just a thought.

I cant wait for Jimmy to get here. SInce we will be here longer maybe we can do some fun touristy stuff here in Bogota. We are planning to get together will Jimmy's sister-in-law, Lizzie, tonight and have dinner. SHe was out of town for a few days. OK. I guess I'll go. Jay Jay is playing in his crib right now and being very quiet. MAybe he will drift off soon. Dana I hope you are having fun on your trip. Love to all, Leslie

Wednesday, August 31, 2005 7:19 PM CDT

Well, I put an entry in earlier but I must have done something wrong. GOOD NEWS!!!We have our sentencia. Jay Jay is legally ours. I have three appointments tomorrow to change his birth certificate, the embassy doctor and something else. Then we need the US visa for Jay Jay to enter the country and we will be finished. We could be coming home as early as Saturday and as late as Wednesday. Finally we are nearing the end of this process. Jimmy is flying in tomorrow afternoon. I cant wait to see him. It looks like we will all be coming home at the same time. Yippee!!! Thank you Lord!!! Leslie

Tuesday, August 30, 2005 8:04 PM CDT

Well it is Tuesday evening and still no information about our status in the COlombian courts. Jimmy is coming back on Thursday and I will be so happy to see him. I am beginning to feel lonely and homesick. I especially miss snuggling with Izzy at night.

Jay Jay is doing well but is waking up several times through out the night. He is becoming very spoiled with this because we are in a hotel and I cannot let him cry without waking up everyone...he is learning that crying in the night is rewarding for him. AFter nine months in an orphanage I guess he has some spoiling coming his way BUT I still need sleep. We will have to work on this when we get home. Izzy has always been such a good eater but Jay Jay is a different story. Now I know how my friends with picky eating children feel. We need to pack some weight on him so he can fit into 9 months clothes (he is 10 months). Today I put him in 9 months pants and he crawled right out of them. It was really funny.

Tonight I have checked on all the Sanfilippo kids that have internet sites. As much as I wish their were no other children with this disease, it helps to know we are not the only ones fighting this battle. God bless, Leslie

Tuesday, August 30, 2005 8:04 PM CDT

Well it is Tuesday evening and still no information about our status in the COlombian courts. Jimmy is coming back on Thursday and I will be so happy to see him. I am beginning to feel lonely and homesick. I especially miss snuggling with Izzy at night.

Jay Jay is doing well but is waking up several times through out the night. He is becoming very spoiled with this because we are in a hotel and I cannot let him cry without waking up everyone...he is learning that crying in the night is rewarding for him. AFter nine months in an orphanage I guess he has some spoiling coming his way BUT I still need sleep. We will have to work on this when we get home. Izzy has always been such a good eater but Jay Jay is a different story. Now I know how my friends with picky eating children feel. We need to pack some weight on him so he can fit into 9 months clothes (he is 10 months). Today I put him in 9 months pants and he crawled right out of them. It was really funny.

Tonight I have checked on all the Sanfilippo kids that have internet sites. As much as I wish their were no other children with this disease, it helps to know we are not the only ones fighting this battle. God bless, Leslie

Sunday, August 28, 2005 7:57 PM CDT

Hi Friends

Well another day has come and gone here in Bogota. I am getting restless and hoping for news tomorrow. The family that got here a week before us is going home tomorrow morning. I am really going to miss them but happy that they are going home to start their lives together with their new baby girl. They have definately made our stay here more enjoyable.

They were scheduled to leave last Thursday but their flight was canceled due to Katrina. I am praying for the folks in New Orleans. It sounds like this storm is going to be pretty devastating for them. Hopefully lives will be spared.

These storms again remind us that as much as we try to control this world, we are not in control. We just pray for God's will to be done and the strength to deal with the results. SOme of us went to a little Catholic church this morning. Everyone in the mass was American because it was in English. There are many people here (alot of them American)working to better the lives of the underprivelegded. It is humbling to see their selflessness.

Thanks to everyone for your words of encouragement and prayers. As much I am enjoying Bogota, I miss my little town in South Carolina and all my friends and family that make it home. I don't know how Jimmy travels as much as he does. He is more adaptable than I am. God bless us all tonight and especially the people in the path of KAtrina. Leslie

Friday, August 26, 2005 8:06 PM CDT

Hi Everyone,

It is Friday and I was hoping we would hear something from the courts regarding our paperwork and progress towards getting home. Unfortunately that did not happen today so I will pray for good news on Monday. It is nice here but I miss Izzy so much and want to be home with her and Jay Jay.Her life is so precious that it is so hard to miss even a day.

I am glad to hear that Izzy is still enjoying her new school but wish that I was there to see her wearing her backpack as she walks out of school...so cute! I hate MPS and sometimes get so angry about her having this. I believe in eternal life through Jesus Christ but I am selfish and I want her HERE WITH ME. Why do parents have to worry about losing their children this way? Why do I have to start every morning remembering that my child has a terminal disease? That I will have to live without her one day. God I hate this disease. I hate it. I wish that I could freeze her where she is right now.

Please pray that our paperwork will move quickly and we can all be home. Jimmy will fly home tomorrow and will be with Izzy for several days. We are waiting for news from the courts to decide when he will come back to Bogota. Jimmy hasnt seen Izzy in 3 weeks and has never been away from her for this long. I think he will have a melt down like I did when he sees her. AGain thank you mom, dad, Dana, Liz, and everyone else who is taking care of her while we are gone. God bless, Leslie

Wednesday, August 24, 2005 12:19 AM CDT

Hi Guys!

Well I am back in Bogota and yes I am wearing sweaters. It was a little warmer yesterday but nothing like August in the Carolinas. Jay Jay is doing weel (still in one piece) after his week with Daddy. He is actually doing better than when I left because now he is taking Zantac, eating much more, and just a happy little guy. He is really into making noises with his mouth clicking his tongue, rasberries, and sucking his teeth. He is still very much on the move. All of these things we are thrilled about. He is such a beautiful child.

Jimmy just left for the airport and will be spending a few days in LAs Vegas for a trade show. Then he will be back in Rock Hill to spend some time with Izzy and then HOPEFULLY we will be getting everyone home soon after that.

I miss Izzy but know she is in good hands with my family and friends..we are so blessed to have such a great support system! I will try to just enjoy my time here alone with Jay Jay (his time to be the only child) and being with the wonderful families and staff here in the hotel.

I know that Colombia doesn't have the best reputation in the US as far as travel BUT it is such a special place. It is beautiful and the people are even more beautiful and their culture and energy is so uplifting. It is a country of colors, flowers, history, wildlife, culture, intense patriotism, and a unique beauty. Bogota is a city of 6 million people so it is busy and full of life like any big city anywhere in the world. I will always love Colombia for giving me my husband and now my son.

My uncle Frank has begun meeting with the lawyers to set up our foundation with the IRS. We will get moving on this when we all get home. LAst Saturday Sports Clips had another fundraiser for Help Isabel. Thank you to all the ladies at SportClips!

I hope that everyone is doing well. Frankiepants was discharged last week and seems to be doing well as an outpatient. Hip Hip Hooray! JAy Jay is sleeping right now so I will try to catch up with all the kids that we follow and pray for on the internet. Kisses to all our friends and family and special blessings for our MPS family around the world. God Bless, Leslie

Sunday, August 21, 2005 3:08 PM CDT

Hi Friends!

Well, tomorrow is my last day at home before leaving to go back to Bogota. I am so glad Jimmy has so many frequent flier miles so we can go back and forth, otherwise it would be even harder.

I am so impressed with my husband. He has turned into Mr MOM. It sounds like he and Jay Jay are doing well. I know it is hard for him to be away from Isabel but I am glad he and Jay Jay have had this special time to bond. Fathers dont often get this much alone time with their kids especially when they are so young. I am so proud of you honey!!!

We keep in touch via email, phone, and instant messenger. One of the families in the hotel has a webcam so Izzy and I get to see and hear Jimmy and Jay Jay. Technology has helped our family so much in the last few months. All the support from this website, contacting other MPS families, and now keeping our family connected during the adoption process.

Izzy is doing well. We went to the pool yesterday. She kept wanting to be outside and unless you were in water yesterday, you would melt. WOW it is hot. It is in the 60s most of the year in Bogota. Almost like Fall all the time. It can get pretty cold at night though. I will be glad to get back to the mild weather but of course leaving Izzy again will be hard.

I hope Jay Jay remembers me! I love him so much and I know that everyone else will too. Adoption is truly a miracle! One of the best parts of our trip has been staying in the hotel for adopting families and getting to see families being made.

I feel so blessed to be Izzy's mother and now Jay Jay's too. I pray that they will have many great years together as brother and sister. Thanks for all your kind words at church and over the internet. I hope that you can share in our joy as you have shared in our sorrows. Life is unpredictable and that is what makes it so beautiful. Treasure every moment. God bless, Leslie

Thursday, August 18, 2005 2:33 PM CDT

Hi Friends!
I flew into Charlotte Tuesday night and will fly back to Bogota next Tuesday. I could hardly contain my emotions as the plane landed. I was missing Isabel so badly that I really had to try not to think about her too much or I would have been crying all the time.

It is so true that when you are away from her the reality of her disease is so frightening (as my family tells me when they dont see her for a couple of days). For me I think it is that I don't want to be away from her for a day and I think about having to live one day without her. I dont know how I will do it. To see her now, she is so full of life, so beautiful and loving. It has been months since the diagnosis but I still can't believe she has this. It still feels like a nightmare BUT when I am with her it is better. I dont think as much about it and just try to enjoy her.

Jimmy is in Bogota with Jay Jay. I hated to leave him but needed to be here with Izzy. Her first day at her new school was yesterday. I stayed with her so she could get used to it. Today I left her and her teachers said she had a great day. I was so happy. It is a really sweet class with amazing teachers. Thank you LORD!

Jimmy says Jay Jay is doing well. He is sitting better, babbling more, and sleeping better at night. He took him to a gastroenterologist today for the reflux. I havent heard back from him yet.

I just know that Izzy is going to be so in love with Jay Jay. My fear is that she is going to think he is her own personal living baby doll. My mom tells the story of me at four-years-old walking into the room carrying my newborn baby sister. I had decided to get her out of her bassinett. YIKES!

Anyway, we are all doing well. Ready for everyone to be home and all together as a family. Love to all, leslie

Saturday, August 13, 2005 10:26 AM CDT

Hi Everyone!

Well we have been pretty busy here in Bogota this week. We received Jay Jay on Monday, toured the mother's home on Wednesday(where we talked with the expectant mothers), met with the doctors and went to the Notaria on Thursday, and toured the orphanage and met with the lawyer yesterday. We got to meet the people who took care of Jay Jay since he was born and saw where he spent his days. Pisingos is a nice place but every child deserves to grow up in a loving home. It is just not the same. It has been a very emotional week.

We knew that Jay Jay had pretty severe reflux but are learning that it is still a problem. He loves to eat but also experiences pain afterwards= alot of crying. He is also cutting two teeth right now so he has periods of fussiness but we have done all this before. He is a very curious and loving little boy. He can crawl and loves to pull up to stand but the reflux causes him to arch his back to relieve pain and so his sitting still needs work (falls backwards). He absolutely loves riding in the car and looking at everything. Until this week he has never been off the grounds of the orphanage since he was born so he is taking in everything.

He has met his tio Pedro and tia Lizzie and they are very loving and sweet with him. We may go to the Botero museum today with them.

We are staying in a hotel just for adopting and it is amazing to see families being built through adoption. We have seen a young couple who adopted three brothers (11,9,and7), a hearing impaired family adopt a hearing impaired 9 yr old boy, a beautiful couple from Miami with there new 3 month old daughter, and a Dutch couple with their new 20 month-old son. These are just from the hotel. We have met other families adopting from Colombia for the second time from the US, Sweden, and France. It is wonderful to see especially the older children bonding so quickly with their parents. With adoption just like giving birth you dont know exactly what you will get. You just trust that God is hand picking that child for you.

We are missing Isabel terribly and I almost cant look at her pictures...it makes me too sad. I may be coming home next week to be with her and then come back as Jimmy goes home for a week. It is hard to be so far away from home with a new baby but as I said we are at a wonderful place. The Dutch family that has been here for almost 7 weeks is leaving today. We pray that we will not be here that long. Missing all our friends and family at home. HAPPY LATE BIRTHDAY DANA!!!God bless, Leslie

Wednesday, August 10, 2005 9:29 PM CDT

Hi Everyone!

We have been without internet since Sunday until now. In February, before we had ever heard MPS, Jimmy and I began paperwork for adoption. I have always wanted to adopt and we finally got serious about it after Christmas. We chose Colombia since Jimmy is Colombian and spent his first 17 years there. Jimmy does everything fast, so he wasted no time doing the paperwork once we decided to go for it. Then the adoption went to the back of our minds when we learned about MPS and began our whirlwind of tests, diagnosis, fundraisers, etc.

The average wait for a Colombian adoption is 12-18 months but since we are considered a Colombian family we were told it wouldn't take as long. So we thought perhaps after Christmas we would heard something. Just days after we decided not to pursue a stem cell transplant for Isabel, we received a call from our adoption agency. "Congratulations! You have a referral for a 9-month-old baby boy in Bogota, Colombia." We were shocked! How could it come this fast? We had agonized over our decision not to transplant and were ready to focus on enjoying Izzy's life everyday. BUT for the first time in months we had good news, something to be joyful about, and something sure to improve Izzy's life....a little brother.

So we are in Bogota with our son waiting to go through all the red tape so we can bring him home and start our lives as a family of four. Colombian adoptions require a longer in-country stay, the average being 3-5 weeks. Isabel is at home with her Gandy and Pop Pop, Dana, Liz, John, and everyone else who is loving and caring for her while we are gone. Although we took her to Bogota last November, we felt it would be better for her to be at home with all her things and her routine than for her to be stuck in a hotel for weeks.

We did not want to anounce our referral to everyone until he was in our arms in case something went wrong. We are praying that our paperwork will move through the courts quickly so we can get home. It was very hard to leave her. One of us will make a trip home while we wait but for now we are both required to be here.

OUR SON: We named him James William Jurado and are calling him Jay Jay. He is an angel. Always smiling and laughing. He is very content and has bonded with us quickly. His smile can heal a broken heart. God has truly blessed us with this baby boy. He is not ours on paper yet but he is our son in our hearts and minds. I will try to put his picture on the photos site. God bless from Bogota, Colombia. Leslie

Sunday, August 7, 2005 7:33 AM CDT

Good morning!

I dont know about you guys but recently I have had some problems pulling up this site from home. Yesterday I could open it but could not get access to type in the journal.

Well Jimmy and I are going out of town. In fact we are in the Miami airport right now. Izzy is at home with her Gandy and Pop Pop. Yesterday Izzy was running fever and vomiting so we were not feeling good about leaving. When I got in bed with her around 3:00am she didnt have fever. I just spoke with mom and she says she is doing well. I will pray for her to continue doing well.

We left Izzy this exact time last year for about a week and it was very hard...on us, not her...she is happy as she can be if she has her family and Dora/Elmo videos. But Izzy picks up every virus out there and sicknesses like this have been pretty common for a while. This past December she had to miss her aunt Liz's wedding because she had a nasty stomach bug.

Anyway we are already missing her and I saw Jimmy tearing up in the car as we were leaving for the airport this morning. I already had my cry Friday night.

Anyway, we are gone for a good reason. I will update tomorrow or Tuesday..we will have limited internet access. God bless,
Leslie

Friday, August 5, 2005 8:35 AM CDT

Hi All!

Izzy seems to be feeling much better. YEAH!!! It makes such a big difference in her behavior when she feels bad. I guess that is true for everyone.

The IEP meeting went well. Izzy will start school on Aug 17. As I said before she will have wonderful teachers BUT we will sure miss everyone at School Days. Mrs Adams, Mrs Alexander, Mrs Nipe, Mrs Parrot, Dawn, and everyone else who has been so good to Izzy over the last year. You are GREAT!

We may be going to the water park at Carowinds later today with Aunt Suzie and cousin Andy. I can't believe it is August and time for school to start again. I will not be going back to work this year. I am so going to miss all the amazing teachers, assistants, and especially Sally and Kathy. I have realized that my plate is full being a mommy and wife and it looks like it will be getting even fuller.

Enjoy this steamy hot day! God bless, leslie

Wednesday, August 3, 2005 10:29 AM CDT

Hi Everyone!

Well, we didnt make it to Carowinds yesterday as planned. Izzy is struggling with diarrhea again. Sounds like no biggie but for her it is always bad because she gets such terrible diaper rash (and yes I've tried every cream known to man) that she screams and tries to get away everytime we change her. It is not fun!

Since we have been home from Duke she has been so happy and healthy so we are a little down that she is not feeling great= not sleeping great. I think sleep issues is about the cruelest part of this disorder because when youre facing a chronic, progressive disorder you need the clarity that only a good night's sleep brings.

Anyway, we are fine, just wish Izzy was feeling better so we could do more fun things with her like the pool, Carowinds, etc. Hopefully it will pass soon.

Izzy's IEP meeting is tomorrow at Central Child Development Center downtown. It is a nice school. This meeting will get her into the special needs program and she will be in a preschool class and receive speech therapy. Her teacher, Mrs Ard, is awesome and I have known her for a long time. As much as I know and trust these professionals I so wish Izzy would not need them BUT she does. I have seen many parents struggle with their own issues with their children needing special services..most often denial and anger..I and know that this only hurts the child. Well we are not in denial but still wish we would wake up one day and MPSIII would no longer be a part of our lives.

We do still feel like we made the right decision for Izzy regarding transplant. Still praying for better treatment options, slow progression of the disorder, and peace to trust God each day. God bless all our friends new and old, near and far. leslie

Monday, August 1, 2005 9:36 AM CDT

Good morning everyone!
Things are fine with us. Unfortunately Isabel has a runny nose again but other than that is doing well. Friday night her cousin Olivia came over to play, then Saturday night my friend's two-yr old little girl, and last night her cousins John and Andy so she had a fun weekend. Also her aunt Lizzy is home and that is always a good thing. We may try to make it up to Carowinds this week while the weather is mild.

We had fun hanging out at SweeTreats on Saturday for the fundraiser. Thanks Sara, Lisa, and Sally. Unfortunately the weather was yucky and probably kept some people away. I think they did pretty well though. Izzy and I had fun hanging out and ate some chocolate peanut butter ice cream. Their ice cream is so smooth and creamy. YUM!

It looks like we may have an IEP meeting this week to get Isabel into the public schools. The public preschool here starts Aug 17 I believe.

It sounds like Lindsey Efird is doing better and Frankie is holding his own too. Maybe they will be released from the unit soon. Thanks for the prayers. God bless, Leslie

Saturday, July 30, 2005 7:08 AM CDT

Good morning!

Izzy is doing great! Her nose is running a little this morning but hopefully it wont last. This is the first sign of any congestion in almost a month. That is great for her.

Her cousin Olivia came over to play last night and they had a good time. Olivia will be 1yr next Saturday. She is walking pretty good so she and Izzy were chasing each other around. Izzy makes two of her so it is funny to see them standing beside each other.

Fundraiser today at SweeTreats!!!!!!!

15f all proceeds all day will go to the Help Isabel Fund. SweeTreats is in the Baxter community in Fort Mill. They have coffees, treats, and ice cream. It is a very cozy place and reminds me of Central Perk from Friends. We will be up there this morning around 10:00.

This afternoon two or three of my friends from OT school are coming up to hang out and eat dinner. My friend Ann Marie has a 2 yr old little girl so Izzy will have someone to play with while we hang out.

PLEASE say a prayer for 7 yr old Lindsey Efird in Albemarle, NC. Lindsey also has MPSIII. She had some rough days this week and may be nearing the end of her journey on Earth. You can visit her website at www.caringbridge.org/nc/lindseysmpsjourney. Her parents are Mark and Karen and she has a little sister named Hannah. God bless, Leslie

Wednesday, July 27, 2005 1:01 PM CDT

Hi All!

I was really frustrated last night when I finished a long journal entry only to erase it. URGGGG!!!!

Oh Well. Things are good. We are enjoying the rest of our summer. I think most of you know that we are not going forward with the transplant. This decision was difficult but in the end we feel at peace about it. The truth is we started questioning transplant as soon as we got to Duke and learned more details...risks, uncertainty of the outcome, Isabel's level of neurological progression, etc.

Instead we are living for today. We know that things can get much worse with this disorder but we dont want to waste what we have today, a happy, loving, and joyful 3 yr-old by sitting in a hospital, in isolation, or possibly never leaving the hospital. Again this decision is different for every family and level of progression of the disorder. We DO support families that are going through transplant.

So are efforts are focused on loving and enjoying Isabel, providing the best life in whatever time she has with us, raising awareness of Sanfilippo and other MPS disorders, raising funds for research for a cure/treatments,and supporting other MPSIII families.

Izzy is doing well. I am a little scared to say it but she still has not had a runny nose since we started the soy. Sleep is also pretty good with an occassional bad night. She is playing alot, bossing the dogs around, enjoying her swing set, playing in water and the pool, and forever hiding stuff behind our TV. If we are missing a shoe, cell phone, remote, wallet, almost anything...we have learned to look behind the TV first.

Monday night my 6-yr-old neighbor Audrey (Izzy's hero) brought her friend Maggie over to play with Izzy. They were having a good ole time when Maggie asked "Is Izzy going to have to go back to the hospital?" I said "Well it doesn't look like she will." Maggie smiled and said "Good, cause she's having lots of fun." Maggie you said it all!

God Bless, leslie

Sunday, July 24, 2005 3:05 PM CDT

Hi Everyone!

Sorry I have not posted since Friday. Saturday we had a life changing experience when we went to Fountain Inn, SC to meet the McCraw family- Andy, Cindy, Lauren, and Cayden. Lauren is 8 and also has MPSIII. You may have visited her site at www.laurenshope.org. Lauren is a beautiful red-head who laughs and smiles and speaks to you with her eyes. Cindy told me weeks ago on the phone that Lauren is like being in the presence of an angel and she is right. Lauren is all that is pure and good.

It was good for Jimmy and I to see a family this close to God and each other even as this disorder takes its toll on their daughter's abilities. This disorder has not torn them apart it has made them even stronger. We are amazed at their 5-yr-old son Cayden. He is the most caring and selfless 5-yr-old I have ever met. We were not surprised that Isabel loved playing with him and laughing at him but we were surprised at how Cayden worked so hard to make her laugh. His parents told him that Isabel has Sanfilippo like Lauren and it was like he knew how much her laughter means to us. The McCraws have adapted their house to fit Lauren's needs. They shared their knowlegde and tricks from the past. They said watching Isabel was like going back in time with Lauren. They talked about sleepless nights, Lauren's wandering, and even that Lauren spoke very loud like Izzy. Perhaps Isabel's future will be much like Lauren is now and the McCraws let us see that it is OK. The fear of the unknown is more scary than reality.

Thank you McCraws!!!!!Cindy I know you have been praying for peace for us and I think you gave it to us. We left your house with HOPE! Hope that this disorder will not ruin our lives, hope that we will all become stronger in our faith even if and when this disorder progresses, and hope that together our families will unite to find a cure for this disorder. I guess you could call it "Lauren's Hope."

I drove on to Clemson and we spent the night with Liz. Jimmy came back home because he had to leave for Honduras this afternoon.

For those of you that have been following Frannie King, the doctors and her family have decided to take her off life support today (Sunday July 24) at 4:00pm. Please say a prayer for little Frannie as God welcomes her home. Her family has been financially ruined by her extensive medical care and the secondary effects of having one parent living in the hospital for 7 months. They are asking for donations to help with the funeral and medical bills. This family has been through so much and have inspired people around the country to follow Christ through their website. Please visit them if you have time

www.caringbridge.org/nc/frannie

God bless,

Leslie

Friday, July 22, 2005 8:54 AM CDT

Good morning everyone!

For all of you in the Rock Hill area:

*********CUT-A-THON FOR ISABEL************

Sports Clips at Manchester Village is having a fundraiser for Isabel tomorrow. All day they are giving $5 of every haircut to Help Isabel. We are very excited and grateful for this support.

THANK YOU SPORTS CLIPS!!!!

Also the cookbooks are selling fast so hurry up and get yours. IZZIE'S INCREDIBLE EDIBLES. Go to Help Isable site for more info. All proceeds go to Help Isabel Fund.

Please continue to pray for little Frannie King up at Duke Children's Hospital. Her mom updated yesterday that she has taken a turn for the worse. www.caringbridge.org/nc/frannie

We are doing well. We ate dinner with our minister and his wife last night and talked about making decisions and not having guilt. Thank you Joe and Izzie for your love and support through all of this. We thank God for you!

We are still leaning away from transplant. This makes our fundraising effort shift more towards funding research to find a cure for Sanfilippo Syndrome and supporting MPS families that are struggling financially. Please know that all money will be used for these purposes if not used for a transplant for Isabel. As we give Isabel her soy extract everyday we continue to pray for treatments and/or a cure to be discovered to help her and all children with MPS. The problem is that because this disorder is rare there is not alot of funding for research. The statistics maybe 1 in 70,000 for MPSIII but for our family and many others it is 1 in 1 or 100%.

God bless everyone who has helped us and continues to help us. Remember that we want to raise awareness and funds. If you have nothing to give you can always tell as many people as you know about Sanfilippo Syndrome. Tell them about Isabel, Frankie, Sam, Lauren Reed, Lauren McGraw, Jessie, Andrew, Olivia, Elisa, Jessica, Jon and Jason, the Beg Girls, and Ciarra and Hunter Bennett and all the other children. Send them to the sites. These are real children and real families.

I know I went on and on today. I better go get some things done while Izzy is at school for the morning. God bless, Leslie

Thursday, July 21, 2005 9:51 AM CDT

Hi Everyone!

I just really wanted to say thank you to all of you out there in cyberspace. Please know that we read all of your comments and emails and they give us much comfort. As you know we have been struggling in the last few months with first learning about this disorder, deciding to have Isabel tested, waiting for 6 weeks for test results, getting the results that Isabel indeed had MPSIII, shuffling to fight insurance, get to Duke, get publicity, have fundraisers, and then wham...the dilemma..."Is this best for Isabel?"

Needless to say it has been a whirlwind. Our lives have been turned upside down. Nothing looks the same, feels the same, is the same since the beginning of March. The burden is at times suffocating. BUT God has used all of you to carry us through this. With all of this we still laugh, still enjoy our lives, and are amazed by the goodness of people. You make us want to be better people. THANK YOU!!!!
Leslie

Tuesday, July 19, 2005 12:00 AM CDT

Hi Everyone!

Izzy and I are having a great week so far. She went to school yesterday morning for a few hours and of course was happy to be with Mrs. Adams and all the other teachers and children. We played outside (in the shade, HOT!!) and just enjoyed being together.

I felt blessed from the moment I found out I was pregnant with her and have treasured her everyday of her life but not like I do now. I heard someone saying how stupid that song "Live like you were dying" is a few months ago. He said those are "stupid lyrics." He wasnt talking to me I just overheard him so I couldnt really comment. Well there is alot of truth to the words in that song. I look at Izzy and want to treasure her every minute, every second. I love to see her enjoying life. Right now she loves the water hose outside so we have spent alot of time washing cars and wetting the dogs.

She loves to be outside just playing and exploring. I want to sqeeze in so much while she can do these things. Maybe the genistein will slow down the progression or new research will come out but for now I am living like today is the best day of her life. I sit and look at her and think how incredibly beautiful she is. I love every inch of her and have her little body memorized. I love her smell and the weight of her on me when we are cuddling. I want to soak in all these sensations for as long as I can.

Dont get me wrong Isabel is not nor has she ever been an "easy child." SHe has taught me patience that I never had before. She takes alot of patience and energy but gives back so much more with just one smile. The Sanfilippo has made her very hyperactive lately and she rarely slows down. I call her my personal trainer. I cant imagine loving another child as much as I love her. Have a wonderful day and love your family and friends. Treasure every moment. God bless, Leslie

Monday, July 18, 2005 7:04 AM CDT

Good morning everyone!

Jimmy and I went to Charleston for the weekend. It was our 5-year anniversary and a good excuse to escape our present circumstances. My mom and sister kept Izzy and it sounds like she had alot of fun. Thank you mom and Liz!

I did not look at the computer for two days but of course you can never get something like this off of your mind. We had plenty of time to discuss our dilemma, and did, but tried not to let it be the focus of the weekend.

So now we are home and with a little more clarity. We are once again leaning away from transplant for Izzy. Of course our focus is quality of life whether that is for ten years or 60. We want the best quality of life for her in whatever timeframe we are given.

Right now my child is happy and enjoys her life. She is delayed and more dependent that most three year olds but that is OK with us. With transplant the doctors tell us that the Sanfilippo can continue to progress for up to a year after transplant before a plateau comes. BUT where will she be in a year from now that we would be holding her there indefinately? The developmental pediatrician that has evaled these kids before and after transplant tells us that none of these kids are making cognitive gains after transplant, that they are stuck at or below their pretransplant levels.

If that were her fate then fine but to put her through high dose chemo, endless meds, at least a year of isolation (away from kids, outdoors, her dogs, everything she loves) and with possibly years of complications...seems unfair to her. Why are we doing this if the doctors cant tell us whether or not the Sanfilippo will come back after transplant? The bottom line is that this is a horrible disorder with a horrible prognosis so you want to take action, do something to stop it but we are not convinced that transplant is the answer for Izzy.

We support all families that have chosen to transplant. It is a very personal decision and I think we all know we want what's best for our kids. But that can be different from one child to the next based on the present level of the disorder.

Please continue to pray for us in our decision. This is where we are right now but have not given the doctors a definate answer yet. We know that some people may not understand our decisions but we know we have no one to explain to but God and our child. Leslie

Friday, July 15, 2005 7:42 AM CDT

Today, I would like to relieve Leslie of her writing duties. We have all spent many hours on Caring Bridge with Leslie and Jimmie as they travel this hard road. Both have graciously kept us informed not only of the facts and figures but also of the emotional struggles they are experiencing. For this, we are thankful and we hope that by their sharing we have taken a small amount of their burden on our own shoulders.

I will share with you, a visit that Leslie and Isabel made to our house Monday evening when Jimmie was on a late conference call and Issy was not ready for bed. I walked into the house after a church meeting and was immediately aware that Isabel was visiting. She exudes excitement and you better believe you can hear her. She was on the floor playing with one of her favorite cousins, my grandson Zack. She played with Penny, our most tolerant poodle, emptied a huge box of LEGO blocks on the floor and was thoroughly enjoying herself. You can tell by her smiles and her darting eyes that take in everything going on around her.

I brought out my laptop and told her I would find pictures of a baby. “Bebe,” she said, “bebe.” I found pictures of Granddaddy Bill with bebe Isabel which brought a big smile, then Grandmother Cathy with bebe Isabel, another smile, Aunt Elizabeth, Zack, Richard, and on and on. She thoroughly enjoyed the “picture” show. She especially liked the one of herself in front of her birthday cake and broke out in singing, “Heppy, heppy.”

As it was way past her bedtime and daddy was due home, the two girls packed up and headed home. She left a mess on the floor and a smile on mine and Nita’s faces. That my friends is a good, positive quality of life.

Bless you and your support,
Uncle Frank

Wednesday, July 13, 2005 9:36 AM CDT

Good Morning!

Jimmy left for Canada this morning and will be back Friday night. This is his first business trip since we received the diagnosis in May.

We are still struggling with our decision. I wish Isabel could tell me what to do. It is hard to make life and death decisions for someone else. We are praying constantly. Thank you for your prayers and support. God bless, Leslie

Tuesday, July 12, 2005 9:01 AM CDT

OK. We just got off the phone with Dr Prasad at Duke. We talked for about an hour. They consider Izzy eligible for transplant. He is going to call us back later about the status of finding a donor for Izzy.

We feel so torn. We do not know what to do. Yesterday I was pretty sure we would not do the transpalnt but now I am not sure. There are so many risks involved but this disorder is horrible. It will surely take our child away from us. What is better to let her live her life as long as she can without hospitals, endless meds, or to take a chance and risk losing her sooner or extending her life with no quality of life? God help us. I never imagined I would be in such a position. The doctors admitt that it is horrible place for the parents to be. All we want to do is protect her, but how?

We believe in eternal life. We know that life on Earth is temporary for everyone not just Izzy but while she is here we want her to be happy. Please pray for us. Leslie

Sunday, July 10, 2005 7:43 AM CDT

Good Sunday morning!

We have had such a nice weekend. Izzy and I stopped by a friend from playgroup's birthday party and then had a cookout at our house for Elizabeth's (my sister)birthday. These are the times I love more than anything..just family and friends being together, enjoying each other, and of course enjoying food. Isabel also loves these times. She is happiest when our house is full of people and especially kids.

People are the greatest gifts not STUFF! We are so blessed to have such support from everyone for our journey with MPSIII. We love you all! God bless, Leslie

Saturday, July 9, 2005 8:03 AM CDT

Good morning!

I am sorry to report that Izzy did not sleep as well last night. It may be related to the fact that her diaper leaked. She was just wide awake after that. She did get about 8 hrs of sleep total but not Jimmy and I as we went to bed late.

Yesterday was a good day. After Izzy woke up from her nap we (me, liz, and Izzy) had a car wash and played outside in the water. Izzy had a blast and got filthy. She helped us wash the cars too by giving us moral support especially as we were cleaning tires. Izzy would come up to us and hug and kiss and pat us on the back as if to say "you do the work and I'll do the playing." Then she would squirt herself and the dogs with the hose. It was alot of fun.

Later Liz and I went to a friend's house for a girls night of cutting up and laughing. It was nice. Thanks Kathy!!

Have a great day! God bless, Leslie

Friday, July 8, 2005 1:31 PM CDT

Hi Everyone!!!

I think I confused alot of people with my entry on Wednesday. Today is NOT Isabel's birthday but Elizabeth, my sister's birthday. The problem is that we call Isabel "Izzy" and Elizabeth "Lizzy."

Isabel's b-day is May 22. She turned three this past May and the next day we got her test results. But thank you to everyone for the happy birthday wishes. Isabel loves to sing happy birthday so we sing it almost daily with her and to her. She says "happy to do" though. It is so cute and so is she.

I talked on the phone with Jesse's mom today. Another amazing parent! Jesse is blessed to be loved so much. You can visit Jesse's site at www.caringbridge.org/md/myjesse.

Izzy went to School Days this morning for a few hours and was so excited as we pulled up. She started yelling "Adams" when we turned onto the street for Mrs Adams. She loves school and we love seeing her playing with other children. Yesterday she played with Redden, my friend's little boy, all afternoon and had such a great time. He is so much fun. Thank you Miranda for having us over for so long.

Another wonderful day for us. Isabel is still taking the soy and so far so good. We continue to pray for more research for treatments for Sanfilippo and all progressive disorders. Have a great Friday on this beautiful summer day! God bless, Leslie

Thursday, July 7, 2005 12:33 AM CDT

Hi Everyone

I had no idea about the terrorist attacks in London until I went to the dentist this morning. I am so out of touch. WHY do people do this? Are there really people that enjoy hurting others? It is senseless!!!!

Izzy is doing well today. She has been playing and talking alot. We had been granted a small but wonderful miracle. Her sinus infection appears to have gone away. Dr Prasad saw it on the CAT scan and gave us antibiotic last Thursday to use for 3 weeks. I was waiting until after our drive to Durham (on Tuesday) to start it because it always gives her horrible diarrhea and diaper rash. It is awful. So painful for her and really makes life miserable for all of us. Well her congestion started looking better on Monday and I havent wiped her nose once today. I think it is gone. The only thing I have been doing is giving her the soy extract.

As I wrote before we are trying the soy extract which contains genistein. Genistein has been shown to help break down the waste product that builds up in her body (but only proven in rats with MPSIII.) We hope that this is an answer to prayer for us and so many MPS families searching for treatment. Since beginning the soy last Friday we have noticed some improvements in attention, sleep, and overall behavior. Mostly we notice how happy she is but that may also be related to being back at home and not poked and prodded by nurses/doctors. (Except last Tuesday)We pray that the positive changes continue.

As far as transplant we are still scheduled to have a conference call with Dr Prasad next Tuesday morning. Transplant is looking less and less like an option for us but we are not sure yet. Please continue to pray for Frankie pants and all the people affected by todays terrible events in London.

Despite today's bad news, I still believe that there is more good than bad going on in the world. The media just doesnt cover the good news like they do the bad news. They dont talk about the missionaries all over the world bringing the good news of Christ, people overcoming daily obstacles, children giving their allowances to help sick children, strangers supporting strangers, parents sacrificing for their children, neighbors helping neighbors, and the list goes on and on. Good will come from this tragedy as well. God bless, Leslie

Wednesday, July 6, 2005 2:47 PM CDT

Hi Everyone!

It is late afternoon and I am just now writing my entry. Yesterday was...well, it was yesterday. My sister Liz went with me and Izzy so Jimmy could go to work. Our appointment was for 10:30. So we get there right on time and I go to check in and the receptionist's reaction told me something was up. I said "Jurado for a 10:30 appointment." She looked at the computer and said "that appointment was canceled and changed to Friday the 8th." I said but we just drove three hours to get here and no one told me it was rescheduled. So after waiting over an hour the nurse said they could work us in and to give them 10 minutes. ABout thirty minutes later they take us back and we immediately put in a Dora video to distract Isabel.

We quickly realized she was not going to take the meds, Dora or no Dora, so we used force. They tricky thing with Izzy is that she is very gifted at vomiting and has a history of throwing up when forced to take medicine. So it was a slow and tedious process to get it all in her without crossing the point of no return. Everytime she would start to gag, Lizzy and I would beg Izzy to keep it in. Looking back it is pretty comical but not at the time. ANyway we finally get it all in and Izzy starts looking sleepy after about ten minutes. Ahh victory, we thought. After about twenty minutes she starts getting hyper, then agitated, then has super human strength. "Sometimes the kids get hyperactive but it usually goes away quickly and they fall asleep. But with Sanfilippo kids you never know."-nurse. GREAT!!!

Wait. She starts to get sleepy again. OK, this is good. She's out. The tech goes to work marking and measuring on Izzy's head and putting all the electrodes and gluey-pastey stuff to hold them in.

Half-way through the grizzly bear awakens and rips all of the electrodes off. So at 2:00 we declare defeat. NO TEST AGAIN. YIKES!!

We all agreed that Izzy would need general anathesia for these tests. They wanted us to come back on Friday but we declined and are waiting to talk to the doctor next Tuesday when he is back in town. We just need a break from all this! Also friday is Lizzy's B-day and this is not what we want to be doing on her b-day (not that we ever WANT to be doing it.)

My mom kept Izzy today while I went for a physical, ate lunch with Jimmy, and to run errands. It was nice. It felt like normal life.

God bless you all for your sweet messages, cards, and emails. I am trying to program my brain to think only of today and not the "prognosis." Leslie

Tuesday, July 5, 2005 5:49 AM CDT

Hi!!

We are about to take off for Durham and will be back tonight. Please pray that our testing goes smoothly today. God bless, Leslie

Monday, July 4, 2005 7:25 AM CDT

HAppy Fourth of July!!!
As I lay in bed last night trying to fall asleep, I suddenly started thinking about my grandfather. This was my mother's father and most of my life I didnt know the details of his. I mostly knew that he was fun, always laughing, playing his harmonica as my grandmother sang, and just enjoying life.

I guess I learned as a teenager that his mother died of a brain tumor when he was around four. Then a year later his baby sister was killed in a car accident while sitting right beside him. Although he still had his dad, my grandfather was kind of shuffled around between aunts after that. As a young man he served in WWII. After marrying my grandmother they lost their infant son to a heart condition that is easily corrected today (I hope to say this about MPSIII someday soon.)He worked hard all his life and made ends meet. The tragedy that almost broke my grandfather was suddenly losing my grandmother to an aneurysm about 8 years ago.

My grandfather danced at my wedding in July 2000. Then a month or so later was diagnosed with leukemia. He NEVER complained while he was sick and chose to fight the disease with chemo given less than a 10% chance of survival. He did not survive.

I share this with you because I so often see people who seem to have it so hard. Why are some people struck with so much tragedy while others seem to have such a smooth ride? I do not know. Why did the Bennett family have 3 of 3 children affected with MPSIII when the odds are only 25% for each pregnancy? I do not know. But I know that so many of these people who seem to have everything dont even realize it and complain more then those who have it so rough. I guess life has taught those that hope comes from suffering. Happiness really is a state of mind.

I think my grandfather is looking down on me and saying as he always said "Everything's gonna be OK, my sweet pie pie."

My grandfather fought for our freedom. God bless America. Leslie

Sunday, July 3, 2005 8:59 AM CDT

I decided not to write yesterday and tried to have just a regular summer day. Friday was great just being home and doing regular stuff. Cleaning the house was even fun. I feel like I have so little control over this situation and it is nice to do something and have a finished product..for a few hours at least.

We went to Dana's last night for a cookout and had a great time. Last night felt like Izzy was just another kid playing. All of our friends are so accepting of her and the older children are so sweet (the younger ones think she's just like them.) I am picturing her running around right now and smiling and laughing and just enjoying life.
Maybe we can see some fireworks this weekend too.

I am running late getting ready for church and need to go. Just wanted to say a few words about my minister and his wife. Joe and Izzie Brooks are amazing! They met us Wednesday night in Durham and we all had a nice dinner together. Then they were there at the hospital for hours the next day just to support us. They are the kind of couple Jimmy and I hope to be. Their love for each other is so obvious and reflects their love of God. Joe is actually our interim minister as he is retired but we want to keep he and Izzie for as long as possible. We love you Joe and Izzie!!! You have taught us all so much in such a short amount of time. God bless, Leslie

Friday, July 1, 2005 7:10 AM CDT

Ahhhh..Home again!!

Yesterday was pretty tough. We met with Dr Prasad in the morning then had more blood drawn, audiology appointment, and X-rays. The meeting was about two hours long.

I know everyone is expecting a black or white answer today. Is she eligible or not eligible? If only it could be that simple. Two weeks ago I thought it was.

We still have to wait for the EEG results (scheduled for July 5) but this much we do know. All of Isabel's organs except her brain look pretty good. That means the doctors think she has a pretty good chance of survivng the chemo and transplant, etc. BUT she is already showing damage to her brain resulting in processing problems, confusion, and hyperactivity. Developmental tests show she is more at a 18-24 month level overall.

The gray area is this. From the day of transplant up to a year the disease can continue to progress until the new enzymes cause it to stop. But where will she be in a year from transplant? No one knows. How long will transplant stop the progression of the disease? No one knows. How long will it extend her life? No one knows.

Jimmy and I are searching for the best quality of life for Izzy in wahtever timeframe that involves. So the short answer is that as a team, the doctors and our family, we don't know yet about transplant. We need a little more time and a little more information from tests.

Believe me I have given you the shortest version of this dilemma. There are endless scenarios of possible risks from transplant. Our hearts and minds are still extremely heavy. We continue to pray for guidance and strength. We are here to love and protect our daughter. God has entrusted us with her. We are searching the world over for answers.

One new possibility that has arisen comes from a soy extract. There is fairly new research out of Poland that genistein (a soy extract) can cross the blood-brain barrier and help break down the waste product called heparan sulfate. The risks are almost nonexistent. It has only been proven in rats thaough. Jimmy has been speaking with this molecular geneticist and has found out that it is legit. We are also talking with other MPSIII parents around the country about this.

So no real answers for everyone who is following our story and praying so hard for us. Frankly, the whole situation STINKS! There are no great options. We are taking this weekend to enjoy being at home and enjoy our daughter as she is in this moment. God bless you all, Leslie

Thursday, June 30, 2005 6:12 AM CDT

Well Thursday morning is finally here. We are nervous but also realize that not all the tests were completed so we may have to wait a little longer for all the results and recommendations.

Joe and Izzie Brooks drove up yesterday and we all had dinner together and lots of laughs. Joe and Izzie (they come as a pair) are such a blessing in our lives and our church. We all hope it takes a while to find another minister because we love them so much.

Isabel slept well again last night so we are all refreshed. Her new schedule for today also includes some more blood draws, hip and knee x-rays, and audiology in addition to the meeting with Dr Prasad. However long that all takes we are checking out of the hotel and will be driving back tonight. I am so excited about being home again and hope to have nice weather for the weekend. I can't believe it is almost July 4th. We feel your prayers. Thankyou!!! Leslie

Wednesday, June 29, 2005 1:14 PM CDT

Hi Everyone!!!

Today is our day off from testing. Jimmy and I drove to Chapel Hill Children's hospital to visit with Lindsey and her mom Karen. Lindsey also has MPSIII and has been having a very rough time for the last few years. Karen has unbelievable strength but I know she must be exhausted. You can send Karen and Lindsey a message at www.caringbridge.org/nc/lindseysmpsjourney

I just read that Frankie will be transplanted tomorrow so please keep him in your prayers.

Izzy is doing pretty well and was very happy to have her daddy, Pop Pop, and aunt Nee Nee come up. They all took her to the mall this morning while JImmy and I went to Chapel Hill. SHe got to play at an inside park and is taking a nap now.

I am so glad to be reunited with Jimmy. If you know him you know that in almost any situation he can make you laugh (and that is just by being himself, not trying.)I am so glad that we have each other. He keeps me on my toes because I never know what is going to come out of his mouth. For him a thought on the brain comes straight out the mouth. He keeps telling me that even if the worst of the worst happens, we will be OK. He will take care of us I know. He is loyal and devoted, determined and strong. He cannot hold a grudge against anybody. These are all the things that I love about him. In the cleaning up the house department, well that is another story.

Tomorrow morning we meet with Dr Prasad and go over the test results. I am scared. I know I will cry because I probably will not want to hear alot of what they have to say but I want the truth, good or bad. We still have to come back next week for the EEG though. Missing all our friends and family in good ole Rock Thrill. God Bless, Leslie

Tuesday, June 28, 2005 1:34 PM CDT

Hi Everyone

We spent five hours this morning going through developmental testing. First the speech therapists, then pyschologist, physical therapists, audiologists, and finally the dev. pediatrician. The PTs are recommending X-rays of her hips and knees. They suspect some problems in the left leg. Izzy was less that cooperative at first but then warmed up. SHe is getting tired of all these people messing with her I think.

The more we learn the more horrible this disorder becomes. Our original expectations from stem cell transplant may have been too high. The dev pediatrician told me that cognitive improvements after transplant were not likely. This is a big blow. As I have said before there is no easy answer with this disorder.

Our appointment for tomorrow was cancelled since we recently had and eye exam in Charlotte. We are still scheduled to meet with Dr Prasad on Thursday. The EEG and BAER have been rescheduled for July 5 at 10:30 back at Duke. The EEG detects any seizure activity so it is pretty important. Next time I guess we're just going to have to force the chloral hydrate down her throat.

It is rainy and cloudy up here. Jimmy, my dad, and aunt Nita are supposed to come up later today. Izzy, mom, and I are ready to go home already. God bless, Leslie

Monday, June 27, 2005 9:55 AM CDT

Good late morning!

Well our first real bump in the road with testing. We could not bribe, force, beg, stand on our heads, or do anything to make Izzy take the sleeping medicine this morning for the EEG, ABR, and other testing. Believe me we tried EVERYTHING. The nurses were nice though and understood. Sleep is often an issue with Sanfilippo kids anyway but Izzy did not sleep much last night and was really tired BUT with the study they put a gazillion electrodes on the head and you must be perfectly still. Wow that was a major run-on sentence. Anyway, I have to talk with Dr Prasad's nurse and see what we need to do about this. They told me in the neuro lab that they couldnt reschedule her this week. This probably going to delay things.

Izzy had an EEG done in December at Presbyterian in Charlotte so maybe we can reschedule for there and send the results up here.

Also most of you that know Izzy know that she usually has upper respiratory problems more often than not(again common with Sanfilippo.) We had a few good weeks without this but now it is back and making it hard for her to breathe at night.

I am going to go read Frankiepants' site and see how he is doing. Please say a prayer for him and his mom Cynthia and dad Frank and they begin a new chemo drug.

Missing everyone at home already!!! Leslie

Sunday, June 26, 2005 7:19 AM CDT

Good morning all!

Last night was a huge success and tons of fun. The total raised last night was around $13,000. Thank you to everyone who sold raffle tickets, went around the community to gather donated items, cooked spaghetti, served it, set up, and cleaned up. AGain we feel so blessed to have such awesome support. You are amazing!

Thank you to everyone who came out last nightto eat spaghetti and hang out. It was so nice to see people we haven't seen in a while. We were honored to have Annette Dickson sing for us. She and I went to high school together and now lives in Nashville singing for a living. Her CD is called Annette Dickson by Waltzing Bear Records. We wish you the best of luck with your career Annette. You are gifted with a beautiful voice!

Isabel has not been herself this weekend since being sedated on Thursday but had a great time last night. She loves being at church and being around the children.

Izzy, my mom and I are heading back to Durham later today. Jimmy will come up Tuesday after work. The tests should be a little easier this week and now that we know our way around a little better hopefully it will all be less stressful.

Please continue to pray for us as we get closer to getting test results and making tough decisions. We flip flop each day in deciding which road we will take for Izzy's future. As I have said before we would like choose neither but must keep moving forward. God bless you all, Leslie

Saturday, June 25, 2005 7:36 AM CDT

I am happy to report that we had an uneventful night last night and Izzy seems to be feeling better today. SHe was running fever yesterday but woke up happy and fever-free. It looks like she will be able to attend her fundraiser tonight. We were a little worried yesterday.

Jimmy and I are enjoying being at home this weekend and look forward to seeing our friends and family tonight at the church. It should be alot of fun. Hope to see many of you there. God bless, leslie

Friday, June 24, 2005 6:41 AM CDT

Good morning!

We had great news yesterday. They were able to do both the MRI and CT scan together so we got to come home last night instead of today. Mom and I were so happy to have an extra day at home. In such scary times the familiarity of home is so comforting.

The meds they used to sedate Izzy for the tests made her very confused and agitated. They also left her with no balance. SHe kept trying to walk around and play so it was a challenge to keep her from falling. The nurse said this is common for all kids. Fortunately Izzy slept the whole way home but she didnt sleep much at all last night so I am feeling like a zombie right now. Hopefully we can both take a nap later today.

The Herald article was nice and a surprise to be front page. We are touched by the support from a family we have never met but share similar circumstances with. I noticed that both this article and the Charlotte Observer said that in some severe cases kids with MPSIII die. The truth is that the oldest I have heard a person living with MPSIII is into their early twenties.

I cannot stress enough how much we want to put an end to this disorder. We are lucky that Izzy was born at a time that there is a treatment option but want there to be more in the future. Thank you all for standing behind us. We should find out if Izzy is a candidate for transplant the end of next week. If she is then we must quickly decide if the risks outweigh the benefits. The road we want to take is not an option...no pain, no hospitals, just live a happy life and forget about this.

I know I have sounded less positive lately but it is only my fear and exhaustion. I am trying to place this in God's hands (because it really is) but I just want to make the right decision for Izzy. I pray for peace of mind and wisdom. Leslie

Thursday, June 23, 2005 6:34 AM CDT

Good morning to all our friends following our story.

Jimmy went home yesterday after the nerve conduction study and we will see him tomorrow when we come home. I really miss him. He is much stronger than I am with all this stuff. My mom and Dad are here with Izzy and I here in Durham. I have not mentioned them so far on this journal mostly because everyone that knows them knows that they are our biggest supporters. They have loved Izzy like she was the most special child ever since her birth and since her diagnosis they only seem to love her more. Of course she adores them too. I am so blessed to have such a loyal, strong, and close knit family.

The reality of all this hit me hard Monday afternoon on our tour of the blood and marrow transplant unit. The reality is that if she has the transplant we will be living in this tiny room for probably 2 months, these children are incredibly fragile and fighting to stay alive, a third of MPSIII children transplanted here have not survived, and if she is not a candidate then we will take her home and slowly watch her deteriorate until she dies. Either way we can lose her. If we do nothing we know we will lose her, just not when. If we can have the transplant we are guaranteed a tough year for Izzy and a chance of losing her sooner but a chance to stop the progression of the MPSII. Dr Prasad was very honest about the risks involved with the transplant and there are many. Looking around that unit I couldnt help thinking "Is this where my child will draw her last breath?" Will we walk out of here without her and how will we be able to breath much less walk without her. I know that this is hard for people to read. It is so morbid but if reading it is hard, imagine living it.

No parent should ever be faced with this. That is why we have to raise awareness and push for more research. There has got to be more out there for treatment for these kids. Science is just not there yet.

Izzy has her MRI today at 2:00 and we are free until then. We hope to find a park to take her to and burn off some energy. I hope to see many of you Sat night at the spaghetti dinner. Thanks to everyone working so hard to set this up. ALl my love, Leslie

Wednesday, June 22, 2005 10:29 AM CDT

Well, today looked like our easiest day on paper(only the nerve conduction study) but was a little more difficult than we expected. Bedside-manner makes such a HUGE difference for all patients but especially children. Isabel never cried tears yesterday with all the testing and taking blood because the professionals made her feel so at ease, were patient, and worked hard to distract her.

Today there were lots of real tears. Today the lady doing the study kept telling Isabel "be still, be quiet, stop moving" and looking at me and Jimmy like we were bad parents who could not control their child. Well, I must admit that we are not in control and no matter how hard we work we cannot stop this damage from Sanfilippo and the subsequent hyperactivity, loud talking, and unpredictible behavior (that is our hope for the stem cell transplant.) We are doing the best we can and so is Izzy. SHe did not choose to have this horrible disorder and cannot be blamed for the symptoms. This lady knew Izzy's diagnosis but I reminded her of the symptoms like hyperactivity from this poison building up in her body.

I must admit that I also lose my patience with her at times because I am human but then she gives me a big hug and her great smile and I remember that she is doing the best she can. I HATE MPSIII!!!!! but I LOVE MY IZZY and although she has MPSIII she has her own personality, spirit, and sweetness that breaks through these symptoms.

Tomorrow is the MRI and Izzy wont be able to eat after 9:00 until 2:00. If you know Izzy very well then you know she likes to eat! I'm sure she'll think "why in the world wont these people feed me?" We'll try to stuff her beforehand.

PLease be praying for Frankiepants who was admited to the SCT unit yesterday. He should start chemo soon. ALl my love and please forgive the venting above. We miss everyone but Isabel especially misses her cousin Andy. Leslie

Tuesday, June 21, 2005 5:25 PM CDT

Dear All,

I am in charge of the journal today. Issy did real good today. She had her blood drawn (A lot) and thank to the wonderful nurse (Priscila), we were able to do it fast and with no tears. She was very good.
After that, we went for the lung test, that one was pretty quick... Issy knows how to cry and yell... so it was done in no time.
Around 12:45, we went to a different hospital building to do the Echocardiogram and the EKG. Again the nurses were very nice, and there was no need to put Issy to sleep. The nurses had a DVD with some Dora videos, so that did it. She was watching the Dora videos while they did both tests.

We met Pop pop and Gandy around 2:00 pm, and we went to eat lunch. At 3:00 we met with the social worker, Susan Trout. It was mainly issues about how to deal with all this. Pop pop and Gandy took the tour of the stem cell Transplant unit while we were with Susan.

The transplant unit.... that is another journal itself. It is a special place. Being here makes me think how lucky we are to be healthy. There are many children at this hospital in similar or worse situation than Issy. It is amazing how this children cope with all this. I learn everyday from Issy.. after all the tests during the day, she has a smile in the afternoon for all of us. Same little happy girl as always. Amazing!!!

Also yesterday, Sam and his parents came to our hotel. Sam is from Colorado, he is 4 years old and has MPSIIIA. Issy and Sam had fun together. They have in common some behaviors. It is interesting that all 4 adults in the room had the same recesive gene, and both our children have the same disorder and on top of that, Sam's mom is also an OT... The bad thing is that she is a Georgia fan, but well, we can deal with that.

Tomorrow we have another test at 9:00 am. I was supposed to go back this afternoon, but decided to stay for tomorrow's test. We have only one test at 9:00.
Thanks all for your support, prayers, emails, guestbook posts, etc.
We love you all!
Jimmy

Monday, June 20, 2005 11:29 AM CDT

Good afternoon!!

It looks like I may be writing in the afternoon while we are up here because I probably won't have time in the morning. We have had a really GOOD today. Everything today has gone very smoothly and Isabel has been a trooper. We go to meet Dr Prasad at 2:00 and then we are finished for today.

We could not believe our luck this morning on the street walking to the hospital. We see a family with a little boy in a stroller and it was FRANKIE as in frankiepants.com. I recognized him immediately...cute as a button. He was having his central line placed this morning.

I also spoke on the phone with a mom last night who is here for testing for their 4-yr-old son who also has MPSIII. They are from Colorado and we hope to meet up with them later today.

Oh I forget to tell everyone what a great nights sleep we all had last night. We are praying for more to come.

On our way up yesterday Jimmy and I talked about the fundraiser on Saturday. We talked about how so many people are changing our lives. Jimmy was sooo impressed with Megan Blackwelder who is in high school and has devoted so much time to helping us. Then yesterday we see that she left in the morning for a mission trip with the youth group to Florida for the week. At an age when many kids are so focused on themselves, this young lady is changing lives. We are proud to know you and your entire family Megan.

To everyone who has helped us in the last few weeks, we love you, we admire you, and we thank God for you! Leslie

Sunday, June 19, 2005 8:29 AM CDT

You will not find a harding working group of people than were gathered at First Presbyterian Church yesterday morning. THANK YOU for washing cars, selling baked goods, checking out people for the yardsale, and especially the clean up afterwards. A special thank you to our committee who organized everything..Frank, Nita, Kathy, Sally, Dana, April, Julie, John, Jody, Megan, and Edith. We really raised some money!!!

Yesterday was an emotional rollercoaster, as much of this has been. I was so happy to see all our friends and family around us working to raise money for Isabel but so sad about what is happening to her little body. I was overcome with emotion in seeing so many of my friends coming in from around the state to support us...Alison, Jennifer, Sharon, Ann Marie, Heather, and Kacie. Also thank you to Veruska and Julio for lunch!

Many people have said to me that I am so strong. I am here to say that I am not. The truth is that I am terrified and I pray that everyone's hard work will make a difference for Isabel's future. I am so scared that the doctors will tell us that we are too late. I know I need to think positive and trust God and I am trying but the fear is still there.

One of the symptoms of MPSIII is sleep disturbance. Well last night Isabel slept about three hours which means Jimmy and I did too. Of course we were so tired after the fundraiser that we are really dragging this morning. Isabel, however, is still going strong.

Happy Father's Day to all those dads out there. We leave this afternoon and will try to keep everyone updated. God Bless, Leslie

Saturday, June 18, 2005 5:08 AM CDT

I cannot believe all the donated yard sale items we received yesterday. The fellowship hall/gym is overflowing with toys, clothes, dishes, shoes, books, games, and especially baby clothes. We also have some very yummy looking bake sale items that should be a big hit.

The memory of looking around last night and seeing my family, friends, church family (lots of help), and friends of friends busy as bees setting up all for our child will forever be ingrained in my mind. The amazing thing is that even though the driving force behind all this is a horrible disorder, I find pure joy in the acts of love displayed by others.

I listened to myself last night on WRHI on the link on helpisabel and was shocked. I was impressed. That was NOT me. I have always feared public speaking, that is until Isabel educated me on what real fear is.

Today we will have a great time. Laugh with friends and maybe cry too. Today we will celebrate Isabel's life. We do not know the future though we are fighting for it, but for today she is happy, running and playing and 100ull of life. All my love, Leslie

Friday, June 17, 2005 5:43 AM CDT

Well, Jimmy ran out to get the Observer a minute ago and says that the article about Izzy is not in there. Maybe they are planning on running it tomorrow. I can imagine that half my family ran out early to get the paper too with the same sleepy disappointment. There is an article. He read it to me yesterday.

Anyway, it is the day before the first fundraiser and we are getting excited. It is a nice diversion from thinking about next week's upcoming testing for the transplant. I am getting increasingly anxious about all this medical stuff but know it is the only hope for Isabel. A bible verse from my 6-yr-old neighbor Audrey from VBS this week "But even when I am afraid, I keep on trusting you."-Psalm 56:3. Leslie

Thursday, June 16, 2005 6:49 AM CDT

Hi!!!
We are busy, busy, busy working to get all in order for the fundraiser this Saturday at First Pres. It already looks like we have lots of nice things for the yardsale.

Good news: we received the schedule for Isabel's pretransplant testing. It begins Mon June 20 and runs through June 30. As you can imagine they are doing LOTS of tests some of which will require general anthesthic. We will post a more specific schedule of the testing on www.helpisabel.com. in a few days. Prayer got us to this point. Now our prayers need to focus on these tests telling us that Izzy is eligible for transplant.

I want to let everyone know that David Perlmutt from the Charlotte Observer has written a very nice article on Isabel that should be in tomorrow's paper. Thank you David! We also want to thank the Tigerboard for all there efforts to spread the word about Izzy and yes even the Gamecock board is helping out our little tiger cub. The FGF has run banner ads with Izzy's picture and website on the internet and so far it has the most hits.

Thanks to Ron Dick and John Demchak for setting up the the helpisabel.com website. It is looking great guys!

Lastly and most importantly, Isabel is doing great. She continues to be more loving lately, just wanting to hug everybody (especially children.) She seems to have come out of her shell more with strangers also. She has so enjoyed vacation Bible school this week. Knowing that after transplant she will be isolating from children for a very long time, I just want her to play with others as much as possible right now.

I know this might sound nutty but last night I opened a Little Debbie oatmeal pie and there as plain as day was the shape of a perfect cross. Jimmy was already asleep so I couldn't show him and I was hungry so I ate it but not before getting the message. God is with us. Leslie

Wednesday, June 15, 2005 8:00 AM CDT

Good morning!

This morning I am praying for the right words and the strength to hold back tears as I wait to do a phone interview for New Life 91.9. (To air Thursday or Friday morning)This is a Christian radio station based out of Charlotte that Jimmy and I have listened to for years. I pray that I will find the right words to explain our situation to listeners and to give a voice to Isabel who cannot protect herself against this deadly disorder.

It looks like pretransplant testing could begin as early as June 20 and run through July 1. This is exactly what I have been praying for but I am terrified of it all. I know she will be poked and proded for two weeks and emotionally this takes a toll on any parent. I pray that she will not lose her trust in us and somehow know that we are doing all this to protect her.

Miracles are already happening. People are coming together and giving of their time, money, and talents to save a child. It amazes me the lengths that complete strangers will go to for our daughter. God has blessed us indeed. All my love, Leslie

Tuesday, June 14, 2005 7:24 AM CDT

Hi Everyone!

Jimmy and I are still celebrating our great news from yesterday. This is the best news we have received in a long time. Thank you Wellpath for approving the pretransplant testing at Duke!!!

Isabel seemed to know that yesterday was special. She had a good day and then had a blast last night at VBS. She loves watching the big kids play and the babies too.

I am hoping to hear from Duke today about our testing schedule and find out when we will start. Isabel wants to type too. She is as busy as ever. The nick name Busybel still applies.

Matt Dorton has made beautiful fliers for the fundraiser and we hope to get them out in the community today. Please continue to spread the word for us.

Julie and Chris Howe have arranged for the Fox radio statio (Mr Bill) to plug our fundraisers at drive time 5-6. I amn ot sure if it is today or tomorrow.

I had a phone interview yesterday with David Perlmutt from the Char Observer. It should come out Thursday or Friday. I also have a phone interview with Gary and Leslie from 91.9 Family Friendly Morning Show tomorrow morning that will be aired Thursday or Friday.

We are so grateful to this community! God is still opening doors so we must be moving in the right direction. Blessing, Leslie

Monday, June 13, 2005 9:50 AM CDT

Praise God!!Our prayers are working!

Jimmy just called to say that Wellpath has authorized the pretransplant testing at Duke. We dont know how much they will pay but they are going to pay something. This gives us a better chance of them helping out with the transplant. Thank you Wellpath! We will schedule ASAP. I am waiting to hear back from them now.

God is opening doors for us. By his grace my friend Jessica happened to read about MPS just before Easter and told my mom about it. Torn over whether or not to bring it to my attention God put a burden on her heart to ask if Isabel had been tested for it. Even though Isabel had genetic and metabolic testing over a year ago MPS was never mentioned. If this information had not have fallen into Jessica's, then my mom's, and then my hands we would still be searching. Lord keep opening doors and we will follow. I cannot thank everyone enough for their time, prayers, and love. God bless us all, Leslie

Sunday, June 12, 2005 1:41 PM CDT

Good afternoon!!
I didn't have time to write this morning before going to church. We did go down to the farm yesterday and then Jimmy and I went to a movie. It was a nice break.

We have great news to report regarding the fundraiser in Weston, FL by Izzy's cousins at their house. So far they have raised around $5,600 with a big chunk of the money coming from a donation from Tere (Tito's mom) and her sons' company. All the Paez family is working hard washing cars and selling garage sale items. They will also be selling caramel apples tomorrow evening at the Town Center in Weston. Thank you!! We are blessed with a wonderful family.

I need to go meet at the curch to discuss fundraising. Love you all! Leslie

Saturday, June 11, 2005 6:53 AM CDT

Good morning!

Wow! So much has happened this week. Jimmy and I are realizing that we can't do everything ourselves and are dependending more on others to help us especially with the fundraising events.

Yesterday we were so drained we could barely function but good things are happening. Jimmy spent most of the day on the phone with doctors and insurance and may be making some progress. Please keep praying that insurance will help us out with Duke. We will only wait a little longer before we have to set up the testing. He was also working with Adam Cain from Spartanburg (he met him on Tigernet2.com)to set up a separate wesite for Izzy where people can donate through paypals using their credit card. It is not up and running yet but the site will be www.helpisabel.com. Thank you ADAM CAIN!!!!

I felt a little discouraged when I brought Izzy's picture from the website to a local business. I was going to ask for a donation of services to raffle. I only got out the words "This is my daughter and we are trying to raise money for a stem cell transplant" and the day manager's response was "I don't have time for this" and threw Izzy's picture behind him on the counter. I couldnt respond because I knew I would start crying. i just walked away. I wanted to scream "You want to know about not having time, I can tell you what not having enough time feels like!!!" But I realize that not everyone is going to be supportive and I probably shouldn't be the one approaching businesses because the rejection is too personal for me.

On a lighter note we are going to try to do something other than just this today. Maybe we will go down to Pop Pop's farm and enjoy the sunshine. We feel torn because we want to enjoy this time with Izzy before she is stuck in a hospital room and undergoing chemo but we have to spend so much time making it all happen. Again thank you everyone who is praying and working so hard for us. Thank you uncle Frank for your clarity last night. We love you guys!! Leslie

Friday, June 10, 2005 6:50 AM CDT

Goodmorning!!

Another day to work on setting up our fundraising for Isabel's transplant. We are really making some great progress but are depending also on those of you following this site to tell as many people as you can about our efforts and events so we will have a great turnout.

First Fundraiser: Saturday June 18 8:00-12:00
Yardsale/Bakesale/Carwash
The Fellowship Hall and parking lot of
First Presbyterian Church
234 E Main St
Rock Hill, SC 29730
All proceeds go to Isabel's medical fund

If you would like to contribute with baked goods, yardsale items, or carwashing please email me at lesliejurado@rhtc.net.

Jimmy's sister Carmen Paez and her family in Weston, FL are having a fundraiser this Sunday at there home. It will be a carwash/garage sale/lemonaid and cookies. THANK YOU Carmen, Tito, Margie, Caro, and Camilo!!! There address is 19252 S. Hibiscus St in case any of you know people in this area (it is near Ft Lauderdale.)

I am going to take Izzy to preschool this morning. She has been in a really good mood these last couple of days and still being extremely loving. I think she feels all the love that is surrounding her. Her little face keeps us all going strong.

I spoke with Sonia Schatz last night in Philadelphia. Her 2-yr-old nephew Frankie is at Duke right now and will be starting chemo next week in preparation for his transplant. He also has MPSIIIA like Izzy. Please pray for him. You can see his sweet face at www.frankiepants.com

Any of you that have connections with local businesses that could donate goods or services for a raffle we are planning please tell them about Izzy and email me if you get any donations. Thank you all for working so hard. There are so many people to thank that I can't list them all. You know who you are. You are changing Isabel's future. We love you!!! Leslie

Thursday, June 9, 2005 11:30 AM CDT

Hi Friends and Family

I am writing today's journal entry once again. It keeps getting messed up or lost. There is much to celebrate today. First we received Isabel's skin results and as we suspected she has type A. This is the most common type along with B which we had already ruled out. Some sources state that type A is the most progressive. We are trying to move quickly to get Isabel on the track to transplant. Remeber this is the test insurance wants to move forward. Unfortunately insurance is still saying they wont pay for Duke.

The second bit of good news is our first donation to Isabel's medical fund comes from Carrie and Brian Reed in Arizona whose daughter Lauren was transplanted in November. They are giving us $5,000 from Lauren's foundation. YEAH!!!!! and THANK YOU!!!!

I am working as quickly as possible to set up a fundraiser for hopefully Sat June 18. I am still waiting to hear back from the church to see if this date is OK. Carrie told me they were able to raise over $40,000 in one weekend from a bakesale and carwash. I will need to start delegating duties to friends and family to help me out as I am only one person.

Everyone has been asking how they can help and this is it. Once we confirm the date and place for the fundraiser please tell everyone you know. Also if anyone would like to make donations or know of any corporations that would like to make a tax-deductible donation please give them Izzy's information. The account info is posted above.

Suddenly I am filled with hope for Isabel's future. Instead of a future of physical and mental deterioration, feeding tubes, joint pain, seizures, a persistive vegetative state, and an early death she has a shot at a future with running, playing, eating ice cream, learning, loving and enjoying God's world for a long time. Please help us make this a reality. God bless you all. Leslie

Thursday, June 9, 2005 7:43 AM CDT

Wednesday, June 8, 2005 7:21 AM CDT

Hi Everyone

We had a rough night. Isabel was up crying on and off all night and then she got sick this morning. At the moment she seems to be feeling better. No preschool this morning.

Thank you to all Jimmy's friends in Taiwan for their kind words of encouragement. We may hear about the skin test results today and I will post again if we do. I better go attend to my baby. Have a nice day! Leslie

Tuesday, June 7, 2005 6:46 AM CDT

I cannot believe it. It is 7:47 and Isabel is still sleeping. Her morning at school and then playgroup in the afternoon must have really worn her out. She never sleeps this late.

I am afraid we are at a standstill until we get the skin biopsy results back from UNC. No one wants to proceed with making arrangements for preliminary testing without them. PLease pray that they will come soon. Dr Prasad from Duke called yesterday and he is urging us to fight to go to Duke for the testing and the transplant. He feels like if we go somewhere else for testing because they dont deal with this diagnosis as much as Duke that they wouldn't be qualified to determine her eligibility. Parents in Seattle told me they had to threaten media coverage and lawyers to get their insurance to pay for Duke and they finally gave in and paid. I am not sure if we will need to go this route.

Again thank you for all your emails and messages in the guest book. I would like to respond to each of you personally and maybe I eventually will. Please know that your prayers are helping us. We love you all. Leslie

Monday, June 6, 2005 7:49 AM CDT

Good Morning Friends and Family

Izzy is back at school this morning and has graduated to the big room. She didn't seem to mind the change this morning when I dropped her off but I am sure she will be looking for Mrs Adams her second Mommy. We love School Days!!

I had an amazing conversation with Lauren Reed's mom Carrie last night. Her website is www.savelaurenreed.com. Lauren was almost four when she was tranplanted. Lauren is 7 months post transplant and is doing remarkably well. One reason is because the stem cell donor was her little brother so the cells grafted more easily and there were less complications. Lauren is off meds, is gaining skills, and is happy. She has to be isolated at home so all her therapies come to her. Carrie is being super cautious to keep her away from other kids (except her brother) so she will not have any infections.

I shared my fears with her and she educated me on the more recent Sanfilippo transplants. Carrie tells me they have learned more with each transplant and the latest kids are having fewer and fewer complications and doing well after the transplant. She says that Duke may not be our only option for transplant. Lauren was the first child transplanted with Sanfilippo at U of Arizona and is doing great. I am cautiously excited. Isabel is delayed but so was Lauren and she was still a candidate because there had not been significant organ damage. I need to go contact some more people..insurance, Children's Hosp of Philadelphia, Duke, etc. The conversation with Carrie last night was an answer to pray. I have been praying for guidance and wisdom. She shared her wisdom with me. Thank you Lord and thank you everyone for your prayers. They are working!!! All my love, leslie

Sunday, June 5, 2005 7:22 AM CDT

Hi Everyone

We arrived home yesterday around 3:30 to a crowd of people in our backyard. My uncle Frank had been working on clearing out stumps and then tilling the area all around Izzy's new playset. He then recruited some family to help lay out mulch right before we arrived. It looks so good and was on our To Do List and now it has all been done for us. THANK YOU Frank and everyone who helped. Unfortunately this act of kindness brought some poison ivy reactions to Frank and my mom. Apparently Frank's eyes were swollen shut one day. He told me he has pictures of himself.

I must admit that I have felt a little down the last two days. The sense of peace I have been feeling is just not there. I think the magnitude of what we are facing, especially the decision about stem cell transplant, has really hit me. The truth is that if the preliminary testing comes back saying Izzy is eligible for transplant we are not sure if we should do it. I plan on calling some parents who have been through transplants this afternoon for more information. I want more details about the procedure, the mortality rate, and how it would effect Izzy's quality of life. We don't want to just extend her life if the quality will be poor. These are all things weighing heavily on mine and Jimmy's minds right now and we can't just think about it later because time is precious. Please pray for wisdom, patience, and peace. Thank you for your continued love and support. God bless, Leslie

Friday, June 3, 2005 4:37 PM CDT

Hi Everyone!

This our last full day in Florida. There has been a ton of rain but I hear that it is the same at home. Isabel is doing well but still has the cold. She cannot get enough of her cousins especially Carolina. She is drawn to her like a magnet.

I spoke with Amy Fisher, the genetic counselor at Chapel Hill, yesterday afternoon and it looks like it will be next Tuesday before we get the skin biopsy results. Remember this is what we are waiting on for insurance to schedule us an appointment with an in-network transplant center for the preliminary testing (a little more complicated than that but the basic idea.)

We are going into Miami tonight to see Jimmy's grandmother, aunts Clara and Bea, Mike and Melissa one more time before we leave. We are meeting at a place like Celebration Station so the kids can play. I better go. God bless you all for your kindness. Leslie

Thursday, June 2, 2005 7:45 AM CDT

Good Morning,

So far it is a sunny day here in Weston, Florida. Yesterday was ALOT of hard rain. It is the kids last day of school here. Margie just left for school and she is such a beautiful young lady (inside and out.) She has emailed many of her friends and told them about Isabel's site (Margie is only 12.) Carolina graduated from fifth grade yesterday and Isabel showered her with hugs and kisses last night. Izzy just couldn't get enough of Carolina. She kept telling her "ay down" and "nap" and would push her to the floor so she could cuddle with her. It was so sweet to watch especially how patient and caring Carolina was. These children are so special.

Izzy continues to struggle with a cold and cough. Sleep has been rough as she wakes up frequently coughing and crying and usually with a fever. We did take her to urgent care here on Sunday but they said it was probably a virus and would have to run its course. She seems much better during the day though.

I did get in touch with the transplant coordinator at Unniversity of Minnesota yesterday and they are no longer doing transplants for Sanfilippo. On top of that they are not in our network anyway. She told me they weren't doing stem cell transplants anywhere in the US now because they weren't successful. I told her about Duke and Dr Kurtzberg who is doing them. She was skepital. It looks like if Isabel is a candidate and we are willing to take this risk of stem cell transplant then Duke is our only option BUT they are out of network for our insurance so it will be another battle.

My mom says people are already asking about fundraisers and this is wonderful. We definately want to do fundraisers but right now we need to determine if they will be for a transplant for Isabel or for other MSP families and research. We first have to find out if Isabel is considered a candidate. That means a week or two of testing to determine how far the Sanfilippo has progressed. We are waiting for insurance to tell us where we can go in-network for this testing. So far it looks like Philadelphia or Pittsburg and possibly Cinncinatti. Then we must wait AGAIN for the results. If they tell us she is a candidate then we must start the fight to get them to send us to DUke. This is when fundraising may begin. Even if Isabel is not a candidate we are dedicated to raising awareness and money for research to put an end to this disorder.

Thank you all for your support and for spreading the word to as many people as you can. We continue to be touched by the number of people responding to this site. If you have sent personal emails to me I will respond but I can't until we get back home. ALl our love!!!! Leslie

Wednesday, June 1, 2005 9:01 AM CDT

Hi Everyone

For some reason my journal entry did not post yesterday. Jimmy and I are overwhelmed with the responses from this website. Thank you for letting us know that you care. I pray that much good will come from this battle. My dream was/and is to teach Isabel to be a kind and compassionate person, to serve God by serving others, and to always remember that people, not things are most important in this world. It was my plan to teach her to love people with disabilities but I didn't plan on her being one. I accepted that she would be different months ago before I had ever heard of Sanfilippo Syndrome. I pray that her battle will touch people in a BIG way. Life is precious! I am scared, Jimmy is scared. This is like a nightmare that we can't wake up from but I know it has a purpose. I will make it have a purpose. If you haven't already please visit the National MPS Society at www.mpssociety.org and consider becoming a member. I want to thank Jessica for doing research for us regarding another transplant site other than Duke. She has contacted the transplant coordinator at Univ of Minnesota and apparently they are doing stem cell transplants for Sanfilippo. Now I have to try to see if they are in network with our insurance. We spent time with Jimmy's grandmother, aunts Clara and Beatrice, Clara's husband Mike and their daughter Melissa yesterday. Isabel had fun laughing at abeula speaking to the dog in Spanish and playing ball with Mike and Melissa.I am off to try to contact the insurance case worker while Isabel is watching Dora. God Bless, Leslie

Sunday, May 29, 2005 8:22 AM CDT

Hi All
We are at Carmen's house in Weston Florida. Isabel was very happy see her cousins but especially the dog "Mickey." She is calling him "Neney."

Jimmy and I were very excited to talk on the phone with Cindy from Simpsonville whose daughter Lauren also has MPS III. She is an amazing women. WOW!!! She is so positive and full of Christ's love. SHe has really inspired me to fight for a cure for this even if it doesnt come in time for Isabel. Please visit Lauren's website at www.laurenshope.org

Jimmy wants me to tell everyone that he and Margie saved a turtle that was crossing the road this morning on his way to get breakfast. He is very proud of himself.

Adios :) Leslie

Sunday, May 29, 2005 8:22 AM CDT

Hi All
We are at Carmen's house in Weston Florida. Isabel was very happy see her cousins but especially the dog "Mickey." She is calling him "Neney."

Jimmy and I were very excited to talk on the phone with Cindy from Simpsonville whose daughter Lauren also has MPS III. She is an amazing women. WOW!!! She is so positive and full of Christ's love. SHe has really inspired me to fight for a cure for this even if it doesnt come in time for Isabel. Please visit Lauren's website at www.laurenshope.org

Jimmy wants me to tell everyone that he and Margie saved a turtle that was crossing the road this morning on his way to get breakfast. He is very proud of himself.

Adios :) Leslie

Saturday, May 28, 2005 8:45 AM CDT

Hi All

We are off to Miami to spend the week with Jimmy's sister and visit his grandmother and aunts (maybe his brother Luis and his wife Natalia too.) It will be a nice change of pace for us as Carmen and Tito make us feel like we are at a Bed and Breakfast. We are excited to see Isabel's reaction to her cousins. She was so happy to have them here at New Years and they are so good with her. Margie and Carolina have turned into beautiful young ladies and Camilo keeps us laughing. To my family, friends, church family, and neighbors...We are so grateful to have you and your prayers. In the midst of tragedy I feel so blessed with your kindness and support. We love having you around us. Susan came over last night with Andy and it was wonderful to watch he and Izzy together doing normal kid stuff (ex. fighting over the toy lawnmower.) John A also came so Izzy had her Pop Pop, Gandy, LIzzy, Phil, John, Susan, and ANdy to show off her sliding skills on her new playset. To my mom, dad, John, Liz, Nita, Frank, Susan, Dana, Nick, Tonia, Miranda, Beth, Edith, Loli, Joe, Izzy, and everybody who has helped us through this week.....I LOVE YOU! I LOVE YOU! I LOVE YOU! Leslie

Friday, May 27, 2005 11:14 AM CDT

I spoke with Dr Prasad from the transplant team at Duke last night. He explained that finding a stem cell donor is usually not very difficult. The battle will be determining if she is a candidate based on the current stage of the disorder. They will not do the transplant if they feel it is too advanced. The testing to determine her eligibility is $20,000. Duke is not in-network for our insurance company so this is going to be a battle. I am waiting to hear back from the financial coordinator at Duke. Please pray for patience for Jimmy and I and that things will come together for the next step in our journey. God Bless, Leslie

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