I can’t believe we are at our one year anniversary for the opening of L.I.F.E. This year has gone by so fast. The business has kept us very busy. We started with a staff of 35 and were seeing almost 100 children. A year later we have a staff of over 100 people and are seeing over 300 children each week. Praise the lord for the center’s success and all the little miracle’s we see each week. Every week, we seem to have something wonderful happen. A child is able to start walking or says their first word. Seeing a mom’s face the first time a child is able to say I LOVE YOU or a dad’s face the first time his son is able to ride a tricycle or catch a ball makes it all worth while!!! I am so blessed to have an amazing partner that works 60 plus hours per week. She is an answer to prayer because with the kids, I am unable to work near as much. I am able to work from my office at home. This was a huge blessing because Lauren gave us quite a scare earlier this year…

Lauren started having “seizure like” episodes during the night. As many as 15 to 20 were occurring every night. She continued to get weaker and weaker until she eventually lost the ability to walk. It progressed to the point that she couldn’t even hold her own head up. She was admitted to the hospital and they ran test after test on her and could not figure out what was going on with her. The tests did reveal that the episodes were not seizures. She was placed on IV antibiotics and had a surgery to remove fluid build up in her ear. Our prayer’s were answered and she stopped having the episodes at night and started walking again. She has not only regained all the skills she has lost, but she has surpassed her previous levels in all areas except speech. Lauren is able to sit at a table and feed herself for the first time independently. We used to worry that she was going to throw her food or plate. She isn’t doing that anymore. When we put her in bed now, she stays there and puts herself to sleep. We use to have to stay in the room until she fell asleep. We hardly ever have to change a poopie diaper anymore!!! Thank you for all of you that prayed for Lauren during this difficult time.

Lauren lost the ability to talk and sing during this time. Over the last few weeks, she has started saying a few words and singing a line or two of some of her favorite songs. Please pray that this continues and increases again. Singing her songs brought her and all of us so much joy as we loved listening to her. We have been so blessed since Lauren’s transplant having such a happy, healthy little girl. This experience has been a good reminder for us and how thankful we need to to be for every year we have Lauren. God has blessed us so much with this extra special little girl. She has this amazing spirit that is infectious. At least 90% of the time, Lauren has a beautiful smile on her face and you can’t look at her smile and not help feeling a little better.

Finally, after a long hiatus, our family has decided to start a blog. We will update much more often and maybe exclusively on this new blog. Our blog address is http://brianandcarriereed.blogspot.com. We hope to hear from you.

We pray that this post finds its way to our other Sanfilippo families and that your news is positive as well. We think of you all often and continue to pray for the Sanfilippo families.

With Love,

Carrie and Brian

The Make A Wish Foundation granted Lauren’s wish. They gave her a carousel for her and the other children to use at Lauren’s Institute For Education (L.I.F.E.). She loves riding her horse, as do the other children at the center. The carousel is beautiful…it has three horses. They do go up and down as well as around. We are so thankful for the generosity of the Make A Wish Foundation.

 

 

The center is doing great! We have around 200 children and that number is growing every day. We have a staff of 70 employees and that number is also growing weekly. Lauren loves being at the center. She is doing really well. Her progress is slow but we still have so much to be thankful for. She is still progressing and we haven’t seen any regression yet as we would have typically seen in a child with Sanfillipo Syndrome by age 7. It is hard to believe, but our baby girl is turning 7 years old on November 15^th.

 

 

Here is the latest story done on Lauren and how LIFE is helping children in Arizona. Click here. We had an open house on Sept. 21^st for people to come and tour the center. It was a huge success. We had over 500 people come and see the center. The therapy center is 7,600 square feet and we are already running out of space. Our waiting list has hundreds of children on it and it keeps growing every week, so we are leasing an additional 2,700 square feet. Brian is drafting our new floor plan and we plan to have the addition ready by March 1^st. We are starting a school in August. We will begin by offering pre-k -2^nd grade. We have had so many parents unhappy with the public school system (myself included) that we are so excited to give these families other options.

 

 

Thanks for checking on Lauren. Please pray for her continued good health and happiness as well as prayers for the therapy center and school. They are greatly appreciated.

Sorry it has taken so long since our last journal entry. Lauren is still happy and healthy. She loves the summers because she can go swimming. She is completely independent in the water except she wears a small vest with removable flotation devices inside it. She is getting aquatic therapy in the pool again this summer. This is one of her most beneficial therapies because it is so easy to motivate her in the water.

The center (Lauren’s Institute For Education - L.I.F.E.) is keeping us all busy. The building will be completed the end of the month and the furniture and therapy equipment are scheduled to arrive the first two weeks of July. We will begin having a small amount of children doing therapy in the center on July 23rd and we will be up to full capacity by August 6th. We have over 100 children on our waiting list and that is solely by word of mouth. We haven’t done any advertising. The website is www.laurensinstitute.org, if you would like to check it out. The Arizona Republic did a new story on Lauren this week. Here is the link if you are interested.

Thank you for your continued prayers and for checking in on our little Lauren. We would ask you to continue to pray for her and for all the kids at the center. We pray that the center is a place for these kids to reach their fullest potential in life, and most importantly they have fun while doing it.

Lauren is a healthy, happy six year-old girl. She loves to sing and play outside. She loves to play with balls, run, ride her bike, and play on her swing set. Lauren saw her geneticist last month. He was amazed at how well she looks. He said all of the things that made him think she had an MPS storage disorder are gone (i.e. Lauren had coursening of her features, enlarged liver and spleen, and contractures in her joints.) He said these have all returned to normal. Lauren still has developmental delays from the brain damage that occured prior to her transplant. Lauren has continued to make progress, but at a very slow rate. We are hoping that getting her around other children is going to help her progress as she watches them.

This is scheduled to happen the first week in August at the grand opening of Lauren’s Institute For Education (L.I.F.E.). The center will have Physical Therapy, Occupational Therapy, Speech Therapy, Music Therapy, Structured Habilitation and ABA programs. The building is 7600 square feet and is located at Queen Creek and Higley (for those of you that live in Arizona). We are very excited for the center to open because there are no places around for these extra special kids to receive all of their services in one place.

Your prayers and support are always appreciated. Thank you for continuing to pray for Lauren. Please also pray that the center (L.I.F.E.) is a place that will allow special kids in the area to receive all of the services that they need. We know that God has a very special plan for each one of them.

Merry Christmas to All.

This is the first year Lauren has showed any interest in Christmas. She seems to be enjoying looking at all the Christmas lights outside and enjoys looking at the Christmas tree. She has learned a couple of new Christmas songs (i.e. Rudolph and We Wish You a Merry Christmas). We hope she enjoys opening her presents this year; she never really has in the past. All in all, Lauren is healthy and happy and we are so thankful that she has been able to continue to improve rather than digress.

We have always felt like God blessed us with Lauren for a reason and we are following that “call” as He has laid on our hearts to start a special needs therapy/habilitation center. After looking for therapists for Lauren and speaking with frustrated parents of other special needs children, the need for this place became clearly evident. Therefore, Carrie and Margaret (Carrie’s close friend and Lauren’s therapist for several years), have been working hard the past few months on opening this non-profit center for special needs children. We have decided to call it L.I.F.E., which stands for Lauren’s Institute for Education. Our inspiration for doing this is driven by: 1) our daughter Lauren, and 2) the need in the East and West Valley for centers like this. The concept involves all therapies taking place under one roof. Therapies will include Occupational, Physical, Speech, Music, and Habilitation. Habilitation will include play groups, ABA (Applied Behavior Analysis) classrooms, recreation gym and the like. We also hope to incorporate preschool and kindergarten classes in this center.

This is our phase one goal and our phase two goal would be to open up a special needs charter school, which will be available to special needs children from K-12. At this point, we have nearly completed our business plan, are “closing” in on a location for the first center in the East Valley, obtaining our non-profit status and completing the application documents to be a DDD (Department of Developmental Disabilities) approved center.

We ask at this time for prayers and wisdom as we continue to make decisions on best how to start-up and manage this center. We also ask that you pray for patience as this can be a long drawn out process with many frustrations. However, in the end, we know that it is all worth it and that is why we are pouring our hearts into this.

We want to thank all of you that have supported and prayed for Lauren. She is two years post transplant and doing well. Lauren will turn six years old on 11-15-06. We are so thankful to report that we haven’t seen any regression with Lauren. Her progress is slow but consistent. She is continuing to progress thru her ABA goals and progressing with her school goals.

We also have a prayer of thanks. Lauren isn’t having seizures. She has parasominal sleep disorder. The doctor thinks it is being caused by the antihistamines she has been on for a persistent upper respiratory infection she had. Lauren seemed to be doing better while she was off of the drugs. Unfortunately, she has developed another cold. Please pray we can get her healthy and keep her that way for a while.

Happy Thanksgiving.

We just got back from our first family vacation to California. Lauren enjoyed the beach. We’ll post some pictures for everyone to see. Since we’ve been home, Lauren has been experiencing some seizure-like activity. In addition, she has been fighting an upper respiratory infection. She went to the neurologist last week and he thought it was possible that it could be a sleep disorder instead of seizures. Therefore, she is going to the hospital on the 19th and 20th of this month for tests. We ask that you pray for her during this time and that it is determined to be a sleep disorder rather than seizures and it wont require medicine. The sleep disorder is benign and she will stop that on her own.

Check out the new family photos on Lauren’s gallery.

Sorry it’s been so long since we last posted. Progress has been slow and we haven’t had a lot to report on. This weekend, a couple of events occurred that has prompted us to post.

Lauren went to the doctor Friday to get another one of her shots in the long process of returning to her pre-transplant vaccination stage. She received her Meningitis shot. On Saturday morning, she woke up with some blood (dried) coming out of her ear, so as a precaution, we took her to the doctor. It turns out that she has an ear infection in the canal, most likely caused by Swimmers Ear. It’s not in the ear drum, so hopefully it won’t affect her hearing or cause further loss. She is now on antibiotic ear drops for the next 10 days and “grounded” from the swimming pool for 5 days. Nathan and Lauren both are fighting a small cold as well. Luckily, Lauren doesn’t seem to be in any pain from the effects of the shot, ear infection or cold. As far as she knows, “Life is Great.”

Lauren has hit and miss days with potty training. Some days, she doesn’t have any accidents and other days are just the opposite. We think she has the concept down, but doesn’t yet understand or ask to go potty. We’ll keep trying. After all, most Sanfillippo Syndrome children never potty train.

Please pray that Lauren’s ear infection goes away quickly and without any damage to her hearing. We hope to have some more progress to report soon.

Carrie took Lauren to the dentist this morning and with his help, they were able to remove it quite easily. I guess Lauren is growing up.

Carrie has been working with Lauren on potty training all week. Today was a great day…no accidents. Everytime Carrie put her on the potty, her pull up was dry and she went in the potty at that time. We are very proud of her. Please pray that she develops the ability to know when it is time to go potty and either alerts someone or goes on her own.

We have posted a couple of new pictures from today in the gallery (missing tooth and sitting on the potty). Thanks for your continued prayers.