Save Lauren Reed Official Fundraising Site

Sunday, June 11, 2006
Lauren's surgery went very smoothly....she was out after about 30 minutes. Unfortunately, her results on her ABR (hearing test) weren't what we had hoped. The test confirmed that her low frequency hearing has a mild to moderate loss. Her high frequency hearing has a moderate to high loss.

We have started a new website that is easier for postings and adding pictures. It uses WordPress for blog type entries and Gallery for posting pictures. Thanks to Brian's Uncle Daryl and Mom for making this move. This should allow us to post pictures more frequently. Please visit www.savelaurenreed.com/blog and check out the new page. This website may not be active much longer, so please update your bookmarks to go straight to this new address. Look forward to having you see our new site. Please let us know you stopped in by leaving a guestbook comment.

Carrie and Brian will be at a Marriage Conference all weekend. The kids are staying with Brian's mom the first day and Carrie's parents the second day. We thank them for sacrificing part of their weekend to help us strengthen our marriage. This will be our second time attending this conference. The first time was in our first year of marriage. This October, we will celebrate nine years of marriage.

Thank you for all of your continued prayers and support.

Friday, April 14, 2006 06:37 AM MST
Lauren is doing well overall. She has struggled with a few upper respiratory infections lately. We found out Wednesday that Lauren has fluid in her ears again. This will be her 4th set of tubes in her ears. We attempted to retest her hearing today but she wasn't very cooperative in the sound booth. So they will retest her hearing while she is under anesthesia for the tubes. Lauren has been losing her balance and falling again like she used to before transplant. We are praying that this is due to the fluid in her ear and not a disease progression.

Lauren had 3 ABA providers. Two of her providers have had to quit temporarily. Lauren's remaining provider has been making some great progress with Lauren's ABA goals. The increase in her expressive language is the most noticable change. Lauren is wearing her hearing aids well now for all her therapy sessions. I am so thankful that God brought this provider into our lives. Please pray that we are able to find another provider soon as Lauren needs 4-6 hours of ABA, 6 days a week.

I have been very encouraged lately because when people see Lauren after not being around her for a while they are so impressed with the progress she has made. Lauren's audiologist couldn't believe how much improvment she had made since December. She wasn't interested in the hearing test but was very talkative today. This was the first time he had heard her talk very much. In past visits she would only echolate what he would say. She answered simple questions and followed simple commands. (Praise God)

Lauren and Nathan are very excited that the swimming pool is going to be ready in the middle of May. I have a swim instructor that will be coming to the house once a week. I am hoping the kids can get water safe quickly. I have also found an aquatic therapist to come and work with Lauren once a week. This is to help with her body awareness and sensory issues.

Lauren loves her hippo therapy. Until recently her balance had made marked improvement(we are hoping her recent setback is due to fluid in her ears.) When she first started riding the horse, she had difficulty keeping her balance riding forward. Now she is able to ride forward, backwards and side sitting and rarely needs to be repositioned. She looks so adorable riding on the horses. I will try to put some pictures on the website soon.

Thank you for continuing to stop by and check on our little angel. We are so thankful for your prayers. We pray you all have a wonderful Easter. God Bless

Tuesday, February 28, 2006 09:35 PM MST
Our yard is landscaped and Daddy put the playground set together. So, Lauren can go outside and play again. Yeah! Lauren isn't allowed to play in the dirt due to Arizona having valley fever spores in the dirt. Lauren used to stand and look out the window and beg to go outside. It would break my heart to always have to say "no." We have been playing outside daily now. It has helped wear her out so she goes down so much easier for nap and bed time.

Lauren is trying to talk more and more but she struggles to find some of the words. For example, she will say I want blank please. She will repeat the want several times until she is able to process the word she is looking for. This week we are setting up a pecs system throughout the house. Pecs is a book or board full of related pictures you will find in each room. Our hope is that when Lauren can't remember the name of the word or she is trying to say something new, the picture will be able to help me to help her. Lauren's vocabulary consists of about 80% nouns. This limits her ability to form sentences. We
have started her watching a video series to help children with verbs (we are starting with action words). This video series has had a lot of success with children with Down's Syndrome.

Lauren has just recieved her second vaccination. Lauren has been struggling with some mild colds on and off since January. We are hoping that as spring comes she will be healthier again.

I have had some people asking about my eye. My eye seems to be doing better. My vision is still really poor but the doctor told me that is to be expected for the first year. I am having preventative surgerry on the other eye March 7th.

Thank you for continuing to check on Lauren's progress and for your continued prayers. There is a link on the front page for a new picture of the kids.

Thursday, January 19, 2006 09:52 AM MST
Sorry it has been so long since the last update. We have been busy getting the house ready. We moved in before it was completely done. It is almost done now. We have started landscaping the yard. The kids are very excited to get a play ground set in the back yard since we have no parks in our new development.

Carrie had to have emergency eye surgery on 1-13-06 as she was diagnosed with a detached retina. Recovery is going pretty well. We are very blessed to have so many people offering to help AGAIN. Thank you to all the people that have helped out this week.

Lauren is doing pretty well. Progress is slow. The good news is that we haven't seen any signs of regression. Lauren tested at a 25 month old level pre-transplant. She now tests with scattered skills between 30-36 months. Lauren is 5 years old so her delays are significant but she is very happy.

We are thankful everyday that she is happy and enjoying life. She isn't in any pain or suffering. We pray everyday that this continues. Some of our little MPS friends our suffering and my heart breaks for them.

Lauren has made the most improvement with her gross motor skills. Now that she has been able to run and is starting to jump, her balance is so much better. Along with this, came an increase in her self- confidence level for trying new things. She always wants to be in charge. She loves to march and bang pots and pans (like drums). Of course she always wants to be first. She also has started to want us to have races with her. She of course has to say READY SET GO. She doesn't like to have Nathan play because he isn't as well trained as the rest of us yet. You have to let Lauren WIN.

Lauren had been staying in our bedroom ever since we got home from the hospital due to limited space in the previous house and the need to be close to her during the early stages of recovery. Our goal was to move her into her own room when we moved into our new home. Mia and Poppa got her a new bed that is really pretty and she really likes her room. When we first moved in, we had to lie down with her until she went to sleep, but in the past couple of weeks, we have “tucked” her into bed and walked out. For the most part, she is doing pretty well getting to sleep on her own. We're proud of her.

Lauren's hair is starting to get lighter again. We will post some new pictures of her soon.

Thank you for stopping by to check on Lauren and thank you for your continued prayers for her.

Tuesday, December 27, 2005 07:59 PM MST
We hope everyone had a wonderful Christmas. We sure did! We had so much to celebrate this year. Lauren is healthy, and has made so much wonderful progress since her transplant.

Brian and Carrie have been settling into their new house. (Carrie even managed to decorate for Christmas.) Lauren did amazingly well during the move, and has been sleeping in her own room since the first night. I'm sure the brand new bedroom set and pretty pink and yellow decor that her Mia and Poppa did for her were great incentive. They still have not been able to get Brian's computer going so that is why I am writing the update this month.

Lauren's ABA therapy has continued well, and they had a re-assessment with all of her doctors and therapists today to fine-tune her protocol. She is making really good progress. I can notice a big difference with her communication and pronunciation. She is using sentences correctly, and understands more and more questions and commands. This month she also started hippotherapy, which means therapy with the help of a horse. Everyone was skeptical of how Lauren would react to the horse, but she surprised us all by loving it. As soon as she saw the horses, she grew excited, and was thrilled to be able to ride one. The therapists have her help prepare the horse for riding, and then to brush him afterwards. If you would like to know more about this treatment, you can check "www.americanhippotherapyassociation.org" and click "What is Hippotherapy". Also, for information on ABA therapy, check out www.centerforautism.com/aba.

Lauren is continuing with the genestein and seems to tolerate it well. She had a couple of days that she wasn't feeling well this past month, but recovered more quickly than before. Nathan had a little bug that Lauren didn't even get. She has also started with her re-immunization process.

The Reed family wishes you all a very blessed holiday season, and a wonderful 2006. Thank you from the bottom of our hearts for following Lauren's journey this past year, for your heartfelt guestbook entries, and especially for all of your prayers for our family. God bless you!

Donna (Brian's mother)

Thursday, November 24, 2005 07:31 AM MST
Sorry it has been so long since our last update. We have been very busy trying to get everything finished on our new house. We are finally there. We are moving in on Friday. We have to be out of our rental by the end of the month. So, we just made it.

Lauren celebrated her one year post transplant day on Nov. 5th. She is doing so much better than we could have hoped for. She seems to be thriving. She hasn’t regressed any since transplant and has gained many new skills. She just seems healthier. We feel confident that God has a very special plan for Lauren. Our prayer for Lauren is that she someday is able to share her testimony with others. She already does in her own way. When she sings “Jesus Loves Me”, her sweet spirit impacts so many lives. We hate that our sweet angel was cursed with this horrible syndrome but we feel so blessed for every day God gives us with her. Thank you so much for your prayers and support thru this difficult year. We know we have a long road ahead of us, but with prayers and therapy, we have very high hopes for Lauren’s future.

We celebrated Lauren’s 5th birthday on November 15th. She turned 5 years old. We had her party at an indoor play area for kids ages 1-6. We rented the place for the morning so Lauren wasn’t exposed to a lot of other children. Her brother and 2 of her cousins were all that were there. They all had a great time. Lauren spent her 4th birthday in the hospital, so getting to see her play with other kids and just be able to get out and start going places again is so wonderful. Lauren starts her revaccination process on November 29th. It is going to be 3 years before she is caught up with all of her shots again. Please pray that Lauren does well with the vaccination process and that she doesn’t have any regression during it. The long term success of the transplant and the soy pill Lauren is on is unknown. So please continue to pray that it will stop the progression of her disease or that a cure can be found.

We want to wish you all a very Happy Thanksgiving. As you can tell, we have so much to be thankful for this year. You all are a very important part of that. Your prayers and support have been so appreciated. We pray that God blesses all the families that have been so wonderful to our family this past year. THANKYOU!

Sunday, October 30, 2005 09:09 PM MST
Sorry it has been awhile since my last update. We have been busy trying to get everything done on the new house, the lease on our rental is up at the end of November.

Lauren is going to have to get new therapists and since we are changing school districts, all of her homebound school providers are also going to change. A few of Lauren’s therapists are going to continue seeing her in the new house.

Lauren had a fabulous time staying with my parents. And it sounds like her Mia and Papa had just as good a time. Her therapists told me Mia and Papa didn’t want to give her up for her therapy because they were having too much fun with her. We also had a great time with Nathan. I think the trip was really good for him getting so much one on one time with Mommy and Daddy. Next year we can all take a family vacation together again and that will be wonderful. It was hard not to feel like something was missing…“Our sweet little angel.”

Lauren has been doing really well. We have seen a big improvement in her speech since starting the ABA. Lauren has been running more and more and has started to jump on her trampoline. A couple of weeks ago we noticed a decline in her gross motor skills and she started losing her balance frequently. Lauren’s doctor had started her on creatine a few days before this started. We have discontinued the medicine and she seems to be back to her previous level. Please pray that this was just a reaction to the medicine.

I have been told that there was some confusion with my previous journal entry. Lauren has survived transplant and is no longer at risk for transplant complications. Lauren still has Sanfillipo and there is no cure at this time. We have been told by the doctors at Duke that the transplant will stop the progression of the disease, but it cannot correct the damage that has already occurred. We will not know if this is true until the transplanted kids get older and we see the long term affects. We are praying the genestein pill Lauren is on or another treatment in the future may be able to help Lauren more. We do have so much to be thankful for. We were told not to expect Lauren to make any improvement her first year post transplant and Lauren has gained new skills in every area. PRAISE GOD!

Please pray that we are able to find new therapists for Lauren and she is able to bond with them quickly, without having any regression in her skills from all the changes. Thank you for your continued prayers.

Love, Carrie

Thursday, September 29, 2005 10:00 PM MST
We are taking Nathan on a trip to California for his 3rd birthday. His birthday isn’t until the 11th but we are going the week before while the amusment parks are still free for him. We were unable to give him a party for his second birthday because it happened while we were back at Duke for Lauren’s testing. We thought he deserved to have a special birthday this year with lots of one on one time with Mommy and Daddy.
Mia and PaPa are going to be taking care of Lauren while we are gone. I know Mia and PaPa have some special plans in store for Lauren also. I’m not sure which child is going to have the most fun? A special thank you to my parents and to Lauren’s Habilitation providers for helping make this trip possible for Nathan.

Praise God! We have more good news. We saw Lauren’s transplant doctor this week, and he gave her a clean bill of health. Lauren’s immune system is back to a level that she should be able to fight illnesses off like other children. On Nov. 5th (her one year transplant anniversary)we can start revaccinating her. We are able to give her the flu shot now, if we want to.

Lauren has been doing her knew ABA therapy for one week. I don’t want to speak too soon but I think I am already seeing improvement. I will give more details after she has been doing it for a couple more weeks.

Thankyou for all your prayers and support. It is greatly appreciated. Please pray specifically for safe travels and for everyone to remain healthy during our trip.

God Bless
Carrie

Monday, September 12, 2005 09:43 PM MST
Lauren has finally learned how to run! Yeah! Praise God! I had assumed that Lauren would never run. I was just praying she didn’t lose the ability to walk. I guess she taught me not to give up on her achieving anything. This may not sound like a big accomplishment to some, but for an almost 5 year old child with Sanfillipo to pick up a new skill like this, I am very encouraged.

Lauren is talking more and more. She has day’s where she is putting 4 and 5 words together (I think she is memorizing these sentences and not putting the words together on her own. She is using them in the right context though.) Other day’s she only uses 1-2 words. I can’t explain why this is happening. I have noticed that she has certain people she talks to more than others.

Her hearing aids are in the shop again. We did get her FM system (assistive hearing device, where someone wears a little microphone and Lauren has the speaker by her). I don’t think it is as good as her hearing aids, but it is a good option when she doesn’t want to wear the hearing aids or when they are broken.

I had to take a break from the potty training this past week because she was having chronic diarrhea again. I thought we had beaten this. She had been regular for almost 3 months. Hopefully, we can get it under control again soon.

Enough about Lauren’s skills...
Overall, she is just a happy, content little girl. She loves to play with her babies and have tea parties and of course sing. She has really started enjoying crafts. She loves to color, paint, glue and is very excited about scissors (still requires some assistance with scissors). She loves other children. I can’t wait for her to get to play with other kids again. Now she looks forward to visits from her grandparents, therapists and Daddy coming home from work at night.

We are going to be starting a new therapy with her called ABA. I am going through the training for it right now. I will fill you in on more details later.

Thank you for your continued prayer’s for Lauren. Please pray specifically for her GI system to get back under control so we can begin potty training again and for success with her new therapy.

Love,
Carrie