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Sunday, June 26, 2005 11:06 AM MST
We had a wonderful time in Atlanta. We picked the hottest time of the year to visit, but it was all worth it as it was great to see the family. The kids did great while we were gone. Thanks goes out to "Nonna" (Brian's mom), Margaret, Shelly, Tricia, Diana, and Mia (Carrie's mom). The kids were happy to see us, but seemed to be very content in the care of these people. We had a great time together on our mini vacation.
This week my mom was reading Tommy Bennett's website and saw that Alicia Bennett has started her children, Hunter and Ciara, on a soy pill. They just started on it and already their energy level has increased. So Carrie started doing research herself and called Alicia. Apparently there are two boys aged 16 and 14 with MPSIIIA that are on this and have been for 6 years. They are potty trained, walking, talking and eating. That was the most exciting news for us as most of you realize that children with this disease don't normally live past the age of 15 and their quality of life is very poor in the last few years. We decided to write the doctor that has discovered this "treatment" yesterday and ask him questions. He responded quickly. Our biggest question is if there is a reason that a transplanted child can't use this soy pill. He did not know and recommended we consult with out transplant doctor and/or pediatrician. Lauren has an appointment with Dr. Graham in Phoenix on Tuesday, so we will ask then.
We are really excited, but cautious about this new information. Please pray with us that this will be something great...what we have all been praying and hoping for...a "treatment" or cure. We'll keep you posted.
Lauren is still doing great. She is extremely lovable and happy all the time (except at bedtime). She is not a fan of going to bed. We are considering reducing her nap time to see if she will go down at night better and sleep later into the morning. Lately, she has been waking at daybreak, which is 5 a.m. We'd like to see her sleep until at least 6 a.m. Yesterday, she took a 1 hour nap, went right to bed at about 8:30 and slept until about 6:30 this morning. That is what we are looking for. So we will experiment and see if it make a difference.
We’ll be posting some new pictures on the website this week so that people can see what the kids look like, especially what Lauren’s curly hair is looking like. If you get a chance, sign the guestbook and let us know you are still following Lauren’s website.
Saturday, June 11, 2005 04:49 PM MST
Brian and I are going to Atlanta this weekend. We are leaving Lauren for the first time since pre-transplant. Lauren and Nathan are going to be watched by grandparents and Lauren’s respite providers. They should have a good time while we’re gone.
Lauren has made minimal progress with wearing her hearing aids but she has become an expert at removing them. She can rip them off in a split second and they always go straight in her mouth. Children with Sanfilippo tend to like to chew a lot. Yesteday, she chewed her ear mold and it split in two. Next week we will get her new ear molds made.
I talked to her audiologist today and we are going to order an FM system for Lauren. Another mother of a child with Sanfilippo recommended this to me. The speaker or caregiver will wear a microphone and we can sit the speaker next to Lauren or hook it on her chair or clothes. Hopefully this can help her at times when she is not using the hearing aids.
We got her a new pair of glasses this week She tends to be pretty hard on glasses. She did better with her last pair. This is her first replacement pair since Dec. 2004.
Lauren’s increase in spontaneous speech is her most noticeable improvement. It is not just her speech therapist that is commenting on it. All of her therapists and grandparents have noticed also. Lauren is now riding her tricycle 14 to 15 revolutions before she needs assistance. And she usually just needs her steering wheel readjusted, she tends to turn it in the direction that she is looking.
As you can see, Lauren is making little steps in progress regularly. We are very proud of her. It seems that her life is all about therapist visits, but we are so thankful that they are available to her. It is really helping her.
Brian and I have been in close contact with a new family whose daughter was just diagnosed with Sanfilippo Type A. Her name is Isabel Jurado and her website is http://www3.caringbridge.org/sc/isabel. Her parents have just decided to prepare for the transplant at Duke, so they are in a very aggressive mode of fundraising. Please add Isabel and her family to your thoughts and prayers.
Thanks for your continued prayers and support. We love you all.
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