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Friday, January 28, 2005 07:06 PM MST
Carrie and Lauren went to Tucson yesterday for their weekly visit. Her blood tests have revealed that her bone marrow cells are 100% male, meaning that she had 100% engraftment from Nathan and none of her cells re-grew. This is very good news. Lauren is doing so well that she only has to get her blood checked once a week now. AND, she gets to skip her visit to Tucson next week. The doctor also lowered her CellSept (immunosuppression drug) dosage to 0.5 mL, with hopes that she will be taken off this in about two more weeks and hopefully remove the hickman catheter three weeks after that.
We go to the audiologist on Monday. Please pray that we get positive results and that her hearing hasn't gotten worse.
Thanks for your continued prayers. Life is getting back to "normal" more and more.
Tuesday, January 25, 2005 06:33 AM MST
We had quite a "scare" the other night. Right before bed, Carrie discovered a rash forming on Lauren's left leg. A rash is one of the first signs of Graft vs. Host Disease. She immediately called the doctor to describe the situation and he told her that it normally starts on the chest area. He asked us to monitor it and call in the morning if it got worse. Well, when I went to bed later that night, I had to remove her IV, so I checked her at that time and it had dissipated. By morning, it was gone. FALSE ALARM, thank goodness.
We did receive some encouraging news as well. One of the transplant patients who is two years post just had an MRI performed to check the damage to the brain. What they found was that the brain damage had decreased...the stem cells had made it to her brain and were repairing the damage caused by Sanfillippo Sydrome. Carrie decided to call this child's mother and they spoke at great lengths. She gave Carrie some information that she was not aware of as well as described some possible milestones that Lauren may make in the next two years. She also indicated that all of the transplant children (post 2 years) are receiving improved MRI's. What a joy that news is!!!
Our families were brought to tears over this very exciting and encouraging news. God continues to work a miracle in Lauren and now we have something else to look forward to in Lauren's recovery. Please keep praying for our little Lauren that the cells reach the brain and start repairing the damage to her brain quickly. We are hopeful that since Lauren has a related donor, something which has not been done on a Sanfillippo patient before, that it may speed up the process of cells getting to the brain.
Wednesday, January 19, 2005 10:06 PM MST
Lauren is continuing to do well. She still doesn't have much of an appetite and has lost another pound since last week. She is drinking her Resource juices pretty well, which helps her get her minimum calories, nutrition and vitamins. Carrie and Lauren are going to Tucson tomorrow for their weekly visit with the doctor and to receive IVIG. She did spike a slight fever this evening, but we think it might have been from her outdoor walk. Our weather is in the 80's this week. She seemed to be o.k. after her bath and it did not go up any further and actually came down.
She is being challenged everyday by so many people, but her biggest "challenger" is her brother. They are such great buddies and we see her mimicking and repeating stuff that he is doing. We think it is great for her. She is now sitting on her own potty chair while he goes and she has actually gone a few times herself.
There is not a whole lot of other news as Lauren remains very stable, life is getting back to "somewhat" normal, and we are hoping and praying for success and future treatment. God has been so incredible in our journey and we know he is an Awesome God. Thank goodness our lives are faith based...it has made everything so much easier to deal with. Thanks to those of you still praying for our family and Lauren especially. There definitely is a power to prayer.
God bless you all.
Love,
Brian and Carrie
Wednesday, January 12, 2005 10:25 PM MST
Well, it's been quite a few days since we last posted. Lauren is doing really well. Her appetite is very weak, but she is drinking well. Therefore, she is continuing to have constant diarreah since there is no food going into her system. She lost nearly a kilogram (approximately 2.4 pounds) her first week home. However, she is maintaining that new weight and the doctor's are not concerned as long as she continues to drink her Resource supplement drinks. Carrie is currently making one trip to Tucson per week for clinic and one visit per week to a lab in Phoenix for blood draws.
She is receiving 1 hour sessions of Physical Therapy 2 days a week, Occupational Therapy 1 day per week, Speech Therapy 1 day per week, and Music Therapy 1 day per week. In addition, she is starting to see a feeding specialist 2 times per week. Miss Margaret works with Lauren every morning from about 7:30 or 8:00 a.m to noon on Habilitation. Brian gets home at approximately 6:00 p.m. and by the time we eat, the kids get bathed, dressed for bed, and Lauren gets her medicines, it is 8:00 p.m. and they go down for the night. It is a hectic schedule, but we are learning to adapt to the new demands required to care for Lauren as well as Nathan.
Lauren's hair is growing back now, but it is now coming in brown. We are not quite sure if she will be a brunette when it all comes back, but the remainder of her blond hair is falling out to make room for the new. In just the past 2 days, it has become very noticeable. Prior to that, you had to look closely to see it.
Nathan is nearly potty trained now, which is a blessing. He is doing very well and has only had a couple of accidents. Lauren and Nathan are great buddies, they play well together and they are both glad to be back with one another. Nathan is mommy's little helper...maybe sometime too much. He now thinks that he needs to "help" mommy and daddy punish Lauren when she disobeys. But he also brings mommy and daddy stuff to help (i.e. diapers, wipes, cream, etc.).
We are so glad to be back home and mostly settled into our rental home for now. We are so thankful for all of the help and support that we received and can't thank everyone enough. May God bless you all.
Love,
The Reeds
Saturday, January 1, 2005 10:25 PM MST
The Year 2004 has come to a close and what a year it was. Our Christmas letter, which many of you received, talked about Miracles revealed to us by God. In case you didn't receive a letter, here is the text:
"Do you believe in MIRACLES? “We do”. What can we say to the friends and family who have supported, helped and prayed for Lauren and our family this past year? Thank you! PRAISE GOD for MIRACLES!
This has been a very memorable year. We spent the first nine months of the year putting Lauren through test after test trying to determine what might be causing Lauren’s multiple developmental delays. In September, we received the devastating news that Lauren was diagnosed with Sanfilippo Syndrome and the doctor told us there was no treatment or cure. Our first instinct was to ask God, “Why our little Girl?” But we knew God had a plan for Lauren and we had to put all of our faith and trust in Him. We put Lauren on prayer chains across the country and the very next day, God revealed his first MIRACLE to us; there was something we could do to save our precious Lauren. The second MIRACLE was learning why God had led us to save Nathan’s Cord Blood…a perfect match AND related donor for Lauren, giving her an extra 20% survival rate over a non-related donor. Our third MIRACLE was God providing the financial blessings to make her treatment possible. The biggest MIRACLE yet has been watching Lauren go through her transplant with so few complications that she has amazed the medical staff. Her continual smile and beautiful singing voice illuminate God’s spirit, and this has been noticed by many people at the hospital.
God has used Lauren to impact so many lives and given us so many opportunities to share our testimony. It will be 18 months before we know if the transplant was a success. We pray and ask you to continue to pray that someday Lauren can share her own testimony. We have seen so much generosity, dedication and prayer from friends and family all over the world. Thank you for your prayers and support. God has been so instrumental in our lives through all of this. We give Him the Glory and Praise him for the most wonderful MIRACLE of all…the Gift of His Son."
Christmas was truly the best ever as we brought our little Lauren home to see Mia, Poppa, Nonna and brother Nathan. What a celebration we had! Yesterday, Lauren came home from Tucson. She will make trips with mommy once a week to visit Dr. Graham for a while. She is on all oral medicines now and is still eating...lightly. We are encouraged by the adventures she is taking with trying new foods. We hope that she is less picky. After all, she got Nathan's cells and he eats just about anything in sight.
We are starting to settle into our rental home and things will get back to normal...almost. Lauren won't be able to go out in public for the better part of the next year. Once she is revaccinated, she will be able to join the public. Nathan will be semi-isolated as well. They will be each other's play partner for the next year. Daddy goes back to work Monday after a 2-1/2 month leave of absence.
We hope you all had a Merry Christmas and a safe and happy New Year. Thanks again for your continued prayers and support. God bless you all.
Love,
Brian and Carrie
Saturday, January 1, 2005 12:37 PM MST
Lauren is HOME! Brian and Carrie brought her back to Gilbert on New Year's Eve. They are in the process of unpacking boxes and furniture in their rental house, and will post an update as soon as the computer is unpacked and connected.
Lauren got to come to Gilbert for a visit on Christmas Day with Nathan and the grandparents, and we will post some pictures so everyone can see her in her red dress and Santa hat.
We hope you all had a wonderful Christmas and that 2005 brings abundant joys and blessings. For our family, the new year has brought hope for Lauren's future. We thank you for your support in making that dream possible.
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