Day +109 I know this post is long overdue and I have like 20 days or so to fill in... So we have reached our Day +100 mark which was really exciting. Ryland even received a certificate and a special bead. The bead will be added to his beads of courage strand. Day +100, is when the Dr.s discuss sending you back home. Since we have moved to Minnesota, this was not part of our discussion. Ryland did receive his third Intrathecial (spinal) enzyme on this day and all went well. He has one left at the 6 month mark- January. Grandma from Homestead, Florida came to visit and was here for about 6 weeks. This was a huge help to the family especially, when Ryland was readmitted to the hospital the beginning of October. She wont be back until the spring now, left just before the first snow. Last Monday, Rylands white blood count was a little low (2.1) and his neutrophil count was low too (0.5). He received a dose of GCSF aka Miracle Grow. This was a 30 minute infusion and ran the same time as his enzyme. This will help get the cells to multiply. Drs said the low neutrophil count could be a virus. They are running a virus panel on him to see. Praying for better counts on Monday. At 20 months old, Ryland only has four teeth on top and four on the bottom and those teeth are not completely in. This is due to the thickening of the gums caused by the build up of the storage material from the lack of the enzyme. Since his transplant and all the enzyme treatments, his gums are not as thick and he has a mouth full of teeth fighting to get through. This has caused him to be a little mamas boy. We are down one more medication, at Day 100 we said good-bye to Fluconazole. This drug helped prevent fungal infections. We are now at a total of three medications only- 3 times daily. One of the medications called Cyclosporine (CSA) causes excess hair growth. This is why Ryland looks so tall, dark and handsome. CSA is tapered down starting at Day +180 and this hair should fall out as well. In the meantime, we are enjoying his wintercoat. Today we had an in-home evaluation for Ryland. There was a team of women-Teacher of Deaf/Hard of Hearing Learners, an Educational Audiologist, Special Education Teacher, and a Speech-Language Pathologist part of the Help Me Grow / Infant Toddler Intervention Program. Together, this team of women will visit Ryland and get him up to speed so when its time for school, he is ready. Overall, Ryland is doing well. He is a typical 20 month old toddler and acts just like one. He loves to be the center of attention. He has a strong will and knows exactly what he does and does not want yet, he has this soft sweet side. He loves to give kisses and cuddle. He even puckers his fish lips up for the nurses. We enjoy everyday with our little blessing and yes, some days are harder than others but, each day is a new day and we look forward to every moment. Thank you all traveling the journey of Rylands Ride. We are forever grateful for all your prayers, love and support. Xoxo
Posted on: Sat, 15 Nov 2014 03:45:55 +0000
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