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Main | Day +314 (5/4) Some new issues.. perhaps new challenges »

Day +365 (6/22) Happy Anniversary, Fallyn!!


Where did the year go? Sitting in the room on 5D, there were days that minutes dragged on like hours & days. And now here we are celebrating her 1 year anniversary! Wow, the remainder of the year flew by. This is fantastic. Fallyn has definitely had a remarkable improvement in her quality of life as well as her prospects for a longer, healthier and happier one. We continue to hope for further improvement.

She is continuing to show improvement, never more so than when the “ITCHY MONSTER” stays away! The Itchy Monster continues to rear his/her/its ugly head from time to time, but Fallyn manages to subdue it on most occasions. Her skin is still fragile.  But, though she does suffer damage, more trauma is required to produce it.

I have tried to reduce her bandaging on several occasions with bad results. Either my new application causes problems or it does not offer the protection she has come to rely on. Her mouth though seems to be a bit of an exception, perhaps because it is ‘soft’ tissue… or maybe it is just my impression that it is an exception? She has always had issues with eating & that is still the case. With her diet of almost exclusively Boost Kid Essentials 1.5cal with fiber, she has put on a substantial amount of weight and has grown too. She is 47.75 inches tall and 55 pounds.

She remains anemic; at least clinically the blood work says so. She does still get Iron supplements 2x/day (the same as pre transplant), but has a much higher energy and stamina level now. I have not been notified of any anomalies in her blood work since we arrived home. She has had 1 infection, quickly dealt with, and has otherwise continued her post BMT recovery nicely.

Now that school is out we have been busy with our routine checkups with all of her local doctors. Her eye remains unchanged and we have reduced the strength of the steroid drop we apply twice daily. We continue to monitor the advance of the growth and hope it stays where it is and continues to not limit her eyes movement. As long as it remains ‘dormant’ we will just watch. I am awaiting a call from the scheduler from Dr. Ernest K. Manders (her Plastic/ Hand Surgeon). Fallyn is supposed to have her left wrist & hand worked on the last week of July or the 1st week of August. While she is in the OR, her Dentist, Dr. Brian S. Martin, is going to meet us in the OR to pull her 2 upper front baby teeth which were pushed back by her new adult ones. He is also going to get a ‘good’ look at her mouth at that time. We still need to see her Pediatric Surgeon (I think she needs a larger G-Tube) as well as pay a courtesy call to her dermatologist, Dr. Douglas Kress.

We have our itinerary for her 1 year follow-up in MN and will be flying up there on 7-17 & returning on 7-23-10. While she is there we will have consults with numerous doctors, lots of blood work and of course the endoscopy through the G-Tube, full body photos and several skin biopsies. I am hopeful that this time they will process the samples in a manner to allow a proper analysis of the Collagen VII level. The last attempt failed to yield results so we are working with the previously reported value of 33% from the 120 day samples.

Jennifer and Stephanie will be accompanying us on this trip too. We are hoping there will be room available at RMH for us during our stay. Apparently there is a swim meet at the University during that time and local accommodations are booked. The schedule we have currently allows us a free day on Thursday and the girls would like to do something “FUN”. I am also hoping we will have the opportunity to visit with some old friends we met while there and of course we will make new ones.

Fallyn is set to start back to school in the fall and already has a paper chain in her room counting down the days until August 30th and her 1st day of 3rd grade! She is to go on a modified schedule with a 10:00 pick up time allowing more time to get daily AM care completed before her long days in the class room.

Thank you for all of your continued interest, support and well wishes they are greatly appreciated. I will continue to update occasionally or as the situation warrants.

Again, thank you,

Frank & Fallyn