Meet sweet RHETT!!
Meet Sweet Rhett! What an AMAZING little human being.
Rhett Walker Stone is an adorable little boy who is turning 5 on June 29th, 2015. He’s a bright-eyed, charming little hunk-a love who enjoys laughing, smiling, and meeting new people. He absolutely adores his older sisters, 9 year old Summer and 7 year old Savannah. He loves being in the pool, splashing in water, watching other children play and watching TV. Rhett laughs out loud at Toy Story with his favorite characters, Buzz & Woody and he gets so excited when Team Umizoomi is on the television. His absolute favorite object, believe it or not, is a sock. We have tried (unsuccessfully) to find a suitable alternative, but he will pull a sock off his little foot 100% of the time and start twirling it lightening fast in his hands. Rhett eats like a champ and we are always amazed at how much food that little boy can put away. Although he can’t walk or talk, he is a smart little boy. He knows and can identify all his ABC’s, 123’s, colors, animals, shapes, some words, family and friends. He enjoys playing educational games that identify the aforementioned items on his mommy’s iPad. Rhett also knows some sign language, the sign language alphabet and signing numbers 1-10. Although he doesn't have the manual dexterity to form all of the sign language letters with his own hand, he can manipulate his therapist's hand to form each sign language letter of the alphabet. To meet Rhett is to LOVE him, he enjoys all interaction with people and animals. If you sit near him it won't be long before he will grab your arm or hand with his frail little fingers and try to get you to rub his head, or he'll put his chin in your hand and just smile up at you. He is such an adorable, sweet, angelic child. Be sure to view the photo gallery of Rhett (there are 43 of them!) and the video links at the bottom of this page if you'd like to get to know him better.
So....What's going on here? Rhett's Medical Situation
Rhett has battled and overcome many obstacles since he was born, but he still has a long way to go. The many medical terms we have heard from countless doctors since Rhett's birth are: congenital hypotonia, benign external hydrocephalus, static encephalopathy, developmental delay, cerebral palsy, CFC Syndrome, hypoxic brain injury, failure to thrive....it seems like we get a different label from each doctor we visit. We do know his brain ventricles are enlarged (photos from this year's MRI are in the photo gallery) and that there is some damage to his brain, but his doctors cannot tell us anything about how/why/when it happened. At present, we are 6 weeks into a 12 week waiting period for a "whole exome sequencing" genetic test. We hope that yields some answers, especially since Rhett's muscles seem to be wasting at an alarming rate. Because of this muscle wasting, Rhett has been referred to an out-of-state motility clinic.
Rhett can sit up on the floor if placed in a sitting position, but if he falls over he is a prisoner in his little body and cannot remedy his situation by sitting back up. He is completely non-mobile. For almost 5 years now I have gone up to Rhett's room in the morning to be greeted with a sweet smile and laughter, but no movement from the same position he was in when I put him to bed.
Rhett LOVES his therapists and his teachers at Harwood, which is his 3-day a week special needs preschool. At present, Rhett receives speech therapy, occupational therapy and physical therapy. He was receiving hippo-therapy (therapy using a horse), which yields the best results, but we are in a barn-transition so that is currently on hold. Some weeks Rhett will have up to 8 therapies. Rhett’s biggest issue is the severity of his hypotonia, or low muscle tone. Rhett’s body is much like a rag-doll. He cannot assist when picked up, so he is 45 pounds of dead weight. He is very weak and frail through his shoulders and arms and when picked up it feels like his joints will dislocate and he will slip right through your hands. He has little to no subcutaneous tissue over his ribs and his skin is VERY thin. Because of this, it is painful for him when trying to lift him into his car-seat (he cries), and painful for us because he is so heavy. The hypotonia affects every aspect of his life. He must take a full capful of Miralax daily in order to use the bathroom effectively since his bowel muscles are equally as weak as his limbs. We place him in a stander which helps him as well. Rhett will very likely be in diapers the rest of his life. At almost 5 years of age he is not cognizant of toileting needs. We get large boxes of diapers mailed to us each month.
One of Rhett's favorite things is eating. I have not found a food that Rhett does not enjoy. However, Rhett cannot chew effectively. He mostly swallows everything whole. Because of this, we puree his food, or just make sure it is in small, soft, manageable pieces. He has learned to feed himself with the use of a suction-cup "scooper" bowl and a tiny spoon so he doesn't choke himself with huge bites. He makes a huge mess, but we are thrilled that he can feed himself! All of Rhett's liquids must be thickened to a honey consistency or there is danger of aspiration. I do this with Xantham gum powder that I purchase online and a hand-held blender. Unfortunately, another issue Rhett faces is Oropharyngeal dysphagia. He will reflux liquids minutes, and sometimes hours after drinking. You can pull his little chin down while this is happening and his mouth will be full of liquid that he is attempting to re-swallow. It is so worrisome and scary to watch and I feel powerless to help him.
Rhett is also extremely susceptible to upper respiratory illness. He gets bronchitis often with wheezing and very high fevers. It seems like we get over one bout and then another one begins again. It is not unusual for Rhett to just run a constant temperature of 99-100 degrees. Rhett's PCP stated that Rhett's body has trouble regulating temperature. The last time he got sick a few weeks ago his temperature rose dangerously high to 105.7. Extremely scary.
Rhett can make some sounds, and lots of laughter, but nothing close to words. I pray one day to hear his sweet little voice say "Mommy." I ask that you please pray for Rhett and our family. Please pray about all of the medical issues described above, and about this crowd-funding campaign to raise the money needed for items related to Rhett's immediate and long-term care.
YOU can help in a BIG way...
This is not easy at all...asking for donations. But please, if you feel led, help us to help our little boy. A donation in any amount is so appreciated, every little bit from multiple sources adds up quickly. Thank you for making a difference in the life of our sweet Rhett. Thank you for your prayers and generosity. All proceeds will help cover some of the unforeseeable costs associated with Rhett's care and travel expenses for the future for the motility clinic. His immediate and long-term needs are listed below.
Please join us.
We chose YouCaring and WePay as our donation partners because they are secure and reliable, and they only collect a very small percent of Rhett's donations (about 3%) -- the smallest percentage of all fundraising sites out there.
Please don't hesitate to contact Amy or Brent Stone if you have any questions. Amy: Amytreecestone@yahoo.com Brent: Brent.stone@me.com
Here are a few ways to help:
1. Share & contribute through this website
2. Paypal, just go to the Paypal homepage and select "send money" then select "sending money to a friend or family member", enter my email address (Amytreecestone@yahoo.com), enter the amount and any comments you would like to make, and confirm.
3. Square Cash App. Enter my phone number: 901-219-5864
4. Mail a check to his address made out to Amy Stone:
54 Oak Grove Dr, Byhalia, MS 38611
Spread the word and/or pray for him. PLEASE SHARE THIS CAMPAIGN with your friends, family and any outreach groups that would be willing to pray for our son and support our fundraiser.
Rhett’s Immediate GOAL:
- Handicapped Accessible Van: Rhett has many, many expenses and other needs. Not everything is covered by insurance. Unfortunately, we fall into that in-between category where we don't qualify for assistance for items like a handicapped vehicle. At this point of Rhett's development his immediate need is a handicapped accessible van. It is exceedingly difficult for Rhett's parents to lift him into his car seat, in and out of the bath, or anywhere that requires lifting. He cries when lifting him up into his carseat. He MUST be supported around his trunk and it is almost impossible to do this due to his size and weight. His skin is very, very thin as there is little sub-cutaneous tissue covering his ribcage. It is painful for him being lifted around his middle and under his arms. As described above, Rhett is very frail through his shoulders and arms and when picked up it feels like his joints will dislocate and he will slip right through your hands. Frankly, I do not know how much longer I can lift him in this manner since he's so heavy. A handicapped accessible van with a wheelchair lift would be perfect for our situation and transitions. We would be able to strap his wheelchair down and use it as his car seat instead of having to pick him up and do those transitions that are painful for all of us.
Rhett’s Long-Term Goals:
We don't know what the future holds. I often think about how I will care for Rhett when he gets older. He is almost 5 and it is difficult caring for him now at 45 pounds. I am trying to prepare the best I can. Below are long-term needs.
- Accessible house conversions (wheelchair ramp, bathing lift)
- Special needs schooling, related therapies
- Long term care account
=================================================
If you would like to learn more about Hypotonia, and about Rhett (with videos and pictures) then please stay-tuned to this page and revisit often. Rhett's Hypotonia blog will be up and running soon! Thanks again, so much!
Brent, Amy, Summer, Savannah & Rhett Stone
No comments:
Post a Comment