This year, when we got our tax refund, we spent quite a bit of it on Abigail. Just getting a few things that are necessary for her, can cost a lot. We are very thankful that our tax refund was sufficient for us to make several large purchases this year, both for Abi and for the kids (as well as fixing and maintaining our vehicles). We bought two items for her and they were awaited with much anticipation and excitement by all in the house. In honor of our special, amazing Abigail Rose and because I haven't done a post about her for too long... here are some recent photos and a little look into her life.
Josiah was excited that Abigail's chair & stroller arrived!
|Abigail trying out her new Special Tomato Sitter|
|Joining us at the kitchen table for breakfast.|
|Trying out her new Special Tomato Jogger|
A Little About Abi:
Abigail has a Mitochondrial Disease and has been severely disabled since birth. She has lost some skills since then. She once was able to "hit" at toys and grab toys to bring to her mouth. She once sucked on a pacifier and opened her mouth in anticipation of her bottle. She once was able to lift her head when on her stomach to study the world around her. She once was able to "walk" in her baby walker. And, she once was very "vocal" (but still non-verbal), and made cooing and baby noises (I miss that the most).
Real Life With Abi:
Among multiple things, she suffers from movement disorders. Her doctor has used the words dystonic, dystonia, chorea or huntington-like when referring to her movement issues. Though, she had these tendencies since birth, she did not suffer from them constantly or daily... until she had a severe and permanent reaction to Reglan. I had researched Reglan and knew that the risks for children with neurological concerns involved permanent tremors or dystonia. Because of my research, we refused to try Reglan to help with Abigail's vomiting and GI issues. A GI doctor and Surgeon pushed us to try Reglan several times. We wanted Abigail to get a procedure called a Nissen Fundoplication to try and stop the vomiting, but the doctors said they would not do it unless we tried Reglan first. They reassured us that any adverse side effects were extremely rare and not likely to happen. We finally (against my gut-feeling) agreed to try it. After just two weeks on the medication, Abigail was having constant (as in, non-stop 24/7) episodes of severe uncontrollable movements. It was so severe, that she was unable to sleep (she slept about 1-2 hours total per day), she was bright red with white around her lips, gasping for air, screamed bloody murder, was drenched in sweat, and every single muscle in her body was twitching (think: eyes, tongue, fingers, toes, etc.) as well as her extremities flailing around (she kicked her feet as though running non-stop), and skin-piercing biting (she was no longer able to suck on her fingers for comfort, since her jaw would lock down and bite involuntarily). She lost her ability (or desire) to smile or interact with us at all. It was HORRIBLE. In fact, she was put on Hospice Care soon after this time, because though we quit the Reglan, her symptoms from it continued. Our parents came and sat with us hours at a time, just watching her suffer and expecting her to die a miserable death. It was heartbreaking and exhausting, to say the least. After 4 weeks on Hospice, we took her off so that she could get the Nissen Fundo done (in our state -at the time- she could not get a "life prolonging" procedure done while on Hospice). She did get the Nissen Fundo done, by the way (at a different hospital, by a different surgeon then the one who pushed Reglan). After complications during the 4-hour surgery, the Nissen Fundo then failed just two months later (but, that's another story).
She was prescribed Diazepam (Valium), which helps keep her from having movement "episodes" non-stop, but she still suffers. At one point within the first year after taking Reglan, she stayed awake for over 60 hours straight. A doctor finally prescribed her Clonidine which helped her sleep for 18 hours straight (she still takes it nightly, though it's strength has worn off). Between Diazepam and Clonidine, she only has about one movement episode per day... that can last up to a few hours at a time. Once in awhile, she goes an entire day without any major episodes and other days she has several throughout the day. They are still the same as her first experience with them... the screaming, non-stop kicking & twitching, sweating, red/white face, and gasping. It is still HORRIBLE. She has been suffering from these episodes for 3 years now. Thankfully, after a few months, she did start smiling and responding to us again, but sadly her almost-constant cooing and baby talk stopped... though it resurfaces on rare occasions.
We have regrets and guilt and even some anger with so-called-specialists that we have had to deal with. That's where forgiveness comes in.
So, there you have a small look into the not-so-wonderful parts of Abigail's life. Can you please remember Abigail and us in your prayers?
(P.S. not every child has reactions to Reglan and I know many have used it with good results)