Joshua Hasten Bolt's Journal
Written Oct 21, 2013 7:17am by Jennifer BoltYesterday, a beautiful 11 1/2 year old friend of Joshua's passed away. Before she became unable to withstand the rigorous activity, she was doing a home based IAHP Intensive Treatment Program, similar to Joshua's.
At 5:58 AM Sunday, Oct. 20, 2013, Kyli Abbinanti's soul departed from her frail and imperfect earthly body.
Praise God she now has finally has a perfect body with Him in Heaven! I was blessed the other night (before she passed on), with a beautiful vision of her, wearing a rainbow-striped dress, entering His Kingdom, running into his outstretched arms, and singing with the angels. I am comforted by that vision of her shiny black curls against the gleaming white robes of our Heavenly Father.
At the same time, I grieve, thinking of her family and friends, left behind here on earth, without the dear girl, sometimes called "Smiley Kyli" or " Kyli-Lou-Who", who gave them unconditional love, and taught them so many very important lessons.
Please pray for her parents, Jodi and Andy Abbinanti, and all her family and friends who join together in both sorrow and celebration.
Update, long overdue!
Written Oct 17, 2013 10:56pm by Jennifer Bolt--I was astonished when I saw how long it has been since I updated this site. I am on Facebook every day, so I often forget about Caringbridge. Those of you who are able to access Facebook, Joshua's Facebook group is called "Joshua Needs You!" We post A LOT there, including his writings, pictures, and even videos.
Please let me know if the link does not work.
I need to give a great big SHOUT OUT LOUD "THANK YOU!" to all of Joshua's volunteers! We really count on you! I only wish all of you student volunteers could volunteer in person forever, and I didn't need to keep recruiting replacements every semester! Praise God Joshua also has a small but very dedicated contingent of 'regular' (non- student) volunteers! You know who you are! God BLESS each of you, whether student , regular, or simply a long-distance prayer warrior! We love and thank you for all your support and encouragement you give to Joshua.Joshua is doing well, and doing more and more overhead ladder walking. We raised the ladder recently, so he is adjusting to that slowly but surely. He walked around his overhead ladder 'Walking Square' 29 times today, in fact! That is 928 feet !! of walking with his hands up on rungs, similar to playground 'monkey bars'. Check our photos section or Joshua's Facebook group to see this.
Joshua is also still enjoying (and excelling at ) his therapeutic horseback riding lessons, usually every Monday evening. This is a reward for him, after he completes his regular Intensive Treatment Program activities. But, it also helps him, as well. He rode in a Horse Show fir the first time in a year last Saturday, and of course he brought home two blue ribbons!
Our home schooling has taken on a radical change due to the addition of baby brother, Jacob. Joshua is helping Jacob to learn to read early, like he did. It is so much fun! Joshua thinks Jacob should spend more time reading, and I say a few seconds at a time is all he will enjoy right now. Boy, is Joshua going to be a hard taskmaster! He is such a wonderful intellectual role model for Jacob, though, while Jacob is a great physical role model for Joshua. Jacob can already walk perfectly, and even runs!
I also have been working hard. Just keeping up with these two boys, yes. But also on organizing and keeping Joshua's records better, and I have even gotten a start on the video for his re-visit history.But unfortunately, I did not manage to fund-raise anywhere near all of what we need for the revisit yet. Usually we would just pay the rest ourselves, but we have had some large, unexpected bills come up at a very bad time. We have not set the new appointment date, but we are hoping it will not be too long of a delay, just a few more months. Joshua and Jacob will hopefully both avoid the flu again this year, and we can go in early Spring.
Both my boys are actually very healthy. Though you wouldn't know it by the photo of Joshua above. He was showing his fat lip and telling me how much it hurt when he fell on his face on the kitchen floor Tuesday. (He was tall-kneeling and just lost his balance and didn't catch himself with his arms.) They both went to the pediatrician Wednesday morning, and although it was for Jacob's check up and both boys' shots, he seemed to think it was for his fat lip. He felt fine after a couple hours, though. No need for a special appointment for that. Pretty proud of the LIP, in fact. That's when I took the smiling fat lip shot, which is the very top picture right now..Jacob, Joshua's little brother, will be 11 months next week. Anyway, he's doing great. His iron levels are perfect, even though I don't give him the yucky vitamin they prescribed. He is 2 ft, 4.5 in. tall, and weighs 17 lbs, 7 oz. He has TWO teeth so far. Just the bottom two, both of which came in August. The doctor commented that his top gums are swollen, so we will probably see those 2 come in soon. He didn't react at all to the finger prick, but did NOT like the nurse squeezing it afterwards to get the 2 drops of blood. And of course she was not his friend anymore by the time she got to the vaccines. I usually only let them give him one (this time two) vaccines at a time. I just want to know what caused it if he does have a reaction. It seems irresponsible to me to put so many new (as in, never been exposed to before) chemicals into a person all at once.Joshua got two vaccines as well this doctor visit. He has a really hard time with the pain when it happens now. He dreads it, like any other child. And he cries out loud when it happens. While it is difficult to see my boy hurting, it is also SO GOOD that he can really feel it like other children now. The silver lining! Praise God! He will get his full yearly check up at our next visit in about 6 weeks, but he still wanted to be weighed and measured. I told him "next time." He also had to show them all his fat lip (which he got yesterday when he fell on his face in the kitchen), and his warts/corns, whatever they are, on his foot, knee, and knuckle. (They referred us to a dermatologist already. I haven't made that appointment yet.)I've rambled long enough. Joshua likes to type on the iPad. Here is a short sample of Joshua's writing now :
ABOUT SAINT FRANCIS
by Joshua Hasten Bolt
Saint Francis had a halo and birds around his head. He loved wolves, birds, space, rocks, everyone, everything. He built up the Church. He built a real church first. He attracted people's attention. The people are the Church. He built up the people with his love.
This is Jennifer again. I want to ask you to please pray for our friend, Kyli Abbinanti, and her parents, Jodi and Andy. She has been in the hospital for over 2 weeks, unable to breathe properly on her own. They did successfully take her off the respirator today, and she is breathing again, but the muscle weakness caused by her metabolic neurological condition makes breathing a very challenging prospect still. Please lift them all up in your prayers. http://www.caringbridge.org/visit/kyliabbinanti
Jennifer Lynn Bolt
Professional Mother to Joshua and Jacob
We're Back from Philadelphia!
Written Apr 29, 2013 11:49am by Jennifer BoltWe're Back From Philadelphia
by Jennifer Bolt, Professional Mother to Joshua (11 years) and Jacob (5 months)
We were in Philadelphia April 21-28 for Joshua's week-long appointment at The Institutes for the Achievement of Human Potential. As always, it was a long but very worthwhile and rewarding visit. The staff there are not only knowledgable, but also are so very kind, caring, and genuinely concerned with every aspect of our family's well-being. We feel blessed to be able to visit there. We always come away a little overwhelmed, but highly encouraged and motivated to keep working and keep hoping!
With the exception of a few moments, we all did very well. Jacob and Joshua are both good travelers. Jacob (5 months old) slept slightly more than half of our total driving time, and his fussy periods were definitely more bearable when his big brother was there to help soothe him. They both also slept well up until the last night at the home where we stayed. (THANK YOU, Ann and Ed Gunning!)
Joshua had good evaluations and even better program sessions despite having had such a chaotic period in regards to his home-based Intensive Treatment Program.
Joshua also was invited to demonstrate some of what he's learned while on the IAHP Intensive Treatment Program.
He performed admirably for a crowd of about 50 first-time IAHP parents during the "What to Do..." Lectures. He showed them what the dreaded w-sit position looks like, which the IAHP staff calls the "God-Awful" position. He showed them a good quad position (on hands and knees, properly). He also demonstrated how he creeps on his hands and knees, in a good cross-pattern. He showed them how he walks under an overhead ladder (which he had to do with mom and dad's assistance, because the one there is not as sturdy as ours at home). He also demonstrated reading and facilitated communication. His comment he typed afterwards was: "They were suitably impressed with me." No ego problems here!
For those who are interested in a little more detail regarding his evaluations and program changes, read on:
Joshua earned a HEALTH VICTORY - For the very first time! What this means is he had no illness for 12 months or more. Woo HOO! I was so absorbed with my Pregnancy, Lyme Disease, Jacob's birth, my surgery... that I did not even realize until I was writing Joshua's reports to IAHP that he had not been ill since last March!
THANK YOU to the following people, without whom Joshua would not have been so well for so long:
The "green jacket" staff at IAHP (for getting the correct nutrition, supplementation, and respiratory treatment)
my husband (daily help!)
my mother (weekly help!)
and all our volunteers (especially for NOT coming when you were sick!)
Age: 11 years, 7 months
Height: 132 cm/ 52 in/ 4 ft, 3 in
Weight: 25.56 kg/ 56.25 lbs
(He's nearly at his ideal weight, which would be 27.5 kg / 60.5 lbs. But it's good for him to be a little on the light side as he's still learning to walk.)
PHYSIOLOGICAL Program Changes:
Nutrition Changes: Due to such excellent health and none of his previous digestion issues, we will be attempting the following:
to slowly reduce and perhaps eliminate Joshua's use of supplementary digestive enzymes,
to add cilantro (or coriander) to his diet for detoxifying heavy metals from his system,
and to slowly try to re-introduce some previously problematic foods, starting with citrus fruits.
Respiratory Treatment Changes: Due to Joshua's continued difficulties with speech and sleep in addition to mobility issues,
we will increase his oxygen intake by switching to a different oxygen supplementation regimen,
improve the rate of his breathing by increasing his respiratory patterning time,
and improve his own control of his breathing by increasing his respiratory biofeedback time.
We did not expect that he would have made any physical progress, since his program had been negatively impacted by my illness, pregnancy, and surgery. But despite this, the evaluations revealed that the applied kinesiology we have been doing has paid off! Many of the "nodules" under his muscles have disappeared! These "nodules" prevent normal range of motion in many muscles and joints. So we can remove several of the everyday activities from his daily regimen, and add a few new ones. In other words, he's till moving forward, and getting closer to our dream of Independent WALKING!
PHYSICAL Program Changes:
NEW type of patterning (which we are calling "controlled crawling") which should help Joshua to learn to control each of his movements HIMSELF without moving other parts of his body
NEW applied kinesiology deep tactile stimulation techniques, focusing on ankles, gluts, and triceps
NEW opportunities for Joshua to take steps (independently of any support) and to cruise (walk holding onto inanimate objects)
BETTER indoor overhead ladder environment (more stable, so he will actually use it again)
MORE opportunities to walk under the overhead ladder, both inside and outside, with electronic biofeedback
ACTIVE log rolling only (he does all of it independently now)
Continued creeping and crawling for independent transportation.
As usual, Joshua impressed the IAHP staff with his intelligence. They know that with such an intense physical program there isn't much time for home schooling, but he still is doing great.
INTELLECTUAL Program Changes:
We look forward to posting more of Joshua's writing in the coming months.
Joshua is doing pretty well, but we do need to be more consistent with his Civil Code.
SOCIAL Program Changes:
We sort of messed up Joshua's Civil Code program this past year. We just basically need to go back to doing it right. He needs More attention to this, and Consistent rewards for meeting his responsibilities and being generally civil, (and consequences when he doesn't). This should remedy/prevent the few behavior issues (and possibly the returned incontinence, too).
Prayers would be appreciated.