02/27/15

We were all packed up and driving out of town for lessons in Asheville this morning, when I got an email saying there was 6 inches of snow and too cold there to melt it, so lessons were cancelled. Back home we went to unpack...
JJ got a new chair today that we're loaning from an adaptive equipment place in Lexington. It's called a bolster chair, and it has him sitting across a bolster like you'd sit in a saddle, which is the position the surgeon recommended that would be most helpful to help his left hip move back into its socket. He tried it out after his nap today and seemed to be pretty comfortable and able to play with his toys and iPad. If he does well with it, we'll be looking for one of our own, as I can't afford to rent this one for $60 a month for very long .

02-25-15

Jaymin continues to do well! He is not bothered by his casts or braces. The only thing he doesn't like is that he doesn't get to take a bath every night. We have one more week in casts, then he will be thrilled to get a bath, I'm sure!

We are going to Asheville, NC tomorrow for 3 days of lessons again. He did great with our lessons in Louisville! Started exploring a couple of movements that I've never seen him do before, like using his own arm or elbow to push himself up after bending down.

We are also getting a bolster chair on loan for a month or more to try out and see if it works for him. His surgeon highly recommended we find one, as he needs to be placed in a position like he's sitting in a saddle whenever possible to help his left hip especially go back into it's socket, and so avoid a bigger hip surgery in a few years. Hopefully will be recieving the chair in the next few days so we can see how it works for him.

Our current total raised toward his surgery costs is $5,116.00. Many thank you's to everyone for helping us out!!

02/11/2015

Jaymin is doing very well! He only needed pain med/ muscle relaxer for the first 2 days. We traveled back home on Sunday and he slept the entire flight!

He does not seem to be bothered by his casts at all, but not so fond of the knee braces at night. It's going to take a little while till he gets used to sleeping without being curled in a little ball. He is to wear the casts for 4 weeks and the knee immobilizers while sleeping for 2 months to prevent the tightness/contracture from returning to his knees due to sleeping in a curled position.

He has some smaller bruises behind his knees and a more extensive bruise in the inside of his hip/groin area, where the procedure was done. His left hip on x-ray measured 55% out of socket and his spasticity was more pronounced on that side, so the surgeon did more work there. The right hip looked much better, surgeon did not give me a percentage on that one.

The decrease in his spasticity is remarkable! I am able to hold him on my hip with knees on each side of me comfortably for the first time ever!

We will be going to Louisville for 4 days of ABM lessons next week and I'm scheduling a few more days of lessons at the end of the month in Asheville. He needs as many lessons as I can get him to now after the surgery, to capitalize on the improvements and learn how to use his legs and body together in a new and improved way.

Many, many thanks to everyone who has shared his story, donated, and prayed for him! $4,916 has been raised to pay toward his surgery bill.

02/06/2015

Jay's surgery went well this morning! He seems to be feeling ok most of the time, except when I need to change a diaper. He has eaten and is playing with his toys pretty much as usual, just fussing when he wants to move his legs and can't easily because of the heaviness of the casts and knee immobilizers.
Dr. gave him a medicine for pain and a med to keep his muscles more relaxed for the first 3 days. But he is able to return to his normal activities immediately. He is to wear the knee immobilizers for the first 24 hours, and then only at night for 2 months, to prevent him from curling up to sleep, which would not be helpful for his knees.

02/05/15

Met with Jay's surgeon this morning. As I expected, he says his knees and ankles need to be done as well. So that brings the cost up to approximately $14,200 plus travel costs. I have $4,005 so far. ( This fundraiser began last summer, and the first $2,000 was used for a trip to California for lessons last June.)
Also, crossing my fingers today, that when the anesthesiologist listens to him tomorrow, he'll be totally clear. Because he had a cold last week, I'm worried about that. I really don't need it postponed now that we've flown here already.

We are supposed to be at the surgical center at 6:15 in the morning. Surgery is planned for 7:30, I believe. He will have casts on his lower legs and part of feet for a month because of the procedure on his ankles.

01/29/2015

We are down to one week left before Jay's surgery! Jay has been doing good, but today yesterday and today has had a runny nose and little cough. We are hoping this will be very short-lived and disappear before next week!

We will be leaving on Feb 4, seeing the surgeon on Feb 5, and having the surgery on Feb 6. Planning to return home on Feb 8.

We have had multiple donations over the last few weeks and want to say a big Thank You!! to everyone who has helped us out! Right now we have $3,755 of the expected cost of $10,100.

I will try to put updates on here as well as Jay's facebook page at www.facebook/pages/Jaymins-Journey/628111380638106

12/07/2014

Jaymin is doing well. We have been busy as always! Since our last update, we have been to Chicago for 3.5 days of lessons, and this past week we were again in Asheville, NC for 3 days.

Jaymin has learned to put his toys back into his favorite bowl or other container recently! Up until now, he has only taken things out and when finished he throws them. He has also taken on the job of turning his bedroom light on and off for me, which includes him actually putting weight through his legs and feet to stand on the bed, leaning against me while he finds the string to pull by himself! He is so proud of himself doing that! And it is the first that he has ever shown interest in putting his weight through his own legs!

Speech and communication continue to be an issue that we deal with everyday. He is getting where he wants to say things and just doesn't have the ability. It is so frustrating for him and for me! I am thinking about a communication device, but haven't really started researching what might work for him yet.

He is continuing to do well and enjoy preschool, and has successfully increased his time there to 2 hours. His little classmates love him and are always so happy to see him!

We are continuing to plan for his scheduled surgery in February, but the funding I was hoping to receive to help me cover the cost of the surgery itself has just been denied. And since his medicaid will not pay out-of-state, I am left to pay for it myself.

Our t-shirt fundraiser raised $395 and our yard sale raised about $410, which we are thrilled about! If there are more people who would be interested in buying a t-shirt, let me know. If we have enough interest, I will relaunch it, but have to sell a minimum number of shirts.

Thank you to everyone for donating and sharing our need!

09/25/2014

Jaymin is doing great! He is loving going to preschool, but is usually quite happy to see me when I get there to pick him up.

He is continuing to use his left hand alternately with his right hand when signing "I love" and shaking hands and when 'honking' Mama's nose! He also will lift both hands to me when I want to pick him up now!

He has added a sound of smacking his lips, which is the closest he can come to the 'p' sound for iPad. He uses this sound very often!

We were in Cincinnati, Ohio for ABM lessons the end of August which he really did well with, and will be going to Asheville, NC next week for another 4 day set of lessons.

This past week I have scheduled Jaymin for a surgery that will lessen the spasticity in his hips, and possibly be done in ankles or knees too, pending the surgeon's examination. This is a surgery only done by 2 Doctors in the USA, so we will have to travel to Texas and it will not be covered by his insurance, as they do not accept out-of-state Medicaid. The surgery is called SPML (or Selective Percutaneous Myofascial Lengthening). It is a very minimally invasive, outpatient procedure, with a very short recovery period. I have been researching this for a long time, and firmly believe this is a much better option for Jaymin, than traditional surgeries, which often involve cutting muscles, tendons, and/or bones, and have poor functional results. We are scheduled for surgery on February 6, 2015 and the projected cost of surgery will be $10,100.00.

We are planning a fundraiser yard sale/bake sale and working to design a t-shirt to sell as a fundraiser as well. We will be accepting donations to sell at the yard sale if anyone local is interested in donating items.

As always, thank you for supporting Jaymin's therapy costs! And please share with your friends!

07/24/2014

Jaymin had a great set of lessons in California last week! He thoroughly enjoyed them, breaking into a grin many times during a lesson. The day after his lessons ended he started signing "I love you" with his left hand, instead of with his right hand, as usual! (He usually holds his left hand tightly fisted.) He also is often lifting his left hand to me when I hold my hands out to pick him up, or offer to shake his hand (one of his favorite activities). We are so thrilled! His hips are also noticeably less tight, allowing him to move more freely and be more comfortable while being held.

Since my last update, I have learned that our regular practitioner in Nashville will not be giving lessons to children any more. So, that leaves us having to travel further and adds hotel costs each month during his 3-4 days of lessons. We had been staying with friends in Nashville, but we don't know anyone in Louisville or Asheville, NC, which will be where we will be going from now on. We are sad to leave our practitioner who we love, but excited at what new learning he may achieve with other practitioners.

I have made this an ongoing fundraiser now, with the goal of raising enough money to cover travel and lodging costs for his monthly trips. We are also planning to go to California for a second trip during my training in June 2015, if funds allow.

Thank you to everyone who has donated and shared! Please continue to share!

07/06/2014

Here's a quick update before we're off to California later this week- Yay!!

Jay is doing awesome! We have found a new activity that he LOVES! Swimming!

He was happy the entire 2 hours we were at the pool and swam around the majority of that time. Kicking his feet, he was able to move himself around for the first time in his life. He was even trying to turn himself in a different direction by turning his head. We are planning to be regular visitors to the pool this summer!

He has added another "word" to his vocabulary in the last month. He now can tell me he wants music by saying "ck" when I ask him what he wants. Also I have been teaching him to sign "I love ma-ma", and he now spontaneously signs "I love", and sometimes adds "oo-wa" to the end.

Another sign that his vision is improving- He is starting to grab things off the shelf when we are out shopping, so now I have to keep an eye on how close his chair is to breakable items.

We will be actively fundraising till the end of this year for now. We have enough for this round of lessons plus travel and hotel costs, thanks to so many generous people! I am hoping to be able to travel at least once more this year for lessons with a practitioner experienced with kids. Our regular practitioner in Nashville is great and we love her, but she does not see kids regularly and has been urging me to take him to see practitioners with more kid-experience. I agree that it would be very helpful for him, but funds for travel and hotel costs are always an issue. I will post an update on this as soon as I have finished my research on where to go and who he should see.

Thank you! Thank you! to everyone who has donated and shared! I will post an update during or after his lessons next week.

05/18/2014

Jaymin is doing well! We celebrated his 3rd birthday a couple weeks ago with Superman birthday cake and ice cream. He ate all his ice cream for the first time ever! But threw his piece of cake on the floor. Cake texture is still not his favorite.

With his third birthday came the end of 1st Step therapies and the beginning of preschool. He is managing an hour of school a day pretty well so far. He gets a grin and a twinkle in his eye when I ask him if he's ready to go to school, and quickly says "ah"! But he is usually very ready to see his "Oo-wa" when I come to pick him up again.

He likes to "help" the twins sound out words when they're reading! He hears them, then adds his 'gh', 'ah', and 'ck' sounds, and whatever else he can think of right then.

I have just finished making airline and hotel reservations for our stay in California and his 4 days of lessons have been scheduled. Thanks to all of you for continuing to make this trip happen for him! 

02/17/2014

Jaymin has been doing great! He had a rough spot over the holidays, because we didn't have time to work in his usual 3 days of lessons in December. But he is doing really well again now. He has been practicing a new speech sound the last 2 weeks. He says "gh" way down in his throat and then laughs, he thinks it's so funny!

He is also getting more organized in his lower back, showing that he has better control of his trunk when in a sitting position. He used to just slump over and needed maximum support to sit. Now he will purposely lean down to his feet, then bring himself back upright, popping my shoulder with his head. (Which he also thinks is funny!) In his lessons, he is learning to look in the direction that he is wanting to move, which is a huge thing for him to be able to do. And makes it so much easier to move!

I have just made appointments for him to receive lessons in California in July while I am in training. We are getting very close to having enough $$$ to cover flights, lodging, food, etc. Thank you to everyone who has donated and shared! We appreciate it greatly!!

11/07/2013

I am thrilled to say that Jaymin has learned to say ma-ma this past week! Although his version sounds like "wa-wa", it is plain to see that he knows what he's saying and he uses it frequently. This is his 2nd word, following his "ah" to answer questions. And he will not say "ah" when I ask him if he is done in the bath! Smart boy!

He is really into turning pages of his books now. He has always loved to be read to, and used to feel the pages, etc., but now its all about turning the pages. If I use my fingers to feel his little textured books, he'll push my hand away so he can turn the page! But if I'm reading to the twins too, he is learning to wait for me to finish reading the page before he grabs it. It better not have more than a couple sentences on each page, though!

Thank you to all who have been sharing and especially to those who have donated to Jay's fund! We appreciate it so much!! Please continue to share.