We greatly appreciate the outpouring of support and well wishes we receive on a daily basis from people taking time out of their day to visit Jimmy’s site and to read his story.
I am going to try and post monthly updates on our site letting you know how Jimmy is doing, and what new accomplishments we have achieved. I hope this turns into quite a success story.
October 26, 2011 – What a horrible year for us. In addition to all the loss we experienced in the beginning of the year, Jimmy had a huge set back this summer. He was practicing his walking when he broke a bone in his foot. Unfortunately it has taken much longer than usual to heal. It is 3 months later and he is finally able to start walking with assistance again. This was very disappointing. We did have one piece of good news yesterday. Finally after 10 months of fighting with insurance, Jimmy’s Kid Walker has been approved. He has one of these at school that he uses, but to have one at home to continue with is going to be amazing. For all of you that follow Jimmy, I apologize I haven’t been here much. I hope that life will slow down a little to allow me to continue to do his updates.
April 10, 2011 – Jimmy hit three homeruns today at horse riding! It was a wonderful spring day and the kids just had a wonderful time. We went to the first Plainfield Disabilities Expo on Saturday. It is really great to have such community event right in our own backyard. We got a lot of information and hopefully we will be able to turn it into some great resources for us. Joey is still trying to convince us to get the elevator. :)
We were turned down for life insurance for Jimmy this week. We were rather disappointed but in speaking with some other families that appears to be the norm. A sad norm, but none the less a reality for us.:(
March 26th, 2011 – Well 2011 has not been a good year for the Bajner family. We have had a very rough start with the loss of Jimmy’s Great-Grandma Kitty and his Uncle Johnny. So that has kept me from being as good as I wanted to be with his updates. We are counting on Grandma Kitty and Uncle Johnny to be our angles up in heaven watching over Jim.
Jimmy is staring his horse riding again next week and we can’t wait to get back to that. He LOVES his horse Scooter.
Jimmy is doing a lot more talking. He loves to sing, his new song is his ABC’s but as always he still loves Old Mac Donald so when he sings his ABC’s when he actually singes “A B C D E-I-E-I-O” He is too cute
December 5, 2010 - With the end of 2010 fast approaching I realized that I had not updated Jimmy’s site in quite a while. So as I was finishing up my Christmas cards I decided to do his update as well.
2010 has been a good year for us as we continue to see improvements with Jimmy. Granted they are still slow, but they are consistent. Jimmy is becoming more and more vocal. He loves to sing “Old Mac Donald” and “The Wheels on the bus”. When he sings all he does is E-I-E-I-O, but for Jim that is HUGE. Also on the Wheels on the Bus he really doesn’t say any of the actual words, but you can tell with his tone what he is singing. He can also say Da-Da, Jo-Jo and Chris. He also says “Love You”. In addition to him verbalizing we have been working on getting him to do more sign language. So far he can do “more” which is very helpful for us when asking him if he wants more of something.
We got a new pair of braces this year and have been working on standing. Still having lots of balance issues so he can’t do it on his own, but he is definitely stronger.
We got some great news in regards to our insurance. Starting 2011, there will no longer be a lifetime maximum on his durable medical equipment. Our previous policy had a $10,000 lifetime max, and this basically equated to two pieces of equipment. There is so much stuff that he needs but we were holding onto the $10,000 for when he got bigger. Most of the items he needs are just too expensive for us to purchase out of our own pocket, so this change in our policy is huge for us. First items on our shopping list for 2011 are a new bed and a new feeding chair for him. Jimmy is still in a crib and high chair and has really outgrown both.
We switched Jimmy back to his regular seizure medicine and that seems to have stopped the seizures. He is on a pill form now and that is actually much easier for us to give to him. The pills are small and very easy for him to take.
We did our horse therapy at Ready Set Ride this year and loved going every Sunday. When we pulled into barn, Jimmy would immediately start flapping his arms with excitement. It’s nice to see him truly excited about something. Jimmy’s horse’s name is Scooter and he is HUGE! I still am very nervous each Sunday when they put him up on the horse. Scooter is definitely one of the larger horses at RSR.
We enjoyed going to the Chromosome 18 Conference in Oklahoma this summer. We always love seeing the other families. As usual this was a wonderful experience. Jimmy’s older brother actually participated in a Sibling panel this year. It was a great experience for him to be with other “typical” siblings and he got to share his feelings. We all learned from listening to Joey talk about his feelings. A definite eye opener.
We also enjoyed hosting the regional Chromosome 18 Conference at my parent’s home in Minooka. We had about 12 families and it was a perfect day.
We are hoping to be able to do our Fundraiser again this summer, so please check back for more details.
For those of you that voted for the Chromosome 18 Registry in the Chase contest, WE WON!!! It was announced that we won $25,000 while we were all together at the Chromosome 18 conference in Oklahoma. THANK YOU !!
Thank you again for checking in and may God bless each and every one of you.
July 2, 2010 - A few important things that have been going on in our lives recently. The Chromosome 18 Registry & Research society is in a contest on Facebook to win up to $250,000! We are frantically emailing all our friends and family and asking them to log onto www.chase.com and click on the link to the Community Giving. Once logged onto Facebook, click "Like" and then search for Chromosome 18 and select our organization and then click "Vote Now" It's that simple.
We are so impressed with the amount of support we have been receiving during this contest. We have over 1,100 votes and they continue to climb every day.
Also Jimmy was featured in the newsletter for Ready, Set, Ride, his horse theapy place. Please click on the link below and read all about our little superstar.
We are also gearing up to head to Tulsa, Oklahoma for the Annual Chromosome 18 Family Conference. We can' wait to see everyone.
June 3, 2010 - Well Jimmy is officially a 1st Grader! His Kindergarden year went very fast, but went much better than expected. We learned some new things and made some new friends. We are nervous because due to the budget issues within the Plainfield School system, Jimmy will have to move schools in the fall. This will be like starting all over again and this makes us very nervous.
We were made aware that in addition to Jimmy having Chromosome 18q deletion he has something called Pitt-Hopkins Syndrome. This basically is just a particular TCF4 gene that he is missing a copy of. This gene resides on the piece of the chromosome he is missing. This diagnosis doesn't do much for us as far as helping Jimmy, but it will open some doors as far as Growth Hormone is concerned.
We are starting making plans for the Family Gathering. Please take a look at that section of our website for more details
May 3, 2010 - Oh my it has been way too long. Life has definitely kept us busy. Jimmy has been up to a lot. He can say “Chris” now and it is clear as day. He is doing really well with his walking, but we still struggle with our balance. Looking into seeing a Orthopedic specialist to see if there is something more we should be doing.
Jimmy started back riding his horse Scooter in April. He LOVES riding on that big horse, for 40 minutes a week Jimmy is in control and he really enjoys that.
Spring time at the Bajner house is a tough one because Jimmy is allergic to just about every tree that is now in bloom. The doctor said that the only tree he is not allergic to is Palm Trees, now we are just trying to figure out how we can move everyone we love to someplace warm.
We are working with Jimmy on some basic “signs” for Sign Language. He can do “more” and we are working on more.
Jimmy will be going to a new school next year and we are a little nervous about that. The school district had to cut back and they are eliminating the Special Needs program at his school and combining with a few others. I am hoping and praying that Jim will still continue to get the attention he is used to.
We are in the planning stages of the 2010 Regional picnic. Check the “Regional Gathering” section of the site for updates.
We wanted to do a fundraiser this year, but there are still too many things going on in our personal lives. I am hoping that we will be able to do something in 2011. Keep checking back on more details on that as well.
December 15, 2009 – Jimmy gave us another early Christmas Surprise. This year he was standing at the kitchen sink playing with water! We were working on our walking and he walked over to the sink. Joey turned the sink on and Jimmy stood there and played with the water for over 10 minutes. He held onto the counter with one hand and onto played with the other. He LOVED it because he loves playing in the water. Check out the pictures on our site for some of the pictures of him playing.
November, 2009 – Well we started back on the Phenobarbital and thankfully the seizures have stopped (knock on wood J) We tried the new medicine, but Jimmy obviously didn’t like it, so we easily convinced the Dr. to allow us to go back. Why change what works?
October 5th, 2009 -
Just when we thought life was going pretty good, Jimmy decided to throw a wrench into things. On August 27th Jimmy had a major seizure that lasted more than 5 minutes. Up until this point he had been seizure free for 3 ½ years. This was the worst one he had ever had and we actually ended up calling 911. The neurologist is thinking that it was just due to his new medicine not being at the correct level, so we upped it and hoped that there would not be another one.
Unfortunately that was not the case, as Jimmy had another seizure on October 3rd. Needless to say we are a little frustrated because we thought that we had this under control. But as with everything with Jim we will get this figured out and hopefully will return to a seizure free life very soon.
Other than that he has been doing really well in his new school. Jimmy will be ending his horse therapy this weekend for the year. We have seen SO much improvement in him with this, I just wish we could do it year-round.
August 16th, 2009 – Jimmy was asked to be in a horse show today. They hand picked a few of their “Star Students” to show how wonderful horse therapy is and how much the kids love it. Jimmy did a great job and he got 1st place in the Most Relaxed Rider Category. Every child got first place in something and the kids faces lit up when they were awarded their ribbons. I have posted some pictures of Jimmy in his photo gallery.
July 28, 2009 – Boy has this been a busy summer. Jimmy has been doing horse therapy every Sunday and has been making great progress. Jimmy has actually been asked to be in a Horse Show since he is one of their star students. We had our regional family gathering on July 25th and that was great to see all our friends. Jimmy has been doing a lot of talking and really trying to get the walking down. Still having balance issues, but he is getting the hang of it.
May 24, 2009 - The search for a new bed for Jimmy is on. This morning when I went into get him up, he was sitting in his crib with his hands on the rails and his feet propped up and he was trying to pull himself up into a standing position! This is a HUGE milestone for him and we were super excited, but now I am very scared about where he can safely sleep. BTW… after a few attempts Jimmy did finally pull himself up into a standing position! I almost cried when I saw this. I think had I not been so scared that he was going to let go I would have broken down. It is SO encouraging to see the progress in Jimmy.
May 8, 2009 - We received a very nice package in the mail today. A very dear friend of our family Mary Schillinger asked her friends and family to make donations to the Chromosome 18 Registry instead of sending her gifts for her birthday. Obviously Mary is very special to alot of people, as she was able to raise $1,300 for the registry as HER birthday present. We will be making a donation in Jimmy's honor but were very touched at her generousity. Jimmy is a very lucky little boy to have such incredible people looking out for him. Thank you again Mary and Happy Birthday to you !
April 19, 2009 - Would you believe me if I told you that Jimmy says "Chris"? Well he does. Most kids say Momma before they would say Chris, but Jimmy definatelly can say Chris. Of course I couldn't be happier. We had our second riding session today and it went really well. They wanted to put Jim on a regular saddle instead of the higher theraputic one. Joe and I were a little worried about it at first but he did really well. Jimmy really loves riding the horse.
April 5, 2009 - Today we had our first Theraputic Horse session at Ready, Set Ride for this year. It was a little cold and windy, but Jimmy was happy to get back on the horse. We got to meet our new horse Sadie, and we were very excited becuase Jimmy's best friend Sean is taking riding classes with us. I have updated some pictures of Jimmy and Sean today and hopefully the weather will be warmer next week so that we don't have to be so bundled up. Happy Easter Everyone !
March 15, 2009 - Finally I have something new to report !!! We were visiting Jimmy's great-grandmother today and Jimmy was showing off what he can do for Grandma Kitty. Jimmy went to get himself into the sitting position, but his shoes got caught on the carpet so instead of sitting he was on his knees. This was nothing new, but then he fell forward and before I could catch him, he put his hands out and stopped himself! THAT IS NEW! All along Jimmy's reaction times to stopping a fall have been slow, but today was the first time that he was able to stop himself from hurting himself in time. Joe and I looked at each other and at the same time said... "Did you see that? That's something new!" Way to go Jimmy !!
March 7, 2009 - Well I appoligize for not giving as many updates as I had hoped. The last few months have been slow as far as progess and I didn't really have much to post. Jimmy is doing ALOT more talking lately. Joe and I think that he says "I'm a Good Guy", "I love you", and "Hi" He can blow kisses and he gives the best hugs. We have signed Jimmy up for his horse riding again this year. We are going to do all 3 sessions, so Jimmy will be basically be riding spring, summer and fall. We were excited with the results we saw after just the fall session last year so we can't wait to start back up.
I have been spending alot of time trying to find more families with Chromosome 18 abnormalities and lately everyone seems to be on FaceBook. So if you are a FaceBook Junkie like me search us out or Chromosome 18 and join our groups.
February 2, 2009 - We received the great news today that Jimmy's Growth Hormone medicine has been picked up by the insurance for another year. This medicine has made a big difference in Jimmy's strength over the last 9 months and I do not think he would be where he is today without it. As with anything, but best medicine for him is very expensive so without the insurance this wouldn't even be an option for us. Hearing that it was picked up again today was very good news
December 26, 2008 - Well I just wanted to take a few minutes to thank everyone that has been apart of our lives in 2008. We have received alot of help this year from friends and family, we have made alot of new friends this year, and we could not be more thankfull for all the love and support we have received thsi year. May God bless each and everyone one of you for taking the time out of your day to visit Jimmy's site. I hope everyone has a happy and healthy 2009.
December 20, 2008 - Joe and I were in Jimmy's room taking about putting up a ballet bar to help him with his standing when we thought to have him stand by his crib and see if he would hold on. Much to our surprise HE DID! He held onto his crib for around 5 minutes, he would let go with one hand, and he even danced a bit while holding on. We were very excited and happy to have an early Christmas present from Jimmy to share. I have posted a picture on Jimmy's site for you to see how well he is doing.
October 4, 2008 - Jimmy had his last theraputic horse riding session. They do not have classes in the winter because although the barn is covred it does nothave sides. I have posted before and after picture on Jimmy's picture page. Check out the difference! You can really see how much this helped him. We just need to keep him at this level and hope that April comes soon.
September 22, 2008 - Another big step for Jimmy, literally. Jimmy walked up a flight of steps! Granted I was supporting him, but the motion of lifting his leg to get it up to the next step was something Jimmy has never done. I was working on walking with him, and when we got to the steps in our family room, I was going to pick him up. I turned to say something to Joe, and when I turned back Jimmy had one foot up on the step. He continued this all the way up the stairs. We were so excited. He looked like such a big boy. Now we just have to get this whole balancing thing down and I am sure Jimmy will be walking some day soon.
August 27, 2008 – Jimmy did something new today! We were playing on the floor and he was sitting on Mommy's lap. He reached his arms up to grab ahold of a table, and held onto the table and pulled himself into a standing position. Not only was this a HUGE milestone because physically he could do it, it also was HUGE mentally as he knew he wanted to be standing and he knew what he needed to get there. Joe and I almost dropped to our knees when he did this and thankfully he repeated it at least ten additional times that night and we have been doing this ever since. The Growth Hormone is certianlly making a difference in his life.
August 10, 2008 – We started a new therapy today Therapeutic Horse Riding! We heard a lot of wonderful things about how beneficial this therapy was at the conference and were very excited to come home and see if we had a facility in our area. We were in luck and we have very high hopes that this will prove to be a good thing for Jimmy. His session is one hour long, once a week and he actually rides on a horse with people guiding the horse, and two people walking and holding onto Jimmy so he is completely safe. This new therapy is supposed to help him with his balance and his core muscle strength. Jimmy really enjoyed his time with his horse Lamb Chop.
July 26, 2008 – We hosted our first Chromosome 18 Family Picnic. We were able to get together with around 10 families and spent the day sharing war stories and giving each other support and advice. It was a very emotional day because we were able to be with people who knew exactly what it was like to have a Chromosome 18 abnormality. Jimmy made lots of new friends
Mid July – Jimmy has reached a new Milestone!!!! He has been sitting up on his own for a while now but you had to put him in a sitting position. He can now go from his tummy to sitting up on his own! We could not be happier with this achievement.
July 4 – 9th – We attended the Chromosome 18 Family Conference in San AntonioTexas! Man was it HOT! But we had a wonderful time, we met a lot of new families and some familiar faces from last year’s conference. We are really hoping to be able to attend this event every year. We receive a lot of information from other families on things they are doing that could help Jimmy.
June 28, 2008 – We had our first fundraiser for Chromosome 18 Research and Jimmy was the star of the show. If you had the opportunity to attend our event hopefully you were able meet him and see how happy a child he truly is. He was smiling at everyone and he definitely was flirting with all the ladies. It was a very long day and Jimmy tolerated it very well
May 5, 2008 – Jimmy started Growth Hormone treatment. It has been proven through the Chromosome 18 Research Society that children with Chromosome 18 abnormalities are growth hormone deficient. They also found that by putting these children on daily injections of growth hormone it helps increase their muscle tone, it helps them grow, and also helps increase brain functionality. We fought long and hard to get this treatment approved through the insurance as it is very expensive. But we found a wonderful doctor who saw the benefits and was willing to give Jimmy a chance. We can’t wait to see the improvement.