TodayAlrighty then… so very much has happened since this website was last updated. I’m just going to give old updates and new updates in the beginning until I get caught up. One of my friends asked why I didn’t have an update page and I said I really didn’t think I wanted one online. However, I know I have read many other SMA journals and found them helpful. I remember when it went up which was right around Jimmy’s 1st birthday. Jimmy’s first year of life was a whirlwind. After his diagnoses, I was not interested in talking to other SMA families. I was afraid that I would be told how to care for Jimmy and judged for personal decisions. Gez, was I wrong! Last January, I asked a question on a message board about the “special diet” that parents were giving their children. An SMA mom, Tracy, emailed me and told me to give her a call. She was so helpful, caring, loving and gave me the info on starting Jimmy on the diet. She also told me about www.smasupport.com. SMA Support is a non-profit organization to help SMA families with … support. Not only helping out with loaning medical equipment that we have problems getting approved through insurance, but there is also a wonderful email chat group where parents/caregivers/people living with SMA can communicate. Jimmy’s quality of life as well as his quantity of life is because of SMA Support. I thank God everyday for the SMA Support. It is a good feeling when you can ask questions, get advice, share experiences and just talk via the internet with others who truly understand. Laura also runs Our SMA Angels. Jimmy’s site is free of charge through it. Laura lost 2 children, Angels Devon and Sidney and also has a daughter, Kaylee (sma-free). She chose to help others who were in her situation when it would have been so much easier to just step away. I truly am blessed, not only with a wonderful son, family and friends but with caring SMA families.
TodayIt was a very good week! Monday was the yearly Early Intervention evaluation. Jimmy will continue to receive physical therapy once a week, technical communication once a month and a speech therapist will be coming in twice a month until he turns 3. Jimmy does not say words but he certainly communicates. There is no prediction on whether or not he will be able to talk. We can only continue to work with him. In the meantime, he vocalizes and uses his hand to say yes. Tuesday, we went to the Phila. Zoo. Jimmy was a little more interested than last year. When we got up to the animals and I told Jimmy to look, he would eye up the animal for a few seconds and then go back to playing with his mini disco ball. I think he was looking at the animals just to humor me but I’ll take it. Tuesday night we went to visit Nam-Mom & Pop-Pop Contento. Wednesday we visited Aunt Corinne. Thursday was Angel Mia Haq’s 1st Angel Day. Mia was born 4 days after Jimmy. I had the pleasure of meeting her last year at the FSMA conference 2 weeks before God called her back. I am so honored that I met this beautiful angel. Her mom, Stacey, is part of the chat group. She is a wonderful person. Mia was the first SMA child that I knew (from her mom sharing stories on the chat) that lost her battle with SMA. She will always hold a special place in my heart and the heart of many. Friday, we had an appointment at CHOP (Children’s Hosp. of Phila) in the neuromuscular clinic. We haven’t been there in almost 2 years. July 2nd, exactly 2 years prior is when we received the SMA type 1 diagnosis. Dr. Finkel was happy with Jimmy and said he couldn’t suggest anything because everything was already covered. When we came home, Jimmy went in his pool for the first time this summer. I didn’t put him in the water yet, he just was floating on his float and of course, I was in the water with him. This Tuesday, the PT is going to do water therapy with him in the pool, as long as the weather cooperates. I am hoping that we can see the fireworks on Sunday night. The display is very close by but Jimmy can’t look straight up in the air because of he has no gag or swallow, so I have to find a spot where he can see them from a distance.
TodayIt was a very good week! Monday was the yearly Early Intervention evaluation. Jimmy will continue to receive physical therapy once a week, technical communication once a month and a speech therapist will be coming in twice a month until he turns 3. Jimmy does not say words but he certainly communicates. There is no prediction on whether or not he will be able to talk. We can only continue to work with him. In the meantime, he vocalizes and uses his hand to say yes. Tuesday, we went to the Phila. Zoo. Jimmy was a little more interested than last year. When we got up to the animals and I told Jimmy to look, he would eye up the animal for a few seconds and then go back to playing with his mini disco ball. I think he was looking at the animals just to humor me but I’ll take it. Tuesday night we went to visit Nam-Mom & Pop-Pop Contento. Wednesday we visited Aunt Corinne. Thursday was Angel Mia Haq’s 1st Angel Day. Mia was born 4 days after Jimmy. I had the pleasure of meeting her last year at the FSMA conference 2 weeks before God called her back. I am so honored that I met this beautiful angel. Her mom, Stacey, is part of the chat group. She is a wonderful person. Mia was the first SMA child that I knew (from her mom sharing stories on the chat) that lost her battle with SMA. She will always hold a special place in my heart and the heart of many. Friday, we had an appointment at CHOP (Children’s Hosp. of Phila) in the neuromuscular clinic. We haven’t been there in almost 2 years. July 2nd, exactly 2 years prior is when we received the SMA type 1 diagnosis. Dr. Finkel was happy with Jimmy and said he couldn’t suggest anything because everything was already covered. When we came home, Jimmy went in his pool for the first time this summer. I didn’t put him in the water yet, he just was floating on his float and of course, I was in the water with him. This Tuesday, the PT is going to do water therapy with him in the pool, as long as the weather cooperates. I am hoping that we can see the fireworks on Sunday night. The display is very close by but Jimmy can’t look straight up in the air because of he has no gag or swallow, so I have to find a spot where he can see them from a distance.
TodayWe did make it to see the fireworks on July 4th! Jimmy liked them which I figured he would because he loves lights, disco balls, glowy things, etc. We've been to the zoo twice in July. We are members and it's a nice day out. We've also been to a couple of the free kiddy concerns that they have in the next development. Jimmy's Aunt Corinne gave us free tickets to the Aquarium so that is going to be a trip we take very soon. I also want to bring Jimmy to Sesame Place. They have a discounted entrance fee if you go after 4pm when the park is opened until 8pm. That would be perfect because we won't be doing any of the water activities. The approximate total is in for the FSMA Cure SMA walk and it brought in $47,000. I'm shocked! I never thought it would be that much money. I'm not going to be working with FSMA any longer. I will continue to support their functions when I can. I am in the process of starting up a chapter of FightSMA. It will be called Jimmy's Buddies FightSMA. I will be targeting the South Jersey/Philadelphia area. The 2nd annual beef-n-beer is Oct 2nd and I want to do a walk in Cherry Hill next year. There is a really cool park area that is a little less (alright alot less) congested than Kelly Drive. There is a pavillion, playground, sports area. I think it would be a great family day event. I am very much looking forward to getting things underway. We went to an FSMA walk in NJ on the 17th and on the 18th we went to Uncle Chris & Aunt Jen's to celebrate Uncle Denny, Jake, Jen, Pop-Pop and Mom-mom's birthdays. It was two trips without a nurse. My parents were with us. It's definitely getting easier to travel with Jimmy. He loves the car and really likes getting out. Taleah English, SMA type 1, earned her wings last week. 2 days shy of her 4th birthday. My heart is breaking for her family. Jimmy has only been in the pool once this summer. Either too cold, too hot, too rainy and after the big rain 2 weeks ago, it collapsed so I need to clean it out and put it back up. I put Jimmy in the tub tonight. I usually have him on a float but this time I used a bathchair. I filled the tub pretty high and he was able to move his legs. It is absolutely amazing to see my son move his legs. Not a whole lot but he moves them. His PT agreed to do water therapy so I really am hoping to get the pool in order so we can do it within the next couple of weeks. I will feel so much better in the pool when I can be there with him. His head needs to be to the side so he doesn't choke on secretions so it's kind of tricky but it's well worth it. Tonight he was trying to look down at his legs. I think he was surprised at what he was able to do. I'm excited :)
TodayOn August 7th, Jimmy and I both became sick. I tried to manage the sickness at home but by 5am, I needed to call 911 because Jimmy was not maining good stats even with the assistance of oxygen. Normally, he was not on oxygen. I used it in case of an emergency. We were beyond homecare. After 6 days, long, draining, tiring days for the boo boo bear, he was finally intubated (breathing tube). As soon as he was intubated (which was the first time he even needed it), he looked so much better. He was able to get the help he needed. Before extubation back to bipap was attempted, I spoke to other families and medical personnel about the pros and cons of a tracheostomy. Jimmy was requiring 18 to 20 hours of bipap per day when he was healthy. In Jimmy's situation, the pros of a trach far outweighed the cons. We decided that having a trach placed. It has been wonderful. No regrets whatsoever! He did great with the procedure and adjusted quickly. So his bipap superhero mask is officially retired and he now has a breathing necklace. We were in the hospital from 8/8 to 9/21. 6 weeks and 2 days - but who's counting :).
TodayI forgot to mentioned that we are very grateful to the WONDERFUL staff at Children's Hospital of Philadelphia. I cannot say enough about the fabulous care they gave to Jimmy! The extensive (and I mean extensive) training received on trach/vent care was so thorough! Thanks to the great RTs, nurses, doctors, social workers, front desk reps, environmental dept., just everyone! We love you!
TodaySince we have been home, things have been going well. All the initial adjustments in Jimmy's care are done. Jimmy is now able to tolerate being placed in an upright position. He can do at least an hour at a time. This is big time for us! CHOP ordered a different wheelchair system for Jimmy to help with his curved spine. It will also have a headpiece that will keep his head in place while upright. We should have it in a couple of months. We've been getting out and about while we can with the nice weather. Jimmy was a Philadelphia police officer for Halloween. The day before Halloween, we went to Sesame Place. Variety Club of Philly reserved the park for the differently-abled children and their families. He was totally into the characters! We were front and center for the Elmo's World show. The only time Jimmy complained was when we sat down to eat lunch. He was annoyed and wanted to keep going. On Nov. 1st, we had a pulm appt at CHOP and they are happy with Jimmy. He also had a blood drawl done for a research project on SMA that the NIH is conducting. I am going to try to keep on top of updating this site more often.
TodayWe are gearing up for Christmas. Firefighter Santa and his helpers from Cherry Hill Fire Dept. came to see Jimmy last night. Of course, I had to be dorky and have a song playing when he came in. But Santa didn't seem to mind and he started dancing. Jimmy smiled at him a couple of times so I was happy. Tomorrow Santa Dom makes his annual visit. Christmas can't come until that happens :). Jimmy's new wheelchair was approved. They placed the order today. I am beyond excited. I am so looking forward to having him better supported and having his neck in a good position when he is sitting up! My boy is going to be sitting up which will give him a whole different perspective. Life is good! Today I had a meeting with the preschool team. Jimmy loses Early Intervention in March when he turns 3 and is then covered under the school district. I told them I was very interested in videoconferencing. Another SMA child, is currently doing it. Mom brought him in to meet the class at the beginning of the school year and now they are linked live with the classroom. This way, the children know who Jimmy is and Jimmy will get to know all of them. She will also be taking him on school trips with the class. They have a little circle with her son's name in it during "circle time" so the kids know where he can see and he feels included. Our school district isn't currently doing this with anyone but they are not opposed to it and seemed very positive about it. I think it would be awesome! Jimmy is actually the first child in our district to have home services for preschool which I was very surprised about. They said most people send their children to special programs or choose to do it themselves. Personally, I think we need a little more structure. SMA does not affect children mentally, so I want to keep him as stimulated as possible. Jimmy loves kids so I think this would be perfect. I'm already planning what kind of cupcakes I will be sending in for his birthday. (kidding? not) I would love for Jimmy to be able to actually attend school for Kindergarden but we'll cross that bridge when we get to it. Testing his immune system is not something I am looking forward to but maybe he would do fine, or maybe I could send him during the nice months and do it from home during the cold season. I have quite a few pictures to add to Jimmy's site, but I am going to wait until after Christmas. Hope everyone has a wonderful Christmas and a Happy New Year too!
TodayWe are gearing up for Christmas. Firefighter Santa and his helpers from Cherry Hill Fire Dept. came to see Jimmy last night. Of course, I had to be dorky and have a song playing when he came in. But Santa didn't seem to mind and he started dancing. Jimmy smiled at him a couple of times so I was happy. Tomorrow Santa Dom makes his annual visit. Christmas can't come until that happens :). Jimmy's new wheelchair was approved. They placed the order today. I am beyond excited. I am so looking forward to having him better supported and having his neck in a good position when he is sitting up! My boy is going to be sitting up which will give him a whole different perspective. Life is good! Today I had a meeting with the preschool team. Jimmy loses Early Intervention in March when he turns 3 and is then covered under the school district. I told them I was very interested in videoconferencing. Another SMA child, is currently doing it. Mom brought him in to meet the class at the beginning of the school year and now they are linked live with the classroom. This way, the children know who Jimmy is and Jimmy will get to know all of them. She will also be taking him on school trips with the class. They have a little circle with her son's name in it during "circle time" so the kids know where he can see and he feels included. Our school district isn't currently doing this with anyone but they are not opposed to it and seemed very positive about it. I think it would be awesome! Jimmy is actually the first child in our district to have home services for preschool which I was very surprised about. They said most people send their children to special programs or choose to do it themselves. Personally, I think we need a little more structure. SMA does not affect children mentally, so I want to keep him as stimulated as possible. Jimmy loves kids so I think this would be perfect. I'm already planning what kind of cupcakes I will be sending in for his birthday. (kidding? not) I would love for Jimmy to be able to actually attend school for Kindergarden but we'll cross that bridge when we get to it. Testing his immune system is not something I am looking forward to but maybe he would do fine, or maybe I could send him during the nice months and do it from home during the cold season. I have quite a few pictures to add to Jimmy's site, but I am going to wait until after Christmas. Hope everyone has a wonderful Christmas and a Happy New Year too!
TodayI cannot believe that Jimmy will be 3 years old tomorrow. I am overcome with emotion. He is doing marvelous! I found out on Tuesday that the Distant Learning is a go. They were waiting for the funding and recieved it while I was on the conference call with them. We will be starting sometime in April. Jimmy's new teacher already told the children about Jimmy. She is preparing a booklet with pictures of the kids so Jimmy can get familiar with them. We will be meeting the kids in a nearby park to introduce Jimmy in person. The first day we go live, the teacher will come to our house and they will have a sub in the class, so that the kids understand that it's live. The teacher said there is already one little boy that keeps asking about Jimmy. I told Jimmy that he already has a best friend! Not only will we be able to see and hear the class but they will be able to see and hear us. The teacher will provide activities, etc. that will be used in class ahead of time so that we can participate at home. If the kids break up into groups, they can put a microphone at a table and click a remote and we will be able to join that table. HOW AMAZING IS THAT!! Jimmy loves kids and I am so very happy and so very grateful to Cherry Hill School District in making this wonderful dream a reality! I know many people worked their butts off for this new technology. This week was our last week with our Early Intervention Program Assistive Technology, Physical Therapist and Speech Therapist. These 3 people have been a wonderful part of our lives and it was so sad to say goodbye. A great big thank you hug goes out to Madge, Dawn & Becky! As well as our Social worker and case manager, Alisa & Laurie. We will now have a whole different group through the school district. Everyone has been so nice and helpful and I'm sure it will be great. While sitting up in his chair today, Jimmy fingerpainted a shamrock for me. He was into it. I was so happy because usually he looks at me like "enough mom" anytime I try to do anything crafty or drawing. He did a great job! It definitely is refrigerator-worthy!! Tomorrow we will have our usual Jimmy's Birthday Open House so whoever wants to come over can come anytime that is convenient for them. I can't believe my baby is going to be three years old tomorrow.... waaahhhhh!!
TodayJimmy's birthday was a great day! He throughly enjoyed being the center of attention. The next day we took him for a short walk and a ride in the car. I wanted to make sure that Jimmy's new chair would work out. It doesn't recline as far back as his old one. He did great! I can't wait until the weather breaks. Jimmy loves being out and about. The modifications on the house have begun. The Catostrophic Fund for Children's NJ program has been a Godsend. The garage is being converted into a bedroom. French doors will be installed so we can get out of the house easier and a patio out back with a new walkway and additional driveway are being done. There is also a program in our area to have a ramp installed. That way I can get Jimmy up to the second level of the house without having to carry up the wheelchair and all the equipment. Life will be so much easier when we are on ground level permanently. Jimmy's new assistive tech person, pt and teacher came to the house this week. They are all great! His teacher brought over pictures of some of his classmates. I am so excited! Jimmy's new room will be a police theme. The one end will be his "school" area. My brother, Dennis, is doing the garage. I am so thankful! Hopefully, within a couple of months Jimmy's new apartment will be done. Then we will begin our social visit calendar! Everything is coming together - yeah!!
TodayWe have officially moved downstairs. My brother did a wonderful job on the garage conversion and we moved down to the family room/garage now the play room/bedroom last week. IT IS WONDERFUL!! Getting Jimmy out and about is so so very much easier! Jimmy started preschool live via the internet on Monday. His teacher came to the house for the first day so that the children could understand that it was live and not a show. I had the pleasure of meeting Jimmy's classmates, aides and a couple of the parents the week before. I was a nervous wreck about it but the kids were wonderful. Jimmy's teacher asked me to come in and tell the kids about Jimmy. I brought in his trached teddy bear (thanks Reillys), a switch toy, etc. and explained Jimmy's situation. I was waiting for some hard questions but the only question was "Does Jimmy likes trains." I could handle that question without breaking into a sweat ;). The first day of school was overwhelming for Jimmy. After 5 minutes, he had enough. He was crying. He would only stop for a second when one of the kids would say hi to him (through the tv) and he would raise his fingers to say hi back. As the week progressed, so did Jimmy's tolerance. By Thursday, he was tolerating 1 hour. It's the coolest thing and I am so very grateful that Cherry Hill School District, has done so very much to make this happen! I have to post some pictures of Jimmy on his first day of school (he got to hold the flag during the pledge of allegiance) and also of his new apartment!
TodayI can't believe it's been so long since I wrote an update. Well, here goes... Jimmy is doing great! We had a wonderful summer. We went to the Zoo, Sesame Place, walks, malls, block parties, etc. Jimmy went into the summer school program a couple of times to be with the kids in person. We had a big outing to NY to visit our SMA friends, MJ & Brenda and The Reilly family. It was great to finally get together! Jimmy has been doing great with school via cable daily. We have been blessed with a wonderful team who come to the house too. Jimmy gets Speech Therapy twice a week, Occupational Therapy once a week, one-on-one Teacher twice a week and Physical Therapy once a week. He is a busy guy! I cannot say enough about Jimmy's preschool teacher, aides, principal, Home Teacher, Speech Therapists, Occupational Therapist & Physical Therapist. They are not there just to do a job. They actually care about Jimmy and go way above and beyond the call of duty for him. We have the same nurses as last year and we LOVE them like family. They are the best of the best and we are grateful for their loving & caring ways. We are lovin' life being downstairs in the house. It's so easy. Camden County has a program where they install Ramps free of charge! It's a program for convicts to learn a trade. I was cracking up because they came Friday of Memorial Day and had to come back the following Wednesday to finish up. They left the trailer on our lawn that read "Prisons on board". I wasn't sure what the neighbors where thinking : ). They did a terrific job and now we can get Jimmy up to the middle floor (split level) via the ramp. We had a great Christmas! Last week, Jimmy went to Souderton PA for his first live concert to see the Veggie Tales Live. It was a great show. I keep asking him if he will be 18 and still a VT groupie. I think he might. On Friday, I ran cupcakes over to school and when I got back, all the kids sung Happy Birthday to Jimmy. They made him a birthday crown to wear. It was SO cool! As corny as it sounds, this was a big highlight for me. I remember thinking last year how cool it would be to send i n cupcakes for Jimmy's birthday just like it would be if he were a healthy child. Today we had our usual open house to celebrate Jimmy's 4th Birthday. Jimmy's dad's extended family was the first shift to come. It was good to see everyone! Then my family and friends came over. Jimmy was loving life by being the center of attention of all those people. He was hamming it up by singing (making noises) for everyone. I am so proud of him!! I can't even put into words how happy he makes me. I am so thankful to God that on the 4th anniversary of the happiest day of my life, I still have the present He gave to me. I still pray for a cure for SMA but know that Jimmy will be happy and have a good life regardless. Have I mentioned how happy Jimmy & I are!! I am starting LPN school in 2 weeks. I am a nervous wreck. The program is for 8 weeks straight, off for the summer and starts up again in Sept and is complete in June. My goal is to be able to work 3 days a week in pediatric home care in order to make ends meet. I hope I do well and time goes by fast. I can't image going from barely leaving Jimmy's side to leaving everyday all day for school. But, there is a time for everything and now is the time. Jimmy is doing well and we have a wonderful nursing staff that knows Jimmy and my parents will be here. I guess that's it for now. I really need to update more often.
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