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December 24, 2003. Jennifer wishes all of her friends and family a Merry Christmas.
December 22, 2003. One year ago today, was the day our good friends Laurie and Mark lost their son Marshall to SMA. It seems impossible that a whole year has already passed. Though at times it feels like we’ve known the Potters for a lifetime, it has only been within the last year and a couple of months that we have met these amazing people. Sue, Michelle, Jennifer and I extended our thoughts and prayers even more so today than other days to the entire Potter family on this anniversary day of Marshall’s passing. Should anyone want to visit Marshall’s website, they can do so by going to: www.marshallpotter.com or send the Potters a personal email at info@marshallpotter.com Mark, Laurie and Marshall, we are thinking about all of you today, even more so than usual.
December 16, 2003. My apologies if I have worried anyone with not posting lately. Work and life in general have been crazy. Some news from the home front for all you Jen fans, first the power wheelchair has received insurance approval from our secondary provider. That along with primary’s approval several months ago now means that Jen will be receiving her new power wheelchair. Fortunately we have avoided the arbitration process. After several phone calls with Children’s Hospital (OT/PT) and the manufacturer’s representative it currently looks like January 20th will be the day that Jennifer gets her new power wheelchair. Next, according to Mom, what we had previously thought was going to be covered 100% by primary insurance due to a re-evaluation of Jennifer, we have learned that Jennifer’s aqua therapy is now no longer covered by primary insurance once again. After the follow up evaluation, their belief is that there is no improvement in Jennifer’s situation. It’s not about all about improving the condition, what about maintaining??? They have now discontinued paying for aqua therapy sessions and we are not sure if secondary insurance will now cover the aqua therapy, but we are now receiving invoices for services and needless to say the cost is unbelievable to say the least. Oh well, add another bill to the pile! We are not sure how this will all pan out but time will certainly tell. Jennifer’s cough machine still has not arrived. I have made numerous phone calls to the DME supplier and it’s one excuse after another. Of course, they always need one more piece of information. The first time I called, two days after our visit to the pulmonary clinic at the hospital, I was informed that they hadn’t received the prescription from the doc at Children’s Hospital in order to place the order. This brought on several more phone calls back and forth with the hospital and the DME supplier only to learn that the hospital did follow through with their part (I’m not surprised). After which we waited a while, until further rounds of phone calls due to non-receipt of the cough machine brought up issues like, “who is your insurance provider?” and “what is your plan number?”. Never a dull moment with these people. It’s not like you don’t have enough just dealing with the disease. Oh well, supposedly we should be receiving the cough machine shortly. It’s a good thing Jennifer has remained cold free! Now there’s some really good news! After all the emails we received for prayers for sick kids (not to mention all the new diagnoses) who are really struggling right now, Jen has been able to avoid the cold and flu season to date. Jennifer has started hippo therapy (AKA horse back riding) at Iron Horse Farms not too far from the house, and enjoys it somewhat. Last week she was measured and fitted at the hospital for a soft trunk brace. It is due to arrive this week and calls for another trip to Children’s Hospital in Boston (or as I like to refer to it as, … our second home) I think either Thursday or Friday. I have finally decided not to undertake any planning in connection with next year’s walk and roll-a-thon. I’ve been struggling with this one for a while now but have finally resolved myself to the fact that I cannot do it. I’m certain that I will receive some emails and phone calls on this as well as possibly some heat from family and friends but right now I just can’t bring myself up to the challenge. I started making some initial plans only to realize that the constant struggle of trying to accomplish this task coupled with the barriers that have been placed are mentally exhausting. As a father of a child with a terminal illness, the turmoil of wrestling with the thoughts of, “have I done everything in my power to do all that is possible for my terminally ill child” against that of a father thinking, “am I there for my children and family” has been difficult. After last year’s walk was over, I found myself on a constant “high” for about 6 to 7 weeks, but it was coupled with the continuous thought that my family suffered due to my inability to be “there” for my kids and my wife, not too mention all the responsibilities that I had burdened some very good friends and family with (THANK YOU to all of you for your help, you know who you are). I also remember the day of the walk, and how Sue was at her wits end. Michelle was really struggling with all that was bottled up inside of her with regards to SMA and Jennifer, and Sue was burdened with the responsibility of dealing with that. Michelle could not be more than one or two feet away from either of us at the time and that coupled with caring for Jennifer was a lot for Sue. I still struggle with how do I balance all of this. Fortunately, Michelle has started to release some of the stress and anxiety that was building up inside of her and I have found my worrying about her subsiding some. She now welcomes (happily) the thought of going to school. Even though the psychologist told us that we were doing everything we possibly could for Michelle, it was really difficult to see her struggle. I can’t help but think that maybe I could have been there more for Michelle. Some people might say that I couldn’t have been there more, but on occasion as a parent you second-guess yourself. So, right now I have no intention of planning next years walk. (at least for now, time will tell) Yesterday I received in the mail, the book I purchased about another SMA family. Helen Baldwin, mom to Jeffrey, wrote a book called “The Jeffrey Journey”. It is her personal account of her, her husband Randy, and her three children Matthew, Katie and Jeffrey’s encounter with SMA and the impact it has had on all their lives. Helen and Randy’s son Jeffrey was diagnosed at two months of age with SMA type I. Jeffrey passed away from this earth at the age of 5 ½ months but made an impact like all of our kids. Ten percent of the profits from book sales will be earmarked for SMA purposes, primarily for - but not limited to - the needs of families, so the more books sold, the more families helped! The book deals realistically with the impact of SMA and includes resources, facts about SMA, and our common goal of squelching its devastation. There is also a special dedication, with one section honoring those with SMA (Jennifer’s name is mentioned), and another section serving as a memorial. It is impossible not to be overwhelmed when reading the hundreds of names. The book comes with a bonus - a CD of the music composed by Jeffrey’s maternal grandmother, JoAnn Derden. The publisher (Trafford) has provided a book page -http://www.trafford.com/robots/03-0953.html and the cost is $26. You can also order through Helen who will personally sign the book if you want her to. She can be reached in the following ways: 1.) jeffreyb@skybest.com (PLEASE put SMA or Book Order as the subject); 2.) P.O. Box 964 - Jefferson, NC 28640; 3.) 1-800-499-3555; or 4.) (336) 982-8289. Well, Christmas is right around the corner and we have most of the shopping done. The tree is up, the wreaths and candles are on and in the windows. Michelle is itching for Santa to come to the house. Jennifer still doesn’t quite get it but likes the Christmas songs and joins in singing with her big sister. (especially, “Santa Claus is Coming to Town”) Finally, A happy birthday wish to our really good friend Liam! We had a blast seeing you, your big brother Colin, and your Mom and Dad. All for now….. December 12, 2003. I am amazed at the goodness that is still alive in the world. Sometimes it seems like there is very little left but I know that there is far more goodness than what most people would think possible. I want to share the following three random acts of kindness that have occurred in our lives over the last three weeks alone. About three weeks ago, I was called into my employer’s office and asked to close the door. Of course, as most people would do, you automatically think the worst, something has gone wrong, you’ve made a mistake, or the like. At any rate, my employer and his wife (Sol and Donna) proceeded by saying that they wanted to do something special for Sue, the kids and me. With that they proceeded to tell me that they wanted to give us an all expense paid trip to Disney World, including air fare, hotel, airport to hotel and hotel to airport limousine transfer, staying at one of the top hotels in the magic kingdom on the mono-rail line, hopper passes to all 4 parks for the entire vacation, a pre-booked Mickey Mouse character breakfast, a pre-booked event called Fantasmic, and the list goes on. The trip has been planned and booked entirely by Donna (the travel coordinator) and, as always in the Sol and Donna fashion no expense has been spared. We will be leaving shortly after the Christmas and New Year holidays. So to these two kind, generous and amazing people we say thank you! Shortly thereafter, about two weeks ago we learned through Jennifer’s Auntie Jo that another amazing couple (Jan and Bud) who live in Ohio and are very good friends of Auntie Jo and her family, once again held their Holiday Letter Writing on behalf of Jennifer. Imagine the spirit that is alive in these two people (as well as their family and friends) who live hundreds of miles away and continuously think of Jennifer and constantly keep all of us in their thoughts and prayers, not to mention the gift of giving to help Jennifer. If you’re not familiar with Jan and Bud, they are the kind individuals who generously donated last year to help Jen in getting her Tripp Trapp chair as well as held their Holiday Letter Writing on behalf of Jennifer. So to these two kind, generous and amazing people we say thank you! Finally as I was parking my car in the garage a couple of nights ago after arriving home from work, I noticed a “LARGE” shipping box in the middle of the garage floor between our two cars. So, the normal husband mentality in me kicks in and automatically thinks that the wife must have bought something either on-line or mail order and it has arrived and soon I will find out how much “we” spent. As I entered into the basement from the garage I could hear the water running, which only meant that the girls were having their tubs. As I proceeded up the stairs and into the kitchen from the basement, there on the kitchen table were two large stuffed holiday animals and a tin full of cookies. Attached to each stuffed animal was a card, one to Jennifer and one to Michelle, and on the tin of cookies was a third card to Sue and myself with a letter from the “North Pole” signed by Santa’s wife “Sadie Claus”. She explained that because Jennifer and Michelle have been such good girls this year, and because Santa was going to be very busy, Sadie and Santa didn’t want to forget Jennifer and Michelle so she made sure that they sent something along a little earlier. So for a few seconds, I tried to figure out who had sent all this along. I picked up the third card and saw a bunch of names that signed the card, as I read the card and the names signed on the card it occurred to me that one of my clients had put this all together. This group, Delores and the entire clan at Armatron took some personal time and gave financially and made the lives of two little girls that much better. The group of people at Armatron are truly amazing. They are not just co-workers, they are family. They are always pleasant and willing to help. They give tirelessly to so many. All characteristics that Charlie and Ed live by and that all their employees live by as well. An amazing group, so to the entire Armatron clan, we say thank you to you also.
November 26, 2003. Jen says, "Happy Thanksgiving".
November 25, 2003. Jennifer & Michelle had a blast on Saturday playing catch, balloon bounce, coloring, having lunch, braiding hair, talking about loose teeth and just hanging out with Laurie and Louise! Thank you Louise for the great dessert and to both of you for spending some time with us. We can hardly wait to see you guys again. Also, thank you Kyle, Will, Owen, Carol and Bob for having my family and me over for dinner on Sunday! Mom, Dad, Michelle and I had a great time and like always, it was good to see you guys. Jennifer had her first horse riding or AKA “hippo therapy” on Monday. Mom reports that all went well and Jen really had a blast riding Tully with her therapist Carolyn. Michelle says thank you Linda, Megan and Matthew for letting me hang out with you guys while Jen had her horse riding therapy. Finally, Jen reports that her big sister and best friend Michelle has officially lost her first tooth!!!!! Monday, November 24, 2003, at 5:45 PM my sister’s loose tooth finally fell out. November 21, 2003. The week in a nut shell. Jen’s congestion came and went without any further development, which is good news. Monday brought a full day at Children’s Hospital. The pulmonary clinic went well and Mom and Dad were trained on the insufflator / exsufflator or better known as the cough machine. It’s actually a pretty amazing piece of equipment. However, Jen didn’t think it was that great! The prescription for Jen’s cough machine has been sent off to our DME supplier and should arrive at the house soon. The staff, nurses and Dr. Boyer from pulmonary have all been really helpful. Dr. Darras in neurology spent some time with Jen and reports that since the last visit 4 months ago, the progression if any has been minimal, more good news. Then Jen met with Dr. Shapiro, her orthopedic doctor. Visible to the naked eye compared to 4 months ago is a curve in her spine. Dr. Shapiro ordered x-rays and as we expected Jen has started to develop scoliosis. Scoliosis in medical terms, is a lateral deviation of the normal vertical line of the spine with rotation of the vertebrae within the curve. The curve is minor and measures at 15 degree’s, which is not a major curve but scoliosis has started to develop. Additionally, the side view x-ray provided Dr. Shapiro with additional insight. As he suspected, and which is also visible now to the naked eye, Jen has developed kyphosis of the spine. Kyphosis, in medical terms is a posterior convex angulation of the spine as evaluated on a side view x-ray of the spine. In the human language (ha, ha), it is a curvature of the spine in a rounding manner, that which is similar to what is known as ‘hunch back”. Kyphosis is a result of weakened trunk, head and neck muscles. Dr. Shapiro voiced some concerns over both the scoliosis and kyphosis and so we are scheduling an appointment today in order to get Jennifer into the bracing clinic in the very near future for a trunk brace. We had hoped to avoid trunk bracing for a while longer but apparently that’s not going to happen. All in all the day was long and we did not originally anticipate having to go to the radiology department for x-rays but it was good. We now have resolution in the aqua therapy department. Based on letters written by Jen’s therapist and another evaluation, primary insurance is now covering her continued visits to the pool. In the wheelchair department, still no word from secondary after our rebuttal to their deferral on Jen’s power wheelchair and so we continue to wait, they don’t have much longer to respond but obviously they will more than likely wait to the last possible moment. Okay, knock on wood, we have still managed to avoid colds and flu within the Gaudreau household!!!!!! Jen sends her best to everyone, and says: “Have a great weekend!” November 14, 2003. Jen skipped aqua therapy yesterday, a little bit of congestion and just not quite herself late Wednesday and early Thursday. Mom felt it best to stay home. By the end of the day yesterday, she appeared to be back on track. However, last night brought on some heavier congestion and a pretty restless night. Hopefully, everything will clear up today. She is not running a temp and her appetite is strong, so these are goods signs. On another note, we would like everyone to take a minute and visit another “little soldiers” website who recently lost his battle to SMA. Please go to Jen’s “Links” page and click on the link to “Benjamin Foundation”. Benjamin’s parents and big sister continue to fight this disease with all their hearts. The Benjamin Foundation was established in Benjamin’s memory to help raise awareness and help eradicate the disease known as Spinal Muscular Atrophy. While your visiting Benjamin’s website, check out the raffle that the Benjamin Foundation is currently holding. Learn how to win an APC CUSTOM BIG BOY MOTORCYCLE! For all you motorcycle enthusiast, this is a sweet bike. According to Ben’s dad, the Foundation is selling only 450 tickets. The cost per ticket is $100 and they hope to sell all the tickets by March 2004. Address and other important information concerning the raffle and how to buy tickets can also be found on the website. Jen sends a big thank you to Matt, Emma, Noreen and Paul and to all their sponsors for their participation in this year’s walk. She also sends a big thank you to Kyle, Will, Owen, Carol and Bob and to all their sponsors for their participation in this year’s walk as well.
Thanks guys!
November 7, 2003. Check out the new pages in the photo gallery. There is Me & My Family 8 and 2nd Annual NE Walk-&-Roll-a-Thon. Have a great weekend.
November 7, 2003. The week in a nutshell. Jen’s physical therapy this week went pretty well except for today. For some odd reason, Jennifer decided to wake up at 5:30AM and stay awake. So, “Lilo & Stitch” was playing at 5:30 AM. Which means that physical therapy today was off. Jen was tired and according to Mom, Jen’s physical therapy today was not as good. Aqua therapy was status quo and Jen enjoyed it. Still nothing on Jen’s power wheelchair situation. According to OT from Children’s Hospital earlier this week, their official reply to the deferral was being sent out. So assuming procedures operate appropriately, we should have a response to the rebuttal on deferral by the beginning of December. If the rebuttal is denied then it’s off to arbitration, which will probably take another 30 to 60 days. Tack onto that set up and delivery assuming arbitration is in our favor and it could be February/March before Jen gets her power wheelchair. All in all, Jen is doing well though. Her cough is slightly weaker but not drastically and sitting up remains relatively unchanged. (i.e. – lots of pillows around to cushion the falls!!!) Also, through Jen’s physical therapist, Jen is now using full leg braces to help with her stander and assisted standing positions. Onto the big sister Michelle. Michelle has her first loose tooth and is probably the most excited child we have ever seen when it comes to loosing a tooth. She has watched “America’s Funniest Video’s” and has had the opportunity to see kids having their teeth yanked out with a string tied around the loose tooth and then slamming the door. Last night she told us “I can’t wait to have my tooth fall out, but I’m not going near any doors with string!” too funny. Well, that’s pretty much it for the week. We are looking forward to tonight and spending some time with our good friends and neighbors. (Joe, Michelle, Mark, Linda, Kevin and Laurie) Jen sends a big thank you to Chris, Brenda, Brielle, Bryant, Donna, Ken, Sal and Rose and too all the Ciccio supporters. Also to all the North Attleboro Police Officer’s, the “North Attleboro Patrolman’s Association”, the “North Attleboro Police Association”, to the Fontaine Family, the Gray Family, and to all the Generous donors in the North Attleboro and Attleboro areas. Jen sends her best and says: “check out the new pages in the photo gallery. There is Me & My Family 8 and 2nd Annual NE Walk-&-Roll-a-Thon. Have a great weekend.
October 30, 2003. Aqua therapy today, Jen’s favorite. Then it’s off to pick up her big sister Michelle at school. Things are going along relatively well. Jen received her new braces from Gordon two days ago. She now has 2 new pairs, “shorty’s” and “longs”. The shorty’s are designed to provide Jen with greater comfort when on the floor in a sitting position. The longs are designed for all other time and now her PT is suggesting that Jen wear them all night if possible. On November 17, we have our appointment with the respiratory therapist for training on the cough-a-lator, a 6 month evaluation with Dr. Darras in neurology, and a follow up with OT/PT on Jen’s power wheelchair still in limbo. Should be a very busy day. We have been fortunate and seemed to have skirted around the most recent cold’s and flu’s that have gone through some homes of friends. Thank you to Tom, Heidi, Braydon, and the Pelham Fire Department for their generosity, hardwork and effort in this years walk! October 21, 2003. Congratulations to Debbie P. for the first correct answer! "Go Nomar!" Unfortunately, it would appear that Nomar's performance was slightly under par to say the least but Jen still like's him. T-shirts are on the way, holler if sizes aren't right. Love, Jen. PS - Prayers for MJ please. It seems like she has been fighting something for a couple of weeks now and she just can't shake it. Hang in there MJ. October 17, 2003. Quick Jen update, Mom reports that yesterday’s aqua therapy went really well. Jen actually managed to turn herself on her own while sitting halfway submerged in water on her bench a complete 90 degrees. It took some time but she did it all on her on. Way to go Jen! It looks like secondary insurance is now picking up aqua therapy sessions, with negotiations still continuing with primary. No matter what, Jen will continue to go to aqua therapy. This has been the best thing for her and we will not take that away from her, no matter what the cost. Also, approval was received from primary insurance (70%) for Jen’s power wheelchair; however, secondary insurance (the remaining 30%) has deferred their respective portion. We won’t go into reasons why, because they are simply stall techniques and we all know what the real reason is $$$$$$. We are now fighting another insurance battle. If letters from occupational therapy do not reverse the deferral, then it looks like arbitration. At any rate, Jen’s power wheelchair still has not arrived, and more than likely it won’t happen for another three to four months, assuming we go all the way to arbitration and we succeed there. Coughalator is in process with ordering in place. (Thanks KR, we’ll be in touch.) Jen sends her best to everyone. Thank you’s to the DuFour, Patno, Miller, O’Connell, Butler, Armstrong, Currie and Kerrigan families. For all the support, hard work, money raised and participation in this years walk. You guys rule and are some of the best neighbors anyone could ask for. Also, thank you to Laurie and Mark P., for all their help with this year’s walk. For chasing down the rolls donated by Interstate Bakeries and getting them to the walk for all our hungry walkers to enjoy. For the great “Marshall’s Team” turnout and all that you guys have done for raising money and awareness. Jen says Thank You!!!!!!
October 15, 2003. Thank you to the following people for all their help with our “2nd Annual Walk & Roll-A-Thon”: To my “brother” Dan, his wife Dora, and his children Danielle, Adam and Roby. A heartfelt thank you for all that you have done for us. Sue, Michelle, Jennifer and I have been blessed and are fortunate to have all of you as a part of our lives. You guys have always been a very important part of our lives, but now even more so. Clearly demonstrated in all that you have done for us even before SMA entered our lives but even more so since that first day back in June of 2002 when we first spoke of what was going on. Thank you for all the help at the food table, for bringing the deep fryer, for prepping and cooking the freedom fries, for walking, for raising money, and for all that we forgot to mention. To our very good friends, Sean, Michelle, Colin and Liam. Sean, your help the day of the walk is appreciated more than you’ll ever know. For set up, for bringing the tent for the DJ and band, for parking duty and everything else we haven’t mentioned. Michelle, Colin and Liam, again thank you for all the support, the tent, for walking and being beside us again this year. To all of you, your support has been phenomenal and we are blessed to have you as a part of our lives. To Andy, Michelle, Kevin, Rachel and Ryan. Even though we have only known you guys for barely a year, we feel as if it has been a lifetime. Mainly because of all that you have done for us as an SMA family. For being the inspiration behind the whole walk, and for allowing us to work with you guys in making it such a great success, we thank you. We know Rachel is very proud of you guys and Jennifer can’t thank you enough. More thank you’s to come. On to the Jen update, Jennifer is doing well and had physical therapy yesterday with Kristie and Phoebe. Mom reported that therapy went well and that Jen worked very hard. Today, Jen is going “bike” riding with her big sister Michelle and her good friends Kyle and Will. Jen has been improving slightly with her Dani. Turning is still somewhat difficult and due to neck weakness Jen’s head is still falling forward when she stops. We are looking at two alternatives, one is a chin plate on the prone support of the Dani so that Jen can rest her chin on it when cruising around and the other is an anterior head support system, which not attached to the Dani but rather simply bracing around Jen's neck that will prevent her head from going forward when she stops. Hopefully, we’ll get that issue resolved. Dad has learned how to adjust the tension and braking speed on the Dani so hopefully that will help also. More updates soon with some new pictures to come to the photo gallery.
October 14, 2003. Hello to all the Jen fans. Jen says thank you to Pete, Joe, Jeff, Pauline, Diane, Chris, Jeanne, Ed, Silas, Camille, Ed, Jess, Elizabeth and Patrick! For all your help with the walk, for donating all the hamburgers, cooking them, helping with the freedom fries, for cross walk duty, for parking duty, for raising money, for helping with the Jenny’s Team Banner, for the tent (thank you Provost Family!), for set up, for tear down, for being there for us, for walking and participating. We had a blast and again it goes to show what teamwork is all about. Without you guys, we don’t know where we would be. So thank you, again for everything above and all the things we forgot to mention! More “thank you’s” to come. Okay time for another Jenny Quiz. This time Jen will send the first person to correctly guess what it is that Jen is saying, four “Jenny’s Team – 2003” T-Shirts. Sizes will have to be Large, X-Large, or XX-Large since everything else is gone. So here it is: What is it that Jen is saying when she says, “Go Momaaa”! Not that she has said this very often but we think that several of you out there should be able to get this one. Guesses can be posted either in the guest book, or emailed to us at: smjgaudre@msn.com. Jen sends her best to everyone. C-Ya.
October 13, 2003. Thank you to Jo, Tom, Eileen, Mike, Kevin, Ryan, Chris, Myles & Amanda. For all your help with the walk, for the t-shirts and DJ, for the long road trip to the Cape Cod Chip Factory, for working at the registration table, for helping with crosswalk duty, for the pictures, for raising money and your participation in the walk, and anything else we forgot to mention. Your continuous help in our efforts to raise funds for a cure is greatly appreciated. Jen had a good weekend, with a trip to Grammie and Papa’s for the day on Saturday. Papa’s sugaring house is finally complete and he can hardly wait for winter to come and go and spring to arrive so he can test out the new maple syrup pans. Jen and Michelle had a great time with their cousins Silas, Camille, Elizabeth and Patrick as well as all their aunts and uncles. Mom is recovering from her 5-mile walk on Sunday in Boston to benefit breast cancer. Dad, Jen and Michelle stayed in on Sunday, had breakfast together and then watched “Monster’s, Inc.”. It was a quiet day as Jen had a low temp of 99.5 in the morning but she was back to normal 98.5 by nighttime. She has been junky the last couple of days and seems to be fighting a little something, not quite sure as to what though. October 10, 2003. Sorry for the break in journal entries, as always there never seems to be enough time in the day. Thank you to Grandma, Grammie and Papa. For all your support, hard work, and help in our race to find a cure. For all the money, labor and time put into the Vermont home grown potato’s used to feed our hungry walkers the day of the walk and for joining us, raising lots of money and participating in the 2nd Annual Walk & Roll-A-Thon. Jen is lucky to have such amazing grandparents. Also, thank you to Grandpa for watching over us and giving us some great weather the day of the walk. (Not to mention all the help we had with the weather from our other big helpers, Marshall - Rachel – Taylor - Alec – Brittany – Benjamin – Jeffrey – Cianan – Cecilia – Devon – Sidney – Mia - Sierra and the rest of their friends) Hurricane Isabel had no chance of hitting Chelmsford, and all the SMA buddies down here, Jennifer, William J., Carolyn, Connor, William M., Katie, Sean, Spencer and the rest of their friend’s thank you! Thank you to Danny M. and Vermont Heritage Spring Water for donating all the bottled water again this year for the walk, none of our walkers went thirsty or became dehydrated thanks to your support and generosity. More thank you's to come! (To the Co-Presidents of the “Jenny Fan Club”, remain strong. Our continued prayers are with you and know that you can call on us at anytime.) (Little man, watch over them. As always.) (Also, KR thank you for all the additional info. On the coughalator.) In closing, Jen wants to tell everyone how proud and lucky she is to have such a great big sister. Michelle, you have gone through so much in such a short time. You have been forced to grow up much faster than most other kids and learn the harsh realities of life at a very young age. The last year has been a very hard road and Jen knows that it has not been easy for you. You have struggled continuously with so much and the way you have conquered these struggles that you have faced is amazing. Mom, Dad and Jen, now see you turning another corner on this road and we are very proud of you. Jen is very lucky to have you as a big sister and she know’s it “Welle”! September 29, 2003. Good morning. First a thank you to Tante Celia and Eric from both Michelle and Jennifer. We really like all the neat gifts you sent to us. Michelle had the paper spread out all over the house the first night, with crayons littering the paper trail as well! Jen really enjoys her CD and listens to it all the time! So, thank you for the really great surprises. We are sure Laurie and Mark got a big charge out of Michelle’s notes. Okay, things have settled down quite a bit since 9/20. (And the number continues to grow. Approx. $48,000 as it stands) So soon we will start sending out our thank you’s to all of you. We also want to mention a lot of thank you’s in Jen’s journal as well so, if you don’t see your name right away, (because the list is very extensive) be patient, we’ll get you in here in due time. Jen is doing well, and had a great weekend. Mom has come down with a cold and she hopes no else gets it. This week brings a visit to Children’s Hospital on Wednesday with pulmonary for Jennifer. We are hoping to talk to Dr. Boyer regarding the “coughalator” or also known as the in/ex-sufflator. This will help Jen with coughing and hopefully help us through the upcoming fall and winter months if Jen comes down with a cold. Jen sends her best to all of you, including that family up in ALASKA! Kathy and Mike, hope all is well. We hope Billy had a great birthday. Talk to you soon. Love, Jen. September 23, 2003. Hi everyone. We wanted to share the preliminary results with all of you from the Walk & Roll-A-Thon. Currently we have received pledges/donations totaling approximately $43,000. This includes matching gifts from some of our participants’ employers. Also, we have estimated an approximate 350 attendees/participants at the walk. Based on observations from the day, we wouldn’t have guessed that many people but after summarizing all the pledge sheets and reviewing participant information that’s where the numbers fall. Thank you to all of you for your help, hard work, generosity, participation and attendance. You all made the day a tremendous success.
Of course, there are still many checks filtering in which will add to the final number. Once we have a final solid number, we will forward that information along as well.
How does Jenny’s Team stack up you ask? Well, Jennifer is psyched to announce that Jenny’s Team – 2003 raised an astounding $19,000 which includes donations received at the burger, hot dog and freedom fries table, along with checks received to date and matching employer contributions. Additionally, there are still more checks coming in. We also had approximately 130 walkers for this year’s event! Way to go “Jenny’s Team”!! Jennifer thanks each and everyone of you from the bottom of her heart. More walk info and pics coming soon!!!!!!!!!!!!!
SEPTEMBER 17, 2003! “Happy Birthday to YOU, Happy Birthday to YOU, Happy Birthday Dear Jenny Jenster, Happy Birthday to YOU”!!!! Mom, Dad and Michelle wish you a very happy birthday and the best one yet. We know that three appointments at Children’s Hospital is not the way most 2 year olds would be celebrating their birthday but it will still be a great birthday, and not even SMA will be allowed to ruin it. We love you very much, keep fighting and remain strong little one! Happy Birthday ‘Sweetie”. Love, Mom – Dad – Michelle. September 16, 2003. Before we get into Jen details, please keep in your prayers two local families who are struggling with SMA in their lives. First a local family in Salem, NH, who lost their son Benjamin last Monday at the age of 8 ½ months old, and second with another local family from Swampscott, MA, whose 6 ½ month old son Sean is fighting this dreaded disease as we speak. On with Jennifer, she is doing better. Her cold seems to be disappearing, her coughs are not as junky and her lungs are still clear. These are all good signs and good news that we are heading in the right direction with this cold. Yesterday was quiet for Jen, but Michelle had gymnastics in the afternoon. Today brings PT early AM with Kristie. Wednesday is the really crazy day with three doctors’ appointments at Children’s Hospital. The first appointment is with Dr. Glader, Jen’s general pediatrician and case coordinator at the hospital. The second appointment is with Dr. Nemic. And the third appointment is with Dr. Snyder – Ortho. It looks like Jen’s AFO’s are too small and causing some discomfort again. It may be time for some new ones. Thursday is quiet for Jen and then Friday brings PT in the morning and then aqua therapy in the afternoon, with still no resolution in sight with insurance. Then of course, Saturday brings us to our “2nd Annual Walk & Roll-A-Thon”!!!! With that, we received confirmation yesterday that our Congressman, Marty Meehan will be attending the pre-walk activities and provide us with some of his time to meet our families and walkers. We look forward to spending some time with him and all of our walkers. See you then. September 12, 2003.
To start with, lots of thank you’s to everyone who has just gone above and beyond in helping with the Walk-A-Thon. To all of you who have taken time in getting items donated, helping in the pre and post walk events like volunteering, displays, DJ, games, food, tents, bottled water, t-shirts, with pledging and donating money, with distributing flyers and pledge sheets, to finding more walkers and talking it UP! The list is way to extensive to put everyone’s names in writing and if we missed something above, it is purely because our brains are now cramping. Yesterday Dad distributed 4,500 flyers and 4,500 pledge sheets through out the entire Dracut school system. Even if it just raises awareness about SMA than it has accomplished something positive. We are anxious to see everyone in a week from tomorrow. It sounds like “Isabella” our friendly hurricane will dodge us but who knows with the way these meteorologists work! Now there’s a job I’d love to have. On another note, Jen has come down with a cold, her first of the season. She was temping around 99.7 to 101 on Tuesday, Wednesday and Thursday but it seems to have subsided. She started coughing with runny nose on Wednesday and today continued to have lots of junk in the nose and throat. Mom does a great job at getting that stuff out but Jen doesn’t like it very much. Fortunately no rattling in the lungs and hopefully this will all pass uneventfully. The morning coughs have been weak, but she seems to be getting through them. Last night her voice was raspy but she was content and relatively the same old Jen. Jen had physical therapy today and Mom reported that Jen was pretty tired afterwards. Donna, Jen’s PT, has been really talking up the Walk and has actually recruited some more walkers. Mom is tackling the insurance issue with regards to aqua therapy, which was cancelled on Wednesday due to the fact that Jen was not feeling well. Suffice it to say, “Bureaucratic BS” in continuing these aqua therapy sessions! Still no word on the power wheelchair as far as approval goes. You really gotta love insurance providers……. Not much else to report. Jen sends her best. Everyone have a great weekend, Jen will keep you posted on her cold.
September 7, 2003. Yesterday I had a really great time with all my friends from the neighborhood. We had lots of fun playing outside and they all think my Dani is so cool! Today, was a big step for me. It was the first time I went out into public with my new Dani. I went to the mall to buy a dvd with Michelle. Lots of people stopped and stared, others gave me big smiles, some didn't know what to do or say, and one person even said loud enough for me to hear: "what kind of contraption is that?" I'm sure the person that said it meant well. Anyway, this was a big day for me. I drove my Dani from the parking garage into the mall and all the way to the movie store. Michelle had to help me back to the car because by the time I got to the movie store I was tuckered out and didn't have enough energy hold my head up or drive my dani to get all the way back to the car. I'm glad I got out there though, it was a real big step for all of us. Okay, enough for today, I'll talk to you soon. Love, Jen.
September 4, 2003. Wanted to share this recent note on the national website of FSMA. Before you read this, Both Massachusetts Senators, Kerry and Kennedy, would appear to be in full support of this and voting yes on these appropriations. However, it still can't hurt to contact them and let them hear our voice Also, if you DON'T live in Massachusetts, (say perhaps NH or VT!!!!!), please visit www.fsma.org and on the front page is the link to this request for support and how you can contact your state senators. "Update September 3, 2003 - The Senate is currently considering the FY 2004 Labor-HHS-Education appropriations bill. The timing on the Specter-Harkin-Feinstein amendment, to add another $1.5 billion to the NIH budget, is still undecided, although it is believed that Senator Specter will try to bring the amendment up late in the debate, possibly at the end of this week. Senators Arlen Specter (R-Pa.), Tom Harkin (D-Iowa), and Dianne Feinstein (D-Calif. are sponsoring an amendment to the FY 2004 Labor-HHS-Education appropriations bill to increase NIH funding by an additional $1.5 billion, for a total increase of $2.5 billion (9.2 percent) over FY 2003. As reported by the Senate Appropriations Committee in June, the Labor-HHS-Education bill provides $27.982 billion for NIH, a $1 billion (3.7 percent) increase.
The additional fund would be obtained by pushing back into FY 2003 $1.5 billion in funding advances that were appropriated in FY 2003, but advanced into FY 2004. By moving advances in this manner, it permits an additional $1.5 billion to be appropriated for the NIH without breaking the cap for FY 2004. However, because this amendment would violate the FY 2003 spending cap imposed in the FY 2004 budget resolution, it will require 60 votes to pass. If your Senator is not in favor of this amendment to the bill, or is still undecided, please call him/her today. Let them know you favor the increase in NIH's budget." Any questions should be directed to Kimberly Symonds, Director of Public Policy with her email at: ksymonds@fsma.org
Thanks for your support. Jim, Sue, Michelle and Jennifer!
September 3, 2003. Good morning everyone! Insurance issue for aqua therapy still in the works. No news on the power wheelchair. Yesterday was a good day for Jen. Upper body control was better with less toppling over! As the end of day approached, there was less control and Jen managed to get in a few “nose dives” (ouch) but she was tired and so off to bed she went. Today will include some physical therapy, with Kristie coming over. Work hard Jen! Still no news on the unfolding event for the walk, hopefully today we will hear back with a “solid commitment”. Keep your fingers crossed! On another note, about two months ago, Michelle and Dad were walking along and Michelle spotted a bright shiny penny on the ground. Dad told her to pick it up and say “Find a penny pick it up, all the day you’ll have good luck!” and then make a wish. A couple of days ago, Michelle and Mom were out and Michelle spotted another penny. She picked it up and repeated the saying, and with that made a wish! As instructed she was told not to divulge the wish otherwise if she did it wouldn’t come true. The following day, Mom’s curiosity was starting to get the best of her and finally she convinced Michelle to mouth the words to Dad without actually saying them out loud. So, Michelle graciously honored Mom’s request. Amazing to say the least as to what Michelle’s wish was. Michelle, Mom and Dad both hope that your wish comes true just as much as you hope it comes true. Jennifer is blessed to have such a great friend and sister!!! Everyone have a great day. August 31, 2003. Ooops. "develops" should read "developments". And one other thing, thank you Sean, Michelle, Colin and Liam for sharing your home and time. Jennifer had a blast as did the rest of her family. And Michelle, "More Play Doh" was a good guess too! Good night.
August 31, 2003. It is 12:30 AM and Jennifer is fast asleep. Thought a brief update would be in order. We hope everyone is enjoying their long weekend. Jennifer has been adapting to her standing dani relatively well. Her turning and control continue to improve. The aqua therapy evaluation has proven to be a set back. Based on the conditions and diagnosis of SMA and the "non-noticeable" improvement as mentioned by our insurance provider further sessions of aqua therapy are being denied. As parents of Jennifer, we have found that these sessions have been instrumental in maintaining Jennifers strength which remains and even to some degree improving, however the insurance providers review board believes they are not beneficial due to the fact that their belief is that Jennifers condition has not "improved". We will be working closely with her PT's and Aqua therapist in order to continue these sessions whether they be covered or not. Hopefully we can get our insurance provider to understand that these sessions are so crucial. Only time will tell what the results are and how all plays out. Jennifer still has a few remaining sessions from the original authorization however they will run out in september. We will find a way to make these sessions continue. No news on the power wheelchair home front. Hopefully by the walk. The walk is really coming together and we are really excited about some new develops unfolding. Hopefully we will be able to share these develops in the very near future. Suffice it to say that we are really excited about them. Some more orthotics appointments coming up next week as well as another aqua therapy session and Jen's two physical therapy sessions as well. So busy to say the least. Jenny's Team T-shirts are on order and should soon be landing on our door step. Jennifer is psyched to officially have her best friend "Michelle" as her team captain this year. Michelle is just as excited too. This week has been interesting. We are not quite sure as to if the slight changes in Jen are growth related or SMA related but we've had to increase the number of pillows again when sitting on the floor. Jen was tipping over more than usual this last week and both Mom and Dad have noticed some slight upper body/head and neck control changes. Hopefully it is just a period of growth and things will correct themselves. Well, not much else to say except good night and be safe. And as always, Jen sends her best to all her fans! Love, Jennifer. August 29, 2003. No, not "More Popsicle", "More Popcorn", "More Cracker", or "More Peanut Butter Cracker. And, the answer is: When Jen says: "Moy Pa Co!" she wants "More Chocolate Milk". Fortunately we have Michelle who can easily decipher what Jen says. Jen sends a big hello to all her fans, and wants them to all have a safe and great labor day weekend!! Talk to you soon. Love, Jen. PS - Michelle sends her best too!!!!!
August 28, 2003. Okay Sean O., no not "More Popcorn", but good guess!!! Everyone is getting the Moy thing. The Pa Co will soon be known!! August 27, 2003. Okay Debbie P., I've got the skinny on you. No fair cause I know my Mom told you the answer! L&M, good guesses with the "More Cracker" and "More Peanut Butter Cracker" but I know my Dad shared the answer with you guys too after your guess. Come on Joe and Michelle C., Mark and Linda M., Laurie and Kevin C., where are those guesses?? I can't wait to see Megan, Taylor, TJ, Shawna, Lexi, Megan, Matthew, Timmy and Molly on the 6th! Okay, one more day before I give my parents the okay to put the answer in the journal. It's getting late, and I'm still coloring my Caillou picture! Mom and Dad say bedtime but I really don't want to go to bed! Say nite, nite, Jen! "Nite, Nite"! 0gmmmmmmmmmmmmmm Okay that's Jen typing good night~~ August 25, 2003
Okay, quick Jenny quiz family and friends! If you are with Jen and she tells you the following: “Moy Pa Co!” What is she asking for? Email us with your guess at: smjgaudre@msn.com
August 22, 2003
Good afternoon everyone. My aqua therapy evaluation went really well, like Mom and Dad thought. Also, Design Able called yesterday and asked what kind of tray I wanted on my power wheelchair, so I decided on clear. Mom asked them how much longer and she was told that it shouldn’t be too much longer. Design Able is still waiting for approval from insurance but Mom was told that once the approval comes through, turn around time is minimal! So maybe by the walk a thon I’ll have my new keeper “wheels”!! Today I’m just hanging out. I had physical therapy this morning and it went well. For breakfast I had a couple of munchkins …..YUM…... (glazed, my favorite) and I was kind of tired by 11:00 so I took my nap. Now, Michelle and I are coloring, cutting and gluing and having lots of fun (all while I’m having my lunch)!!! I’ll talk to you later. Oh, one other thing. Thanks S.S. ;>) for stopping by and checking out my site and for promoting the walk again this year. I can hardly wait to see you on the 20th!!!! Maybe we could take a picture together, if my Mom remembers her camera!?! If you need anything else, let my folks know. They’re looking forward to seeing you at the walk too. Love, Jen.
August 21, 2003.
Today I’m going for my swimming evaluation. The program requires that every so often an evaluation be done to make sure that I am benefiting from the therapy. Well, there’s no doubt about that. Since I’ve started my swimming therapy I’ve really done well and Mom and Dad both think that it has helped me make huge strides forward in keeping my trunk control and increasing the movement and strength in my arms. I hope everyone is doing well. Still no word on my final power wheelchair but Mom and Dad are hoping that it is soon. Here is a quick update on the walk! It is apparent that we have some very generous people as friends. Thank you to all of you so far who have sent in donations and letters of support. Just an FYI, anyone who is thinking about pre-registering for the walk, please make sure you get us all your sponsor sheets and donation at least a week before the walk. If you can’t get it to us by then, then just simply bring everything to the walk. We’ll have several people at the registration tables this year and they’ll take care of you then. Also, don’t forget we are trying to get head counts for “Jenny’s Team – 2003” T-shirts this year so as soon as you know how many walkers are coming with you, please email us at: smjgaudre@msn.com with those numbers so we can finalize the order. As always, anyone who participates on Jenny’s Team receives a complimentary “Jenny’s Team” T-shirt. (Assuming you told us that you were walking and that we don’t run out of extra’s if you didn’t tell us.) Like last year we’ll have extra’s but we don’t how long those will last. Last year we gave out all 250 “Jenny’s Team” T-shirts and the extra 50 we ordered went as well. If anyone knows of a company or companies that would be willing to sponsor Jenny’s Team – 2003, feel free to have them contact my Mom or Dad. Like last year I really enjoyed seeing those corporate sponsor’s with my name next to theirs. I hope everyone is doing well and I’ll let you guys know how my evaluation went later. Love, Jen.
August 19, 2003
A couple of days late buddy, but here goes: “Happy Birthday to you, Happy Birthday to you, Happy Birthday Dear Marshall, Happy Birthday to you!!” Keep on running, jumping and having lots of fun little man. I really liked your bench in the garden and will hold close the memory of the time spent sitting on it and planting Jen and Michelle’s flowers next to it, as well as celebrating at your parents house your first birthday with all your family.
August 17, 2003. Hello everyone! Right now I am taking my nap. (Amazing how I can sleep and type at the same time!) I just wanted to say that Michelle and I really enjoyed planting our flowers yesterday in our buddy ^i^ Marshall's garden!!! Marshall, my Mom and Dad were really happy to see both your Mom and Dad smiling so much! The great news you have brought to them couldn't have been given at a better time. Nicole, it was great to finally meet you, and everyone is right, you are truly an amazing little girl! I hope to see you again at the walk on the 20th. Thank you to the whole extended Potter family for sharing such an important day with us we really had fun and enjoyed our time together. You guys are an amazing family and we are so glad to be able to share time with you. On another note, Noreen and Emma, thanks for sharing some time with us as well. My Mom and Dad really had fun and so didn't Michelle and I. Especially the horse riding. Laddie was the best. (That's Michelle speaking there.) Thanks for opening your house to us and spending some time together, as always it was good to see you guys and we look forward to seeing you guys soon. Bill and Karen, great to see the both of you as well as Connor, Owen, and Timmy!! Michelle, Andy and Kevin, sorry you guys couldn't make it. Get better soon. Okay, the postings here have been minimal due to work requirements but we hope to get back to some regular schedule soon (Thanks for the subtle hint LP). My Doctor's appointment with Dr. Bateman went well. He really thought I had some good head and neck control and was generous with his time and information. It was nice to know that he will be there for me if I ever need him and his team. They were all great! The video swallow went well also. No new changes and the Doctors say things look good, so follow up in 8 months! So that was good news as well! Mom and Dad have become really busy with the walk on September 20th. We're hoping to raise lots of money and double the number of walkers. I think we just might do it. I know that alot of people are signing up for it and people have already started donating money. Keep up the good work everybody. Also, if anyone needs walk info., pledge sheets, flyers, etc., let my folks know, they have alot put together and are in the processing of sending alot out. Take care everyone! Love, Jen. July 18, 2003
Hi everyone! It has been a busy couple of weeks and things are back to status quo for me. Physical therapy and aqua therapy have been going really well. I think they are really paying off! Yesterday, Mom sat me up on the floor, with my pillows around me, to play “Barbie’s” with Michelle and I didn’t fall over for a whole hour!!!!! Hooray Jen!! I have been doing some longer periods of time in my new standing dani and I am really becoming a pro! Mario Andretti, move over cuz here comes Jenny!! Speaking of my new standing dani, check it out in my photo gallery under “Me and My Family 7”. The pictures should be up shortly. Mom took me to the doctors yesterday, gastro appointment at Children’s, and things are cool. The miralax is keeping me ….., well you know. My appointment with Dr. Bateman (Aug. 4th) at BMC is fast approaching as well as my next scheduled video swallow (Aug. 13th) at Children’s. I really didn’t like that appointment the last time. All that junk to drink and eat, GROSS. I am really looking forward to my vacation on the cape and hanging out on the beach with my cousins! Well, just wanted to let everyone know that I am doing fine. And Nicole I am really looking forward to meeting you on September 20th!!! Please make extra sure you find me to say “hello”. Love Jen!
July 8, 2003
Today is the official one-year mark from diagnosis for Jennifer. It was a year ago today that we received absolute confirmation from Dr. Rosman at Children’s Floating Hospital that Jennifer had Spinal Muscular Atrophy. It is hard to believe that a year has already passed. The events that unfolded to this day a year ago started two and a half weeks prior and clearly they were, along with several months following diagnosis, some of the darkest days and moments we have ever experienced. As we reflect back and look forward, we hope and pray that those types of days never return and know that with the continued hard work of MANY individuals and families that a cure is sure to be found!!!! It simply has to happen!!! We have come to know far too many people as a result of this disease. We are fortunate and happy that we have met them and have developed some very great friendships, but clearly we wish that all of those meetings and future ones were under different and more pleasant circumstances. Since that day a year ago, many good things in addition to the people we have met have surfaced. For example, our family ties have grown even stronger. The strength we have developed, the courage we’ve been blessed with, the unending support and understanding from our parents, brothers and sisters and friends has been profound! I am amazed at how even a year later each and every one of you continues to contribute of yourselves in ways that only the truest of friends could ever do and this has only proved itself time and again. The relationship that has developed between two sisters makes me believe even more that God is working under our roof every second of every day. For complete strangers to walk up to us and comment on what an amazing relationship Michelle and Jennifer have with each other only reaffirms what we have come to see develop before our eyes. Michelle cares so strongly for Jennifer that words cannot express the bond. I often refer to them as “best friends” (and they are) but it is MORE than that. Sue and I have come to realize that God has chosen us for this task, one we thought we would never be able to handle but slowly we are realizing that we can. (Of course we have no choice.) I am amazed at the strength, fortitude and perseverance that my wife displays everyday and at her ability to raise two beautiful daughters with love, compassion, friendship, understanding and most of all tenderness. Yes, our time as husband and wife gets set aside but rightfully so. A choice we made when we decided to be parents. One we do not regret! We have been given gifts from God and are thankful for them. Along the way there have been valleys as well. I will not discuss those but suffice it to say that they have only made us stronger. They have strengthened our resolve. Also, we have come to see the unspoken pain inside so many of you. The pain that you have felt and still feel when you think of this monster that is challenging our daughter in the fight for her life, and affects us all. That pain that so many of you think you have kept from us so well. We see it…. Know that we know your hopes, wishes and dreams as well!!! The hope for a cure, the wish that you could simply make SMA disappear and dreams of Jenny running, jumping and riding a bike on her own!! These will all come true and Jennifer WILL be a part of it, I assure you!!! She has been given a difficult assignment from God, one that she will fulfill, not just for herself but for all those affected by SMA! We want to say thank you to all of you. For your continued support, prayers and generosity. So much has been done for us that we could never even begin to repay all of you for what has been done. Know that we keep “ALL” of you in our daily prayers, our parents, our brothers and sisters, our brothers and sisters in law, our aunts and uncles, our cousins, our nieces and nephews, our friends, our friends of families and most of all our SMA Family. Without all of you Jennifer and us would not be where we are today. THANK YOU!! Love, Jim – Sue – Michelle & “Jennifer”
July 1, 2003
Okay, where to start. Well the power wheelchair process is moving along. Jennifer met with the “Team” and together the chair was put together mentally. Each person did their part and conceded when needed to (PT, OT, Assistive Communications, Mfg Rep.). Hopefully the design will be as effective as it has been dreamed to be. Right now, assistive communications has decided to relinquish the infra-red mouse/joystick as installed and configuration will take place on that later, a cost cutting of about ($3,000). Jen’s designed chair (the Koala) will offer her flexibility to adjust the seat up and down as well as provide her with flexibility in terms of arm and hand usage. The team felt she tired very easy with the joy stick and therefore thought it might be best to put the stick in the center of the chair so that she can use both arms/hands. The stick will drop down and/or swing out of the way so she can have a tray as well for use in other locations where table top access or service area is limited. We hope that we will not have to go to battle with insurance with what we finally put together and that the wheelchair as thought out is what will be approved. So the chair is in process! The trip to DC was a lot both emotionally and physically. Michelle and Jennifer were troopers the whole time. Michelle was very excited about the plane ride and just kept talking the whole time about being up so high in the sky and in such a BIG plane. All in all, the flight out and back was the best decision and really worked the best for the girls, "as well as Mom and Dad". The conference appeared to be a success, with so many families attending and lots of informative concurring sessions from grief counseling to mobility clinics to you name it. We saw many familiar faces and families that we have already come to know as well as met many new families. Our meetings on Capitol Hill were well worth the effort with lots of positive feedback to National from “The Hill”. Hopefully the rewards will be fruitful with increased funding to the NIH and NINDS for SMA research. Our meetings with Senator Kerry’s office and Congressman Mehan’s office went well and it was great that these aides asked so many questions and genuinely seemed interested. As well, we also found some time to take the kids on a Duck Tour through DC and across the Potomac. We all got to see many of our Country’s landmarks. The White House, The Capitol, The Smithsonian, The Washington Monument, Jefferson and Lincoln Memorials, Ronald Reagan Airport, (the planes taking off and landing right above our heads as we crossed the river) as well as so much more. We want to extend a very sincere “THANK YOU” to all of you who have made it possible for Jennifer to get around in her new “Standing Dani”!! For all of you who do not know what a “Standing Dani” is we’ll have pictures up on the site soon of Jen in her’s as well as some from the conference. Also you can go to www.standingdani.com to check out Dan Davis’s Company and his amazing invention! To the whole Standing Dani team thank you, Jen’s arrived at home safely from the conference yesterday and she had the opportunity to tool around the house last night for a little while before bedtime! As always, Michelle the big sister and “Best Friend” was right there to help!!!! Thank you Michelle!!! We arrived home from conference Sunday night around 12:30AM with both kids fast asleep. Mom actually managed to unpack all the bags and start the laundry after Dad brought them in. Mom and Dad had some quality time with kids after returning from conference on Monday, Tuesday and Wednesday. We all took it easy and did lots of family things. So last week was relatively quiet. As always this week the routine is back on. Monday brought two Dr’s appointments at Children’s Hospital first with Dr. Glader in general pediatrics and then with Dr. Darras in Neurology. Jen has been referred to Dr. Bateman at BMC by Dr. Darras so that we can consult with Dr. Bateman about various issues. Dr. Bateman is versed in the “Bach Protocal” and Dr. Darras would like us to meet with him and discuss issues relating to Jen and Dr. Bateman’s ability to assist Jen currently and in the future. Jen’s PT was cancelled for Tuesday but on for tomorrow. Yesterday was a visit to Auntie Ei’s and Uncle Mike’s for some swimming in the pool. The girls had a blast! The weekend calls for more traveling to visit the Poulin contingency in VT and we are looking forward to seeing everyone again! Jen sends her love to everyone and a big thank you for the continued prayers. Love, Jen.
June 13, 2003. Okay I know, I have to go to bed! Yes, it is now 11:30 and Mom and Dad just got back from "Marshall's Celebration" about 15 minutes ago AND "I AM STILL UP"! " I Love my Auntie GO GO!!!!!" Thank you for taking care of me, Michelle and Amanda for our sleepover. Mom and Dad had a really good time and they got to see so many awesome gifts and items being raffled. I think Mom's favorite was the "So Many Angels Quilt". Mom and Dad said that the event was amazing and they never saw so many people!!! The whole thing was a complete success!!! Way to go guys! Okay I promise to fall asleep now. Night Night, Love Jen. June 13, 2003.
Hi everyone! Just wanted to let you all know that my aqua therapy is really fun. I like to go swimming in the pool because not only is it good for me but also I really enjoy it. I am still working really hard with my power wheelchair and the whole left and right (or turning) thing. Hopefully we’ll get that worked out, whatever it is. Mom and Dad are really looking forward to tonight!! It’s “Marshall’s Celebration” and his Mom, Dad, Family and Friends have been working really really hard to put it all together. They’re going to have music, food, raffles and lots lots more, so I know that Mom and Dad will have a really good time, plus it’s to help raise money for a CURE! A big thank you to the whole Potter group for everything you guys do!!!!. Okay, now a big HOORAY for my best friend Michelle, your first year of pre-school is officially over and now we can go to Mickey D’s for lunch to celebrate with Mom!! Way to go Michelle!!! I’m glad the weekend is here so we can all hang out together and do lots of fun things. Tonight I’m having a “sleep-over” with my big sister Michelle and my cousin Amanda. We are going to do lots of neat things with Auntie Jo and Uncle Tom while they take care of us. And, thanks Auntie Jo for all those great meals you cook and bring to us on a regular basis!! You sure are a great cook! Alright, everyone have a safe time tonight and a great weekend! Love, Jennifer.
June 9, 2003. Check out the Cherubim CCD Class contributing their money to find a cure for SMA in the photo gallery "Me & My Family 6"!! Thank you to all of you for your generosity and hard work!! Love Jen. June 6, 2003
Weeeeeeeeee Weeeeeeeeeeeeee!! This was Jennifer telling Dad how she was doing 360’s in her wheels!!!!!!! Go Jennifer Go!!! Thank you God for watching over Michelle and Auntie Ei yesterday, we are so lucky that no one was seriously hurt. Jennifer sends her best to everyone and wishes all of you a super weekend! Love Jen. PS - My aqua therapy went really well today. I love swimming in the pool with my MOM! Thanks Mom, I love you!!
June 3, 2003. New pix's in the Photo Gallery. See Me and My Family 6! June 3, 2003
Jennifer wanted to share a very amazing and interesting event with all of her readers. On Saturday May 24th, 2003, Jennifer received a letter in the mail from her cousin Katie’s “Mom Mom” Marie. (That would be grandmother in Jersey talk!) After opening the envelope Jennifer found a nice note from Marie along with a flyer inside from Katie’s CCD class. Jennifer’s cousin Katie attends the St. John of God CCD Cherubim Class where her “Mom Mom” works. On the flyer were several pictures of children from Katie’s CCD class, along with a picture of Katie, all putting money into a clear teddy bear cookie jar!! Additionally there was a nice note type’d on the flyer from Katie’s Cherubim Class teacher, Pat B. It read as follows: (“CHERUBIM CLASS – SMA PROJECT” The St. John of God Religious Education Pre-school class, called the Cherubim Class, has collected pennies and loose change each class in empty film containers. Each child donated his or her change at the beginning of class into a clear teddy bear cookie jar so we could see how much we were collecting. One of our students, Katie Gaudreau, pictured at top right, has a cousin, Jennifer, who suffers from SMA. SMA, Spinal Muscular Atrophy, is a group of inherited diseases that destroy the nerves controlling voluntary movement which affects crawling, walking, head and neck control, and swallowing. Although our class only collected the modest amount of $68.00 we learned to share what we have with others. Each child enthusiastically contributed his or her pennies each class to a round of applause from their classmates, parents and teachers. They looked forward to adding their share of the change to our teddy bear. So on behalf of the Cherubim Class and their families, I wish to present this check for $68.00 to the foundation for finding a cure for SMA. Signed: Pat B. Cherubim Class Teacher.) Needless to say, Jennifer, her big sister Michelle and her Mom and Dad, were deeply touched by this amazing group of three, four and five year olds!! $68.00 is not a modest amount by any stretch of the imagination when it comes from such a young group of individuals, in our opinion it is astronomical!!! One of humanity’s difficult tasks, the art of giving, performed so eloquently by a group of individuals so young. To all the Cherubim Class students, our cousin Katie, their teacher Pat B., and Katie’s Mom Mom Marie, we would all like to express our sincere thanks. Not only from Jennifer, Michelle, Mom and Dad, but from all the children and families who live and fight SMA daily. That those children still fighting this disease can live the “CURE” and that those children who have lost their earthly battle with this disease can rejoice in knowing that finally a “CURE” has been found and that their battle was not in vain. God Bless all of you at St. John of God for all the good work you do!!! Love, Jennifer.
June 1, 2003. Oh one other thing, my aqua-therapy on Friday was really really fun! I had a great time "swimming" in the pool with my Mom and new teacher Katie. Mom said that I did really good and that we are going to go back alot more times! I can hardly wait. Thanks MOM, I love you - JEN! June 1, 2003. Okay enuf with the rain!!!!!!!!!!!! Yesterday was really good and I had a blast practicing in my loaner "wheels"! I definitely have 'stop' and 'go' down, it's just that darn left and right thing but Mom and Dad are really patient. I had a blast yesterday being able to just go where ever I wanted to go!! Hope the clouds go away and that Mr. Sun comes shining through REAL SOON so I can practice some more and have also have some more fun! Hope everybody is doing well! Thanks for the RAINBOW Friday afternoon you guys, (all three of you) but now I would like some SUN! Please....... Love Jen. May 30, 2003
Hi! Yesterday was a really great day because I got my loaner power wheelchair. I want to say THANK YOU to some really great people. First THANK YOU to my big sister Michelle. “Without you ‘Chelle’ I don’t know where I would be”. You were so helpful yesterday and I am just the luckiest little sister to have you as my ‘best friend’, I LOVE YOU!!! Also, THANK YOU to Kim, Ian and Annette for all their help! Without you guys and all the help and adjustments we made to my loaner “Wheels”, I wouldn’t be able to get around like I can now. I know it’s going to take some more practice to perfect my getting around but now I can work at it everyday at home. Someone promised me that they would take me to a big open parking lot on Saturday and Sunday so I can just have some fun getting around in a big open space without any obstacles, so I can hardly wait for this weekend!!!!!! Another THANK YOU to “all” of you (the Gaudreau clan) who helped by chipping in on my new ramp to get my wheels ‘in and out’ of the house and ‘in and out’ of the Blazer! I am really excited about my loaner wheels and look forward to getting my own new wheels in a couple of months. On a different topic, THANK YOU to Auntie Chrissy, Uncle Myles, Grandma, Auntie Jo, Uncle Tom, Auntie Ei and Uncle Mike for my great new portable DVD player!!!!!! I really like watching my “woo woo” and “George of the Jungle” movies! I know it will really come in handy on my airplane ride to DC for the conference. And another THANK YOU for everyone’s help with the “tickets”, we are so lucky to have ALL of you in our lives!!!! Today is going to be really busy with my PT this morning at 8AM and then my first aqua-therapy class at 10!!!! I can hardly wait to get into that swimming pool!! Then I’m picking up my ‘best friend’ at school and we’re going to the dentist!!! Then my friends Megan, Matthew, Mark and Linda are coming over tonight for some dinner and fun!!!! I’ll let you know tomorrow how much fun I have in that big open parking lot with my loaner “wheels”!!!! Love – Jen!
Over the weekend, we received two separate email requests for more prayers. Please say some extra prayers for our buddy "Aschdon" - SMA type 2, and our buddy "Cole" - SMA type 1. Aschdon's Mom and Dad sent us an email that he had come down with some kind of flu. Cole's Mom emailed us that Cole has come down with a cold. So please, extra prayers. May 22, 2003. Hello everyone! Just a quick update. Everything is going along fine and we are all looking forward to next week and Jen's new "wheels". "School" today for Jen at the Early Intervention Center with all her new friends their. Michelle has the day off and will be helping with baby Andrew!! On another note, Jen sends a "BIG HUG" to two very special people in her life! Good luck guys, you know who you are, and we are all thinking about and praying for you. Love, Jen. (PS - It dawned on me this morning, and I completely understand. Not that I didn't understand in the first place! But now even more so.) Good Luck. May 20, 2003. Happy Birthday to YOU, Happy Birthday to YOU, Happy Birthday dear ALEC, Happy Birthday to YOU!!!!!! A big happy birthday to our friend Alec!! Hope you are having a blast with all your friends and don't forget to share all that cake!!! Love, "Jennifer", Michelle, Sue & Jim. May 16, 2003. Hooray!!!! I’m finally getting my loaner power wheelchair!!! I can hardly wait until May 29th. Mom and Dad got the word and the 29th is the day they will be taking me to the hospital to make some minor adjustments with the loaner chair like the joystick, seat and a few other things and then back home we go so I can tool around in my driveway and neighborhood!!!!!!!! Then on June 17th I’m going back to Children’s Hospital to have my own actual chair designed and finalize the process on my keeper chair!!!!! A big thank you to all my friends that attended the Globe Northwest “Meet the Editor and Staff” forum last night. (“William”, Heidi, Tripp, Joe, Andy!) You guys rule!!!! And to those who were there is spirit too!!! (You guys rule, too!!!) And a final big thank you to Jenn and Sylvia for the wall of pictures. It sure did make an impact. Hope everyone has a great weekend and please say an extra prayer for MJ who is having surgery tomorrow, again! Good luck MJ we’re thinking of you! Love, Jen! Today is May 14, 2003
Jen is doing really well and says “HELLO” to all her “Friends”!!! A big thank you to Karen and Bill for a great Fun Run and super day. Lots of money raised to get some more families to conference! Way to go Karen and Bill and the whole “Connor Team”! Also, another big thank you to Brian and Sylvia for putting together the “3rd Annual Walk SMArt”! It looks like some serious money was raised there as well to help find that cure! It was great to spend some more time with all of Jen’s friends and meet some more new ones in person, finally! On another note, the Tripp Trapp is all put together and “in service”. Jen really likes her NEW CHAIR!! Thank you again to Jan, Bud and all their friends! We’ll have some new pictures up soon with Jen and her new chair and stander! In closing, more fundraisers right around the corner! Marshall’s ‘Kick Off Party” and “1st Annual Golf Tournament” Friday, June 13 and Sunday June 29th. Then there’s the “SMA Benefit Golf Tournament” being held at the Andover Country Club and the “18th Annual SMA Benefit Golf Tournament” being held at Sky Meadow Country Club, both on Monday July 7th. If anyone wants to join in any of the fundraisers and help a great cause, let us know we’ll get you the necessary information! Jen sends her best to everyone!
May 5, 2003
Jen is doing very well today and wanted to mention some very special people and not talk about herself!There are SO many people out there (you all know who you are) that support us in so many ways that we know we could not list all of your names. There are also friends of our family and friends (whom we don't know personally) who have taken the time to contact us and it really puts a smile on your face to know someone is thinking about Jenny!!
There is a very special young lady who lives in Ohio named Megan and she is the daughter of one of my sister's closest friends. Megan read about Jenny and SMA and wanted to donate her own hard-earned baby-sitting money to Jenny's Fund. For a young person to be so generous is truly amazing and a compliment to Mary Jane & Rick on how they have raised her. THANK YOU, MEGAN!! Hi to Colleen, too!!! Jenny hopes to give you a hug in person !!!
Please keep in your prayers a special little 3-year-old girl named Lauren who is fighting acute lymphotic leukemia (ALL) and who is doing well considering all she has been through recently. Lauren has the most beautiful smile and is a very brave little girl!
And, a big hug & THANK YOU to Jan & Bud who wrote a Christmas letter to their friends & family and told them about Jenny and asked if they would want to donate to a special fund....well, again, we were absolutely touched by their gesture and were able to purchase a special chair for Jenny because of the generosity of their family & friends. We love you!!!! April 29, 2003
Today is Jen’s second power wheelchair clinic. But first, we’ll bring you up to date. Well Thursday was the start of another low grade temp for Jen and since we already had a doctor’s appointment scheduled (a follow up to monday and tuesday cough and fever) we just brought her in. AGAIN! Her temp would come and go and finally broke Saturday night. She’ still on antibiotics but her lungs have cleared up tremendously. Still a small, small rattling going on but more from the throat then the lungs. So Sunday was the turning point. Okay, then Jen finally got her new (2nd pair) of AFO’s. Really neat design, right JEN!!! Thanks Gordon! AND, her new stander finally arrived. Thanks to Cindy for all her hard work and extra visits to the house to help us with set up and positioning. Jen is still trying to get accustomed to her new stander (a Wenselite?!? Spelling) which is on wheels and can be moved from room to room simply by rolling it along! Much easier than the old wooden one and a lot cooler!!! We’ll get some pic’s up soon so that everyone can see the new stander and Jen enjoying it. PT went well yesterday and Cindy is really trying to get Jen into the aquatic therapy soon. We all think it would be extremely beneficial for her. Okay, and today is the 2nd power wheelchair clinic with a post clinic visit by Jen to her new friend Katie’s house!!! Okay, that’s it for now and we’ll update soon on how today went!
April 24, 2003
Jen update! Well Easter brought us a fun day but was the start of another cold and a fever for Jen. Once again her left upper lobe is really rattling. There has not been any crackling or popping going on, as far as we can tell. It started Sunday night with a small cough, low temp., really sweaty feet bottoms and sweaty hands, not sure what exactly was going on but Dr. P thinks it is viral. Monday brought everything in full swing with Jen’s temperature hovering around 100 degrees. We visited Dr. P on Tuesday and got Jen on preventative antibiotics. Nothing is coming from her nose and everything is in her chest. Dr. P confirmed our lung observations by listening to her lungs as well. Jen’s appetite diminished substantially over the last couple of days but today has started to come back. Also, Jen’s fever finally broke Wednesday but she remains real junky. Chest PT is in full circulation and Jen has grown very accustomed to this so the process is a lot easier than it used to be. Her spirits are in check and she seems to be the same little happy kid, except for the reduced food intake! Back to Dr. P’s again tomorrow for a follow up to Tuesday’s appointment to make sure we’re not missing anything in terms of lung sounds.
Today brought Jen’s new stander. Medi-Rents delivered the stander after several months of waiting and numerous phone calls. So now we can return the loaner from the early intervention program. Next week brings, a visit to the physiatrist for Jen’s new AFO’s, another day at Children’s Hospital for a follow up power wheelchair clinic, and physical therapy on two days. Okay, full schedule for next week!! Should bring some new updates to the journal! April 18, 2003. Finally, two new links have been added to Jen's Link Page! One to Rachel's Website and one to Will's Website. If you get a chance and want to learn more about Rachel and Will, please feel free to check out their sites! Thank you Laura for all your hardwork! Love Jen.
April 18, 2003
Next, a huge thank you to Laurie Potter for sharing a great gift with our family!!! Thank you Laurie for the awesome Allain Family CD “Generations”. Each song has a great history or story behind it that relates to the Allain and extended Allain family tree!! The CD has a great blend of selected songs from well known artists such as John Denver, French history and ancestry, a current broadway hit “Mama Mia”, to well written and created compositions from within the Allain Family. This CD is a great piece of work. Not just from a professional/musical point of view but from a “family” perspective as well. The unity and family bond is not only apparent from the great “artwork/design” of the cover but also clearly evident in the great voices that sing! There is definitely some great talent in this family considering the fact the neither Me-mere or Pe-pere Allain were big singers, but THEY sure added their touch to this CD as well!! There is a very special song on this CD that we are sure will make everyone think of Jen. It is called “Different Drummer” and was written by someone we hope to meet, Tante Annette! She certainly is amazing person. In closing, please take some time to visit Marshall and his family at their website: www.marshallpotter.com to learn more about this great CD and how to get a copy as well as helping a great cause (LSA). www.littlesisters.org
April 18, 2003
Okay, a lot of things to update on so here we go. Jen’s wheel chair clinic went well on Tuesday April 15th. For the first hour Jen sat in the chair two times for a total of 5 to 10 minutes and did nothing but cry! Michelle on the other hand (who came with us because we believe it important that she be involved in this process as well) wanted nothing more than to sit in the chair and have fun with it! Like we said, we tried coaxing Jen into the chair for about an hour both inside and outside of the hospital. (It was a great day to be outside with the temperature hovering in the low 80’s). Other than that, Michelle was in the chair the whole time. She drove it from the 6th floor in the hospital to the outside and back in again with only ONE minor accident!!!. After we had resigned ourselves to not pushing the issue any longer and trying again at a later date, the PT (Kim) suggested that maybe just the four of us (Me, Sue, Jen & Michelle) hang out by ourselves and see if Jen might try it with no one else around. Well, we tried that and it really didn’t work but with some help from Jen’s BIG SISTER MICHELLE who then got back in the chair again, we got Jen onto Michelle’s lap and with that Jen really took to the chair!! (If you could have only seen the smile on Jen's face!) We managed to get her back out of the room with all the wheel chairs and out into the hallway for some great practice time with limited help on using the lever that controls the movement of the chair!!!! Thank you so much Michelle! You’re the best Big Sister!!!! We discussed with the PT, OT and manufacturers reps on getting a loaner to the house for Jen to practice with. We were met with some resistance from the OT, and probably rightfully so, but hopefully we can work through that and keep the ball moving in the right direction. All in all we are pleased with Jen’s ability and know that this process will take some time and some adaptations. Hopefully it will be speedy so that Jen can develop some independent mobility as opposed to the good old fashion Mom/Dad carry! In closing it was great to see our youngest child take “her first steps”!!!!!
We wanted to share this with everyone. Since the first days of learning about Jen’s diagnosis, this short quote has given us so much strength. It was given to us be Aunt Jeanne and Uncle Ed. We immediately put it up on the fridge and it has been there ever since for us to read and remember everyday! Thanks Jeanne and Ed.
“HOPE! Our Hope is that tomorrow will bring the start of a new day, that in the face of adversity, we will find a better way. Hope can overcome anything. It can conquer doubt and fear! Hope renews our spirit and wipes away our tears.”
If anyone out there gets out of this what we do on a daily basis than we have accomplished some more good!
Okay, Mom has been hard at work trying to figure out additional seating arrangements for Jen. She has found a chair called the “Tripp Trapp Chair”. You can see the chair at www.equipmentshop.com and just look under "Tripp Trapp Chair". It's a really unique design that "grows" with the child and has great positioning as there are footrests which will keep her feet straight, a belt, pommel and big tray. A physical therapist recommended it to us the other day and we think it would be great for Jen. The chair is not covered by insurance but thanks to some very generous people, who we will thank personally, Jen will be able to enjoy her new chair shortly!!
Jen is doing well and went to see the orthotics specialist yesterday for new casts. As we thought her AFO’s are not right and she needs new casts and new AFO’s. So back to the drawing board. Jen is getting ready for her big day at the wheelchair clinic on the 15th!. Or should I say, her Mom and Dad are!!! At any rate, it will be interesting to see her reaction and her abilities. If she is anything like Michelle, this kid will be able to handle it all!! Let’s keep our fingers crossed on that one. Right Laurie!?!
Okay, back to work. Five more days left until Uncle Sam’s deadline. I think Mom is going to make it as well!! We know you can MOM!
Jennifer
Today is Monday, April 07, 2003. Hello to everyone. Thank you Tante ReJeanne for all your hard work and information on various links to items that may prove to be beneficial to Jennifer. We are talking with her doctors about everything! Also, thanks Uncle Chris and Aunt Diane for your generosity in the upcoming 2nd Annual Walk & Roll-A-Thon to benefit research in Spinal Muscular Atrophy! Jennifer has shared this great news with the Walk Committee and everyone is psyched about what it will do for raising money as well as feeding hundreds of hungry walkers on September 20th, 2003!!! Thanks again!
Today Jennifer had an appointment with her physiatrist, Dr. Nemic. Her AFO’s are still causing some bad marks on the bottom of her feet. This is the third trip to the specialist for these $1,000 babies!!! So the final word from Dr. Nemic is back to the orthotic’s specialist for new casts and new AFO’s. Hopefully insurance will cover these. (They better, or heads will roll.)
Jen has been doing well. She has made friends with all sorts of new people. She met Carolyn, Katie and Will all type 2 kids, two weekends past now. She had lots of fun and got to see all their manual chairs, power chairs, standing dani’s and other equipment that each of them use on a daily basis. All the mom’s and dad’s were really helpful too. A huge thanks to Paula and Mike for opening up their house and having us over, another huge thanks to Heidi and Tripp for getting us connected with Audrey, a huge thank you to BJ and Joe on all the information and help with the rifton chair and vehicle information and finally another big thanks to Andy and Michelle for keeping our kids entertained!!!
For all of you who get the magazine “Today’s Parent”, in the May release, Laurie and Mark Potter have written an article about their son Marshall and SMA. Please take the time to read the article, (We’re sure that it is very well written.) and please pass it along to anyone you know! It is very informative and extremely moving and should be shared with as many people as possible!
Finally, Jen just wanted to say “GOOD LUCK” to Tripp on his Boston marathon run on Patriots Day!! An amazing task, good luck!! Maybe next year if the dad’s get into better shape or coerce a couple of Mom’s into running, we could get an SMA team together!!!! Who know’s????? What do you think Mom’s? Jen thinks it’s a great idea!!!!!
Love, Jen.
March 27, 2003. First of all Jen sends a big HOORAY to Michelle, Andy, Kevin & "Rachel" Rollinson!! What great news on the expectation of another addition to the family!!! Now we can hardly wait until the little one arrives! On another note, the Potter family once again is rising to the occasion, we have been talking with them about holding a motorcycle charity ride. Everything the Potter's do is in Memory of Marshall. They miss him very much and want his legacy to live on, so let's keep it alive. Visit Marshall and his family at www.marshallpotter.com. With that we will do everything in our power to make sure that Marshall's memory is not forgotten. Let's add another fundraising event to the calendar! This one is temporary - a mere thought for now; but nonetheless, the Potter's and Gaudreau's would like to make it happen. We want to host a motorcycle charity ride in Memory of Marshall, and also in memory and honor of all the other children who have fought or are fighting SMA. The ride will probably take place on Saturday, August 16 (which happens to be Marshall's birthday). After the ride, the Potter's will have a HUGE barbeque at their house for all of the bikers and their families. Interested parties can inquire at info@marshallpotter.com or by contacting us. In closing Jen's power wheelchair / mobility clinic is now rescheduled for April 15th, 2003. She is doing well and is looking forward to meeting some more new friends this weekend. (Carolyn, Will & Katie!) Love "Jennifer". March 25, 2003
Well, mom (the night owl) is finally making an entry but will keep it brief as it's late and I don't want to ramble...We are so thankful for everyone who has taken the time to stop by and read a little bit about Jenny and SMA. It's been interesting to "meet" some new people who are directly or indirectly affected by SMA but who took the time to read about Jenny and send such nice messages. Jenny is really doing well right now and is such a typical 18-month-old in many ways. Her new thing is to giggle first thing in the morning when she wakes up (mom's eyes are usually just uncrossing) AND she also giggles as she is going to sleep! We just put her swing up this weekend and to see the smile on her face was priceless.
Jim was actually home "early" tonight (when will tax season end??) and wanted to help with that wonderful part of the night known as the bedtime (one-to-two hour) ritual (yes, Michelle does take awhile to unwind!). I was thrilled that he could help me out and thought it would be great to have him get Michelle to sleep and Mom would take care of Jenny. By the middle of the ritual, with both girls crying for Mommy, we just had to laugh as I know he wanted to help but everyone was a little bit confused to have Daddy here! BUT, Dad was the first one to actually fall asleep during my bedtime story so I was encouraged to know that my stories do put some people to sleep, just not the kids!!! Right, Dad??
Please remember all of the men and women in our Armed Forces who have lost their lives in Iraq and who have made the ultimate sacrifice, and for those still fighting. Let's keep them in our thoughts and prayers and pray for them to come home safely to all of their loved ones.
Good Night...
March 22, 2003. Good morning everyone! Today is Saturday March 22, 2003. Jen had her gastro appointment on Thursday and all went well. The miralax is still working relatively well so we're going to leave her on it. The colace never worked so finally something that keeps her
TodayToday is Tuesday March 18, 2003. Sue spoke with the manufacturing company of Jen's new stander and hopefully it will arrive shortly. Jen's physical therapy went well yesterday and her physcial therapist was very pleased!! Way to go Jennifer, Mom, Dad and Michelle are so proud of you!! Other than that things are status quo. Jen sends all her love to all her fans!! Love Jen! TodayToday is Saturday, March 15th, 2003. Just a quick update. Jen is doing well and has had a great couple of days. She definitely is now only taking one nap per day and is getting bigger all the time. She brings so much happiness into our lives. On another note, Jen is really excited about the "2nd Annual Walk & Roll-A-Thon" and wants everyone to know that the walk is being held on September 20, 2003 (Saturday). She is looking for lots of supporters to walk on "Jenny's Team - 2003" so if you're interested let us. Jen sends her best to everyone!!! TodayMarch 11, 2003 Today is Tuesday March 11th. Jen is doing well! Just wanted to share a letter that Sue has written for Mother's Connection, a local area group of mom's that publishes a monthly newsletter and promotes networking and support. Here's her letter: JENNIFER’S STORY ==================== As the mother of a young child with a disabling disease, I wanted to share a little bit about our very recent experiences and the positive role our community has already played for Jennifer’s developing to her current potential. This “community” includes family, friends, neighbors, doctors and therapists who all play an important part in Jennifer’s daily life. Jennifer was diagnosed at 10-months of age in July, 2002 with Spinal Muscular Atrophy (SMA), an incurable neuromuscular (genetic) disease that affects the muscles controlling sitting, crawling, walking, swallowing and also head and neck control. We had never even heard of SMA until we voiced our concerns to her pediatrician at her 9-month checkup (she had started to lose her ability to roll over, push her head up and could bear no weight on her legs). He was alarmed at our concerns, the lack of muscle tone in her legs and also by the fact that she was unable to bear any weight on them. By chance (we feel it was actually our good fortune), he was familiar with SMA, as most doctors aren’t, and had us in Boston the next day to see a pediatric neurologist who confirmed the diagnosis within two weeks after doing several tests. The prognosis for Jennifer is uncertain, but in addition to SMA being a progressive disease attacking specific muscles, these children are also born with or develop weakened respiratory systems making them prone to multiple colds and respiratory illnesses, sometimes leading to pneumonia. It is that fact that has made SMA the leading genetic killer of children under the age of two and it is a frightening statistic. Jennifer was immediately enrolled in an early intervention program and she is working with amazing therapists from the Anne Sullivan Center in Lowell. They encourage Jennifer to use the muscles that are still strong, and teach her how to compensate for those that are weakened. She has her therapy right in our home twice weekly and has become quite attached to Donna, Cindy and Kristie! There are also parent support groups within the center and events for both parents and siblings. Jennifer will be joining a playgroup this May at the center and we think that will be great for her socialization. She watches her big sister, Michelle, at her class at My Gym and with all the music and action, I think she is ready to do her own thing! We have also become involved with The Professional Center for Child Development, in Andover, and have benefited from their services and equipment. Her therapists are pursuing both aquatic therapy and horseback riding for the spring, too. It is truly amazing to know that there are so many resources available as it becomes overwhelming at times with all of the medical and insurance issues and learning what services we are entitled to. Families of Spinal Muscular Atrophy (http://www.fsma.org has also become a very big part of our lives. The New England chapter is part of an international non-profit group that is dedicated to raising awareness, supporting families and most importantly, to raise the funds needed to fund the research needed to find a cure. My husband, Jim has just joined the Board of Directors and we have gotten involved with several local fundraisers, one of which is the “2nd Annual Walk and Roll-a-thon” to be held in September in Chelmsford (we raised over $50,000 last year!!). We have become friends with people who, sadly, have lost children to SMA but who have inspired us by turning their grief into action by helping other families cope. Jim has also had a website created about Jennifer and SMA (www:our-sma-angels.com/jennifersworld), hoping to raise awareness about this devastating disease. Jennifer is now 18-months old and is doing well! She is still able to sit unassisted on most days but has lost some strength in her arms. Jennifer has a unique bond with her big sister, Michelle, (4 ½) and to watch the two of them together is the best part of each day! The future may be uncertain as we don’t know how quickly the disease may progress, but, with the network of people in our community beside us, we know we will be ready for that next hurdle. With their guidance and support, we are confident Jennifer will be able to accomplish so much, despite her physical limitations. We have learned to focus on what Jennifer can do, and not on what she cannot do. She has truly touched all of those around her and when she smiles at you with those big blue eyes, you realize what a special angel she is! TodayMarch 8, 2003 Today is Saturday March 8th. Jen had a really good day today! Her cold is pretty much gone! She got to see her Grandma, and played all day with her big sister Michelle and cousin Amanda. Jen is really starting to get big. It's amazing to see how much she has grown in the last seven months. We want to say "THANKS" to everyone who has stopped by to visit. It is great to know that so many people are thinking of Jen and checking up to see how she is doing. In a couple more weeks Jen will be one and a half years old!!! We've come to learn to make a "BIG" deal out of little things. There are certain people who we have come to know because of this road we walk down who will never have the opportunity to do what we do. Let's keep them in our prayers as they travel on in life's journey. Okay a big goodnight to Jen, time for bed. We'll catch up soon!
TodayMarch 4, 2003 Hello everyone. Today is Tuesday March 4th, 2003. Jen had her appointment with Dr. Boyer and things went relatively well. Dr. Boyer checked Jen's lungs out pretty good and things sounded fine. Her cold hasn't settle in her chest so that is good. Dr. Boyer talked some more about a "g" tube for Jen. Still premature but wanted to discuss the issue again. So, keep up with the prayers so that Jen remains strong! Jen's routine seems to be changing. She no longer wants two naps a day, instead she has been fighting the morning one and taking an earlier afternoon one so it looks like she might be getting to one per day. Mom has been keeping up with the Chest PT and Jen has become accustomed to the process. She really doesn't fuss anymore when we do them. Michelle has really taken on the role of big sister and is Mom's biggest helper with Jen. She is an amazing big sister and Jen and Michelle have really formed a unique bond. (Uncanny) Anyway, Jen is still coughing but not as much. Her morning coughs are hard to do because there is so much mucus that has built up overnight but she still gets through it. (with some help from MOM) Okay enough for today, except one more thing. There are two families from the area that really need some prayers right now, please keep them in your prayers. As always, Jen says "Hello"!
TodayFebruary 27, 2002 Hello everyone. Today is Thursday, February 27th. A quick update on Jen. We have a Dr's appointment tomorrow with Dr. Boyer the pulmonologist at Childrens. She is really good with Jen and should be interesting to she what her second follow up assessment on Jen is with regards to lung capacity and whether she feels Jen has lost anything there. Her cough seems weaker these days and we're not sure if Dr. Boyer will order chest films or not to compare to previous x-rays. Oh well, we'll let you know what happens. Yesterday Jen started with another cold and had alot of mucus last night which kept her up. Today her nose is running and you can hear the mucus rattling when she breaths. Sue has started with chest percussions again. Other than that, everything is status quo. On another note, please keep in your prayers the Potter family. Laurie and Mark lost their son Marshall about two months ago. Shortly before Christmas and today they received a really uncalled for email from a person in their local town. We have been in contact with the Potter's and they are decent and upstanding people. This persons email condemned them for allowing Marshall to pass away. This has really upset the family. Laurie and Mark did everything possible for their son and cared for him like all other loving parents do for their children. So, please keep them in your thoughts and prayers. Finally, the 2nd Annual "Walk & Roll-A-Thon" plans have formally begun. Andy, Michelle, Kevin & "Rachel" joined us at our house along with Joanne, so that we could start helping them to plan the 2nd walk. We are really psyched to get the ball rolling on this and our goals are to: 1.) generate even more awareness about SMA, 2.) raise twice as much money as last year, & 3.)have twice as many people participate. If anyone would like to help please email us at: smjgaudre@msn.com Jennifer is really excited about the goal on raising twice as much money. Hopefully we will find a cure!!!!
TodayFebruary 20, 2003 Hello Everyone. Today is Thursday, February 20, 2003 and we wanted to start sharing Jen's website with all of you. Please feel free to sign Jen's guestbook and check out the pictures of Jen, her friends and her family! There are several links to various other websites that promote awareness and education about Spinal Muscular Atrohpy (SMA). All have been instrumental in helping us with learning and dealing with SMA and so please feel free to visit them as well. All of this has been made possible by a really super person, Laura Stants!! Without her help and commitment to everyone in the SMA community none of this would be possible so a big "THANKS" from all of us. (Jen, Michelle, Mom & Dad) Well a quick update on Jen. The last week or so has been very good. Jennifer has rebounded really well from her last cold and fortunately we managed to stay out of the hospital! Mom was really aggressive with the chest PT and nasal suctioning and this with some antibiotics managed to keep the pneumonia away. Tuesday we were supposed to get Jen to her mobility clinic at Childrens Hospital, but because of all the snow (27.5 inches in downtown Beantown) the appointment was cancelled. We aren't sure when the clinic will be rescheduled but it is looking like perhaps in another two to three weeks. All in all, Jen is doing well and she sends a big "hello" to everyone. We'll update again soon, so keep coming back to visit us!
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