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TodayHello Jenster Fans. Jen had a busy day today. First off, Jen had aqua therapy and Mom reports that Jen did very well. After aqua therapy, Jen had a quarterly follow up with Dr. Glader. Mom reports that Jen's weight has dropped since her last visit back in September. The weight drop was not dramatic but she now weighs less than what she did at her last appointment. Dr. Glader feels that perhaps her last weighing could have been slightly off and so we'll wait to see what Jen's mid-March appointment brings. Certainly not the news we had hoped for but all things considered Jen is doing well! Dr. Glader noted that Jen's curve looked slightly worse also. We’ll re-address that with Dr. Shapiro in January, perhaps another set of x-rays. Okay, Jen sends her best to all her fans.
TodayOkay, I am taking a few minutes here and updating Jen's journal. My apologies, I know it's been awhile since the last entry and I appreciate all the subtle innuendos on the lack of entries. (ha, ha… MC, MB, SO) However, life in the Gaudreau household has been chaotic to say the least. (Selling our old house, building our new house, doctor's visits, therapies, office Christmas parties, neighborhood gatherings, car repairs, car inspections,…. the list goes on!) So, first and most importantly, everyone remains healthy. Jen did have a minor cold not too long ago but with a few days of stay at home and away from school she recovered quickly and without incident. We've had a few more instances of reflux but Jen is managing all things considered. Also, back in October, Jen had another round of x-rays. The results have provided some additional insight on the progression. Jen's scoliosis has worsened slightly. Dr. Shapiro reports that her curve is now just slightly over 20 degrees and that Jen has now developed an upper compensating curve. Jen's kyphosis has also worsened (as noted from x-rays) and we are now finding that we must use her vest a lot more frequently when she is in her power chair. This is a struggle as Jen find's it very restricting. Finally, the x-ray's show sub-luxation (partial dislocation) of the hips. Fortunately neither hip is causing Jen any discomfort currently and so we remain free of corrective surgery there as well. Unfortunately, the progression of SMA will result with surgery at some point in the future but it remains our hope that we will be able to avoid this for a while longer. School is continually a great spot for Jen. She really enjoys her time there with her teachers/therapists/& friends! Upon her return home she is always full of chatter about what she did and who she saw. Last week Jen had another follow up video swallow at Children's. The results showed no further weakness or loss of ability with the mouth or throat and so this was good news. Finally, we wanted to say thank you to the entire "Jammin for Jenny" committee and all of our great neighbors and friends for all their efforts and hard work. Jennifer and her family are so fortunate for all that you have done, thank you again for everything! I will try to update again soon.
TodayJen update! Trick or treat was lots of fun. Jen wishes she could have visited all of her neighbors but she was pretty wiped out after completing the first half of Autumn Road. So she returned home, warmed up and finished the night at home with Mom. She was dressed up as Snow White and I have to say that Snow White and Cheerleader Barbie (Michelle) both looked really cool! So to all the neighbors who didn't get to see Jen, she wishes she could have visited and hopes you understand! Thank you to our special friends for the "extra" bag! eileen ;>) Michelle and Jen both really like the treats! Jen is doing well and has really settled into the school program. She really enjoys her teachers and therapists and is having lots of fun with all her new friends. Other than that, all is status quo and things are chuggin' along. Finally, Jen has a special request. Recently, Jen and her family learned of the spirit of a local amazing little man named Eric Hill. I think it would be nice to show Eric's family that his spirit is still alive and so if you can take a moment and visit his website at www.erichillfoundation.com it would be greatly appreciated. While you're there, please leave Eric and his family a note in his guestbook that you stopped by and let them know that you learned of Eric's spirit through Jennifer! Thanks!
TodayGood morning Jenster fans! Three (3) things today. 1.) WAY TO GO SOX'S!!!!!!!!!!!!!! Did anyone else see that "Angel in the Outfield"?! ;>) I know I did, you rule little man. 2.) As I've talked about in the past (and I've been meaning to mention) the Knights of Columbus (Rev. Robert Faucher Council 5162) in Hudson, NH, have taken to keeping Jen in their hearts and prayers as well as helping her out with much needed aqua therapy. Well now they have added a link to Jen's website on theirs. If you would like to learn a little more about this amazing group and their members visit their website at http://www.kofc5162.org/ and as always feel free to check out the links page and see the link to a very special friend of the Knights!! Thank you Council 5162! 3.) A huge thank you to our amazing neighbors, friends, local businesses, non-profit organizations and everyone who helped with or attended "Jammin' for Jenny". For all that you have done, nothing will ever be enough to repay all of you for your kindness and generosity. We thank you again from the bottom of our hearts. Sincerely, Jennifer - Michelle - Sue & Jim.
TodayOkay, I knew there was more people. Thank you Jill and Mike too. I'm sure there are many more and hopefully after "Jammin' for Jenny" is over, I'll be able to thank everyone. Jen sends her best to everyone and hopes everyone has a great weekend!
TodayGood morning Jen fans. Well "JAMMIN' FOR JENNY" is almost upon us. Again a huge thank you to all those who have contributed time, money, raffle items, efforts, connections and just plain old hard work. We know that the list is endless and again there is no way we could ever repay anyone for what has been done, simply because the value is immeasurable. First, the details again. "Jammin' for Jenny" (7:30 to midnight) is this Saturday (10/23) evening at the Lafayette Club in Lowell, Massachusetts on Fletcher Street. Tickets are $10 a piece and can be bought at the door or by contacting Laurie Cahill by email at: kevandlou@aol.com There will be music provided by DJ, food, cash bar, raffle, silent auction (including Patriot tickets) and lots of fun. If my understanding is correct, everything has been donated for this event planned by so many, including the location. Thank you to everyone again. Also, if any of you are early morning risers, tune into WUML (the University of Massachusetts - Lowell). WUML at 91.5 FM will be airing an approximate eight-minute segment on Jennifer and SMA. It aired this morning shortly before 7:00AM and was AWESOME, and will air again tomorrow morning between 6-8AM! Eileen WUML, Dennis and Eileen, thank you very much for talking about Jen and sharing her website and helping us raise awareness about Spinal Muscular Atrophy. Also, today a reporter from the Lowell Sun will be visiting Mom, Jen and Michelle and doing a feature story on Jennifer and SMA to be printed in Friday's paper. Additionally, right after Jammin for Jenny, they are going to return and do a follow up on Jen and the benefit. It is very difficult to put into words how much we appreciate all that is being done. Please know that all of you have made Jennifer's and our road so much easier to walk down and we are extremely grateful for EVERYTHING. Your impact on Jennifer, Michelle, Sue and I is profound. In closing today, I want to offer up some personal thank you's. If I should miss someone please let me know so that I may include them. To Linda & Mark, Laurie & Kevin, Deana & Dave, Michelle & Joe, Eileen & Joe, & anyone I've missed (I'm sure there are more) THANK YOU from the bottom of our hearts for everything. Now a quick Jen update. Jennifer is doing well. She is enjoying school and is having fun with all the stuff she does there with Miss Mo, Miss Sue, Mr. Bob and all her teachers and therapists! I know there are more but I haven't learned all the names. Thanks for all your hard work as well in helping. Other than that things are status quo. We’ve had some appointments at Children's Hospital but will update later, no problems just regular visits! All is well.
TodayWell other than with family I haven't shared my story yet. So I wanted to take a moment and post on Sunday's run. Quite honestly I still can't believe that I jogged 13.1 miles and completed the BAA 4th Annual Half Marathon. I didn't sleep much the night before and was awake at 4:00 AM. I had set my alarm for 4:30 but shut if off before it even sounded. I got up and started the morning with a cup of coffee. I nursed the first one cautiously (it was really hot) while stretching on the family room floor watching the weather channel. I managed to take in one aspirin and 2 ibuprofen with the hopes that they would dull the anticipated pain to come enough to carry me the entire 13.1 miles. Then I dawned my official race t-shirt (FSMA with a great pic of Jen) and shorts, poured a second cup of coffee and waited for my cousin to arrive and drive us into the city. He was running late (overslept his alarm) and his being late made me even more nervous, however his wit in the car also put me at ease. We arrived at the parking lot around 6:45. We met up with Paul M. and Joe K. (both SMA relations) and all straggled to Clemente Field to register and pick up our bib #'s. I managed to forget my breath rights in the car so I had to return and pick them up. I managed to get back to the Field around 7:40 only to have to visit the John again for the fourth time that morning. I'll leave the details out here........ Suffice it to say that after waiting in line at the port-o-potties for 15 minutes with the race ready to begin I had to break out of the line and find a tree. The knots in my stomach from anxiety were unbelievable. I managed to get onto the street with our group and stretch out for a few minutes before they sounded the horn and we were off. The 1/2 marathon is an out and back format. Meaning you run a route 6.55 miles out and then run the same route back to finish. I knew that the first three miles and the last three miles were relatively flat. (Some minor hills here and there but nothing killer.) Miles one, two and three were great. I enjoyed the scenery, trees - water and houses as well. Mile 4 and 4 1/2 were hillier but still relatively unchallenging. As we rounded the rotary from 4 1/2 the road started it's incline. From 4 1/2 to 5 1/2 was one long upward run. It just seemed to go on and on and on. Fortunately my body was feeling well and my mind was focusing on locating my cousin on his return. (He runs much faster than me and was ahead) As I was approaching the 5 mile mark I passed my cousin on his decent. I called his name and we high fived each other. (When we spoke on Monday he said I looked pretty good going up the hill.....not winded, good form, and steady pace.) I felt the same as he described. I entered the Franklin Park Zoo (the turning point) feeling a little tapped for strength after making the upward climb but my mind was in good spirits knowing I had a nice 1 mile decent to enjoy. After winding through the zoo for a little I exited the zoo and started back toward the finish. I hit the 6 1/2 mile mark after exiting the zoo and started down the hill. While coming up I noted a head wind and the thought had crossed my mind that I would also have a nice tail wind going down. Making that part of the course really comfortable. In the short time I was in the zoo the wind changed direction and I had more headwind descending. Fortunately it was a downhill run and the breeze kept me cool. I hit the 7 mile mark on my decent and still felt well. As the course leveled out around mile 8 I started to feel a little exhausted and was hoping to find the hidden reserves I noted on previous long runs. The reserves came but went really fast. As I finished mile 9 back near the Jamaica pond on the VFW parkway I was thinking about how in the hell I would finish 4 more miles. I was soaking wet with sweat, every article of clothing including my socks were drenched. Somehow I summoned up enough energy to get to 10, and somewhere shortly after the tenth mile I put in a request to a heavenly angel to carry my feet, push my legs and keep my breathing in check. He obliged and was there, along with my earth angel Jen too. Somehow my body went onto auto pilot and I remember looking down at my feet and legs, just thinking "how are they moving?" "something is making them move but I'm not consciously doing it!" Way to go little man! Mile 11 was long and mile 12 felt like three miles in and of itself, all the while I continued to move not being able to comprehend how I was physically doing it. As I came around the back side of the Field, I could hear the announcer and cheering. I made the last corner and headed down the remaining 1/2 mile stretch to happen upon Michelle, Jen, Sue, my cousins wife Dorothea, my cousins daughter Danielle, my brother Ed, his two kids Elizabeth and Patrick and many people cheering me on. I crossed the finish line in 2 hours 45 minutes. A 12:45 minute mile. A pace slower than I had hoped, but still very rewarding for me. Still in disbelief that I completed the course, I turned in my championchip (the clip on my sneaker that tracks your official time) for my medal and draped my medal around my neck. The clan caught up with me in the field, I became emotional seeing Jen and thinking about my prayers to Marsh, and had some difficulty in catching my breath. Of course Sue became concerned and sent me off to the medical tent to be checked out. I was examined at the medical tent. The whole time I kept stating that I was perfectly fine and wanted to go home (no one listened). I explained continuously that I was slightly emotional and that was causing my shortness of breath (no one listened, again!). They made me sit down and checked my blood pressure and listened to my lungs and heart. They decided they wanted me to have an EKG. I didn't want to (no one listened) but I obliged after a couple of wide eye'd glances from my loving wife. I was requested to remove my t-shirt so the EMT's could affix those "sticky pads" to my chest (and quite a few jokes about shaving my chest and ripping chest hairs off were made!!!). In doing so, I noticed that my white t-shirt was no longer white and that it had two large bright red streaks down the front. (For those non-runners, when long distance runners wear cotton t-shirts the chaffing on your breasts can irritate the nipples causing them to bleed) Somewhere along the way this had occurred and I never even noticed the pain or the blood, my brother had referred to me as a "bloody mess" noting it as I passed them near the finish line. The EKG was performed and low and behold the doctors turned their backs and began conversing with Sue. I looked at the nurse and jokingly noted that "this isn't good!" Of course the doctors noticed an irregular line on the EKG. In short after another couple of loving glances from my wife (and again against my will) I was graciously loaded up onto a stretcher, brought to an ambulance and whisked away to the B.I. Deaconess hospital with lights flashing and siren wailing in the longwood medical district. There I spent the remainder of the day and early evening having blood drawn, EKG's taken, and awaiting for my local hospital to locate and fax over an old prior EKG that was done several years ago to confirm that my EKG reading (when compared to the general population is "abnormal") was in fact normal for me. Of course after the BI received the old faxed EKG, this was proven to be the case. I guess in hind sight it was better to be safe than sorry but in all honesty the shortness of breath was from my being emotional. No one believed me but this way I didn't worry anyone. And in the end, I spent the day in a personal care unit at the hospital, visited by Sue, Michelle and Jen for awhile and then watched the NE Patriots completely uninterrupted, all while being pampered by a very cute nurse I might add....! Thanks Abby!!! I was discharged around 8PM, Sue arrived around 9 to pick me up and we returned home around 10PM. I have been on a high since the moment I crossed the finish line. Yes, I did this for all those affected by SMA, not only Jen. Which in short makes the reward just that much greater. And finally, I know my prayer request was answered. Thanks little man!
TodayGood morning Jenny Jenster Fans. Just wanted to provide a quick update on Jen. Jen's schooling is going well, she loves her teachers and is enjoying her days there! She talks endlessly about all her friends there, and how Michelle is in the same building but just in another room. Yesterday Jen made a crown in school and she wore it the whole day, all around town. To the post office, to the bracing clinic, and to Grandma's house. Jen's new AFO's had to be fixed yesterday. Thanks to Gordon for doing such a great job! Onto the Zantac and reflux issue. So far (knock on wood) the reflux Jen was experiencing is under control. It would appear that the zantac is doing the trick, let's hope it continues to do so. All in all Jen is doing well. So with that, Jen wishes everyone a happy and safe Columbus Day weekend! Enjoy!
TodayHEAVEN'S VERY SPECIAL CHILD ----- A meeting was held far from earth, "It's time again for another birth," Said the angels to the Lord above. "This special child will need much love." "Her progress may seem very slow, Accomplishments she may not show. And she'll require extra care, From the folks she'll meet down there." "She may not run or jump or play, Her thoughts at times may seem quite far away, In many ways she won't adapt, And she'll be known as handicapped." "So let's be careful where she's sent, We want her life to be content; Please, Lord. Find the parents who, Will do this special job for you." "They will not realize right away, The leading role they are asked to play; But with this child sent from above, Comes stronger faith and richer love." "So they'll know the privilege given, In caring for this gift from heaven; Their precious charge, so meek and mild, Is heaven's very special child."
TodayWe want to say thank you to all of our good friends for your continued support and contributions to our fight for a cure. To the following: The Dufour Family, The Cahill Family, The Currie Family, The Miller Family, The O'Neil Family, The Keane Family, The Sarazen Family & Friends, The Lynch and Lynch extended Family, The Shamberg Family and Friends, The Boulter Family and Friends, The Flynn Family & Friends, The Robinson Family, The Bailey Family, The Venezia Family, The Barrett Family, The Potter Family, The Rollinson Family, The Norton Family, The Farrell Family, The Pecora Family, The Mirabile Family and The Dunn Family…..(and to anyone else whom I've missed, sorry…) THANK YOU!!! Your hard work, contributions and participation in the comedy night are greatly appreciated. I still do not have word on the total amount raised but as soon as I do, I will post it here. Thanks again, and we hope that you all had a good time with lots of laughs. Also, a big thank you to all of our donors who generously contributed items for the raffle and silent auction. And one more quick "thank you" to Grammie & Papa for watching the girls! Okay, on to a quick Jen update. Jen's reflux seems better this week. Perhaps the Zantac is working, let's keep our fingers crossed. Her eating has been slightly off this week and more so over the last couple of days. But all in all Jen is doing well. Jen started her IEP this week. The first day was cake. Of course, only because Mom was allowed to stay and was pretty much right beside her the whole time. Her second day was a bit different and even though Mom was still there in the room, she wasn't right next to Jen and so Jen was a little out of sorts with that. Mom reports that Jen's classroom seems more open now than it did when we were meeting with the board on developing her IEP. Now for Michelle, school is going really well. She is enjoying her soccer again this fall. Also, Michelle is now taking gymnastics one night a week and jazz dance one day a week. So between both Jen and Michelle, Mom is kept pretty busy. Throw in a healthy dose of her extra-curricular activities, like laundry, cleaning, paying the bills, and cooking and her day is actually quite full! She is amazing. I also wanted to end with a couple more things here. First, "JAMMIN for JENNY" is fast approaching. Anyone who would like to attend, please let us know. We'll hitch you up and get you there. (Peg, I'm forwarding along a flyer that was passed out and like we talked about last night! Thanks for all that you do!) The date for the event is October 23rd, and the event will be held at the Lafayette Club in Lowell, MA. I'll update on this again soon and as we get closer. To Eileen D., what do we say…… You are an amazing person. We can't thank you enough for what you've done. I have been meaning to say "Thank You" for a couple of weeks now but have not had the time. So even though it's late in being said, please know that your actions are greatly appreciated. To Don & Kathy Norton. If you're checking in, thank you for having us over to meet the entire Norton family. Michelle had a blast playing with Kaitlyn and Karen. And of course Jen continues to mention her new friend Owen. We hope Owen is benefiting from the power standing dani and is tearing up the streets and driveway with his new wheels. It was another amazing moment for us to see another child with SMA take his first "steps". And with that, Jen wishes everyone a safe and fun weekend.
TodayA request for prayers please. I have just learned that Fran Keane is ill. Fran is the wife of Paul, Mom to Virginia and Grandma to Tanya and Chelsea. The entire Keane family has been so supportive of Jen. Please add Fran to your prayers so that she gets well soon. Fran, Paul and family, we saying some extra prayers for you.
TodayHappy Birthday to you, happy birthday to you, happy birthday dear Jennifer, HAPPY BIRTHDAY TO YOU!!!! Three (3) years old!!! I'm sure that anyone could guess what our wish is for you..... We hope you have a great birthday. We love you so much. Mom, Michelle and Dad!
TodayToday's Great News! Today, Jen had her follow up appointment with Dr. Glader. It has been approximately three months since her last visit and at that visit there was a lot of talk about g-tube due to lack of weight gain and exponentially dropping off the weight/height charts. At that time everyone agreed to hold off on any further discussion about g-tube being placed and allow ourselves the opportunity through oral feeds to try and achieve weight gain until the next appointment. Well, the results are in and Jen (along with her parents and Dr. Glader) are very glad to announce that Jennifer has gained a full pound and a half since her last appointment in three short months! After Dr. Glader plotted Jen's weight on the charts, it was SO cool to visually see the upswing from this last appointment compared to downswing on the diagram from three, six, nine and twelvemonths prior. It has been work for all of us, and quite honestly mostly for Jen but we are very very happy. I also believe that there are a few very special angels watching over her and taking care of things as well! On another note and simply to ask for continued prayers, over the last three months Jen has started to experience episodes of vomiting. Dr. Glader believes that what Jen is experiencing is gastroesophageal reflux. In the last days alone she has had three episodes. At any rate, we are hoping that with the prescribed zantac from Dr. Glader, that the vomiting/reflux will subside and/or disappear entirely. If it's not reflux than we'll have to figure out what it is. A couple of thoughts were discussed but we are starting out with the most common root of the cause as typically seen in these cases. At any rate, I wanted to share the news of Jen's gains and hope that you find it as uplifting as we do. Jen will continue to work hard to keep moving forward and certainly all your prayers and thoughts have been extremely helpful. Thanks and we hope this puts a smile on your face for the rest of the day like it has done for us! Onto one more thing, thank you to a very good friend for sending me this quote. It was very helpful with regards to a separate issue and is greatly appreciated. “It is not those who can inflict the most, but those that can suffer the most who will conquer.” ~Terence MacSwiney Thanks MB!
Today"It is not the critic who counts, nor the man who points out how the strong man stumbled, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood; who strives valiantly; who errs and comes short again and again; who knows great enthusiasms, great devotions; who spends himself in a worthy cause; who, at the best, knows in the end the triumph of high achievement, and who, at the worst, if he fails, at least fails while daring greatly, so that his place shall never be with those timid souls who know neither victory nor defeat."
TodayThe last several weeks have been crazy. Work is like tax season all over again, and I suppose all things considered that "that" is a good thing. Over the last couple of weeks we have been experiencing some difficulties with secondary insurance. Primarily with their system, billing, authorizations for aqua therapy and the like. Well a couple of days ago brought confirmation that things have been corrected, at least from an authorization point of view. Kelly from NE Rehab called and secondary insurance has now denied any additional visits for Jen for aqua therapy on the basis that no significant improvement had been made at Jen's last visit. Don't even ask, I don't want to go down that road……………..simply a great loop hole for insurance providers to scape goat having to be responsible for a service they offer under an umbrella of "b******t" THAT WE PAY FOR no less. Which basically means that they now have until February 28th of 2005 before having to pay for, at a minimum of, an additional 8 visits under the new fiscal year of Jen's therapies. So yesterday brought about an on-slaught of long and torturous phone calls, automated phone systems, being on hold, wrong department, wrong person let me transfer you and VOICE MAILS with no return calls! Now we are faced with the the cost of paying for aqua therapy out of pocket (as it stands right now $120 per visit) and thankfully through the generosity of many the cost can be covered for a while :o) and going to appeals (WHICH WE ARE DOING) with the secondary insurance provider. I have requested an appeal application (of course) to be filled out and sent in. Then they have 45 days upon receipt (of course) to provide us with an appeal date. So we'll keep you posted. On another note, Jen is doing well all things considered. Her new AFO's have arrived, hopefully that will help with the discomfort Jen has complained about. The weekend was great. We had company from out of state (Nikki and Clell) from Ohio. It was great to see them and spend some time together. Hopefully they are now enjoying their Harley ride up the east coast into Maine and we are looking forward to seeing them again over the upcoming weekend before they return home. Jen (and Michelle) had a blast playing baseball and tag with both Nikki and Clell and what awesome sports they were for taking time with all the kids. We promise to get out to Ohio soon guys. That's all for today.
TodayGood morning Jenster fans. Just wanted to thank everyone for taking some time and remembering all those who have lost their battle to SMA and remembering all those who are still fighting SMA today, by lighting a candle and joining us in the first annual candle lighting event on August 7th. A special thank you to Eileen, Joe, Paul, Patrick and Matthew DuFour for joining us at the candle-lighting in Haverhill on Saturday night, your support is greatly appreciated. Also, as we drove through the neighborhood on our return home Saturday night, it was great to see the candles on the steps! Thanks! Laurie and Mark, thanks for stopping by and having dinner with us on Saturday night. Michelle and Jen had a blast and Mom and Dad had a great time too. We are looking forward to the golf tournament on Friday, August 13th. If anyone is interested, the Marshall Potter Memorial Golf Tournament still has openings. Anyone interested in golfing can reach Laurie and Mark via Marshall’s website: www.marshallpotter.com. The tournament starts at 1:00PM with registration at 12:00. Cost is $100 per golfer. And now onto Jen info. Jen is doing well. She had a small cough and some congestion two weekends ago but managed to shake it off relatively quick. Jen is anticipating her new AFO’s this week. Hippo therapy will involve a new therapist, since Katie is no longer with Ironside. And in short everything else is status quo. Have a great day! Jen sends her best.
TodayOperation "Wheelchair Repair" COMPLETE! Yesterday after a few phone calls and some talk, the repair technician told us that they re-ordered the RIGHT cable and that the manufacturer agreed to overnighting it. We received a phone call today at 1PM that Jen's wheelchair was fixed! Dad picked up the wheelchair this afternoon and it is in perfect working order. The bill for a simple cable repair, $1,200.00, hopefully insurance will cover all of it. I'm sure Jen will be tooling around the house tonight!! Gym camp today was fun and Michelle and cousin Amanda had a great time. That's it for today.
TodayWell last week was crazy with work but for a few moments this morning I've managed to put an update together for today. Jen had another appointment with Gordon last week for new AFO's. (Ankle Foot Orthotics) Her old "long's" are too small and so they are hurting her feet both in the stander and with just wearing them. Yes, she's getting bigger. I’m not sure about heavier but definitely taller and bigger. Hopefully we'll have her new AFO's this week and Jen will be back in the race. Also, Jen's aqua therapy last week was changed to Friday evening at 5:00. Katie (Jen's aqua therapist) had a previous engagement at the originally scheduled time and so Jen went late during the week. Today brings "hippo" therapy and then this week aqua therapy will be on Wednesday with a substitute since Katie will be gone. As always, Kristie and Donna will be visiting Jen on their regularly scheduled days for PT and OT. The girls had lots of fun this weekend at cousin Amanda's birthday party. They went bowling and played in the air-bounce Castle at the party. They had birthday cake and ice cream and spent lots of time with their cousins Amanda, Kevin and Ryan. Dad dropped off the wheelchair this morning but things don't look so good, apparently they ordered the WRONG cable. Hopefully they have a spare in inventory or else we could be another two to three weeks without "wheels". Three quick updates. 1.) Seats for the comedy night are now available. Simply mail a check made payable to "FSMA" for the number of seats you would like to reserve ($30. per person) to: Anna Lynch, Attn: FSMA, 73 Orchard Lane, Melrose, MA. 02176. If you would like to know that your check was received simply provide your email address or tel. No. and we'll get back to you. Also, if you have a group going, let us know who's in the group and we will try to accommodate seating arrangements accordingly. However, NO PROMISES, we'll just try to do our best 2.) August 7th is the "Candle-Lighting". Please feel free to join us. People will start gathering at 7:00 PM in Haverhill, MA. at St. John the Baptist Church. At 7:40 Dena and Eric Miller will open the event with a Greeting Announcement, followed by Family Introductions and a non-denominational prayer led by Father Keith Leblanc. At 8:00 candles will be lit and at 8:10 the Mayor of Haverhill, the district congressman and state senator will read a formal Proclamation. Closing will be at 8:30PM. Another point of interest is that there will be local media coverage (print). And finally, 3.) NEW PICTURES IN THE PHOTO GALLERY. Check them out. Great pic's of Tanya, Chelsea, Michelle & Jen!!!!
TodayOkay, I'm posting this early so that everyone has a chance to read about it, mark their calendars and spread the word. I will post it again as we approach the date August 7th, 2004. The Slavik Family from Florida (who recently lost their daughter Jessica to SMA about two month ago) came up with this idea and many SMA organizations have adopted it. Since August is SMA Awareness month, the Slavik Family thought it would be a great idea to create an annual candle-lighting event during the month of August in order to honor all SMA children. The event is modeled after the world-wide candle-lighting through Compassionate Friends and will be held on Saturday, August 7th, 2004 at 8 PM (in your own time zone). At 8 PM, you can light a candle or candles in a prominent location (front windows, on your doorstep, at the edge of the driveway) to honor all those living with SMA and the memory of those who have lost their battle to SMA. Please feel free to pass this information about the candle lighting to others you think would be interested. On the same note, the Miller family from Haverhill whose son Joe was recently diagnosed has decided to hold a vigil in Haverhill. They are expecting a rather large turnout and are anticipating media coverage from local papers. As the exact details become available I will add them to the journal in case anyone is interested in attending. Please, if you are lighting a candle/candles, leave them lit for an extended period of time. We may be attending the vigil and it would be great to get a chance to see your candles burning in the front windows, doorsteps or driveway when we return. Okay, onto Jen. Still no word from the wheelchair company, looks like another phone call will have to be made. Hippo therapy went well yesterday, and then it was off to get a hair cut. Today is physical therapy and then off to Grandma's for a quick visit. Michelle and cousin Amanda had a great time at Gym Camp yesterday. Michelle almost has a round-off perfected. Way to go Chelly Belly. Take care and have a great day.
TodayGood morning Jenster fans! This weekend was lots of fun and it was great to spend some time with so many friends. First on Saturday, Jen and Michelle had a great time hanging out with their friends TJ, Shauna & Lexi. It was good to have everyone over for a bite to eat and a good time, thanks Joe and Michelle. Also, Jen says thank you to Joe C. for trying to fix her wheelchair!!! Then on Sunday morning we went to church and ran into our good friends Eileen, Paul, Patrick and Matthew. Hey, did we miss somebody?????? Where's Joe?????? Oh yeah, Joe D. went to church Saturday afternoon and then to Scola's for dinner with Eileen only to end up with some flies in his scotch! Hopefully the food was okay? Then we returned home and had some more fun and good times with our good friends Paul, Fran, Virginia, Tanya and Chelsea. Jen and Michelle (and Mom and Dad) finally got the chance to meet Fran, Virginia, Tanya and Chelsea in person and so now they can put faces with names. To Fran, thank you very much for the Angel. She's perfect and will watch over all of us. Virginia, Tanya and Chelsea thank you so much for the great gifts Jen and Michelle are having lots of fun with them and sincerely appreciate the generosity. Virginia we await anxiously the pictures of the girls all-together. We're certain they came out great! Tanya, we hope you made it to work safely and it was an honor to have you over to our house. Remain strong. For those of you who don't know, Tanya is Paul's granddaughter who was diagnosed as a baby with Benign Congenital Hypotonia. Even though it is not a progressive disease it has taken a toll on Tanya physically and is a continuous struggle. Chelsea, keep on working hard at everything you do. You are an amazing little girl. (Keep up with swimming, cheerleading, and all your sports!) Michelle and Jen had a blast playing with both of you. And lastly, Paul thank you for sharing your family with us. I'm certain you are extremely proud of them. (And you should be, they're great!) We had a great time meeting all of you and look forward to seeing all of you again. And then we had dinner with friends on Sunday night. Chris and Brenda it was great seeing you guys and the girls had lots of fun with the kids. We got home around 9PM and the girls conked out. Today Jen has Hippo-therapy and looks forward to riding "Tully". Then Michelle and Jen will pick up cousin Amanda and then it's home for the rest of the day. In closing, if you noticed up above, Jen had a minor incident with her power wheelchair. About a week and a half ago, the cable came loose from its post on the back of the chair. Unfortunately as Jen was driving along the cable got caught up in the wheel and the entire wire assembly was pulled right out of the joystick. So, in short, Jen is without wheels once again. It looks like another whole week before we are repaired. That's all for today!
TodayHi Jenny Jenster fans. It being Friday, just wanted to update on the week and a few other items of interest. Jen had all of her therapies this week, OT - PT -Aqua- and Hippo. I wonder if you can make a word out of those?!?! At any rate, all is well and to add to the running around Michelle and her cousin Amanda had Gym Camp together so Amanda spent a couple of nights with us. Michelle and Jen had a good week and are looking forward to the weekend and hanging out with some friends ;>). Paul, Fran, Virginia and her daughter will be over on Sunday and then another commitment in the evening. It will be a full but fun weekend. Well, some really amazing news. Some of our neighbors have gotten together and decided to hold a fund-raiser for Jen. A couple of weeks ago we were approached by these neighbors, Michelle & Joe, Deana & Dave, Laurie & Kevin, and Linda & Mark and they told us about their thoughts in connection with this fund-raiser. Well it is really coming to fruition and we have learned that it is going to be called "JAMMIN' for JENNY". Cool event name (by the way) you guys. They have selected a location in Lowell (The Lafayette Club, I believe?!?) and have a DJ, it will be held on October 23rd, in the evening. I'm sure the details are much greater than what I'm posting here but since Sue and I can be like ships passing in the night and with Sue knowing more than I about all of this, I just haven't gotten the full update. As we get closer (and I learn more) I'll be sure to add to the journal. Thank you to all of you for your help and hardwork. Anyone who wants to learn more about JAMMIN for JENNY give us a holler. Jen wishes everyone a great and safe weekend. Take care. PS - for details on the COMEDY NIGHT, SCROLL DOWN TO THE JULY 14TH JOURNAL ENTRIES.
TodayPS - We have flyers ready to put up so if anyone would like some for work or friends. HOLLER!
TodayOkay seating is now open for the Comedy Night and so here are the details. Information is a follows: Thursday, September 23rd, at Giggles Comedy Club / Prince Pizza Restaurant on Route 1 in Saugus, MA. Doors open at 6:00 PM. The cost per person is $30 and seating is limited to the first 160 people. If you, or a group of you, are interested in attending, please mail a check made payable to FAMILIES OF SMA in the appropriate dollar amount for the number of seats you would like to reserve/pay for to: MS. ANNA LYNCH, ATTN: FSMA, 73 ORCHARD LANE, MELROSE, MA. 02176. Please provide Anna (Sue's Mom) with each name of the person / persons attending. ADVANCE seating is required and so make sure you get your seats reserved early. (I'm pretty sure we'll sell out fast.) Instead of mailing out tickets, Anna will create a master registration form with everyone's name and all you will need to do is check in by name at the event. (This will save $$$ for stamps) If you would like confirmation that your payment and request for seats was received just ask us to send you an email, and we'll shoot one off to you. As I mentioned previously, the night will include a raffle, a silent auction and a 50/50 event; all you can eat pizza with a cash bar for drinks and special order menu items should you choose and three professional comedians for a great night of fun and laughs. Any questions just email us. Thanks!
TodayGood morning. Well, as promised, over the course of the last week or so Mom and Jen ran into teacher Bob (the PT at school) and good news, it would appear that the four individuals who were terminated from the school who would be integral to Jen's IEP were all rehired! So that's good news. Also, the pulmonologist interpreted the results from Jen's sleep study and things look good. The results were, as expected, good and the pulmonologist said that the lower dips in O2 sats were very infrequent and normal and that overall Jen appeared fine during the night time hours! More good news! Our weekend was great and we had a blast at the Robinson's on Saturday. Thanks Sue, Frank and the kids for including us and Auntie Jo you have great friends. And Tom, Heidi and Braydon it was great to get together for dinner last night. Well there's a lot going on but we'll update on that later, just know that to all those who are "Jammin" we are very appreciative and look forward to this whole thing. Jen is very lucky, and so are we. Thanks!
TodayJuly 8, 2004. We are very happy to share good news on this day (July 8th) on behalf of Laurie and Mark Potter. Mark and Laurie are expecting the birth of their second child. The last 18 months have been extremely difficult for them with the loss of their first child and son, Marshall, to Type I SMA, two rounds of IVF (One donor and One PGD), and a miscarriage. And so, with the public announcement to many (on the message boards at FSMA and SMA Support) we only find it fitting to be able to share the news with all of the Jenny Jenster fans out there that Laurie and Mark are expecting an SMA free baby. So if you are reading this, we hope you will send Mark and Laurie an email congratulating them on the announcement of the great news. You can visit ^Marhsall's^ website at www.marshallpotter.com and contact them from there or email them at frosty4@gis.net directly. So for today, two years now. I remember back a while ago when Jen's website was first set up through "our-sma-angels", and how her name was on the bottom of the list of kids with SMA. How I prayed that her's would be the last and that we would see no more names added. Then there was one, and I thought, surely that will be the last one. Then there were two, okay it'll stop soon. Then three and more and more and more….. Now when I return to the main site with all our kids, the list goes on…… There's Jimmy, Skyler, Mary Claire, Alexander, Christina, Abbie, Katelyn, Sierra, Ryan, Gilly, Glenn, Elizabeth, Kyleigh, Angeleena, Linnea, Tahj, Ava-Isabel and Ryan. I have come to learn of many more kids who are not at that list as well. Benjamin, Abigail, Sean, Nathan, Owen, Katherine, Allison, Owen and Joe. I'm certain that there are more but there names and faces I have not come to learn. But the pain and suffering is real. Two years now since being diagnosed. Are we any closer to a cure? I have to believe yes. Not because someone would logically think that if I said no that everything we have done over the last two years was pointless, but because I sincerely believe that WE ARE closer. I'm not certain how much closer but I know we are. Researchers continue to push the envelope, families are fighting harder and doctors are doing everything they possibly can for all our kids. We've come a long way. I often imagine/visualize a lab, and someone accidentally knocks over one bottle of something into another bottle of something else and through some fate of accident it's found…. Kind of funny and somewhat bizarre and not that it will happen that way but I think about it like that sometimes. I guess it's the element of you just never know. Certainly that's a far-fetched reality but stranger things have happened. I also wonder about the day a cure is found. How will we learn of this development? Where will we be? All that aside I know that there are still constants in my life. I know that Jennifer's advocates are fighting harder and that Michelle and Jen continue to develop a bond like no other. I can't even begin to imagine my life without any of my family. I wouldn't change a single thing, and I mean that honestly. We've come to know Jen as our child who doesn't walk and isn't very strong but Jen is Jen. Kind of like how Michelle is Michelle. I'm not saying I wouldn't want a cure to be found because I desperately do, but even if one isn't found Jen has brought so much joy and happiness into our lifes in her own unique way and will continue to do so as long as God will's her with us, that her being any different than the Jen we've come to know would be difficult, I think….. Over the last year, Jen has really started to develop psychologically. She is very cognizant of her differences. She still struggles with being in her power wheelchair around not so familiar and even some very familiar faces. She can really push Michelle's buttons and make her mad. Michelle being the controller doesn't tolerate Jen very well when Jen decides to ignore her. Too funny for words but it literally pushes Michelle over the edge. Sue is still amazing; she handles all of the day to day in her own methodical madness. (Gotta love post it notes, and for anyone looking for a stock tip BUY 3M!) You're sure to get rich! She continues to truck the kids here and there, doctor's appointments, dance lessons, therapies, swimming lessons, you name it. She has learned to master the art of getting a 250 pound power wheelchair in and out of the back of her Blazer without damage. (To the chair, the Blazer or herself!!!!!) No she doesn't lift it in and out, but unfolding the portable tri-fold ramp that weighs 80 pounds and which needs to be hoisted in and out can be a difficult task. Originally it was a DAD only task, reserved solely for my own privilege, now shared by the both of us. Besides the power wheelchair, we've added some new equipment to our inventory as well this year. Jen is now using a cough machine to help her cough more effectively and also for respiratory or pulmonary therapy as well. It is important to keep Jen's lungs expanded and full and the cough machine on a regular basis helps us with that. We've added Jen's TLSO, not such a big hit with Jen but due to the developing scoliosis and kyphosis a medical necessity. This year brings us much closer to g-tube surgery for Jen as well. On some levels we are very accepting and ready for it and know that it will be very beneficial for Jen. Yet, there are potential pitfalls with it to. We pray that those are avoided and in the end it represents another way this disease continues it's torment on Jen's body BUT NOT on her SPIRIT. I'm more than certain that she will continue to smile and be happy even with another accommodation she must make and so we accept it for what it is. Yep another year gone by… A good one, a fun one, a fast one, but a BLESSING. In closing I want to say thank you to all our dedicated Jen Fans, who make writing in this journal a pleasure. I enjoy hearing from all of you and learning that you've taken time, again and again, to stop in and catch up on what is going on in Jen's life to see how she's doing (and ours too). I want to say thank you to all her family (Aunts, Uncles, In-Laws, Grandparents, Cousins) for all you do as well. Thank you to our SMA family for your continued and unending support. To our very good friends Sean and Michelle, for bringing Paul, Fran and Virginia into Jen and our lives, (not to mention all that you do for us as well) Thank you. To Paul & Fran Keane and their entire family thank you for all that you have done as well. To the Knights of Columbus and St. John's Parish for their generosity, thank you. To all our neighbors for the continuous support and knowledge of safety that you bring into our lives. (Far too many of you to name specifically) To all our friends for your unending thoughts, prayers, support and contact, thanks! To the Jenny Jenster Fan Club Co-Presidents, Laurie and Mark, we are truly lucky for the both of you and Jen's guardian angel Marshall. Please know that if I could list all the names to thank I would but that is simply impossible, there are just to many to do so. So thank you to all of you, named and unnamed!!!
TodayTuesday, July 6th 2004. Jen says hello to all her fans! She had a great 4th and was able to spend some time with all her VT cousins. Quick update, Jen has changed the picture on the front page of her website and has added a whole new page of pictures in the photo gallery, "Me & My Family - 9". Lots of things to update on (all good) but they will have to wait until tomorrow, Mom and Dad have a bunch of things to do today. Okay Jen hopes that everyone had a great 4th of July. Love, Jen. TodayJune 26, 2004. Woo Hoo, Woo Hoo, Woo Hoo..... Pee Pee's on the Potty, two times today. Way to go Jenny Jenster. TodayJune 21, 2004. We just returned from the annual Families of SMA conference and attending was very beneficial. Research continues to move forward. Like all families sometimes it feels like nothing has been accomplished but it is clear that hopeful gains have been made. With the uncovering of the SMN2 gene, which in short appears to perform similar to the SMN1 gene, researchers are hoping to be able to either make the SMN2 work harder to compensate for the deletion of the SMN1 or copies of the SMN2 gene to increase them and have more working. Some of this probably sounds foreign to you but in short it is kind of like "manipulation" or "splicing" of the SMN2 gene. Even though no significant grounds appear to be uncovered there have been gains and the progress is positive and hopeful. Additionally, clinical trials are well underway with various drugs. Some of the parents of children who are in the trials have expressed small gains while others have not noticed any changes at all. This could be a function of age of child and progression of the disease or simply nothing. No one is certain, but to hear families talking about the trials and the trials themselves are both steps forward in the right direction. So hope is still alive and well. Of course there also comes the realization that the cure is still in the distance and so we must continue to fight and make things happen. We saw many familiar faces and met some new ones as well. It was great to see all of the New England families and William, good luck on Thursday at the Red Sox Game meeting Nomar and Trot. Any Red Sox fans, keep your eyes open if your watching the game on Thursday afternoon at 1PM. One of our local heroes William M. - SMA II, will be attending the game and meeting some of the players. His name will be flashed on the Jumbo Tron so have fun William and we'll keep our eyes open. Also, please keep another newly diagnosed family in your prayers. Their 22 month old was just diagnosed last week on Tuesday or Wednesday. I have been in contact with the Mom and they are struggling with all of this. They also have an 8 month old who currently is not exhibiting any of the symptoms but could very well be affected by the disease and two other older siblings who have not displayed any symptoms and more than likely are unaffected. As I learn more I'll keep everyone posted. Jen sends a big thank you to Aunt Dora and Uncle Dan, for letting her swim in their pool yesterday and to Grandma for letting her cruise in her wheel chair all through her house! Jen's IEP on Wednesday went well. The plan was thoroughly developed and even though evaluations performed by the school team were off, it would appear that they all have Jen's best interest at heart. The plan referenced continuous one to one coverage for Jen, or basically continuous adult supervision due to overall muscle weakness. The meeting itself was about three hours long, and we also spent some time before the meeting with Jen's PT from early intervention, needless to say Wednesday was very tiring and both Mom and Dad were beat after the meeting. The IEP was revised for many things due to some shortfalls in the earlier evaluations performed by speech, OT and PT from the school system but the plan was changed and now we must review it once again to make sure it represents what our final expectations are. More work to be done. Also, the group from the school involved in Jen's IEP was comprised of 5 individuals. After the meeting was finished we were informed that 4 of the 5 individuals from that group had all received pink slips or termination notices and possibly would not be there in the fall when Jen starts her program. Everything is still up in the air, so we will not know who or how many individuals will be assisting Jen next fall. Michelle had her last soccer game on Sunday and all the kids were excited about getting their trophies. She is looking forward to trying something different. She keeps talking about baseball, so maybe she'll do that. Or who knows, maybe by then she'll want to play soccer. Enough for today, hope everyone has a good day and we'll update more soon. Jen sends her best to all her fans! TodayJune 15, 2004. First, congratulations to Michelle Anna Gaudreau. Michelle graduates from preschool today and we are all looking forward to the graduation this afternoon. Also, congratulations to Megan Miller, Michelle and Jennifer's very good friend who is also graduating from preschool. Megan and Michelle are in the same class and so the Miller and Gaudreau families will be at graduation together. Michelle and Megan, your Mom's and Dad's are very proud of both of you. Hopefully next year you'll be in the same Kindergarten class together. Mom had a meeting this morning with Donna, Jen's OT, about tomorrow's IEP meeting. She'll fill Dad in tonight. Also, Kristie and Donna will both be at tomorrow's IEP meeting with Mom and Dad at the school. I'm sure that whatever the outcome, it will all be in Jen's best interest! Thank you Laurie for the words of encouragement and thank you Eileen for all the help and information. We'll update later tomorrow with results from the meeting. Until then, thank you everyone for the continued support and help. TodayJune 14, 2004. Once again, we are in amazement at how much good there is out there. On Sunday, as I mentioned in previous journal entries, we joined in the celebration of Mass and Eucharist at St. John the Evangelist Church in Hudson NH. We finally had the opportunity to meet Paul Keane, the President of the Parish Council for St. John's, Father Jack Horan who officiated the celebration and many of the parishioners who attended as well. All of these people, and including others who weren't there, have been instrumental in generosity of financial resources, prayer and support on Jen's behalf. Paul, Father Jack, the Folk Group with there great music, the Eucharistic Ministers and the parishioners all made the celebration a completely amazing Mass. Father's homily was very fitting, Paul's lecture about Jen and her condition was moving, the Folk Groups selection of music and performance were great, and the parishioners standing ovation for Jen made us realize that God, community and the power of prayer are alive and well in Hudson NH at St. John's. Also Sean and Michelle, Jennifer has been blessed with the both of you in her life. Thank you both for all that you do. Paul and Father Jack, the presentation of roses to the girls was above and beyond and the entire celebration will be a memory cherished for all the years to come. Also, to all those who stopped by on there way out of church to say "hello" and to wish Jen well, thank you for doing so. We know that certain individuals mentioned personal family medical problems as well, please know that we hold you in our prayers continuously. Paul, please feel free to share Jen's website with all your parishioners should they want to keep tabs on Jen or to leave her a message in her guestbook, and let Fran know that we look forward to meeting her too. Sue and I were both extremely impressed and overwhelmed with the fact that all these people were doing all of this for us, what a great parish. In short the entire Mass was perfect and couldn't have been planned any better. Thank you again to each and every one of you, for all of it. On another note, Jen has "hippo" therapy (AKA horse back riding) today. She's looking forward to riding Tully! Have fun Jen. And, thank you Eileen for the phone call on Saturday about the IEP for Jen on the 16th. Your help is greatly appreciated. We hope Paul is feeling better and that everything is okay. Tell him Jen sends him a big hug. Also, please keep Eric, Dena and their son Joseph in your thoughts and prayers as they are just now going through their son Joe's diagnosis with SMA. Okay, that's all for today. TodayJune 11, 2004. Good morning Jen Fans! This morning Jen has OT with Donna. Thanks Donna for all that you do. Also, in regards to the budget cuts and layoffs in the school system I mentioned previously, Mom was updated this morning by Donna that three of the individuals from the school system who Mom has met with in regards to Jen's IEP for September have received pink slips. Which more than likely translates into a significant impact on services available for Jen. Obviously we won't know exactly how this will impact her until we meet next week Wednesday on the 16th, but more than likely it will. You know, never a dull moment….. Sorry LP I wish I had better news. Clearly if they can't offer up a fulltime aide then we'll have to figure something out. Melissa, thanks for the website on glyconutrition supplementation. I checked it out and we are looking into it with Jen's pediatrician. We'll keep you posted. With that, Jen wishes everyone a great weekend! TodayJune 10, 2004. Good morning Jenster fans. Jen says hello and hopes everyone has a great day. Today Jen and Michelle will be visiting Grandma! They really like spending time at Grandma's house because Grandma, Auntie Go Go and Uncle Tom spoil them rotten. Have fun Jen and Michelle. Michelle's second to last day of pre-school is today. One more day and then she graduates! Congratulations Michelle. Mom and Dad are looking forward to your graduation next week. Then you and Jen will go to the same school. In September, assuming we send Jen to the school system for various therapies no longer covered under early intervention, both girls would be in the same school together. We are still debating about sending Jen. We will have to see if the school system is willing to provide a full time aid for her. We'll find out next week. Dr. Glader also wrote a letter to the school system outlining why Jen needs a full time aid while attending school in support of our request. Thanks Dr. G. And finally for today, we are looking forward to Sunday and celebrating Mass with St. Johns Parish in Hudson with Paul and the entire congregation. Thanks again for all your support and prayers. Have a great day. TodayJune 8, 2004. Appointment update. Well it looks like Jen's weight gain since her last appointment with Dr. Glader (three/four months ago) has been minimal, with a couple of ounces gained. As discussed with Dr. Glader we'll go another three months and reassess at her next follow up. As Dr. Glader put it, since weight gains are slight, Jen is progressing exponentially into the smallest percentile in terms of weight and further away from where she should be. A sudden illness and another period of no food intake, like her last go around, and Jen could be compromised. Dr. Glader is willing to go another three months and reassess but if things continue on in a similar fashion then Dr. Glader believes we should consider "G" tube. Other than that, Jen's appointment went relatively well. That's all for today. TodayJune 8, 2004. Jen has her appointment with Dr. Glader today at Children's in Lexington. Good luck Jen. Hopefully Jen has gained some weight. It is so hard to tell from just holding her whether she feels heavier or not. Hopefully she is and that we are still moving in the right direction. Have a great day. TodayJune 7, 2004. Today Jen had physical therapy. Mom reports that all went well and that Jen had fun. Thanks Kristie for all that you do for Jen. We have received a couple of requests for tickets for the upcoming comedy night, so we wanted to take a quick moment and just let everyone know that we anticipate having tickets for sale mid July. Exact date has not yet been confirmed but we will post that as soon as it is known. Also, for all of you who have emailed us with a request and the number of tickets you want, we have your name and amount of tickets requested on a list. We will contact you as soon as we receive them from the printers. Thanks again for your interest and we are looking forward to our next event. TodayJune 4, 2004. Jen's IEP meeting went well. Mom reports that things seem to be progressing well with the evaluations at the school but until that time comes for a final meeting, who knows. Jen has OT this morning with Donna. And then another visit to Grandma's house. Last night while sitting on the floor, Jen had a little tumble. Unfortunately the pillows were not quite positioned properly so we now have a little bump and scratch on the side of Jen's face. She cried for a little bit but bounced right back. We received the sleep study results back from Jen's stay at Childrens Hospital. I'm not a pulmonologist, and Dr. Boyer has not had the opportunity to interpret all the data for us yet, but based on what we've read it looks like Jen's O2 saturation is consistent during the night between 94 to 96. There appeared to be a couple of dips down to 92 and a few higher readings at 97 and 98, but these readings in drops and elevations were minimal and for brief periods of time. Additionally there appears to be a lot of information in connection with muscle readings, sleep stages, time during sleep stages etc., that we can not decipher and will need Dr. Boyer to explain. So now we have a base line to benchmark from. Other than that things have been status quo. Childrens called last night to confirm Jen's Lexington appointment next week. We are anxious, since Jen's appetite has not been completely on mark. There have been some periods of time were we have barely gotten a bite or two of food into her. Then other days have been okay. We are hoping that she has gained some weight but who knows until they weigh her and compare to the last appointment. One good thing is she certainly enjoys her, what she calls "brown", ice cream or more commonly known to everyone else as chocolate. Jen sends her best to everyone and wishes all of you a happy and safe weekend. Love Jen. TodayJune 2, 2004. Good Morning Jenny Jenster Fans! First and foremost, to the Co-Presidents, that is correct! One of the coins is not a nickel, BUT the other one is!!!! Great job LP & MP. So the answer is a quarter and a nickel. Mom and Jen have another IEP meeting and evaluation this morning with the school system, so good luck to both of them. Our final evaluation and IEP meeting will be on the 16th of June. This will be the meeting that basically spells out what the school system will provide Jen with. Anything short of a full time aide, and off to mediation we go. Jen's memorial day weekend was hectic and safe. We had lots of fun with our cousins playing and riding "bikes". Thanks Auntie Jo, Auntie Chris, Uncle Myles and cousin Amanda. And Saturday, Mom and Dad got a chance to see the proofs from our recent visit to the photographer, thanks Auntie Ei, Uncle Mike and cousins Kevin and Ryan for helping out and spending time with Jen and Michelle. The proofs came out great. There are some really great pics of both girls! Looking forward to sharing them with all of Jen's fans. So, new page should be coming shortly in the photo gallery. Michelle got her new bike on Saturday. It's a little bigger than what it should be but with the cost of bikes the way they are, hopefully she'll get a couple of seasons out of it. Jen is doing well and hopes everyone had a safe and good Memorial Day weekend. TodayMay 28, 2004. Thank you to Helen Baldwin for her generous donation of an autographed copy of "The Jeffrey Journey" for our upcoming event in September. The Jeffrey Journey, written by Helen Baldwin, is an inspiring account of Jeffrey Baldwin's short life here on this earth and the significant impact he has made on so many. God Bless the entire Baldwin family for their generosity and continuous support of so many others. No for today, Jen had a dentist appointment this morning. Several months ago, we started noticing that the enamel on Jen's front teeth was pitting and/or peeling off. Well shortly there after, it seemed like there was a heavy round of discussion on the FSMA message boards with regards to the same issue and for the most part proved that everyone had a different answer or reason as to why this happens to so many SMA children. Well today we brought Jen to the dentist and apparently there is no reason according to the dentist as to why this would be happening???? But it is! At any rate, we must now apply a fluoride gel to her teeth and hopefully this will stop whatever is happening to the enamel. Also, we have a follow up in a couple of months to see if it has progressed anymore. Jen's week was relatively quiet. We cancelled hippo therapy due to lightning and thunder and there were no scheduled doctors appointments other than the dentist so basically just PT and AT. For the holiday weekend, Jen leaves all her fans with a riddle, here goes: "You are holding two coins in your hands. The total of both coins equals thirty cents ($0.30). One of the coins is not a nickel. What are the two coins in your hands that total thirty cents ($0.30)? If you want to take a guess, email us or leave a note in the guestbook with your answer. Jen will reveal her answer next week! Have a great and safe Memorial Day weekend. TodayMay 20, 2004. Quick Jen update. Jen is doing well. Still no word on the sleep study but we'll update as soon as we hear. Also, Jen has aqua therapy today. Have lots of fun Jen! We will be attending Mass at St' John's in Hudson on Sunday June 13th. If anyone is interested in joining us in the celebration of Mass on that day, it would be great to see you there. Jen, Sue, Michelle and I will be presenting the gifts to the celebrant. We are looking forward to meeting Paul and the parish as well. On another note, a quick request for extra prayers today as Katie goes in for her spinal surgery. Thanks! Jen says "Have A GREAT Day!" TodayMay 17, 2004. That last sentence got cut off. So here it is. Thanks again for all that you do! TodayMay 17, 2004. Well Saturday was great at the walk. The weather was nice and the event was very successful. There was a large turnout for walkers as well as many SMA families. Congratulations to Silvia and Brian on putting together another successful walk this year. Jen and Michelle finally got a chance to meet the infamous team of MJ and Brenda! It was great to finally meet and get a chance to talk. MJ keep on studying and good luck with all the honors program classes. We know that you'll continue to do very well. Thanks for making the long trip up to Hingham. (PS - Hope you enjoyed the "Big Dig" and who knows, maybe we'll see you at "HARVARD";>)) ^Sean^, I'll do my best to help out your Dad and Mom. I know you'll be there to guide me, just like your friend ^Marshall^ does. Carolyn, "Perkins" is great. You seem really content and more at ease with her in your life. And I'm sure that she is a great helper wherever you go with her in tow. Tell your Mom and Dad we'll see them at the Andover CC soon. Laurie and Mark, sorry we didn't get a chance to catch up, maybe soon? Draco is great and it was good to see your Mom and Dad. Anytime you need someone to dog sit, let me know! Craig and Claire, the sharing of the news of Luke taking his first steps was really good to hear. We're sure his twin brother is doing the same! Andrea, Bill and William, really good to see you guys also and we hope you have a great time at conference. Heidi and Tripp, Will seems like he is doing really well. Keep us updated on the trials. Paul and Julie finally we got the chance to meet. Hopefully we'll get another chance soon to really spend some time together. Okay, now for some prayers please. First for Connor, how good it was to see your face. Please keep Connor in your daily prayers. This little guy and his parents are amazing. Please pray for Connor and him Mom (Karen) and Dad (Bill) so that whatever is causing him to continually crash, finally stops. Connor, Karen and Bill, all three of you are an inspiration to the SMA community, may God continue to bless you guys with strength and courage. It was really good to see you guys, even if for just a short time. Bill, hopefully everything with work will iron itself out. And finally, for little Katie, her Mom (BJ) and Dad (Joe). Katie will be going in for spinal surgery later this week. According to her Dad, Katie's scoliosis has reached a 90-degree curve and is now impairing her respiratory ability. The surgery will take approximately 8 hours and Katie will be hospitalized for about a week assuming all things go well. Recovery after she leaves the hospital will take another three months before she is completely recovered. The surgery will include the placing of two growth rods adjacent to her spine with temporary fusions on the top and bottom. Surgery for anyone is dangerous, never mind a 5-year-old child whose respiratory system is already compromised. I am very anxious about the whole surgery, only because I can semi-imagine what BJ and Joe are thinking. So please, over the next couple of weeks, please keep Connor, Karen, Bill, Katie, BJ and Joe in all your thoughts and prayers. Now Sunday, we went to church in the morning. Michelle was supposed to have a soccer game in the afternoon but with all the rain it was cancelled. Later in the afternoon, Jen and Michelle had their friends Colin and Liam over for dinner. Sean and Michelle, thank you for the continued support and everything you guys do. It was great to see you guys again and be able to spend some time together to catch up on your trip to Disney and see how the kids are doing. Sean and Michelle, think about what we discussed. If you come up with some ideas, please send them along and please keep an open mind about being a part of all this. We know that both of you will make a great contribution to the success of what comes to be. Thanks again fo TodayTuesday, May 11, 2004. Well the word is in and insurance has denied our appeal for additional aqua therapy coverage over the course of the calendar year for Jennifer. Which currently means, only 16 visits per year for Jen. (8 from primary and 8 from secondary). That will get us through 4 months of visits at 1 per week. We are going to try and persuade the insurance company to hear us out one more time but according to Mom, we are not entitled to another appeal on this matter. But who knows maybe they'll reconsider. Fortunately, we've been blessed by some very generous people and so there are some additional resources to continue on with aqua therapy for a while. With that we are very thankful! God bless all of you for the support, generosity and prayers! TodayMay 10, 2004. Once again it is that time of year and SMA events start kicking off. With that, on Saturday, May 15th, Brian & Sylvia Murphy will be holding their annual Walk SMArt in memory of their children Cianan and Cecilia who lost their battle to SMA. Anyone interested in participating in the walk, please feel free to do so. The walk starts at 10:00am, in Hingham, Massachusetts, at the Wompatuck State Park. All proceeds will benefit Families of SMA. The suggested donation for registration and participation is $15 per person. Or you can collect some pledges and turn them in at the walk instead of making a donation. To get to Wompatuck State Park in Hingham, Massachusetts, take either route 128S/95S or 93S to Route 3N to exit 14/Rt 228N. Cross straight through the Route 53 intersection and follow 228N for 3 miles. Turn right onto Free Street, you will see a sign for the Wompatuck State Park. The entrance to the park is just shy of a mile on the right at Union Street. Once you enter the park proceed for about 2 miles, you will come upon a parking lot on the left with a large building as well. Pull into that parking lot, we'll be hanging out. The walk is 1.5 miles long and is completely paved. We will probably bring some sandwiches and drinks like we did last year and have a bite to eat before leaving after the walk. So, if you are interested in joining us, let us know so that we pack enough for everyone. PS - MJ we are looking forward to seeing you on Saturday!!!!! TodayMay 7, 2004. Okay, it seems like just when I get on track for posting updates, something else comes up and time becomes scarce. So many things to update on, Jen finally had her sleep study about a week ago. (I think April 28th?) (All the days seem to blend together) Anyway, Mom reported that Jen slept poorly. She woke up seven or eight times during the night needing to be shifted, rolled and rubbed. And of course, an early wake up at 6:00 AM didn't help much. We did the kid shuffle at 7:00 AM right off of Montvale Ave on route 93. Poor Michelle, I had to wake her up at 6:00 as well to get her on track for the transfer with Mom and Jen who were on their way back from Children's and the sleep study. Jen was glad to be home and didn't take very kindly to having so many probes attached, along with nasal prongs, O2 saturation monitor and everything else tied, taped or glued to her body. The glue was the worst. We were told to try mineral oil to get it out of her hair. Well, enough said. You can imagine what Jen looked like after we emptied half a bottle of mineral oil in her hair to get all the glue out only to come to the realization that we had made a mistake and that was not going to work at all. After several days of hair washing, Jen is now free of all glue. Not to mention her hair has an amazing shine!!!! Well, we still have not received any reports on how the study went but we are truly curious. Okay, this week brought our appeal board meeting with insurance on Wednesday. We had a voice mail message at home today from insurance but we were unable to get back in contact with them, so we are still not sure if they will cover anymore aqua therapy visits for the current year. We want to thank Dr. P., Kristie, Donna, the entire team at N.E. Rehab and everyone else who wrote great letter, instructed us, and helped us with this task. Gut instinct tells us that we will be appealing again shortly. Oh well, bigger guns and more ammo next time around! I wanted to say Thank you to Paul K. for being so patient with us. If you've been checking Jen's journal, Paul is the President of the Parish Council for St. John the Evangelist Church in Hudson. Thank you Paul for your patience and continued support. All the prayers from St. John's community have been instrumental in Jen's continued strength and well being, and we look forward to June 13th so we can celebrate mass with you and meet all of you. Also, today there was another great surprise in the mail. Thank you, Sean O. and the Knights of Columbus, your generosity is immeasurable. As always Sean, you - Michelle - Colin and Liam are a tremendous source of strength and inspiration. As well, the prayers and support from you and all your brothers in the Knights or Columbus is greatly appreciated. Likewise all those prayers have been instrumental in Jen's well being also. Last week Friday, I caught up with Sue's sister Joanne. For a while Joanne has been thinking about some events to raise money for SMA as well as maybe bringing to fruition a new chapter to Jen's life. To start with, Joanne has undertaken the task of holding a comedy night at "Giggles Comedy Club" located at "Prince Pizza Restaurant" on Route 1 in Saugus, MA. The event is being held on Thursday, September 23, 2004. Seating is limited to 160 people and the cost per person is $30. The cost includes free pizza from 6:30 to 7:30 and three comedians who will perform from 7:30 to 8:30. There will be a cash bar for beverages, which I believe, includes beer and wine as well as soda. Thank you to Joanne, for all that you do and all that you will do. In addition, Joanne has brought to my attention the hopes of establishing a non-profit organization in Jennifer's honor. Clearly this is in an infancy stage and so we are starting to talk regularly about purpose and structure. I have met with a couple of doctors from the Boston area hospitals and have received tremendous feedback and support. It will be interesting to see where all of this goes. If anyone is interested in perhaps joining in on this crusade, please feel free to email me and let me know. There is power in numbers. In closing, I will leave you all with the following: "Anything driven by love will succeed somehow, no matter what. Go for it!" Great words spoken by a great person. Thanks Dr. B. for everything. TodayApril 13, 2004. "SMA IS IN THE NEWS AGAIN!" Tune in to your local CBS station this Wednesday night for 60 Minutes II. This week's episode features an in-depth exploration of Pre-Implantation Genetic Diagnosis and focuses on one of our Families of SMA Families, John and Cindy Whitley of Texas. John and Cindy learned about Spinal Muscular Atrophy when their son, John III, was diagnosed as a Type I. After losing Johnny the Whitley's began exploring PGD with the help of Dr. Hughes. Their story is featured on the show and we hope will help educate more Americans about Spinal Muscular Atrophy. Thanks to the Whitley's for sharing a very personal and emotional experience -- all with the goal of raising awareness of SMA. Also, Families of SMA would like to thank Shaina and Adi Rappoport -- because of an initial contact they made with 60 Minutes II, this story came to be. This is another example of how together we can truly make a difference -- Every action, no matter how little or how small, really helps in the effort to raise awareness and to find a treatment for SMA. TodayFriday, April 9, 2004. Good morning to all of Jen's followers. Well, today's update is a bit lengthy. First to start with, a couple of weeks ago when Jennifer was really sick, our good friends Sean and Michelle O'Neil put out a prayer request for Jen through Sean's participation in his local Knights of Columbus. Unbeknownst to Sean, the prayer request wove its way through the Knights of Columbus and fell upon the ears of a fellow Knight named Paul Keane. Paul, who is also a member (and president) of the St. Johns Parish Council in neighboring Hudson, was intrigued by Jen's story and decided to make some inquiries about Jen. He contacted the O'Neil's and of course learned more about Jennifer. Paul additionally learned of Jennifer's website and visited it to learn even more about Jen and SMA. After learning about Jen, Paul contacted the O'Neil's again and wanted to extend an offer to Jen on behalf of the St. Johns Parish Council and provide her with an extremely generous financial gift to help her with her medical needs. Paul contacted us shortly thereafter and explained to us what the parish council wanted to do. Again Jen has been blessed by this extremely amazing person, an extremely amazing parish and of course some very great friends. I have had the opportunity to communicate with Paul via email but have not yet had the opportunity to meet him or the parish council. Jen, Mom, Michelle and I are hoping to meet these amazing people shortly. (Hopefully not too long after tax season.) After Paul had communicated with us in connection with the parish council's wish to contribute to Jen's needs, Paul also asked if Jen's name could be added to the list of names in the parish bulletin for additional prayer requests. So, now we have another parish praying for Jen! Thank you to Paul, Sean, Michelle, St. John's Parish Council and the entire St. John the Evangelist parish. As Jen's father I find it amazing how her life continues to impact and affect so many people. Even further amazing is that so many of them are people she has not even met. Jen sends a very sincere and heartfelt thank you to all of you. Okay, and now onto the insurance scene. As some of you know, insurance has stopped paying for aqua therapy visits. Sue, several doctors at Children's, Jen's PT's, OT's and pediatrician have all written letters in appeal to our insurance provider to reinstate and increase Jen's visits for aqua therapy. As most of you know, the basis for denial was that there was no increased improvement in Jen's overall condition. Well duh, it is a progressive disease. At any rate, we received a call from our insurance provider and Jen's appeal will go before a review board on May 5th for review of renewed approval of aqua therapy visits. We have been asked to attend the appeal process and provide the review board with our input. Wish us luck for renewed approval. Mom will be there to fight for Jen, Go Mom; you'll do just fine. Jen received her new plexi-glass tray for her power wheelchair. Finally, her chair is complete and Jen is enjoying her new independence. She likes to go fast……. Jen's appetite is pretty much back to normal. She did lose some weight with that last round of sickness, not to mention that Dr. Glader had started to really watch the weight gains over the last six months since they've been slow and small. Hopefully she will have regained what she lost when she goes in for her next visit. Okay, Jen sends her best to all her fans and wishes all of you a Happy Easter. TodayFriday, March 26, 2004. Good morning Jenny Jenster fans! Jenny is well on the road to overcoming this last cold. As of last night she was doing much better and sounding really good. She's back to her normal self overall and her appetite is coming back. On another note, we are awaiting Jennifer's new tray for her power wheelchair. Hopefully it will arrive soon. Dad has put together a make shift tray out of heavy cardboard so that Jen can still enjoy her mobility and freedom to get around but it's not as good as the original cardboard tray she had. We are all looking forward to the end of tax season. It has been another long one and finally the end is not too far out of sight. Michelle starts her soccer season in a couple of weeks and is looking forward to Dad coaching her. Dad's pretty psyched about it too. Okay Jen wishes all of her friends a safe and fun weekend. TodayMarch 23, 2004. Update from the Dr's office. Good news, no sign of pneumonia or other lung problems. The doctor reports that Jen just has lots of junk in the lungs and to continue with chest PT, cough machine, antibiotics and the regular routine. So that is good news. TodayTuesday, March 23, 2004. Well, it looks like we’re back to the doctor's today. Jen's lung have gotten worse. Not sure why, it looked like we had turned the corner but I guess we may not have. Her appetite is better, not 100% but at least she is eating. Her disposition is in check and she is her normal self. She is not lethargic or running a fever, so we're not sure why her lungs have gotten worse. Mom has been cycling chest PT and cough assist regularly and Jen is still getting her antibiotics. We'll have to wait and see what the doctor thinks. We'll update later. Thanks for the support. TodaySunday, March 21, 2004. Quick Jen update. Well, the fever is completely gone but the junk is still with us. Jen is doing good, and she appears to be old self for the most part. Originally what we thought might turn out to be another trip to the hospital has been avoided, THANKFULLY! Both lungs are now junky and we are still on the continuous chest PT and cough machine cycles but Jen's color, appetite and disposition are all good. We'll see how the night goes, we may bring Jen back to the Doctor tomorrow for another lung and O2 sat. check, just to see what the Dr. thinks. Just wanted to bring all of Jen's fans up to date. Thank you to all of you for the prayers, they worked! TodayFriday, March 19, 2004. Well it looks like Jen may have turned the corner. Last night Jen was still relatively lethargic and her appetite was still off but she did eat a little and seemed slightly better than Wednesday night. Her temp was holding around 101 to 102 and her chest was pretty junky and the night was still filled with interrupted sleep. However, we continued with the antibiotics, the motrin, the tylenol and the chest PT through the night and Jen was awake for an extended period of time from about 3 to 4 again, but Mom reports this morning that Jen looks better and her temp is now in the 99 degree area. She is still really junky but seems more like herself. Assuming, things stay constant or improve during the day, then we will hold off on going back to the Dr's until tomorrow, if need be. Both Dr. K and Dr. P checked in via phone calls during the day not too mention they took really good care of Jen at her visit again yesterday. Thank you to all of you for your continued prayers and support. TodayThursday, March 18, 2004. Update. Jen's fever has worsened. She is now temping around 103 without motrin and around 101 with it. Her pediatrician called us a third time last night later in the evening (what an amazing person) to check in and see how Jen was doing. At that point she was very warm and lethargic. She hovered around 101 through the night with intermittent sleep until about 3:00 - 4:00 when she spiked again to 102.9, the motrin kicked in shortly after Mom gave it to her and she started to cool down some. When Dad left early this morning she had dropped back down to 101, and a quick check of the lungs indicated that she was still very junky inside. She ate very little yesterday and did not have much energy other than a small burst of it early in the evening for about an hour. Mom reported last night that O2 sat. was close to 100 at the Dr.'s office yesterday morning, which is good. Jen has another appointment with the doctor today in the early afternoon. Dr. K prescribed antibiotics yesterday and Jen has now had one full round. However, Dr. K doesn't believe that whatever has hit Jen is bacterial. His thoughts are viral, which would mean that antibiotics are not going to get rid of whatever is going on. Thank you for the continued support and prayers, we'll update later with more info. TodayMarch 17, 2004. Another quick update for the day. The Dr. reports that Jen's lungs sound "okay" but he is not ready to call for a chest x-ray. He is concerned with the fever and isn't quite certain as to what's causing it so he wants us to check back in this afternoon with an update on Jen's status. Mom is off to the pharmacy for antibiotics, and tomorrow we'll back to the Dr.'s office for a follow up assuming things stay the same. TodayMarch 17, 2004. We have cancelled Jen's Children's Hospital appointment for today with gastro. Not because of the snow and weather but because Jen's cold has gotten worse and she is now running a low fever. Per update from Mom this morning, Jen isn't herself today. We have called her general pediatrician Dr. P and have scheduled an appointment shortly. We'll see what they say. Please say an extra prayer for Jen today, Thanks. TodayMarch 16, 2004. It has been a while since our last Jennifer update, primarily due to work. Yes the ever popular "tax season" is in full swing but since the corporate filing and extension deadline has come and gone (03/15), I thought it would be a good time to take a few moments and give everyone some Jennifer news. Well to begin with Jen is in the beginnings of a cold. It started yesterday and Mom reports that this morning Jen was very junky but now things are loosening up. Mom has started the chest PT cycles, stepped up the cough assist and suctioning and reports that Jen doesn't feel warm or like she is running a temperature. Jennifer has a scheduled gastro appointment tomorrow at Children's but with her cold and the "expected" snowfall that may change. As of last week, Jennifer's third swallow study shows no further change. Very good news! Our previously scheduled and cancelled neurology appointment still has not been rebooked. Hopefully soon we'll get back to the neurologist and to ortho as well. We both think Jen's scoliosis has worsened slightly and are hoping to have another x-ray done to see if that is or is not the case. Jennifer has really taken to her wheelchair. She now chases Michelle around the house and has demonstrated some great skills in maneuvering and managing her power wheelchair in public. We have gone to the Home Depot, to the Mall and out to eat and Jen has mastered driving her chair everywhere. The looks and stares can be overwhelming but the questions, smiles, interest and concern are far greater than the latter. In the mall was particularly interesting. At one point, an older gentleman who was in a motorized scooter asked Jen if she wanted to race. Jen politely declined, but I know she would have kicked some butt! You should see her tool around… She's very careful for other people, uses the ramps very well and can turn the chair around on a dime. To some degree I know she is aware of her differences in comparison to others, although she may not fully understand yet but she sees and knows. Hopefully this does not dampen her interest in using the chair in public. It is so great to see her getting around on her own. Well that's all for now. Jen sends her best to everyone! TodayMarch 4, 2004. Jennifer wishes her really good friend Connor a very HAPPY BIRTHDAY! Happy 2nd Birthday buddy, hope you have a great day and lots of fun! Love Jen. Today“HER EYES HOW MUCH THEY SAY” Look into her eyes and tell me so, Do you see the road she travels? For she’s only an infant so young, One would think the world is still to unravel. Her eyes how much they say. They are piercing and honest, You can not but stop and see how true. They grab you from afar and pull you close, Oh those eyes so blue. Her eyes how much they say. She’s older now but not by much, Her tale the same and now shared by only a few. Through her eyes we see and hear it now, The road she travels, do you? Her eyes how much they say. They are talking and laughing out loud, They are dancing and singing. They call from the mountain tops, Like bells from a church steeple, clearly ringing. Her eyes how much they say. As if trying to tell everyone who passes, All those who walk by. Look into my eyes and hear my story, But please do not be sad and do not cry. Her eyes how much they say. Yes my eyes they say so much, Still so many do not hear. Yes more of you see this road I travel, Yet to many still unclear. Her eyes how much they say. My eyes have help now, They are the voices of those so true. Yet my eyes still say so much, Yes, crystal clear and striking blue. Her eyes how much they say. Listen, all those who still pass, Listen to my eyes that speak so loud. Do you hear the tale they tell, Along with voices so proud? Her eyes how much they say. For my blue eyes are not the only ones, There are many more around. Some tell their story quickly and others take longer Theirs are blue, green and brown. Their eyes how much they say. Listen to all of them, And you will surely hear what they have to say. They speak a story so loud and clear, About the world of SMA. Their eyes how much they say. If you remain quiet and still after you hear the words they speak, You will understand their tale so true. My eyes they speak so much so many words, These eyes of mine so blue. My eyes how much they say. TodayJanuary 26, 2004. It has been a while since posting in Jen's Journal. To start off with I am going to ask for some extra prayers for a couple of kids and their families, Connor (Bill and Karen) and Katsie (Melissa and Ed). Both have been going through quite a lot lately and could use some extra support. So please take a moment and offer up an additional request, please. Now to catch up. Well our trip to Disney was great. The smiles on Jen and Michelle's faces were unforgettable. We had great weather, lots of sun, a lot of great tips from another family who recently visited (thanks Dufours) and some extra Disney cash to spend as well (thanks O'Neils)!!!! It was really good to get away from the routine stuff. Our room was at the Contemporary and overlooked the Magic Kingdom and the Castle, a great view, not to mention right on the monorail line. The fireworks display was phenomenal and both girls wanted it to go on forever. The second night we watched it from our room and noticed a couple of different things from the first night. I think because we were right next to the castle the first night that we were too close. The second night we noticed that some of the fireworks, as exploding, were in the shape of Mickey Mouse's head, much easier to notice not being right under them. At any rate the fireworks were great. We did all the rides you can imagine not to mention shows! The best by far was Fantasmic! Michelle was completely fascinated and in "awe". Because this is an evening display show, and Jen refused to nap during the day, Jennifer managed to fall asleep in Mom's arms just before the show started and slept through the whole thing. As an adult, it was quite the show to see. The stadium seats approximately (9,000) people and since we had reservations for dinner at Mama Melrose, we were able to not worry about getting a seat since dinner reservations come with reserved seating for the show. You would think that with a stadium that large, that you wouldn't have to worry about getting a seat but you do! I highly recommend to everyone who goes to Disney to see Fantasmic. Additionally, we later found out that the park during the time we were there had record-breaking numbers and on three separate days they closed admission due to capacity. Other highlights included riding on the monorail in the very front with the conductor, breakfast at Chef Mickey's with visits to our table by Mickey, Minnie, Chip, Dale, Pluto and Goofy. Jennifer and Michelle both filled their autograph books including the above celebrities and a list of others that we got to meet in the park! Three visits to the 3D Mickey's Philharmagic, several thunder mountain (roller coaster) rides (Michelle's favorite), several Dumbo rides (Jen's favorite), numerous sitings and meetings with Disney Characters, including Cinderella, Snow White, Sleeping Beauty, Arielle, (basically all the princesses) Lilo and Stitch (which brought the most amazing laugh and smile to Jennifer's face, priceless)!!!!!! Three parades, lots of shows and TONS of food! The only disappointment from the whole trip was upon our return. Sue had five rolls of film to process only to learn that our camera had S--T the bed. No good pictures, total bummer. Thank God we took our video camera with us, so we have some really good footage of our trip. Since our return, Jen has been doing relatively well. Jen came down with her first cold of the season but has managed to fight it off very well. She still "sounds" lousy but is doing well. No fever, no rattling in the lungs, no infection, eating just fine, so she's doing great. We received her cough machine about a week and a half ago. Not very fond of it to say the least. She's working hard trying to get used to it. Jen also finally received her power wheel chair a week ago tomorrow. She's does great in it but is so used to having Mom and Dad carry her around that she doesn't want to sit it very much, but when she does she handles it like a pro. Since her chair has hydraulics that actually lift the seating unit up, Jen can remain in her wheel chair and join us at the table to eat, color, draw, etc. A great feature and already being utilized (she painted to her hearts content yesterday with big sister Michelle). The seating unit is not constraining her environment so arm movement is easier unlike her high chair and so painting was a lot easier for her yesterday. She had a blast. Okay, one other thing. Another neat story, a friend of a friend of the family way out in Seattle Washington who works in a burn unit at one of the hospitals there, heard about Jennifer. Together everyone in the burn unit collected money and donated it. Over the weekend Jennifer received $67.00 from this great group of people. Thank you to all of you for your generosity and concern! Oh yeah, one other thing. We just learned over the weekend our secondary insurance provider is now cutting back on PT visits. Originally we were entitled to 20 per year. They have now reduced that to 8 per year. Oh well, c'est la vie! Jen wishes everyone a Happy New Year and she says "GO PATS"!!!!!!!!!!!!!!!!!!!!!
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