"...a true Valentines Day gift from God"
John Dylan Cully's Web Site
<body bgcolor="#0000C0"><font color="#ffffff"> <h3>Archived Updates</h3> <i>2009-11-11</i>: by Jamie<p>Hello to everyone, today was a big day for John Dylan. He got to try out a new wheelchair. Yes, it is about that time. He is outgrowing his old chair that has been a faithful and wonderful chair for the last 5 years. He is simply getting too tall. I dont' know what we will be getting, but will probably stick with Permobile as they make AWESOME chairs:) He is really doing well in school and even has his own computer/scanner/and printer so he can do all of his work with a word prediction program. this helps his fingers and hands not to tire out so easily. It also makes him look like the smartest kid in second grade:) Thanks for checking in on us:)Jamie<hr><P> <P><i>2009-09-08</i>: by Jamie<p>Wow! it has been a year since I posted last! John Dylan had his hamstring surgery June 1 and is doing really well. They managed to stretch his legs out from about 45 degrees to about 105 degrees. that means he can sit more comfortably and can sit up better. He is in second grade and loving school. He has a computer with word prediction software on it that helps him to write on the more lengthy assignments so his fingers don't tire out. We are increasing his tube feeding to 4 cans a day in order for him to put on a little weight....for at 7 1/2 37 pounds is not enough. We are hoping to get him to about 40. thanks for checking in on us:)<hr><P> <P><i>2008-06-08</i>: by Jamie<p>Hello, John Dylan is officially off to MDA camp. He was sent off by the local fire department, and the Harley Owners group. It was really cool to have everyone come out and check out his new paint job. John Dylan's buddy for the week is Ray. It looks like they will have a lot of fun. I hope John Dylan does tons of fun activities and makes lots of friends. Thanks for checking up on us:) Jamie<hr><P> <P><i>2008-05-21</i>: by Jamie<p>Hello all, I am getting really bad about updating lately. I will work on it:) John Dylan is successfully completing kindergarten, and is quite the reader. He is looking forward to first grade as his kinder teacher and his whole class are moving up to the first grade with him. Hooray! He recently got his wheelchair painted by Benett Harley Davidson and The Body Shop and it Looks so cool. I will try and get some pictures up soon. It is really awesome! He is doing fairly well health wise and is now 35 pounds. I am going to really work on eating through his mouth over the summer. Hopefully we can make some improvements there soon. We are looking forward to our annual trip to Philly in August as well to wee all our Bethlem and Ullrich family. Thanks for checking up on us:) Jamie <hr><P> <P><i>2007-10-14</i>: by Jamie<p>Hello everyone, we are starting our annual Fall round of Dr's appointments. The end of October we will go and meet with an orthopedic Dr in regards to John Dylan's bone density and his slight scoliosis as well as the aggressive nature of his contractures. We will also be meeting with Dr Fahl our gastrointerologist in regards to his feeding tube and possibility of a feeding clinic. John Dylan is growing like a weed lately now that we have changed his feeding patterns and now weighs in at 39 pounds! We are hopeful about trying to wean him off of the feeding tube over the next year. If he continues to eat well and gain weight we can keep cutting back on his tube feedings. That would be really nice for him and us. John Dylan recently got a bike through a grant from Carrie Tingly hospital. He is riding it well, and it really exercises his legs and stretches them too. Thanks as always for checking in on us. Jamie<hr><P> <P><i>2007-08-20</i>: by Jamie<p>Hello everyone, We just got back from our trip to Philadelphia and we had a great time. We saw the liberty bell, rode the ducks (a cross between a bus and a boat) went to the zoo and ate all kinds of weird food...of which John Dylan sampled a little. We also had a great time with the other families from around the USA with Ullrich/Bethlem myopathy. The medical update was to be expected, although it can be hard to hear as well. John Dylan's contractures in his arms and legs are worse, and he is developing some scoliosis in his upper back. His weakness is severe and that is limiting what he is able to do. The good news is that he is healthy and growing well. We got to meet with an official nutritionist and that helped us out SO much. As a result we are changing some of his tube feedings to coincide with normal feeding times like breakfast and lunch. He is tolerating the feeds well and we hope this is a step towards weaning him off of the tube in the next few years. John Dylan has started kindergarten as well. He is making tons of friends and is doing well there.(I think he is the teachers pet already:)) He is also making appearances on the news for the annual Channel 9 telethon for Jerry's kids. As the local ambassador he gets a lot of attention during this time, which is fun for us all. Thanks for checking up on us, Jamie <hr><P> <P><i>2007-08-03</i>: by Jamie<p>Hello, I finally got some new photos up of John Dylan. I hope that you like them. They are from the Harley Davidson bike run for the MDA, so John Dylan was a guest of honor. He had a great time. John Dylan is doing well he now weighs in at 35 pounds and is getting taller by the moment. We are taking all of the kids to Philadelphia next week for the Ullrich conference and are looking forward to seeing everyone and meeting with Dr Bonnemann. Thanks for checking in on us and don't forget to look at the photos section to see the new photos.<hr><P> <P><i>2007-06-01</i>: by Jamie<p>Hello there everyone, John Dylan is getting big....in fact he now weighs 33 pounds. We are ordering a new seat to go on his wheelchair and with that we needed a new van. Now John Dylan can ride in the van while sitting in his wheelchair instead of being lifted in and out of his wheechair to a car seat. This has made life much easier on moms back and a lot more comfortable for John Dylan and the other kids:). He has lost the bottom two teeth and looks quite grown up...and is starting to read small books. He is really fun to play games with and beats Grandma at Candyland quite regularly. We are hopeful to take out trip to Philladelphia in August, and can meet with a Dr to look at the contractures in his elbows. There is some thought that his contractures there are being caused by an boney growth in the joint. So we will have it looked at. Thanks for checkin up on us...I will try to post more regularly. Jamie<hr><P> <P><i>2007-03-08</i>: by Jamie<p>Hello there everyone, We are looking into which school to put John Dlan into for Kindergarden, and he is loving it when we got and try them out for the day. He really gets along well with the other kids, and is not too teribly far behind where they are academically...(what a smartie). He has also lost 2 teeth..he looks very cute and very grown up with his two lower center teeth missing. Boy is he excited that he and Noah have both lost 2 teeth..he is planning on passing Noah in the teeth department real soon! We also took him in for his 5 year old check up and he weighed 33 pounds!! And was 44 inches tall. What a growth spurt he has had this past year. Thanks for checking up on us. We are doing well. Jamie<hr><P> <P><i>2007-01-14</i>: by Jamie<p>Hello to all. Well we finally got John Dylan on Medicaid...Horray! That will help us with our formula for his feeding tube, pull-ups and any equipment that he may need as he grows up. He is really getting tall and is looking forward to his 5th Birthday in a few weeks! I can hardly believe it! He is planning a Superman party and is looking forward to seeing all of his friends and having a pinata! Thanks for checking up on us! Jamie<hr><P> <P><i>2007-01-01</i>: by Jamie<p>Hello there everyone, boy have I gotten behind. John Dylan is doing well and has started to wear dynamic splints on his arms at night while he sleeps. As always he is the trooper. They are spring loaded and pull his arms all night to try and straighten them out a little. He did complain a little at first, but after 2 nights is sleeping through the night with his arm brace on ( I rotate arms 1 arm at a time as he needs to be able to snuggle with his blanket and be comfortable while he rests). I don't know if I can see any improvement, but we will give it a shot. If it does not work we may consider a surgical release of the elbow joint ...this will be a ways in the future as it would be a major surgery for him. Thanks for checking up on us. Love Jamie <hr><P> <P><i>2006-11-01</i>: by Jamie<p>Hello all, The sleep study went well. John Dylan was quite the trooper. they will be changing his setting to 12/6 instead of 12/8....I think it is an improvement....not really sure until I meet with Dr. Tremper in a couple of weeks. We are doing well and had a great time trick-or treating last night. Kelsey was a cave girl, Noah a skeleton and John Dylan was a king. They got TONS of candy and had a fun night. Jamie<hr><P> <P><i>2006-10-24</i>: by Jamie<p>Hello everyone. We are doing well. John Dylan is scheduled for a sleep study on Saturday the 28th of October. It is a routine screening to make sure that the settings are correct on his BiPap machine. They will assess his breathing as his tonsils appear to be getting slightly larger.(which could affect his breathing while he sleeps.) John Dylan enjoyed his visit with Trey and Nate...as they came over from Samoa to visit this week. They really had a great time together. Thanks for checking up on us:) Jamie<hr><P> <P><i>2006-10-02</i>: by Jamie<p>Hello all, John Dylan is doing well. We took him for a follow up appointment with the pulmonologist for a cough that tends to linger...and questions regarding his BiPAP machine. He ordered a CAT scan of his nasal passages to look at his adenoids and tonsels (the tonsils have grown since our last visit and may be part of the breathing issues and cough). I am not really very excited about the tests...as I think they are just being cautious. John Dylan was a real trooper and did the CAT scan very bravely...and as a result walked out of the office with a new Magna Doodle! That made his day. I hope you all are doing well. Love, Jamie<hr><P> <P><i>2006-08-30</i>: by Jamie<p>Hello everyone. The trip went very well. We met a lot of new families...and had a great time. Naoh learned to play hockey with the older boys and thinks he is a professional now. Too bad New Mexico isn't the greatest spot for hockey! John Dylan is doing fairly well. He started preschool this week and is making new friends. He is getting taller all of the time and is really turning into a big boy! The visit with Dr Bonnemann went well. the contractures in John Dylan's legs got significantly worse since October....from 18 degrees to 38 degrees...and that was frustrating for us. But over all his health and weight are looking fine. He is still having some issues with his bowel control...so we are going to continue to work those issues out. Hopefully we can come to a solution soon. Thanks for checking in on us!Keep us in your prayers as the school year has started and that makes for a busy time for the whole family! Jamie<hr><P> <P><i>2006-08-12</i>: by Jamie<p>Hello everyone. I have been informed that is has been a month since I updated this page:) Sorry!:) John Dylan is doing fairly well. We are still having problems with his bowel control and are hopeing that with a slight change of medication we can help him out some. He is doing very well other wise and is looking forward to the start of DD PRe School the end of the month. Other news is that we will be traveling to Philadelphia Wednesday the 16th of August through August 20th. Please pray that the flights go smoothly, the Dr's have wisdom and that the conference will be extremely helpful for all who come. The last bit of news is that John Dylan has been selected for an interview on the MDA telethon labor day weekend. This will only air on the local station...but it is an honor to be chosen to represent the MDA. They are helping us out with a manual wheelchair and they also fund the research on Ullrich CMD. VERY IMPORTANT things for us. Love, Jamie and John Dylan<hr><P> <P><i>2006-07-12</i>: by Jamie<p>Hello everyone, John Dylan is doing well. We have just ordered a spare wheelchair for John Dylan. It is a red manual wheelchair, and will really help us out when we can't take the suburban or if the wheelchair is not running properly. We have quit bracing John Dylan's legs at night as they are causing him too much pain the next morning. I am hopeful that his legs will not continue to contract with the loss of good stretching in the night. He is growing and getting taller all of the time. We are excited to go back to Philadelphia in August for the Ullrich/Bethlem conference. It is always fun to see the other kids with Ullrich and to get the latest information on the disease. Thanks as always for checking in on us! Jamie<hr><P> <P><i>2006-06-15</i>: by Jamie<p>Hello everyone, things have been hectic around here. John Dylan has learned how to ride a tricycle and reall does well in our drive way and in the house. He thinks he is big stuff. He is also growing as he is 28 pounds and 2 ounces now! We are excited to gain 1 pound and 5 ounces from his 4 year old check up in February. He has also learned how to "Swim" by himself in a small circle floaty. He really is growing up too quick! While John Dylan is learning all of these new skill he is also wearing himself out and has more bumps and bruises to prove it. In fact he got 3 stitches today as he tripped and split open his cheek on a table. He is doing well and told me thanks for the stitches as he is like his friend Colin now. So I guess he is no worse for the wear. Talk to you all later:) Jamie<hr><P> <P><i>2006-04-13</i>: by Jamie<p>Hello again to you all. We are doing well and managing to stay fairly healthy this year! John Dylan is seaming to get taller all of the time and he may even be putting on some weight. I think he has hit the 27 pound mark...and we are glad for that except for when I have to carry him for a long time. He is doing very well in school and loves to sing songs to me. They are nice but have no end....:)He is learning to write his name now and does pretty good with the Jo part...the h is a little hard to discren, but it is not bad for 4! Thanks for checking up on us! Jamie<hr><P> <P><i>2006-03-31</i>: by Jamie<p>Hello everyone, things are going very well around here. John Dylan is miraculously back in pull ups. We are thrilled and know that it is an answer to prayer. We went to see a Dr about the bowel problem and they had no suggestions for us. They could not explain it and just told us to keep trying. Well John Dylan has been back in big boy underwear for over a week without an accident. Thank you for praying!! We just got back from visiting my parents in San Angelo TX and John Dylan caught 2 fish with grandpa. That was a lot of fun for him. He is really growing up, and we are all enjoying avery minute with him. Thanks for checking in on us every now and then. Love Jamie<hr><P> <P><i>2006-03-10</i>: by Jamie<p>Hello everyone, I hope all of you out there are doing well. WE are keeping quite busy areound here, but are enjoying the warmer weather!! John Dylan had his 4 year old check up recently and weighed in at 26 pounds 10 ounces, and is aomewhere around 40 inches tall..it is hard to measure as he can no longer straighten out his legs. He appears pretty healthy. He is still struggling with his bowel problems, and I hope to get to the root of them. But in other areas he is doing quite well. HE is starting to write letters and say their sounds and really loves to "write"me notes! He is also still really into horses and is learning some of the different types out of a book we have. We are starting the application process for a service dog for him and he really wants one to "do all the things I want him to do"and to "be strong for me". HE doesn't realize it is a long process and we will be lucky to get him approved for one and get it within the next 2 years. Oh well we are all excited! Thanks as always for checking in on us. Jamie<hr><P> <P><i>2006-02-20</i>: by Jamie<p>Hello, everyone! John Dylan is now 4 years old and VERY independant! He is going to school 2 days a week and is starting to learn his letters and sounds. It is so cute, and he loves his teacher Mrs Highsmith. I finally updated my history and am going to update some photos soon. Lori has graciously offered to help me learn how to do that! Horray!! John Dylan is having some problems with his bowel movements. He tells us that his hook is broken and he can no longer hold his poop. We are praying that he has not lost the ability to go in the potty and are going to set up an appointment with Dr Fahl if he continues to have problems. I would appreciate any prayers on this matter:)So would John Dylan as he hates to weat a pull up instead of his underwear. Thanks again for checking in on us! JAmie <hr><P> <P><i>2006-01-24</i>: by Jamie<p>Hello to everyone.....sorry it has been so long since we have posted. The house is great and John Dylan is turning into a new person.....very independant due to the new freedoms the house allows. One new thing is that his grandpa made some stairs to get up into his bed. John Dylan loves the ability to get into and out of bed on hiw own. He is now riding the bus home from school on the WEdnesday that he goes and thinks he is hot stuff. He can maneuver on and off the big lift with great skill. He also loves to cruise around in his wheelchair while his brother and sister ride their bikes on our new drive way. They draw tracks to follow and spend hours out their driving around. This new house and land are such blessings for our family. They are truly what we needed. Thanks JB!!! and everyone who helped us:) Jamie<hr><P> <P><i>2005-12-27</i>: by Jamie<p>Hello everyone, We made it into our new home on December 14th. The computer was just up and functioning a couple of days ago. The house is great and we are getting adjusted to finding our things in new locations! John Dylan loves being able to drive in the house and has discovered the light switches. He loves to go around the house a turn on and off the lights. He also enjoys helping me cook in the kitchen. (We have an overhang area where he can pull up and help me or play while I cook). He loves his new room as do I. We can park his wheelchair to charge in there and it is rigth next door to my room so the nightly trips to turn off his pump, or readjust his "super nose"are much less hassle for me. It is also nice that he has his own little potty which I am hoping he will grow into soon! Thanks for checking in on us every now and then. Love, Jamie<hr><P> <P><i>2005-12-06</i>: by Jamie<p>Hello all, We are planning on moving into our new home next week and are very excited. John Dylan likes his new room and his little potty. (we got him his own toilet that is VERY small...hopefully he can use it on his knees for a long time to come....and no more dumping and cleaning a separate potty chair for mom Horray!!!) John Dylan has started back on his laxatives and is back to big boy pants again. He is also on a new formula called Peptamin. He seams to be growing again, not sure if the weight is following, but he is catching up with Noah in height! We are in the process of ordering new switches for his wheelchair as the old ones keep breaking and popping off. These new switches will be easier to operate and instead of glueing on they will be attached with screws! Thanks for checking in on us! Jamie<hr><P> <P><i>2005-11-13</i>: by Jamie<p>Hello everyone, John Dylan is doing very well with his new Bi PAP machine. He sleeps with it and it helps him to breathe. After starting on this machine he is now eating much better. I don't understand any connection, but I am not complaining. Hopefully we can get a little more weight on this boy! I also added a friends page...that has a couple of pictures of the friends we made at the Ullrich conference in Philly. I hope to add our pictures to the mix when we get a little more time Things are very hectic as we are in the final stages of biulding our house that is handicap accessible. It will be great for John Dylan to drive around in the house, and will even have a little toilet that hopefully he can use on his own. Thanks for checking in on us! Jamie<hr><P> <P><i>2005-10-23</i>: by Jamie<p>Hello from Philly! We had our Ullrich/Bethlem Myopathy conference yesterday and it was great. I loved meeting all of the Ullrich families and "Fitting in". John Dylan had a big time with all of the other kids and reall liked the girls (Robyn and Gillian). I am going to try and add a page of all of the Ullrich friends we made. Dr.Bonnemann was great as always. We were able to come up with some solutions to our button problems on our wheelchair and some ideas for the contractures on John Dylan's elbows and knees. We have also decided to go ahead with the breathing apparatus except we will start with CPAP first as it is easeir to adapt to, and then move up to BiPAP when John Dylan has more CO2 retention problems. We also found a mask called Nasal Aire that we are going to try before we try the mask that goes over the entire nose. Thanks for praying for our trip. It is going well. Love, Jamie <hr><P> <P><i>2005-10-16</i>: by Jamie<p>We got the results of the sleep study back and they are not so great. John Dylan has episodes of hypopnea....very shallow breathing at night. While it is not dropping his oxygen levels significantly now, they are concerned that they will in the future. The Dr recommended that we start John Dylan on BiPAP....Bi-level Positive Air Pressure. This is where you wear a mask at night to help you breath. It will blow in your nose and fill your lungs up for you so that you can sleep without working so hard to breathe. We are not sure whether to start this therapy now or to wait until it affects his oxygen level. We will discuss this with Dr Bonnemann at CHOP next week. Please keep us in your prayers. Jamie<hr><P> <P><i>2005-10-07</i>: by Jamie<p>Hello everyone, we are rounding out the year with our annual sleep study, renal ultrasound, EKG and echodardiogram, and scoliosis screen. So far the EKG and echo came back fairly normal. The sleep study Dr. will have the results for us on Tuesday and the scoliosis screen will be in the near future. Please keep all of us in your prayers as this time of year is very busy and stressful. John Dylan is currently struggling with constipation and we are going to start a new treatment plan to try and prevent the chronic constipation problems we have been having. Pray for the Dr to have wisdom. Thank you for checking in on us.<hr><P> <P><i>2005-09-18</i>: by Jamie<p>Hello everyone, John Dylan is really enjoying his new school and is working up to riding the bus home. He only goes to school on Wednesdays but is catching on very quickly. He is really struggling with constipation issues...we are switching up his medications in order to help him to get everything out like he should. Please keep that in your prayers for us. It is difficult to watch him struggle to do the most basic bodily function.....hopefully we can reach a solution that works and is somewhat healthy for him. He appears to be growing some and we are glad for that improvement. His tube is starting to grow another granuloma...so we will have to silver nitrate it again soon, but hope to put it off for a little bit longer. Thanks as always for checking in on us. Jamie and John Dylan<hr><P> <P><i>2005-09-07</i>: by Jamie<p>Hello all, Time has really gotten away from us around here. John Dylan had a good check up at the cardiologist yesterday, and he is enjoying school. Our house is coming along and John Dylan is excited about being able to use his wheelchair in the new house. His contractures in his arms are getting much worse lately, hopefully we can get some information when we got to Philadelphia in October that will help us to deal with these latest developments. Thanks for checking in on us. Jamie<hr><P> <P><i>2005-08-19</i>: by Jamie<p>Hello everyone the start of the school year is very exciting for us. John Dylan will be attending the D.D. Preschool program at Columbia school on Wednesday mornings. He will get therapy while he is there, and then the therapists will come to our house for therapy on one other day of the week. This is great because our insurance only covers $1,000 of therapy a year. (about 8 visits). The schools are also going to help pay for us to go and see Dr Bonnemann at CHOP in PA. We are very excited for this opportunity to meet other families with Ullrich. This year has already started out with a mystery illness that has gone through John Dylan, and Noah. They present with a high fever and headache, no other symptoms appear until the fever is gone and then they get a rash...Kelsey has a headache today...hopefully it is a fluke. Thanks for checking up on us! Jamie <hr><P> <P><i>2005-08-08</i>: by Jamie<p> The srugery went well! Thanks to all of you who prayed for us. John Dylan did well. He was Very grouchy when he awoke from the anesthesia and proceeded to cry for the next 45 minutes and even told the Dr to "go away" and that he was "not his friend anymore". It was a relief when we finally left and then he was his normal happy self. While getting this repair done he also got a new tube in the process it is a MIc-E button instead of a Bard button. The advantage of this new button is that we can change it ourselves....the disadvantage is that it is much larger than the Bard. We hope that this is the last time we will have to do this and the tube site will heal dry and quickly. Thanks for checking in on us:) Jamie<hr><P> <P><i>2005-07-20</i>: by Jamie<p> Hello, John Dylan is doing pretty well lately. He looks very healthy and is getting taller all of the time. His g-tube isn't doing so well...in fact we have scheduled a surgery for August the 8th to remove the damaged tissue around his g-tube and hopefully stop the bleeding and painful oozing from the site. While John Dylan is under anesthesia we will change out the tube from a Bard button to a Mick-E button that we can change ourselves and save us trips up to Albuquerque so often. We will continue to keep you all posted. Thanks as always for the prayers and keeping up on us:) Love, Jamie<hr><P> <P><i>2005-07-07</i>: by Jamie<p>Hello everyone. We are all doing pretty good around here. John DYlan has hit 28 pounds and is doing much better with his constipation problems. I think that switching him from milk to soy has made a huge difference for him. His tube site is still giving us fits though. It simply will not heal up. It is always oozing and bleeding and is painful to the touch. We are going to try and see a pediatric plastic surgeon soon to see if he has any suggestions....as the 4 ointments and the silver-nitrate treatments are not working. I hope that there will be an easy-non surgical treatment for this problem. We will keep you all posted:) Thanks for checking in on us! Jamie<hr><P> <P><i>2005-06-18</i>: by Jamie<p>Hello, John Dylan weighed in at 26 pounds and 13 ounces! We are excited. This puts him in the 50% for height and the 2% for weight! This is the first time he has been on the chart in a very long time. He is now on soy milk, and cream....and we have increased his feeding amount by 50%. His tube is still not healing well, and we are picking up a new perscription in the next day to 2 to give that a shot. Hopefully we can clear this thing up soon! With the weight gain it is hurting John Dylan's knees to "walk" on his knees...as a result he is spending more time in his wheelchair. It looks like we will get in our new house in the nick of time for him to drive the wheelchair in the house. Love, Jamie <hr><P> <P><i>2005-06-09</i>: by Jamie<p>Hello, John Dylan has gained weight after we increased his nightly feedings. He now weighs in at just over 26 pounds! His tube is still acting up, but my pediatrician is having us try washing it with 1/2 strength peroxide and then coating it with Butt paste. Yes that is the real name of it...and Kelsey and Noah think it is funny to say butt paste, as they aren't normally allowed to say that word:) So we will see if it helps....if not we will try something else. Glad to be finished with the silver nitrate for a while though. Thanks for keeping us in your prayers! Our house will get started next month....it will be really great as John Dylan is spending more and more time in his wheelchair lately, and in the new house he will fit in it much better and can drive in the house:) Love, Jamie <hr><P> <P><i>2005-05-18</i>: by Jamie<p>Well we made it up and back from Albuquerque easily. Dr. Fahl feels like it was not infected simply a large granuloma...(growth of extra stomach lining on the outside of the body due to the feeding tube) The solution is easy enough....but emotionaly hard to do. I am to apply silver nitrate to the tube twice a week until it burns completely off. It is not difficult except for the fact that John Dylan screams his head off and cries for 45 min afterwards due to teh burning and itching sensation it creates. Dr. Fahl also noted that John Dylan had lost weight. WE are continuing to work out formula issues....but hope to see him putting on some more weight soon.:) Thanks for your prayers and for checking up on us! Jamie<hr><P> <P><i>2005-05-13</i>: by Jamie<p>Hello everyone, John Dylan is having a hard time with his g-tube. It got infected about 2 weeeks ago, but after 9 days of topical antibiotics, and 1 week of oral antibiotics it is still infected. We are going to albuquerque to see DR. Fahl and hopefully he will have some answers and some help for that sore tube site. Please keep us in your prayers:) Jamie and John Dylan<hr><P> <P><i>2005-05-03</i>: by Jamie<p>Hello everyone, I hope that you are doing well. John Dylan is getting taller all of the time he is now 38 inches tall and that puts him in th 43% for height! He is still not gaining weight and is at 24 pounds 8 ounces. We are really trying to make him get to the 1% on the chart....but no real progress in that direction. John DYlan is a pro at using the potty which is a huge answer to prayer. He thinks he is such a big boy now in his underwear! Thanks for checking in on us! JAmie<hr><P> <P><i>2005-04-21</i>: by Jamie<p>Today John Dylan word underwear for the first time! He did great only 1/2 of a pee on the floor, but then he stopped and hollared for me to take him to the potty:)! After he pee'd I asked him if he wanted a cookie, and he told me no that he wanted me to clap for him. I gave him the appropriate round of applause, and he then proceeded to bow and "walk" out of the room:) I couldn't help but laugh! I hope you laugh too at the picture of this little guy bowing after his major accomplishment of peeing in the potty:) Have a great day! Jamie and John DYlan<hr><P> <P><i>2005-04-10</i>: by Jamie<p>Hello everyone, thank you for praying. My friend is doing much better and is now moved to a re-hab hospital for 2 weeks. Please continue to pray for her complete healing. John Dylan is doing well. He is really talking a lot and getting bigger. This means that he is in his wheelchair more, but he is a pro at maneuvering it! Please pray for us to be able to start our new home soon. We are planning on building a house that is handicap accessible, and will move John Dylan's room closer to ours. It has been a long process, but we are hopeing to start this month. Thanks! JAmie<hr><P> <P><i>2005-04-04</i>: by Jamie<p>Hello, everyone, it has been a tough week. A dear friend on mine is in the hospital with a brain bleed, and she is not doing well. Please pray for her and her family, she has a husband and 3 boys at home. John Dylan has grown and this has worsened his contractures. We are implementing a more rigerouse stretching routine in hopes of keeping up his range of motion. Thanks for checking in on us! Jamie<hr><P> <P><i>2005-03-25</i>: by Jamie<p>Hello, we just spent a week in Estes Park Colorado, and had a great time playing in the snow. John Dylan loved the horse back riding we did, as well as the sledding. Noah surfed down the slopes on his sled, but did a great job at it. Kelsey and Noah loved to climb the rock walls at an indoor climbing arena. John Dylan loved to make tracks in the snow with his wheelchair. It was a nice relaxing trip. Just what we needed! Thanks for checking up on us:) Jamie<hr><P> <P><i>2005-03-12</i>: by Jamie<p>Well Noah and John Dylan now have strep throat! Yuck! Hopefully this will be the last round we have with this virus this year! We are keeping busy and are trying a new supplement for John Dylan to take in his tube. Hopefully it will help him to grow a little better and will provide a more rounded source of nutrition instead of only milk. We are goign to give it a shot for a few weeks! I'll keep you posted! Jamie<hr><P> <P><i>2005-03-04</i>: by Jamie<p>Hello all, it has been a busy few weeks, Kelsey and Noah both had strep throat, but John Dylan managed to stay well. They both finished their antibiotics about 2 days ago and Noah has another fever and John Dylan now has a fever as well. I am praying that it is now strep for either of them, and that a good weekend's rest will be the cure that they both need. John Dylan is really growing well and is now wearing size 3 clothing. It is so nice to see him looking so good. HE is on a formula of whole milk, cream and powdered milk. It is much less expensive than the pediasure was and he is tolerating it quite well. Thanks for checking in on us! Jamie and John Dylan<hr><P> <P><i>2005-02-24</i>: by Jamie<p>Hello, things are going very well around here! John Dylan passed the 25 pound mark!!! Horray! He is now officially 25 pounds 1 ounce! We are very glad to see that he is growing. We are currently working out which school he will go to for preschool next year. This will be where he can get therapy and have fun through the D.D. Preschool programs offered in the public schools. They are concerned that he is so bright, yet requires so much help physically. I think that they will get over it once they meet him, and then we can come to an agreement as to how to work this school thing out! Thanks for checking in on us! Jamie<hr><P> <P><i>2005-02-15</i>: by Jamie<p>Hello, John Dylan is now 3! We are so glad he is growing up so well. His latest developments are the new curls that have appeared on the front of his head. They are adorable. We will have official 36 month statistics on Friday as to how tall and how much he weighs, but I know he has just outgrown his shoes:) He is very bright and testes 4 months ahead on his fine motor skills, excluding strength tests. He is talking up a storm and always saying things that make me laugh. Today he asked me to clean the peanut butter and jelly out of his ears.....aka wax.:) He is doing great in his wheelchair and will shoot you with his web blasters if you stare at him too long:) I just smile....it cracks me up:) Thanks for checking in on us! Love Jamie<hr><P> <P><i>2005-02-08</i>: by Jamie<p>Hello everyone, we just updated out site with pictures of John Dylan's hypermobile joints. They were and are the most obvious symptom that John Dylan has, and I have never seen anything quite like it. I thought that they may be helpful to those of you who are looking and wondering about your child. I hope it helps! Jamie<hr><P> <P><i>2005-01-20</i>: by Jamie<p>Hello everyone! We just started having John Dylan sleep with 2 knee immobilizers on and it is really helping him to straighten his legs out better. This bracing of his knees will help keep his legs straight better, as one charactoristic of Ullrich CMD is the development of contractures (where they can't straighten out a joint). Potty training is still a no-go. After speaking to other parents of Ullrich kids, I will just give it more time. They were all potty trained closer to 4...allthough one is 6 and still unable be potty trained. The main hold out is that the child can not get dresses or undressed or on and off of the toilet independantly. We are working though this slowly. Please keep it in your prayers We are in the porcess of building a house that is handicapp accessible and that land was approved through zoning yesterday! We are very excited to build a hous with John Dylan's room closer to ours as I still get up to help him get back on his pillow in the middle of the night. We will keep you posted on the house as it comes along. Please pray for wisdom in the planning of the house as well as for things to move smoothly. Thanks! Jamie<hr><P> <P><i>2005-01-01</i>: by Jamie<p>Hello everyone, It is good to hear from those who sign the guest book. My e-mail is jamiecully@hotmail.com if you want to contact me personally. We are doing well and I am happy to report that John Dylan is now using the wheelchiar in our house. He does not use it all of the time, but is skilled enough to make it down the hall and around furniture without damaging anything. Noah, his older brother, is not so great a driver though. While Noah is not "allowed" to drive or play with the wheelchair, he decided to ride on the back and drive from over John Dylan's shoulder. This landed both of them in a large bush and trellis. Needless to say mom was very upset and it took me forever to untangle the metal trellis from around the tires and wiggle the chair out of the whole mess. Neither were hurt, and I had to remind Noah that John Dylan was to be the only driver of his wheelchair! And here I was worried about John Dylan! We are working on getting a larger car seat for John Dylan and will go up to Albuquerque this next week to see a Dr. and see if we can get a grant from the hospital in albuquerque for some more equipment. Hopefully we can get him a car seat, and possiblay a seat for sitting at the table. I hope that you all are diong well. Love Jamie<hr><P> <P><i>2004-12-17</i>: by Jamie<p>Hello everyone! John Dylan is doing great learning to drive his wheelchiar. He takes it to the store and to church and is able to get in and around crowds of people without hurting anyone! We are working our way up to in the house, as it is more difficult for him to maneuver in smaller spaces that require backing up, and 3 point turns. I bet he will have them down pat by the time he is 3. We are on our way to Mexico to spend the week before Christmas on the beach. We are hopeing to relax and enjoy spending time being lazy! Wishing you all a Merry Christmas! Please sign our guest book if you get a chance. I would love to hear from you. Jamie<hr><P> <P><i>2004-12-04</i>: by Jamie<p>John Dylan's "hotrod" is here! We were able to pick up the wheelchair on November 30, and he has really gotten good a driving quickly. We have "walked" around teh block twice and have played chase in the yard. John Dylan can even park his chair in the garage if we set the speed real slow. John Dylan loves hiw "wed weelchaiw" and is a natural...in fact he ran away from me for the first time today with a mischeiveous grin! We have not venture indoors yet, but will probably tackle the mall first! We will work our way up to smaller spaces, after all he is 25 inches wide, 40 inches long and 285 pounds in his new wheels! Thank you so much for all of your prayers and encouragement in this matter! It is really appreciated. Love, Jamie<hr><P> <P><i>2004-11-11</i>: by Jamie<p>Once again the arrival of our wheelchair is delayed. It has still not arrived in the United States, so we are thinking it will not get to us until the week after Thanksgiving. Maybe it can arrive sooner and we can show it off to the grandparents who will be here for Thanksgiving, but if not out Christmas pictures will have the chair in then I'm sure:) Our Sleep study went well and we are glad to say that our sleep paterns seem normal and we will repeat the test in 18 months. John Dylan is doing well in the weight department and is really truning into a big boy! Thank you all for your prayers and checking up on us. Jamie<hr><P> <P><i>2004-11-02</i>: by Jamie<p>Hello all, It is the first week of November and now the wheelchair should be here the week of Thanksgiving. I am excited, but feel like it will never get here. Our latest trip to Albuquerque was pretty uneventful, but the urologist said that things were no better, but no worse so he would like to space his tests furthe out to once a year for the ultrasound and once every 2 years for his VCUG tests! Horray! John Dylan is continuing to gain weight and is now just over 24 pounds! We are glad for that! We are currently working at getting equipment for him such as a bath chair, car seat, and a stander. These items are not cheap, so please keep us in your prayers for wisdom as how to get our hands on these items! Thanks for checking up on us! Jamie<hr><P> <P><i>2004-10-14</i>: by Jamie<p>Our wheelchair is ordered! It should be here the first week of November! We are very excited. We also were able to find a lift that will work in the back of our suburban, so we will not need a van.....(yet). We are so excited to see how this wheelchair will open up doors for John Dylan and his independance. Thank you all who prayed. Our insurance agreed to pay for every line item that we requested, which is a true miracle from God! Love you all, Jamie<hr><P> <P><i>2004-10-09</i>: by Jamie<p>John Dylan is doing very well, we are hopeful that his wheelchair will be ordered early this next week, and are excited about what this equipment will allow John Dylan to do. We are also expecting his sleep study results this week although we are pretty sure that he is able to breathe fine while he is sleeping. This test was simply a precaution, to get a baseline for future reference. Thanks, as always for checking up on us! Love, Jamie<hr><P> <P><i>2004-09-24</i>: by Jamie<p>THE WHEELCHAIR IS APPROVED! God has worked a miracle on our behalf and John Dylan will be getting exactly the wheelchair that he needs and that we wanted. THANK YOU FOR YOUR PRAYERS and SUPPORT! LOVE, Jamie<hr><P> <P><i>2004-09-17</i>: by Jamie<p>Hello everyone and thank you so much for your prayers! We are making some progress on the wheelchair, in fact the medical director of our insurance is set to call Dr. Bonnemann from the Children's Hospital in Philadelphia do discuss the need for this wheelchair. I know Dr. Bonnemann is supportive of this as he wrote a letter stating the need for insurance. Hopefully this will be all we need to get John Dylan rolling! Also, we have added a guest book and a e-amil link so you can contact me or sign in that you visit this site. I would love to see who all pops in every now and then to keep up to date and pray for us! Love, Jamie<hr><P> <P><i>2004-09-10</i>: by Jamie<p>Hello everyone, we got word from our insurance that they have denied our wheelchair request for the third time. We were very disappointed, that they do not see the need for our son to have the independance that other two year olds have. We are going to re-group and send in yet another appeal. I hope that they will be able to look past the numbers to see the little boy who has to rely on others for all of his mobility instead of being able to make some choices for himself. They insist that a manual wheelchair is the only option, but that leaves John Dylan at the mercy others to take him where he needs to go and to lift him in and out of the chair so that he can play with his friends. Please pray for wisdom on our part and for us to find someone to represent us legally so we can fight some more for this chair for John Dylan. Thanks! Jamie<hr><P> <P><i>2004-08-24</i>: by Jamie<p>Hello, everyone! we just got back for a fantastic trip to Philadelphia to meet with Dr. Bonnemann (the Dr. who diagnosed John Dylan with Ullrich, and a leading specialist on Ullrich/Bethlem myopathy). John Dylan has a new dominant mutation of Ullrich and Bethlem Myopathy...which makes him very special. He is the only one with both types of these Collagen VI muscular dystrophies. We met some great people with children that also have Ullrich and were encouraged to keep stretching John Dylan and working on his learning to walk. On a seperate note, the wheelchair was denied again. We are dissapointed, but the insurance does not see that a 2 year old may need a power wheelchair. We are not giving up, Dr. Bonnemann said he would write a letter of medical necessity for us, and we will keep on asking until they approve of it. Thanks for all of your prayers and support! Love, Jamie <hr><P> <P><i>2004-08-11</i>: by Jamie<p>We are still waiting for news on the wheelchair. Hopefully we will hear something soon. John Dylan is gaining weight! He is now on a new medication called REGLAN and it increases the speed in which food is digested, and he is eating very well now. He tells me that his tummy is "burping" and that he is "hungy". We are very glad to see him growing and eating without a battle. His unofficial weight is now 24 lbs! Almost on the charts! Thanks for praying! <hr><P> <P><i>2004-07-22</i>: by Jamie<p>Hello, this is a post for all of my prayer warriors out there. Please pray that the insurance company will approve our request for a power wheelchair with a lift for the seat. We really feel that this is the right chair for him. We sent in our appeal this week, and hopefully will hear something in the next 2 weeks. Thanks! Jamie<hr><P> <P><i>2004-07-18</i>: by Jamie<p>Hello! John Dylan was able to take his first steps in the baby pool. He didn't need us to hold his hands or anything! It was so exciting to see him standing and walking on his own in the pool. This was the first time we have ever watched him stand or walk. Kelsey and Noah both were yelling and laughing at seeing their baby brother take his first steps. We are looking into doing all of our therapy in the pool until it closes for the winter. Glad to share such good news with you all.<hr><P> <P><i>2004-07-05</i>: by Jamie<p>Hello, sorry my site was down for a few days. The latest news is that the request for John Dylan's power wheelchair was turned down. This was based on his age. The insurance felt that he could use a manual wheelchair instead. We are going to appeal, based on the fact that John Dylan simply does not have the hand strength to propell a manual wheelchair and that he can not get in and out of a wheelchair on his own. Please pray that the insurance will allow us to get the wheelchair that John Dylan needs. It is now between 2 possible wheelchairs that have the functions that we are requesting. The Permobile which was denied and a Pride Quantum Dynamo chair, which would be custom made to lower to the floor allowing easy access for John Dylan into and our of the chair independantly. Both chairs are power, and so the insurance is going to have to reconsider their stance on a 2 year old "driving" a wheelchair. Please remember to pray for them to see the need of our son. Thank You all! <hr><P> <P><i>2004-06-01</i>: by Jamie<p>Hello, today we had an appointment with our orthopedic specialist, and he said that the AFO's we tried were not working, and to not use them anymore. This is a little dissapointing for me as I had hoped they would be the "key" to John Dylan being able to stand and walk by himself. I knew after 4 weeks of actively trying the braces that they were simply to cumbersome for him to use. The good thing is that these braces are very expensive and we will not have to keep getting them every 6 months or so. He can wear regular shoes and does not have to wrap his legs in plastic everyday. Thanks for checking on us! <hr><P> <P><i>2004-05-16</i>: by Jamie<p>Hello all, we are still waiting approval from insurance for John Dylan's wheelchair. It is on the UCMD page under links and permobile. It is a really neat chair and should really improve his independance. It is the permoblie playman if you want to look it up. Please pray that we can get approval and the chair will get here soon. Thank you all!<hr><P> <P><i>2004-04-30</i>: by Jamie<p>Today we had our kidney reflux test and things were great. John Dylan was healed from his reflux and the Dr. said he could get off of his profalactic antibiotics! Horray! We go for a follow up in 6 months! Thank you for all of your prayers! His bladder and kidneys look great for the first time ever! Love Jamie<hr><P> <P><i>2004-04-24</i>: by Jamie<p>John Dylan got fit for his AFO...ankle foot orthotics about 10 days ago, and is learning to use them. They really slow him down now, but we are hopeing that he will learn to use them and they will improve his chances of learning to walk. They will also protect the arches in his feet as well as help his ankles to stay in the correct position. Thank you for your prayers! Jamie<hr><P> <P><i>2004-04-13</i>: by Jamie<p>John Dylan got his Genie PEG button in his stomach yesterday. It is great....I think it will be a big improvement over the PEG tube which was in place for the last month. He reached 22 pounds now and is really doing well. Thank you all for your prayers!<hr><P> <P><i>2004-04-05</i>: by Jamie<p>We have an official diagnosis! Today Dr. Bonnemann, from The Children's Hospital of Philadelphia, called and let us know that John Dylan has Ullrich Congenitial Muscular Dystrophy. It is good to finally know what we are dealing with for sure, and were encouraged that there are things we can do to help John Dylan along, like stretch him, and follow his pulmonary function regularly. Thank you to all who prayed for us to find out what was wrong. While we were hopeing for something else, we now have a path to follow and great Dr's to help us along the way! Love Jamie<hr><P> <P><i>2004-03-31</i>: by Jamie<p>Things are going well here. John Dylan is now up to 21 lb 11 oz...which means he gained 6 oz this month! He got fit for AFO or ankle foot orthotics last week and hopefully these braces will make it easier for him to learn to walk. His PEG tube in his stomach is healing well and on April 12 we will get it shortened into a button. He has grown to 34 inches and is talking up a storm. Thanks for checking up on us:) Jamie and the Cully Crew<hr><P> <P><i>2004-03-19</i>: by Jamie<p>John Dylan got fit for a permobil playman wheelchair. He did very well driving it all over and loved it. He figured it out very quickly and loved to make it go fast! The Dr. for his leg braces felt the braces that would benefit him the most would be too heavy for him, so we are trying smaller braces (that go up to his knees) but the Dr. said they may not do much good. I figure that they are worth a try. We are going to use night braces to straighten his legs out because his hamstrings are getting pretty tight and he is having a hard time sitting up with them so tight. Thanks for keeping us in your prayers.<hr><P> <P><i>2004-03-12</i>: by Jamie<p>Things here are hectic, but we have big things in the works. John Dylan is getting fitted for a power wheel-chair, and braces for his legs on March 18th. Please pray that all goes smoothly and insurance will agree to help with this equipment. His g-tube is still a little sore, but is healing pretty nicely. Thanks for checking up on us, we'll post again soon!<hr><P> <P><i>2004-03-05</i>: by Jamie<p>We have our g-tube! Everything went unexpectedly smooth. During the morning John Dylan didn't even ask for food or water all morning. That made us all happier! The surgery was at 2:00 and it went off without a hitch. He is recovering well and is even playing and walking in his walker. Thank you all for those of you who took the time to pray for our proceedure. God was faithful to answer your prayers!<hr><P> <P><i>2004-02-29</i>: by Jamie<p>Just got back from a wonderful vacation to Puerto Penasco, MX. John Dylan learned to say Hola! and Gracias! I guess that makes him bi-lingual now! We are getting a g-tube placed on Thursday, please keep us in your prayers! Soon you won't see that yellow tube on my face:) That will be nice! <hr><P> <P><i>2004-02-14</i>: by Jamie<p>Today is John Dylans birthday! He is doing well and we are celebrating at the Harlem Globtrotters! He is getting a tricycle that has a handle so I can help push him, but we think it will be great excercise for those little legs. It will also be fun to ride bikes with his older brother and sister.<hr><P> <P><i>2004-02-13</i>: by Jamie<p>Things are going well here at the Cully household. John Dylan will be 2 tomorrow and is doing well. We have currently scheduled a g-tube placement for March 4, and are hoping that will go smoothly. John Dylan is cruising everywhere in his gait trainer and is loving all of the independance that gives him. Thank you all for your prayers and support! Love, The Cully Crew.<hr><P> <P></form> </font>
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