Sounds like your daughter has had her fair share of low episodes! How scary for her husband and you. My husband is so stubborn about testing--he drives me nuts! "Oh, I know where I'm at." Since when did he acquire that amazing skill? I've proven him "wrong' many times. Lilenquist--that was the dr. Kev went to! I couldn't remember his name to save my life! What a same world, eh? Or even better, what a small world??=)
I didn't think you were being negative. I also didn't want you to think that I was sounding, um, idk--like where we went was better. I said something about being told that it should be almost healed by 1 wk. post op. I was just worried that I had been duped and that our beach trip would have been harder on Wyatt b/c he'd have to hang with me, instead of at the beach with all the cousins!! We were lucky (which is a big reason why we went to Cincy) to have a dr. who does most of the biopsies for the PTC124 trials--so she knew what Dr. Wong wanted and was familiar with doing these on dmd boys. The bandage comes off tomorrow, so we will see the incision for the first time and then I leave him for 4 days=( So, I hope all is well when we unveil tomorrow!! Glad to hear Baylor is doing great! I will talk to you when I get back to Houston! Jill
I don't know if Wyatt's was done better than Baylor's--who knows as neither of us have done this before, huh??!! I just hope both of them heal properly and without infection or any more pain. Wyatt has been getting around really well since Friday--I was gone the whole day and my girls watched him and said he just started walking and playing around. Now, the day before he wouldn't walk anywhere; I had to carry him and all he did was color or watch tv. I think he has me pegged. What do you think?? But in my defense, he was only one day post op so he I do think he was really sore. Anyway....
Man of War--YIKES!! Last year (we go every summer), the jellyfish were bad--lots of us got stung. Wyatt got stung and was just screaming his litle head off, and the lifeguard told us to rub sand all over where we think he was stung (that gets the "stingers" out) and then she sprayed vinegar on it. He settled down after that, but was shaking for quite a while after that. I must say I agree that I don't like going out in water where I can't see what is in there! I usually lay in the sun and go in the water to cool off--maybe to my knees, if I'm lucky! So not sure why I like the beach--I'm not a big fan of the sand either.
Yes, my husband's was juvenile diabetes. So weird with no family history. The dr. (at "Ricks" college) said that he had had a virus, which attacked his pancreas and made him suspetible to it. We were so lucky to find a dr. in IF who was on "the cutting edge" so to speak. My sister-in-law had a friend who was diabetic and worked for this dr. and he put Kev on a base line insulin and then gave the fast acting insulin to take an hour before he ate to counteract the amt. of carbs. That was new thinking 17 yrs. ago and man has it made life so much easier! I just wish I could get him to like the pump! He has had 2, uses them for about 2-3 mos., then he is done with them. Does your daughter use a pump? I am with you on the that is a complicated, tempermental and bugger of a disease!! We've had our fair share of "low's" over the years, and it is not fun at all!! Last year, he got really low, 29 actually, and he refused to eat anything I was trying to give him. (Very stubborn and picky even when he is low.) Luckily, my oldest heard me struggling and came down, but not before he had fallen and cut his forehead. I could not get him to stay down. So, I told her to call 911 and while she was doing that he got up and walked into our bathroom and fell00I think he passed out briefly. He fell on the tile surround on our tub-right on the corner! I mean nothing broke his fall--only that hard tile corner! I thought he was dead! It was awful! I turned him over and his eyes were opened abut blood was pouring out of his head. And still he was trying to get up. Finally the paramedics came (aatere he had calmed down--I know they thought I was exaggerating) and we took him to the hsp. He had amnesia for about 1-2 days--which freaked me out. What if his memory never came back?? Well, all was fine--after stiches in 3 different places on his face and head, a broken right knee and a broken right foot--and about 4 wks. at home!! That was some fun!! I hope to never have to endure that again! (and two of my girls had friends over to sleep, so they got quite the show!!) Such is life, I suppose!
I am so sorry about your nephews. Such an awful loss!! You are right that there is hope for our boys--I just wish we could speed things along --like say the speed of light!! Bless all of these precious boys who are living with this disease!
I am off and probably won't be have the chance to check this for 3 wks., so I will catch you when I get back and try to tell you some of the hightlights from the conference! Cheers! Jill
Thanks for all of your msgs. I am so sorry to have taken so long to get back to you--have had company for 3 wks. solid, so have had to "sneak" my online time! We flew out Tues. a.m. to Cincy and got back Wed. evening. The surgery was uneventful--thank goodness! I was so worried about him being put to sleep anyway, then you add the whole MH thing, and man, was I worried! But I was lucky to not have to argue with the anesthelogist about the whole MH thing--he was already ahead of us on that aspect. (I would have been soooo very angry with that dr.--you would think he would know about it or at least go and verify before he insulted you! I bet you were wishing you had something in hand that "proved" you right to put "Mr. Haughty" in his place!! Just thinking about it makes me mad! Like it wasn't hard enough on you already to put your baby through all that!!) He did want to do a femoral artery nerve block to help with the pain, but we opted not to do that. There was a slight risk of nerve damage so we decided not to risk it. But Wyatt keeps asking, "Why did they make my leg feel weird?? I can't 'itch' my leg." So, just above his knee and below his cut is numb. Has Baylor complained about anything like that? (Wyatt's incision is on his right, front quad.) It just makes me wonder if they did the nerve block anyway. Probably not, but who knows. Wyatt's stitches are under the skin, then steri-strips, and a clear plastic bandage with gauze underneath. This clear plastic thing is supposed to stay on for 1 wk. and then we'll take it off and are supposed to let the steri-strips fall off at will. No swimming for a whole week! I think he is pretty sore and has laid around for the most part except today he did walk around quite a bit--well, compared to the other 2 days=) Sounds like Baylor isn't 100% yet--he's 10 days post-op? Were you expecting his wound to be in better shape by now? I guess I just assumed, no actually was told that when that bandage came off Wyatt would be mostly healed. I hope so b/c we are heading to my mom's house in NC and she will watch the kids while I go to the conference, then we all head to Hilton Head for 2 wks--can't imagine the sand and salt water would be that great for an "almost healed" incision. Does Baylor still say he is sore or is it just puffy and red? Poor kids--I did feel bad to put him through that but we felt we needed more info. Hope it was worth it! I hope the puckering will subside--guys might like scars, but Mom's don't!
Referring back to 3 msgs. ago--I can just imagine the devastation you felt when Baylor starting show signs and then you got his cpk levels!! I felt the same when told about Wyatt but didn't/don't really know what to expect as I had never known anyone who had dmd--you had and knew what you were up against! Ignorance and knowledge can be mixed blessings I guess. I can't imagine playing hostess 2 days after or having the strength to stand and talk at my child's baptism! How did you do it? I guess Heavenly Father gives us what we need in times of desperation when we have to keep going despite our need to collapse! You have quite the family story. If you don't mind me asking, how old were your nephews when they passed away? That is so heartbreaking--more than one family's share, not to mention the other things/illnesses that your whole family might have also gone through. I so hope that your grand nephew will be free and clear of dmd. What a blessing that would be! That would send me over the moon to hear that my son did not have dmd!! My ten yr. old had read a book or seen a show about someone having 3 wishes granted, so she asked us individually what we would wish for and all of our answers were pretty much the same--That Wyatt and all the other dmd boys would be healed, that we would all live together forever with Heavenly Father, and that my husband (or anyone else) wouldn't have Type 1 diabetes anymore!! (Although, my oldest was a bit more clever than the rest of us--she wished that all diseases would be cured, we be together forever and for 3 more wishes!!) I got excited just thinking about having my wishes granted! I keep thinking I am going to wake from this nightmare any minute--but it never happens! I just try to not think too far ahead in the future; doesn't really work, but I try. I don't want to live in denial but do find myself counting on a meaningful treatment that will make this a manageable disease like diabetes. I can't decided if that is my way of living in denial or just trying to be positive so that I can cope?? Four days after our preliminary diagnosis, we went to Newport Beach for my brother's wedding and my father gave me a blessing that made such a difference. I cried pretty much non-stop from Monday to Saturday until I got that blessing and have had very few days since then where I "loose it." I had a friend that lost her baby boy when he was 6 mos old (something very treatable but the dr. missed it) and I remember her telling the YW (ok-I'm assuming you're LDS) how getting a blessing from her father was what pulled her through. I remember thinking how??? how do you ever go on, even with a blessing?? I didn't doubt her, but I guess I just didn't "get it" as I had never had to test it. Well, I reckon I know now and that doesn't mean I don't get sad and depressed b/c I do, but I am able to deal when I need to and save the melt downs for when I am alone and won't upset my girls. They see me sad which I think is okay as it gives them permission to grieve but they don't need all my fears and worries.
I am sorry that I wrote a durn novel--did not mean too! Just scan it and pretend you read the whole thing=) But don't worry, after Tues. I won't have internet access for until I get back on Aug. 3--so you are safe for a bit! Talk to you later! Jill ( I didn't proof read so am sure there are tons of typo's but I am too tired to reread my novel--so please overlook them;)
Thank you marla! I will definitely keep you informed about anything I hear as well. I was told by a researcher that they would need to skip exon 7 to repair Jordan's deletion. However, the doctor also said that the drug to do that would not be the first to be developed, but that once the other exon skipping drug was finalized, they would move on to the other deletions (that is a quick oversimplification, I'm sure).
I will be in Philadelphia next week, so I will let you know what I find out if you are not attending.
Deacon is doing well now. His diagnosis is what they called probable BMD. He has a hard time w/ a lot of things, but fortunately God gave me a real trooper. All of his blood work for deletions and duplications and what not came back inconclusive. And I don't know his ck level, only that it is high,but not as high as most boys w/DMD. I think your husband has got the right idea. You can't change someone else, but what realy counts is if at the end of the day, you can look back at the decisions you've made and be proud of yourself, and you've have done all you can to make a difference in the world. well we've got an appt, so good luck and keep in touch.
Marla, my son was just diagnosed with DMD and has a deletion at 8-11. I was also looking for people with children with a similar deletion, as it seems most people discuss deletions at 45-55. Have you heard anything else about the deletion that our boys have? I still need so much information. We have the DNA results, but the 1st dr. said a biopsy wasn't necessary. We have a second opinion scheduled in Phila. in august. I would be shocked if they don't want a biopsy. I don't even know my son's exact cpk level. The test just came back "greater than 1600."
I wish you the best with everything, and if you hear anything, please let me know.
Hi my name is Alicia, and I read about your little boys biopsy on Jill's page this morning.I am sorry to hear about how the annistesiologist(spelled completely wrong I'm sure) treated you. My 3 year old son Deacon had his biopsy in March,and I know how hard it is to let someone put your little man to sleep. I postponed Deacon's sergery for almost a year, and if someone would have done anything to make me uncomfortable, I would have had a hard time not walking out. I don't think people realize how hard something like that is. I am glad to hear your little guy is recovering well. Deacon's scar is on his upper front left thigh,it is totally healed now, and he even tells me he likes it now. Although I would think not being able to see it could be a bit easier. He was also bothered a lot by the iv in his foot, and freaked out some untill they removed it. Hope all goes well for you in the future,you have some beautiful photos of you family.
Hey Marla! It was good to hear from you. To answer your question, it is Duchenne that is on my husband's side of the family. I am thinking that his cousin that was diagnosed a couple of months ago may have Beckers or another type since he is in his thirties. I know what you mean about genetics being so confusing. I was a middle school sience teacher for several years and taught a unit on genetics and I still get confused on it! I basically taught how to use a Punnet square to predict the outcome of particular cross breedings of a plant, or eye and hair colors, etc. None of it was complicated and confusing. Praise God that Maleri is not a carrier and think positive that Jenni is not as well. Rhiannon is in contact with a mother that has a daughter younger than 18 and she was tested. Fortunately, her test showed that she is not a carrier.
Now I understand why Baylor was diagnosed so early - you recognized signs of MD since you had nephews with it. In our case, we had no clue. Although my husband had cousins with DMD, we did not know the early signs of it. Riley was diagnosed thanks to his pre-k teacher. We noticed that Riley walked with a side-to-side gait and that he had large calves but just thought that was his build. At school he was always lagging behind the other children when walking to the cafeteria or the playground. Teachers' most common phrase was, "Come on Riley. Walk faster Riley!" Riley's most common phrase was, "I can't!" The teachers began pulling Riley around school in a red wagon because they felt that was easier than trying to get him to walk faster. His teacher, Ellen, is head of the school's SBLC and started watching his movements more closely. Before the Christmas break she asked Rhi if it would be okay to have the school's physical therapist evaluate Riley because she felt that there was a muscle problem. Rhi gave the permission so after the Christmas break the physical therapist evaluated him and the principal immediately called Rhi to the school for a meeting. Of course, the physical therapist told Rhi that she was not diagnosing Riley but the evaluation showed symptoms of MD. She then called Riley's pediatrician for an appointment. His pediatrician evaluated him the following morning and came up with the same conclusion. She made an appointment with a specialist in Baton Rouge for the following week. His CK level was over 19,000 which confirmed the physical therapist and pediatrician's suspicions. If I live to be 150, I will never forget that day. It was honestly the worst day of my life and I have had a few in my lifetime. My youngest brother is living with a brain injury from a car accident (at the age of 19), I lost my father to a very horrible and painful cancer, I lost my father-in-law (who I loved like he was my father) to cancer, I am a cancer survivor, and I have a sister being treated for cancer at this time. As hard as it was to get through those trying times, they did not compare to finding out the diagnosis and prognosis of my precious Riley. I now see the symptoms of MD in him. Besides the large calves and side-to-side gait, he cannot climb stairs, run, jump, and get off the floor like other children can. I find that he gets tired quickly. I'm aware of it now not because I'm looking for it, because I am no longer ignorant of the symptoms. I don't know if this is abnormal, but I catch myself looking at other little boys for symptoms. I hope I don't ever see it in another child - I cannot imagine myself going up to a stranger and suggesting that they take their child to a doctor. I can just picture myself calling my husband to come bail me out of jail for someone thinking I'm a nutcase!
You know, Marla, we are so blessed for having these boys in our lives. And you are so correct, they are teaching us so many important things. Cancer put many things in perspective for me - such as how to slow down in life, to appreciate waking up, nature, friends, freedom, mostly family, and above all, God. After being cancer-free for 7 years, I once again got caught up in the fast pace of life and my job. MD has put the brakes on again! I truly believe that in all bad things that occur in our lives, there are good things to be learned from them if we open our eyes and minds to them. We are to take the bad things and learn and progress from them. Okay, now that you have read this, don't ever aplogize again for writing a novel to me because I just wrote one too! Maybe we have more than a name and MD in common! I'll save some of my yacking for later. Have a wonderful day and stay in touch!
Hey Marla! Thank you for the compliments on my family - I love them so much! My heart is heavy after reading that your 2 sisters lost a child to MD and you have little Baylor with it. I cannot even begin to imagine the pain you and your family have endured. I have three grandchildren. Rhiannon has a daughter, Reagan (Riley's big sister), and my other daughter has a son, Sawyer. Sawyer will be 5 months old on the 22nd of this month and of course, I worry that he may have MD. I don't have any sons but I do have 2 brothers and 4 nephews. Three of my nephews are my sisters' sons, one is a son of one of my brother's. I am told that the mother is the carrier and none of my brothers or nephews have MD. The strange thing is that my side of the family has no history of MD but my husband's side of the family does. Several of his cousins have died from it and they were not first cousins. We are anxiously waiting for Riley's DNA results and to hear if Cinci will accept him as a patient. If you ever feel the need to talk or vent, let me know. I'm a skilled listener! Thanks for responding to my message - it was great hearing from you. Have a wonderful day!
Hi Marla! Your name caught my attention because my name is also Marla and I have only met one other in my lifetime. Baylor is a true cutie! I'm a bit surprised that he was diagnosed so early. What symptoms led to his diagnosis? I understand your painful journey since his diagnosis. I have a grandson, Riley, that is 5 years old and has DMD. You can see pictures of him on my daughter's (Rhiannon Traigle) site. He's a real cutie too. I'm in the process of collecting photos for my page and hope to get them on one day soon. I love that you have six children - I come from a family of 8 children. A large family is wonderful and you don't hear too often of families with more than 2 or 3 children anymore. I read that you enjoy reading and gardening. I do too. I wish I was talented enough to write a book but I wasn't blessed with the gift of writing. I also enjoy fishing and camping and dream of one day living on the water (Bayou Lafourche runs in my back yard but that just isn't the same as a lake or ocean). Have a wonderful day!
I don't scare that easily!! Besides, anyone who tells me my children are beautiful, are keepers! =) You'll have to put some pics of the rest of your family up so we can see them! If Baylor is an indicator, then they must all be gorgeous!!
Speaking of Baylor, I was wondering how you found out at such a young age and was also wondering what his mutation was? I took Wyatt in just a couple of weeks after his 4th b-day for his "waddling gait." The doc had him do the "typical" things, sent us for a blood test and called later that day to tell us he had some form of md--totally not expecting that! It seemed to come out of the blue. He has never had any health issues. Just figured he'd outgrow his funny gait (which is what an orthopedic told us in Nov. 06, when Wyatt saw him b/c he twisted his ankle trick or treating. I brought up his gait and they looked him over, even commented on his muscular legs, and said he'd outgrow it. I wish!) and if not he might need some PT to help him out. He has a deletion of 45-46. We are heading to Cincy for a muscle biopsy next week to try and figure out a few things. His deletions usually lead to bmd but b/c he has some weakness now, they are classifying as dmd and we want to know what else is going on that is making him present as dmd instead of bmd. I am getting a bit nervous about it--they just told us last Wed. that it was scheduled for July 9, so we are scrambling to make arrangements.
That is great that Baylor loves Flanigan so much--it does make things so much better. We have only seen Wong once but Wyatt seemed to like her as well. She was very friendly to all of us and treated Wyatt like he was a person--some talk about him as if he if isn't in the room and don't even try to interact with him. We were definitely pleased and so grateful to have found her! I have said many times that I am grateful that he was my last and not my first, as she is almost 16 and we are still a ways from a real treatment. We just hope and pray everyday for Wyatt and for the docs and researchers.
Hope you had a great weekend and I'll chat with ya later. If I don't answer back promptly, it is b/c my mother-in-law and her husband, my sister-in-law, her husband and their baby are in town. (just giving ya a hard time!) My husband has a sis. here with her hubby and 3 kids, and a bro. and his wife and 2 kids (one on the way), and we pretty much hang out at my house, so I am just a bit busy trying to cook and clean for all of us and fit in a daily shower!!;) Tiring but fun! Later, Jill
When you didn't write back, I just figured I scared you off! LOL J/K!!!
Yeah, my older kids are a pretty big help most of the time. Baylor adores all of them, and knows he can charm them when he's in a good mood :)
Bugs! I don't blame your husband for being freaked out about them. Bugs and snakes freak me out!! I stepped on a stupid black snake once in Missouri, and about had a heart attack! I could have won the gold medal in high jump :)
West End, NC is near Southern Pines on the East side of the state. My husband's brother and wife love it out there. Someday they'll move back out West I'm sure, since all their children live in UT, ID, and CO, but for now they are content.
Baylor's Neuro is Kevin Flanigan. 2 MDA clinics ago we signed up for the UDP. So far we haven't been notified about any trials, but Baylor just turned 4, so maybe in a year or so. Baylor loves Dr. Flanigan. He's very sweet and personable with Baylor, and can always get Baylor to cooperate, which sometimes isn't an easy thing.
I still think Cincy probably has a better duchenne clinic, but I'm hoping that it will become more like that every where one day.
For sure, let's get together if you are ever in our neighborhood :) It would be really fun to meet your family :)
Have a great day!!
Sorry, Marla I thought I had written you back and just realized that I hadn't! You certainly have the range of ages in kiddos! Must be nice b/c I would think you would have lots of help from the older ones! (Wishful thinking??) I know most of the time my girls are pretty good helpers and very forgiving of stunts that Wyatt pulls!!
You certainly didn't miss much by never making it to Houston! Not knocking the city, b/c I do like living here--the heat does get tiresome and there isn't much to look at! (I will take the heat over the cold any day. My sis-in-law from Idaho was just here and she said they got snow about 2 wks ago. Not much but still, it's June! Crazy!) The bugs don't bother me but my husband, tough guy that he is, is freaked out by them!! LOL!
I am not familiar with West End, NC. Where is that at? Asheville is in the mountains in the western part of the state. Just curious.
What doctor do you see? Do you go to Flanigan in Utah? I heard he was pretty top notch--thinking about enrolling him in the study there but not sure. Need to get more info. about it.
Hope all is well and maybe sometime when we are out that way, we could meet!
I am just above the 'computer generation' so I too had to learn how to navagate this website. I kept sending Ryan messages to ask him how to do stuff! Once you get into it, it does get easier! I am usually on at night when the kids are in bed, so feel free to drop me a line if you need some help or just want to talk!
Just wanted to say hello and welcome! What part of Idaho are you in? My daughter was born in Rexburg and my sister-in-law lives in Idaho Falls! We lived in Rexburg for 4 years--and man was it cold!!! But loved living in a small western town!