Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 Hello. Our daughter Trinity was born on Christmas Day 2006, 3.1 weeks early. She was diagnosed with CHARGE in January. I'm new to this site and am searching for some support and have a few questions. The main question I have is does anyone out there know of a site that may show hospital rankings when it comes to certain Children's Hospitals? We have heard that Seattle has the #2 hospital for CHARGE children. Where can I find rankings for other hospitals? Trinity is doing pretty well. She has bilateral cholaboma's, a bicuspid heart, and bilateral choanal atresia. She spent the first 3 1/2 months of her life in the NICU in Birmingham, AL. She has already had 2 surgeries on her nose to open it up. The first surgery was the worst. She had it done at approx 7 weeks and then had stents in there for another 7 weeks. We got her home a couple weeks after that she started having more feeding issues (no G tube)and found out her nose had scared over and they had to open it again. No stents this time however the openings are still very narrow and she will have to have another surgery for sure. She has fed quite well since the 2nd surgery and is finally starting to plump up but we are very concerned that we are going to be blind sided again with another nose issue. This has really been a scary experience and I'm glad to know I now have a place to talk about this. Thank you, Cook Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 , Welcome to the CHARGE family. Don't know much anbout Children's hosps as we have used the same hosp for all of 's surgeries, he's had 14 so far. The only children's hosp I have any experience is Ft. Worth Tx, they were great with my daughter. You can almost expect at least one more surg for the atresia, has had three.. but because of the uni-lateral cleft lip and palate he's looking at a couple more. So toss your questions out, there's a lot of experience here. Casey, Mom to Dawn 28 HH, Ken almost 18 ADHD, 15 CHARGE ________________________________________________________________________________\ ____ Shape Yahoo! in your own image. Join our Network Research Panel today! http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 : I'm not sure what type of atresia (membraneous or bony) has, but I know many individuals with CAHRGE have multiple surgeries for that. Now, having stated that, I have a question: Was the surgery accomplished transpalattal or through the nose? has the surgery at 3 days old transpalattaly for membranous atresia. At an ENT appointment this past Thursday, they checked and it is still open. This is the only surgery she's had for it. I would ask about how the procedure is/was done and if there is this other option. I know of a few others that were done this way and they stay open longer. I can't tell you about specific Children's Hospitals, but wanted to get that other information to you. Welcome to " The Club " ! Friends in CHARGE, Marilyn Ogan Mom of (14, CHARGE+, JRA) Mom of Ken (17, Aspergers) Wife of Rick oganm@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 : I'm not sure what type of atresia (membraneous or bony) has, but I know many individuals with CAHRGE have multiple surgeries for that. Now, having stated that, I have a question: Was the surgery accomplished transpalattal or through the nose? has the surgery at 3 days old transpalattaly for membranous atresia. At an ENT appointment this past Thursday, they checked and it is still open. This is the only surgery she's had for it. I would ask about how the procedure is/was done and if there is this other option. I know of a few others that were done this way and they stay open longer. I can't tell you about specific Children's Hospitals, but wanted to get that other information to you. Welcome to " The Club " ! Friends in CHARGE, Marilyn Ogan Mom of (14, CHARGE+, JRA) Mom of Ken (17, Aspergers) Wife of Rick oganm@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 Hi Marilyn!! Trinity had both bony and tissue atresia blocking both sides. They went in through her nose and literally had to cut out the passage way. She lucked out and didn't have a cleft pallate although she does have a very high arch. I'm guessing she is going to have dental issues because of that. Her most recent appt with her ENT was this past Wednesday and the nose is still open. One other issue we are fighting is her acid reflux. When he went down her nose with the scope you could see the foam from it on her voice box. Of course, I hadn't given her her Zantac for it yet, but at least we now know she really does still have that going on as well. This last surgery that Trinity had done on her nose the doctor used a drug that is supposed to keep scar tissue from forming. It has worked some since this time around she hasn't scared over as fast. Seems to me (not positive though) that the drug he used is used in chemo patients. Of course, they use all sorts of strange drugs we have found out. Like eyedrops for the ears and eardrops for the nose. Very bizaare medical world, huh? Does have other issues as well? Can you tell me about them if that's not getting too personal? How does she do in school? Does she go to a regular public/private school? Take regular classes or some regular and some special ed? How about therapy? Please don't feel you have to get personal with me. I'm just bouncing things off you to see possibly what could be in store for us. Take Care, Rick Ogan oganr@...> wrote: : I'm not sure what type of atresia (membraneous or bony) has, but I know many individuals with CAHRGE have multiple surgeries for that. Now, having stated that, I have a question: Was the surgery accomplished transpalattal or through the nose? has the surgery at 3 days old transpalattaly for membranous atresia. At an ENT appointment this past Thursday, they checked and it is still open. This is the only surgery she's had for it. I would ask about how the procedure is/was done and if there is this other option. I know of a few others that were done this way and they stay open longer. I can't tell you about specific Children's Hospitals, but wanted to get that other information to you. Welcome to " The Club " ! Friends in CHARGE, Marilyn Ogan Mom of (14, CHARGE+, JRA) Mom of Ken (17, Aspergers) Wife of Rick oganm@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 heather im a charger in aus 22 on thurs i was i dont have the artresia issues but i have cleft lip palate wich was repared and i do have reflux helped b a gtube fire off as many questions h\as you like but i wan t to fire a few at you have you been to the charge syndrome site and order a manual or joined up with the foundation www.chargesyndrome.org it is very helpful this list is the best and you will fnd in time ur helping all of us to lol also with the hosp insurance and all that have you thought about talking to drs about what they think you should do about all that stuff i dont no usa stuff very well but i must admit think i might know it better than the averige aussie just by being on this list LOL hugs ellen > > Hi Marilyn!! Trinity had both bony and tissue atresia blocking both > sides. They went in through her nose and literally had to cut out the > passage way. She lucked out and didn't have a cleft pallate although she > does have a very high arch. I'm guessing she is going to have dental issues > because of that. Her most recent appt with her ENT was this past Wednesday > and the nose is still open. One other issue we are fighting is her acid > reflux. When he went down her nose with the scope you could see the foam > from it on her voice box. Of course, I hadn't given her her Zantac for it > yet, but at least we now know she really does still have that going on as > well. This last surgery that Trinity had done on her nose the doctor used a > drug that is supposed to keep scar tissue from forming. It has worked some > since this time around she hasn't scared over as fast. Seems to me (not > positive though) that the drug he used is used in chemo patients. Of course, > they use all sorts of > strange drugs we have found out. Like eyedrops for the ears and eardrops > for the nose. Very bizaare medical world, huh? > > Does have other issues as well? Can you tell me about them if > that's not getting too personal? How does she do in school? Does she go to a > regular public/private school? Take regular classes or some regular and some > special ed? How about therapy? > > Please don't feel you have to get personal with me. I'm just bouncing > things off you to see possibly what could be in store for us. > > Take Care, > > > Rick Ogan oganr@... > wrote: > : > > I'm not sure what type of atresia (membraneous or bony) has, but I > know many individuals with CAHRGE have multiple surgeries for that. > > Now, having stated that, I have a question: Was the surgery accomplished > transpalattal or through the nose? has the surgery at 3 days old > transpalattaly for membranous atresia. At an ENT appointment this past > Thursday, they checked and it is still open. This is the only surgery > she's > had for it. I would ask about how the procedure is/was done and if there > is > this other option. I know of a few others that were done this way and they > stay open longer. > > I can't tell you about specific Children's Hospitals, but wanted to get > that > other information to you. > > Welcome to " The Club " ! > > Friends in CHARGE, > > Marilyn Ogan > > Mom of (14, CHARGE+, JRA) > > Mom of Ken (17, Aspergers) > > Wife of Rick > > oganm@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 heather im a charger in aus 22 on thurs i was i dont have the artresia issues but i have cleft lip palate wich was repared and i do have reflux helped b a gtube fire off as many questions h\as you like but i wan t to fire a few at you have you been to the charge syndrome site and order a manual or joined up with the foundation www.chargesyndrome.org it is very helpful this list is the best and you will fnd in time ur helping all of us to lol also with the hosp insurance and all that have you thought about talking to drs about what they think you should do about all that stuff i dont no usa stuff very well but i must admit think i might know it better than the averige aussie just by being on this list LOL hugs ellen > > Hi Marilyn!! Trinity had both bony and tissue atresia blocking both > sides. They went in through her nose and literally had to cut out the > passage way. She lucked out and didn't have a cleft pallate although she > does have a very high arch. I'm guessing she is going to have dental issues > because of that. Her most recent appt with her ENT was this past Wednesday > and the nose is still open. One other issue we are fighting is her acid > reflux. When he went down her nose with the scope you could see the foam > from it on her voice box. Of course, I hadn't given her her Zantac for it > yet, but at least we now know she really does still have that going on as > well. This last surgery that Trinity had done on her nose the doctor used a > drug that is supposed to keep scar tissue from forming. It has worked some > since this time around she hasn't scared over as fast. Seems to me (not > positive though) that the drug he used is used in chemo patients. Of course, > they use all sorts of > strange drugs we have found out. Like eyedrops for the ears and eardrops > for the nose. Very bizaare medical world, huh? > > Does have other issues as well? Can you tell me about them if > that's not getting too personal? How does she do in school? Does she go to a > regular public/private school? Take regular classes or some regular and some > special ed? How about therapy? > > Please don't feel you have to get personal with me. I'm just bouncing > things off you to see possibly what could be in store for us. > > Take Care, > > > Rick Ogan oganr@... > wrote: > : > > I'm not sure what type of atresia (membraneous or bony) has, but I > know many individuals with CAHRGE have multiple surgeries for that. > > Now, having stated that, I have a question: Was the surgery accomplished > transpalattal or through the nose? has the surgery at 3 days old > transpalattaly for membranous atresia. At an ENT appointment this past > Thursday, they checked and it is still open. This is the only surgery > she's > had for it. I would ask about how the procedure is/was done and if there > is > this other option. I know of a few others that were done this way and they > stay open longer. > > I can't tell you about specific Children's Hospitals, but wanted to get > that > other information to you. > > Welcome to " The Club " ! > > Friends in CHARGE, > > Marilyn Ogan > > Mom of (14, CHARGE+, JRA) > > Mom of Ken (17, Aspergers) > > Wife of Rick > > oganm@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 Hello , my name is Crystal and I just wanted to welcome you to the group. I live in Illinois and I have 3 children my youngest Eva is my little CHARGEr she is 2. I hope to hear more from you and about Trinity. This group is always trying to help everyone here get the answers we all need. God bless, Crystal mom to (11), (4), and Eva (2 year old CHARGEr) wife to Dan in Illinois > > Hello. Our daughter Trinity was born on Christmas Day 2006, 3.1 > weeks early. She was diagnosed with CHARGE in January. I'm new to > this site and am searching for some support and have a few > questions. The main question I have is does anyone out there know of > a site that may show hospital rankings when it comes to certain > Children's Hospitals? We have heard that Seattle has the #2 hospital > for CHARGE children. Where can I find rankings for other hospitals? > > Trinity is doing pretty well. She has bilateral cholaboma's, a > bicuspid heart, and bilateral choanal atresia. She spent the first 3 > 1/2 months of her life in the NICU in Birmingham, AL. She has > already had 2 surgeries on her nose to open it up. The first surgery > was the worst. She had it done at approx 7 weeks and then had stents > in there for another 7 weeks. We got her home a couple weeks after > that she started having more feeding issues (no G tube)and found out > her nose had scared over and they had to open it again. No stents > this time however the openings are still very narrow and she will > have to have another surgery for sure. She has fed quite well since > the 2nd surgery and is finally starting to plump up but we are very > concerned that we are going to be blind sided again with another nose > issue. This has really been a scary experience and I'm glad to know > I now have a place to talk about this. > > Thank you, > Cook > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 : No problem in sharing ’s story! She was born at 11:59PM on Friday, July 24, 1992 by emergency C-section 8 weeks early due to polyhydramnios (excess amniotic fluid) after I started “leaking” the week before. She presented with APGAR scores at the minimal ranges, was whisked to NICU; and I was sewn up and sent back to my room before knowing what all was going on. 2 hours after she was born, I had an ENT surgeons tanding in my room telling us that she had this blockage in her nose, couldn’t breath without a vent because of it (but she was fighting the vent, so wanted to breath on her own), but this ENT was on his way out the door to a convention he was presenting at and couldn’t miss. He wanted to get her open sooner than he would be able to, so we transferred to Riley Children’s Hospital (we were fortunate to be in Indianapolis when all this was happening, so Riley was at least close) on Saturday, and on Monday the atresia surgery took place. Dr. Bruce Matt did the surgery transpalattally. (Dr. Matt studied under Dr. Cotton in Cincinnati, I think. They are both very good!) Then began the roller coaster! A Geneticist came in on Wed., because the atresia had them thinking there would possibly be problems beyond the choanal atresia. The Geneticist diagnosed the CHARGE at 5 days old. The problems were that each specialty area could tell us what pertained to their expertise, but nothing about any other aspects of CHARGE. She had a feeding tube and Nissen fundoplication that same day (Wed.) due to reflux and no suck swallow response. We were in the hospital about one month. Over the next three months she was admitted 3 times for aspiration pneumonias (couldn’t swallow her secretions correctly, and boy, were there a lot!). After much agonizing and scoping, a trach was placed due to subglottic stenosis (narrowing of airway around voicebox). She had this for three years. When her swallow improved, she was decannulated. is affected in most aspects of CHARGE, but not a severe as others. She has a small left retinal coloboma; and the right eye has an underdeveloped optic disk with a “miniscule” coloboma. We just recently found out the right eye stuff at our last ophthalmology appt. with a new doc – SURPRISE! She has a small lower left field of vision loss. For heart issues, was born with a large ASD and a PDA. Both closed on their own and she was cleared of cardiology issues at 1 year old. Atresia – repaired at 3 days and still patent. has retardation of growth. She will be 15 in July and still is only 70 pounds and 4’7” tall. She has been on growth hormone since failing her growth study when she was 3 ½ years old. The Endocrinologist feels she would not have grown this much without the hormone therapy since she produces none on her own. An immediate, huge benefit of the growth hormone treatments was increased strength and stamina. Developmentally she just exploded when she had the strength to do things without becoming overly tired. We are certain she will need sex hormones to assist with puberty. She has started growing hair “down there” but that is all. She is very aware she is different than her peers and is just begging for breasts! has small labia, and we had to be very cautious when she was an infant about cleaning so as not to cause infections for kidney or bladder. Fortunately, she was very much a fussy baby when wet or soiled, so she never sat in a bad diaper very long! Her ears are low-set and rotated. She had PE tubes placed at 1 year, but had to have them removed due to them making the ear infections worse. (never figured that one out: Allergic to the material or just too much stuff to clear through them?) The outer ear is small and abnormally shaped also, making it hard to hold hearing aids or glasses. She no longer wears hearing aids as she receives no benefit from them, not even the powerful digital ones. We had to get the cable temple frames for glasses (the kind with the flexible, rounded ear piece) in order to keep them on her. They are very hard to find now; but she is able to wear regular temples now that she has grown. She has a severe to profound hearing loss in her right ear and a profound loss in the left. She communicates with American Sign Language. She has been stable, health wise, for many years now. (Other than nasty sinus problems, which I’m sure she gets form me and my side of the family!) She began eating “normal” foods (but not hard meats) at age 7 and her feeding button (she had a MicKey g-button) was removed at age 9. Both her trach stoma and g-button stoma had to be surgically closed. The issues we now face are educational (and soon, transitional). The Deaf School has done a fabulous job in teaching her language and giving her a means to express herself and understand others. We have had 2 years of behavioral issues at school (not at home, grandparents, friends, church, etc.) I warned them 3 years ago that these issues were going to possibly be coming up. We now believe the problems at school are more related to visual issues. Prior to this point, we feel she was able to fool everyone by adapting as needed. We had been told in infancy that she had the small left retinal coloboma but that “it won’t effect her vision”. We believed them. In the last year, as the curriculum and environment of school has gotten harder (the content and the fact of switching for every class, sometimes to a different building) we found negative behaviors were becoming an issue. She would stomp out of the classroom, scream, hit or kick staff, tear up papers, throw objects, etc. I brought up visual issues and was told her acuity is fine. We have found that she has the additional eye issues, as well as vestibular dysfunction, proprioception and processing problems. The Deaf School has been the best thing we could have done to help with language, but they can’t accommodate the visual component. The Blind School functional vision eval states that she needs cane training (for her and for others to identify that she may need assistance) for night use. Also that she would benefit form Orientation and Mobility training. The Deaf School cannot provide that. We have a case conference in August to discuss a recent Perkins School for the Blind assessment report. We will be discussing accommodations and placement at that time. (You’ll hear a lot about Perkins on this list. They are fabulous beyond imagining! And they really “get” our kids with CHARGE.) She receives OT and PT at the Deaf School. For many years we also had private therapists paid through insurance. The only thing that has been a recent addition on health concerns is that she was diagnosed with Juvenile Rheumatoid Arthritis 2 years ago. Pain may also play a role in her negative behaviors at school. There are lots of stairs she has to negotiate, and lots and lots of walking all over the Deaf School campus. So that is the (somewhat) condensed version of . Not bad for cramming in almost 15 years! Any more specific questions, feel free to ask! Friends in CHARGE, Marilyn Ogan Mom of (14, CHARGE+, JRA) Mom of Ken (17, Aspergers) Wife of Rick oganm@... 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Guest guest Posted June 30, 2007 Report Share Posted June 30, 2007 : I have to apologize: I'm absolutely horrible with matching names of children with parents! I believe one of my posts referred to your daughter as , not Trinity! I'm so sorry and will be more mindful of matching people in the future! Anyway, WELCOME!!! Friends in CHARGE, Marilyn Ogan Mom of (14, CHARGE+, JRA) Mom of Ken (17, Aspergers) Wife of Rick oganm@... _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Cook Sent: Saturday, June 30, 2007 7:11 PM To: CHARGE Subject: RE: Hospital Sites?? Hi Marilyn!! Trinity had both bony and tissue atresia blocking both sides. They went in through her nose and literally had to cut out the passage way. She lucked out and didn't have a cleft pallate although she does have a very high arch. I'm guessing she is going to have dental issues because of that. Her most recent appt with her ENT was this past Wednesday and the nose is still open. One other issue we are fighting is her acid reflux. When he went down her nose with the scope you could see the foam from it on her voice box. Of course, I hadn't given her her Zantac for it yet, but at least we now know she really does still have that going on as well. This last surgery that Trinity had done on her nose the doctor used a drug that is supposed to keep scar tissue from forming. It has worked some since this time around she hasn't scared over as fast. Seems to me (not positive though) that the drug he used is used in chemo patients. Of course, they use all sorts of strange drugs we have found out. Like eyedrops for the ears and eardrops for the nose. Very bizaare medical world, huh? Does have other issues as well? Can you tell me about them if that's not getting too personal? How does she do in school? Does she go to a regular public/private school? Take regular classes or some regular and some special ed? How about therapy? Please don't feel you have to get personal with me. I'm just bouncing things off you to see possibly what could be in store for us. Take Care, Rick Ogan com> wrote: : I'm not sure what type of atresia (membraneous or bony) has, but I know many individuals with CAHRGE have multiple surgeries for that. Now, having stated that, I have a question: Was the surgery accomplished transpalattal or through the nose? has the surgery at 3 days old transpalattaly for membranous atresia. At an ENT appointment this past Thursday, they checked and it is still open. This is the only surgery she's had for it. I would ask about how the procedure is/was done and if there is this other option. I know of a few others that were done this way and they stay open longer. I can't tell you about specific Children's Hospitals, but wanted to get that other information to you. Welcome to " The Club " ! Friends in CHARGE, Marilyn Ogan Mom of (14, CHARGE+, JRA) Mom of Ken (17, Aspergers) Wife of Rick oganm (AT) insightbb (DOT) com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 , My daughter, MacKenzie 9, also had her choanal atresia discovered by a nurse trying to pass a catheter. An ENT resident was called and quickly replied " Oh no, I think she has CHARGE Syndrome " . What an introduction to this crazy world. MacKenzie also had a PDA ligation, her PDA was so large that the surgeon clamped it instead of separating it. I think this defect is one of the most common In CHARGE. As far as CHARGErs being sicker than other kids with colds and flu bugs; most probably are but in the past year of so MacKenzie hasn't actually had a cold or flu. She pops up with weird and wonderful symptoms with other CHARGE stuff, but is very healthy compared to her peers in the conventional sense. Do you have any idea what her sight and hearing are like yet? Jeanie Colp mom to MacKenzie 9 CHARGE, Tyler 15 & Zachary 12 Nova Scotia, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 Yes. She passed her hearing screening once tubes were placed in her ears. She had fluid build up from her stents, the ENT believes. She had failed her first test but once the stents were removed and they placed the tubes she passed. She also reacts to sound so we know she has hearing. To what extent if any for hearing loss we don't know and she will be followed for it. Trinity also had a clamp put in for her PDA ligation. Site is not fantastic. She has periferral (sp?) vision out one eye and the other eye is better in that she has vision straight ahead. The ophthamolgist advised that they will likely give her glasses once she becomes mobile just to protect her eyes since there is nothing they can do to correct her vision. I figure her periferral vision out that eye could come in handy if someone tries to sneak up on her, ha! ha! I have to find some humor in it. My husband and I feel that she could be our little Super Hero.....fighting crime with her perifferal vision. Ha! Ha! Yes, this world of CHARGE is so bizaare. What a wild ride and what a huge learning experience. Mommy to Gracie 22 months and Trinity 6 months CHARGE Jeanie jeaniecolp@...> wrote: , My daughter, MacKenzie 9, also had her choanal atresia discovered by a nurse trying to pass a catheter. An ENT resident was called and quickly replied " Oh no, I think she has CHARGE Syndrome " . What an introduction to this crazy world. MacKenzie also had a PDA ligation, her PDA was so large that the surgeon clamped it instead of separating it. I think this defect is one of the most common In CHARGE. As far as CHARGErs being sicker than other kids with colds and flu bugs; most probably are but in the past year of so MacKenzie hasn't actually had a cold or flu. She pops up with weird and wonderful symptoms with other CHARGE stuff, but is very healthy compared to her peers in the conventional sense. Do you have any idea what her sight and hearing are like yet? Jeanie Colp mom to MacKenzie 9 CHARGE, Tyler 15 & Zachary 12 Nova Scotia, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 We wanted to try and get to Seattle as that would put our family at about 2 1/2 to 3 hours max away from us. We have since found out that Seattle isn't an option for us. My husband has a meeting tomorrow with regards to this so we are hopeful maybe a new game plan will be set up and we will get an assignment closer to home. I think we will have to jump through all their hoops again with resubmitting every bit of paperwork we have already done. But, since I'm not working (still) I will have some time to make the calls and get things done if that's the option we choose. My husband could retire if he wants to as he's done his 20 years but our insurance is so good right now we hate to do that. Their benefits change once they retire. Trinity looks very normal on the outside too. I find that to be a major blessing when it comes to children and being mean to each other that is huge. I feel that Trinity is a pretty smart little baby to have taught herself to breath from her mouth at around 1 week old and her survival instincts are just amazing. Here she sat for 6 weeks approx with her nose scarred over and she still fought to get fed, drinking from a bottle, stop breath out of her mouth and continue on. Gracie just loves her to death. She kisses her and pats her (gently) on the head and has even tried to feed her and suck her nose out with a nose sucker. What a helpful little one for a 1 year old. She has been dealing with this most of her 2nd year of life so this has been quite hard on her and trying to make sense of things. Here we were going and being with Trinity in the hospital and then leaving her there. All of a sudden this little baby is home with us. Not to mention we moved the week before Trinity was born (she was early) and Gracie got a new bed, new room then we started travelling back and forth staying for up to about a week at a time in a hotel, coming home a couple of days then back up there. For 6 months she's been doing this. We finally got her settled back in when we had a follow up visit earlier this past week. The nightmares came back after only spending 1 day/night in a hotel. She's a bear to put down at night as well. We ALL had a good night last night. I heard Gracie cry 1 time and she went right back to sleep about 5am. So she's getting back to " normal " again. She needs her grandparents, aunts, uncles and cousins so badly. A conference is definitely not on the map right now. Once things start settling in a bit within this next year I may consider it. Not sure if I will be able to get my husband to go, but I would probably be willing to go if we can afford it and if it's near where we are. Take Care. Mommy to Gracie 22 months and Trinity 6 months CHARGE Rick Ogan oganr@...> wrote: : 's ears are " nearly " normal on the outside unless you know what to look for. She has a clipped helix and a very small lobe on one side. The concha is also not regular. When the geneticist came into the NICU to check her over, I was standing off to the side and observing. He commented to an Intern (Riley is a teaching hospital) that her ears were " low-set and rotated " . When they left I ran over and really looked at her. It wasn't real obvious - we'd had both sets of grandparents, an Aunt, two Uncles, and ourselves in there and none of us ever noticed in those 5 days prior! We all just remember that for all the problems started with, she looked really good at 4 pounds 10 ounces, compared to the little bitty girl in the next isolette who only weighted 1 pound 9 ounces and had been there for nearly a month. She looked like a term baby (she didn't have the paper-thin, translucent skin with most preemies) until you saw her next to a stethoscope (a small one at that) and her hand wasn't even close to being that size. We have tried earrings twice, and hates them. She dislikes the sensation of the removal and re-insertion. And because of the earlobes, they were not even - another big bug-a-boo for not wanting to keep them! (Have to be the same!) We don't know about inside as she has never had a CT or MRI. Based on her balance/vestibular function issues, we believe they are at least malformed. She was shown to have a mild to moderate hearing loss as an infant. Has that progressed? We think the testing has just been better and her responses more indicative of her actual hearing levels. (Or rather, lack thereof.) I hope that you are able to prove the need to move closer to family. It is really important for the siblings to have stability early in this whole thing. Ken was 3 years when was born. At one point when she was having problems and in and out of the hospital, he wouldn't go to sleep. We discovered that, because usually had most problems at night with the respiratory issues and ended up in the hospital, he felt that if he went to sleep she would " get sick again " . He felt totally responsible for her having problems. He'd go to bed, would have problems, then he'd wake up and " his " was in the hospital! It took a long time for us to understand this and work him through the fact he was not responsible. It was really hard as he was only 3, to explain in terms he could really understand. Having extended family support, even 2 hours away at the time, was a very positive thing. It also allowed Ken time away with grandparents to decompress from the stress in our home. So you are very right to be concerned about sibling issues. In fact, Tim Hartshorne at Central Michigan University, a psych professor and parent of a child with CHARGE, and his group are doing a study on issues that are experienced by siblings of individuals with CHARGE. Siblings are so important. We will also have SibShops during the conference this July. I hope you can attend a conference in the future. I know this year is probably not an option, but you really need to attend one and make lots of good connections - both with professionals who understand CHARGE, and other families going through the same thing. You will find the networking aspects invaluable, much as you will find the experiences and advice from this list invaluable. Friends in CHARGE, Marilyn Ogan Mom of (14, CHARGE+, JRA) Mom of Ken (17, Aspergers) Wife of Rick oganm@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 Hi , I certainly hope that the military approves of the move to the west that you are requesting. I am aware of a family that has a child who is deaf. The military approved a move so the family could be closer to a particular deaf school for the child. The child did not have any extenuating circumstances, beyond deafness. The mother did have a chronic autoimmune condition. I don't know if the mother's condition played into the move or not. But if the military approved a move for a family to be closer to a particular school, a request to be near family for help with a child who has complex needs would seem at least as necessary if not much more. Due to all the extenuating circumstances with your sweet Trinity, it would seem a reasonable request to move closer to the west. We had exceptional care at Seattle Children's Hospital, as many others on the list have had as well. We also had state of the art care at St. Louis Children's Hospital when we lived there for a short time. It's too bad that the Seattle option is not apparently open. I have seen rankings for hospitals in Newsweek magazine, I think, but i don't know if they rated Children's Hospitals. Although I don't have personal experience, I have heard a lot of positive opinions about both Los Angeles and Orange County Hospitals for Children. But both of those areas are quite far from Seattle, even though they are on the same coast. Best wishes with your request to the military. Family support can be really vital when a child has CHARGE Syndrome. Re: Hospital Sites?? I had tried earlier in the week to send them an email and it kicked back. I will try it again. I'm trying to pull from as many sources as possible. This isn't a case of I only want the best for my child. What we want is the best that we can get that will be covered by our insurance and that the military will move us closer to. We're having problems with that. We are approved to move but they want to move us 200 more miles away from family. We had requested to be put closer to them knowing that there are hospitals all up and down the West Coast that have CHARGE doc's or doc's that are aware of it. We are in need of our family support network to be closer to us and they all live on the West Coast. We have no one here on the East Coast at all. No family and no " real " close friends. Anyways, enough of my woes. I'll try the foundation again this week and see if I can get through via email. If not, I will figure another way to get a hold of them. Thank you for your response. Take Care, ellen howe ellen.howe@...> wrote: heather im a charger in aus 22 on thurs i was i dont have the artresia issues but i have cleft lip palate wich was repared and i do have reflux helped b a gtube fire off as many questions h\as you like but i wan t to fire a few at you have you been to the charge syndrome site and order a manual or joined up with the foundation www.chargesyndrome.org it is very helpful this list is the best and you will fnd in time ur helping all of us to lol also with the hosp insurance and all that have you thought about talking to drs about what they think you should do about all that stuff i dont no usa stuff very well but i must admit think i might know it better than the averige aussie just by being on this list LOL hugs ellen > > Hi Marilyn!! Trinity had both bony and tissue atresia blocking both > sides. They went in through her nose and literally had to cut out the > passage way. She lucked out and didn't have a cleft pallate although she > does have a very high arch. I'm guessing she is going to have dental issues > because of that. Her most recent appt with her ENT was this past Wednesday > and the nose is still open. One other issue we are fighting is her acid > reflux. When he went down her nose with the scope you could see the foam > from it on her voice box. Of course, I hadn't given her her Zantac for it > yet, but at least we now know she really does still have that going on as > well. This last surgery that Trinity had done on her nose the doctor used a > drug that is supposed to keep scar tissue from forming. It has worked some > since this time around she hasn't scared over as fast. Seems to me (not > positive though) that the drug he used is used in chemo patients. Of course, > they use all sorts of > strange drugs we have found out. Like eyedrops for the ears and eardrops > for the nose. Very bizaare medical world, huh? > > Does have other issues as well? Can you tell me about them if > that's not getting too personal? How does she do in school? Does she go to a > regular public/private school? Take regular classes or some regular and some > special ed? How about therapy? > > Please don't feel you have to get personal with me. I'm just bouncing > things off you to see possibly what could be in store for us. > > Take Care, > > > Rick Ogan oganr@... > wrote: > : > > I'm not sure what type of atresia (membraneous or bony) has, but I > know many individuals with CAHRGE have multiple surgeries for that. > > Now, having stated that, I have a question: Was the surgery accomplished > transpalattal or through the nose? has the surgery at 3 days old > transpalattaly for membranous atresia. At an ENT appointment this past > Thursday, they checked and it is still open. This is the only surgery > she's > had for it. I would ask about how the procedure is/was done and if there > is > this other option. I know of a few others that were done this way and they > stay open longer. > > I can't tell you about specific Children's Hospitals, but wanted to get > that > other information to you. > > Welcome to " The Club " ! > > Friends in CHARGE, > > Marilyn Ogan > > Mom of (14, CHARGE+, JRA) > > Mom of Ken (17, Aspergers) > > Wife of Rick > > oganm@... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 Hi , I didn't know you used to be in St Louis. When was it? What docs did you see? Were you there when the first ever CHARGE conference was held there? Did you know Meg then? So many questions!' STL Children's is a wonderful hospital but there's just not a ton of CHARGErs that have gone through there.Here we are going through the system a second time and ten years later and still explaining to staff and nurses about CHARGE! Corrie > > Hi , > > I certainly hope that the military approves of the move to the west that > you are requesting. I am aware of a family that has a child who is deaf. The > military approved a move so the family could be closer to a particular deaf > school for the child. The child did not have any extenuating circumstances, > beyond deafness. The mother did have a chronic autoimmune condition. I don't > know if the mother's condition played into the move or not. But if the > military approved a move for a family to be closer to a particular school, a > request to be near family for help with a child who has complex needs would > seem at least as necessary if not much more. > > Due to all the extenuating circumstances with your sweet Trinity, it would > seem a reasonable request to move closer to the west. We had exceptional > care at Seattle Children's Hospital, as many others on the list have had as > well. We also had state of the art care at St. Louis Children's Hospital > when we lived there for a short time. It's too bad that the Seattle option > is not apparently open. I have seen rankings for hospitals in Newsweek > magazine, I think, but i don't know if they rated Children's Hospitals. > > Although I don't have personal experience, I have heard a lot of positive > opinions about both Los Angeles and Orange County Hospitals for Children. > But both of those areas are quite far from Seattle, even though they are on > the same coast. > > Best wishes with your request to the military. Family support can be > really vital when a child has CHARGE Syndrome. > > > Re: Hospital Sites?? > > I had tried earlier in the week to send them an email and it kicked back. > I will try it again. I'm trying to pull from as many sources as possible. > This isn't a case of I only want the best for my child. What we want is the > best that we can get that will be covered by our insurance and that the > military will move us closer to. We're having problems with that. We are > approved to move but they want to move us 200 more miles away from family. > We had requested to be put closer to them knowing that there are hospitals > all up and down the West Coast that have CHARGE doc's or doc's that are > aware of it. We are in need of our family support network to be closer to us > and they all live on the West Coast. We have no one here on the East Coast > at all. No family and no " real " close friends. Anyways, enough of my woes. > I'll try the foundation again this week and see if I can get through via > email. If not, I will figure another way to get a hold of them. > > Thank you for your response. > > Take Care, > > > ellen howe ellen.howe@... > wrote: > heather im a charger in aus 22 on thurs i was i dont have the artresia > issues but i have cleft lip palate wich was repared and i do have reflux > helped b a gtube fire off as many questions h\as you like but i wan t to > fire a few at you have you been to the charge syndrome site and order a > manual or joined up with the foundation www.chargesyndrome.org it is very > helpful this list is the best and you will fnd in time ur helping all of > us > to lol also with the hosp insurance and all that have you thought about > talking to drs about what they think you should do about all that stuff i > dont no usa stuff very well but i must admit think i might know it better > than the averige aussie just by being on this list LOL hugs ellen > > On 01/07/07, Cook heathercook12369@...> > wrote: > > > > Hi Marilyn!! Trinity had both bony and tissue atresia blocking both > > sides. They went in through her nose and literally had to cut out the > > passage way. She lucked out and didn't have a cleft pallate although she > > does have a very high arch. I'm guessing she is going to have dental > issues > > because of that. Her most recent appt with her ENT was this past > Wednesday > > and the nose is still open. One other issue we are fighting is her acid > > reflux. When he went down her nose with the scope you could see the foam > > from it on her voice box. Of course, I hadn't given her her Zantac for > it > > yet, but at least we now know she really does still have that going on > as > > well. This last surgery that Trinity had done on her nose the doctor > used a > > drug that is supposed to keep scar tissue from forming. It has worked > some > > since this time around she hasn't scared over as fast. Seems to me (not > > positive though) that the drug he used is used in chemo patients. Of > course, > > they use all sorts of > > strange drugs we have found out. Like eyedrops for the ears and eardrops > > for the nose. Very bizaare medical world, huh? > > > > Does have other issues as well? Can you tell me about them if > > that's not getting too personal? How does she do in school? Does she go > to a > > regular public/private school? Take regular classes or some regular and > some > > special ed? How about therapy? > > > > Please don't feel you have to get personal with me. I'm just bouncing > > things off you to see possibly what could be in store for us. > > > > Take Care, > > > > > > Rick Ogan oganr@... > wrote: > > : > > > > I'm not sure what type of atresia (membraneous or bony) has, but > I > > know many individuals with CAHRGE have multiple surgeries for that. > > > > Now, having stated that, I have a question: Was the surgery accomplished > > transpalattal or through the nose? has the surgery at 3 days old > > transpalattaly for membranous atresia. At an ENT appointment this past > > Thursday, they checked and it is still open. This is the only surgery > > she's > > had for it. I would ask about how the procedure is/was done and if there > > is > > this other option. I know of a few others that were done this way and > they > > stay open longer. > > > > I can't tell you about specific Children's Hospitals, but wanted to get > > that > > other information to you. > > > > Welcome to " The Club " ! > > > > Friends in CHARGE, > > > > Marilyn Ogan > > > > Mom of (14, CHARGE+, JRA) > > > > Mom of Ken (17, Aspergers) > > > > Wife of Rick > > > > oganm@... > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2007 Report Share Posted July 1, 2007 Hi !! Heck, I would take Vegas or Utah if we had to. Anything to get closer to home. We'll see what happens in the next couple of weeks. People that don't have children with special needs have no clue what families go through. I never knew until we had Trinity how exhausting it could be on top of all of the worry. So I am aware of the naivity that's out there but you would think with all the documentation in her records and our insurance pleas and our own pleas via letters that we would have gotten something closer to home. I know the guy here on our end that was helping us with all of this was not happy about it either. We have lots of people pulling for us that have met us and know our circumstances which is of some comfort but we also know that we will be sent where he is needed that's just the military for you. If we don't get closer to home and he has to deploy all the harder on me (I'm not feeling sorry for myself) but it would be nice to have family around that didn't have to fly 3,000 miles to be with me for a week and go home. A reasonable driving distance would be much better and I think it would be easier on my husbands mind knowing family was within a few hours reach if anything were to happen and he was a half a world away. I feel those are all very valid arguments and I guess they (the decision makers) don't seem to understand that. I'll try to keep you all up to date on our progress. Keedy wkeedy@...> wrote: Hi , I certainly hope that the military approves of the move to the west that you are requesting. I am aware of a family that has a child who is deaf. The military approved a move so the family could be closer to a particular deaf school for the child. The child did not have any extenuating circumstances, beyond deafness. The mother did have a chronic autoimmune condition. I don't know if the mother's condition played into the move or not. But if the military approved a move for a family to be closer to a particular school, a request to be near family for help with a child who has complex needs would seem at least as necessary if not much more. Due to all the extenuating circumstances with your sweet Trinity, it would seem a reasonable request to move closer to the west. We had exceptional care at Seattle Children's Hospital, as many others on the list have had as well. We also had state of the art care at St. Louis Children's Hospital when we lived there for a short time. It's too bad that the Seattle option is not apparently open. I have seen rankings for hospitals in Newsweek magazine, I think, but i don't know if they rated Children's Hospitals. Although I don't have personal experience, I have heard a lot of positive opinions about both Los Angeles and Orange County Hospitals for Children. But both of those areas are quite far from Seattle, even though they are on the same coast. Best wishes with your request to the military. Family support can be really vital when a child has CHARGE Syndrome. Re: Hospital Sites?? I had tried earlier in the week to send them an email and it kicked back. I will try it again. I'm trying to pull from as many sources as possible. This isn't a case of I only want the best for my child. What we want is the best that we can get that will be covered by our insurance and that the military will move us closer to. We're having problems with that. We are approved to move but they want to move us 200 more miles away from family. We had requested to be put closer to them knowing that there are hospitals all up and down the West Coast that have CHARGE doc's or doc's that are aware of it. We are in need of our family support network to be closer to us and they all live on the West Coast. We have no one here on the East Coast at all. No family and no " real " close friends. Anyways, enough of my woes. I'll try the foundation again this week and see if I can get through via email. If not, I will figure another way to get a hold of them. Thank you for your response. Take Care, ellen howe ellen.howe@...> wrote: heather im a charger in aus 22 on thurs i was i dont have the artresia issues but i have cleft lip palate wich was repared and i do have reflux helped b a gtube fire off as many questions h\as you like but i wan t to fire a few at you have you been to the charge syndrome site and order a manual or joined up with the foundation www.chargesyndrome.org it is very helpful this list is the best and you will fnd in time ur helping all of us to lol also with the hosp insurance and all that have you thought about talking to drs about what they think you should do about all that stuff i dont no usa stuff very well but i must admit think i might know it better than the averige aussie just by being on this list LOL hugs ellen > > Hi Marilyn!! Trinity had both bony and tissue atresia blocking both > sides. They went in through her nose and literally had to cut out the > passage way. She lucked out and didn't have a cleft pallate although she > does have a very high arch. I'm guessing she is going to have dental issues > because of that. Her most recent appt with her ENT was this past Wednesday > and the nose is still open. One other issue we are fighting is her acid > reflux. When he went down her nose with the scope you could see the foam > from it on her voice box. Of course, I hadn't given her her Zantac for it > yet, but at least we now know she really does still have that going on as > well. This last surgery that Trinity had done on her nose the doctor used a > drug that is supposed to keep scar tissue from forming. It has worked some > since this time around she hasn't scared over as fast. Seems to me (not > positive though) that the drug he used is used in chemo patients. Of course, > they use all sorts of > strange drugs we have found out. Like eyedrops for the ears and eardrops > for the nose. Very bizaare medical world, huh? > > Does have other issues as well? Can you tell me about them if > that's not getting too personal? How does she do in school? Does she go to a > regular public/private school? Take regular classes or some regular and some > special ed? How about therapy? > > Please don't feel you have to get personal with me. I'm just bouncing > things off you to see possibly what could be in store for us. > > Take Care, > > > Rick Ogan oganr@... > wrote: > : > > I'm not sure what type of atresia (membraneous or bony) has, but I > know many individuals with CAHRGE have multiple surgeries for that. > > Now, having stated that, I have a question: Was the surgery accomplished > transpalattal or through the nose? has the surgery at 3 days old > transpalattaly for membranous atresia. At an ENT appointment this past > Thursday, they checked and it is still open. This is the only surgery > she's > had for it. I would ask about how the procedure is/was done and if there > is > this other option. I know of a few others that were done this way and they > stay open longer. > > I can't tell you about specific Children's Hospitals, but wanted to get > that > other information to you. > > Welcome to " The Club " ! > > Friends in CHARGE, > > Marilyn Ogan > > Mom of (14, CHARGE+, JRA) > > Mom of Ken (17, Aspergers) > > Wife of Rick > > oganm@... > > Quote Link to comment Share on other sites More sharing options...
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