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Post by Cbean on Sept 17, 2004 15:40:56 GMT -5
Well, what a day yesterday was. Back on the phone, calling all sorts of people, getting ready for a new path! Had a great conversation about my adventures with Dr. Evil with the prenatal coordinator at my OBGYN office on Wed. Then yesterday, at 8am I received a call from one of the doctors at my practice. She agreed we will never see Dr. Evil again and I was interested to see that she did not have a great opinion of him as well. I think I should send him a copy of "How to Win Friends and Influence Others" by Dale Carnegie for Christmas.
Well, she got a hold of my report and it appears that there is a spot on Little Miss No-Names heart. I wasn't even concerned, b/c out of everything you guys have shared with me I know this could be absolutely nothing. Presumably it's a calcium deposit. (I already have an appt with a ped cardiologist for Tues AM) Then she told me that something else showed up in the sonogram that they did Friday morning. Something that I even thought I saw that morning. Looks like she has a club foot. OK, how vain am I that this was the part of the conversation that totally freaked me out? Please, please don’t judge me. Remember, I am only a fraction of the way to where most of you are and all of this has been scaring the heck out of me. Just as I digest one piece of news, they throw something else at me. Is it ever going to stop? I was really feeling like this is only going to keep getting worse.
After I hung up the phone, all I could think of was that movie “My Left Foot”, even though I never saw the whole thing. I let the “Pity Party” back in and called husband. So we talked about it, got my sobs out then called my pediatrician’s office. Until he called me back, I cried and said some crazy things. I’m sure you can imagine. No joking here, but I kept thinking about that crazy doll. Now, looking back, I’m laughing at how ridiculous I was being, but I just felt like this poor baby was being targeted for everything and was going to come out all disfigured like something out of a horror movie. Again, please don’t judge me!!! This has just been so much at once and it just doesn’t stop and I don’t even have her in my arms yet! (Seeing pics of sweet little Evan and Katie were really helpful today. Cathy – it looks like she’s smiling in the one hour old shot!)
Then, my pediatrician called. I LOVE MY PEDIATRICIAN!!! OMG! First, he congratulates me and then, like a bull in a china shop, he jumps right in. We start discussing the heart. OBGYN and pediatrician are recommending same cardiologists! Great! He’s telling me all great things about different docs including neonatologist at the hospital where I will be delivering – he thinks he’s great, worked with him before! We’re in good hands. Didn’t seem too concerned about the club foot and said we’ll get an orthopedic surgeon to take care of that…many different ways to treat that, that’s no biggie. Tells me how they have many kids with DS in practice in fact there’s one girl in particular that he brought up. Says out of all his patients, with DS & without DS he puts her in the top 20. He wants to put me in touch with her Mom, b/c he thinks she’s so terrific and will be a good mentor for me. He went on so passionately about everything and made me feel like we’re going to be so well taken care of. Thank God! Ok, so 1 Dr. Evil but many Dr. Goods around. Phew. Sorry for long post. Needed to vent. Ah, feeling better. Amazing how some things go full circle – all in one day! Hope you all have a terrific weekend.
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Post by Renee' on Sept 17, 2004 16:11:00 GMT -5
I am so glad your doctor is being helpful. My hubby had club feet when he was born. He is handsome as ever I just wanted to give you a hug...
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Post by MB on Sept 17, 2004 16:16:49 GMT -5
How many sonograms of kids with Down syndrome has this person done? Our kids, because of low muscle tone, can turn themselves into pretzels. I would not be surprised to find out that the foot is not clubbed at all, just floppy. And floppy is treated with physical therapy.
To make you feel better, when my son was three, I was told at a regular vision screening that he was signigicantly farsighted. I stopped by the kids' specs place, by myself, to preview glasses. It was after school and the place was crowded. I showed the clerk his prescription, asked if it meant coke bottles for lenses and burst into tears. No, not tears, gutteral sobbing with a runny nose.
The other mothers there with their kids started glaring at me. After all, what kind of message am I sending to their kids about having to wear glasses? So I proceed to say in a very loud voice, "I'm sorry. I was o.k. with the braces on his feet, the hearing aids, the mental retardation, the sign language, physical therapy, occupational therapy and special education, but glasses are too much." The place goes quiet and the other moms run for the door. I had the shop to myself. Picked out the cutest pair of perfectly round red plaid glasses and went home. My son loved his glasses from the get go and still sleeps in them to this day. He now wears hip middle school glasses.
Truly, none of the other exceptionalities bothered me. But for some reason, the glasses put me over the edge. I think our journeys with our kids with Ds are really remarkable and surprising in all kinds of ways.
MB
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Post by Connie on Sept 17, 2004 16:29:47 GMT -5
You know you are feeling what I felt after I had my son Collin. And I think you sound completely normal. But, I do have to say having a club foot is no big deal. This is coming from personal experience. I was born with 2 clubbed feet. My doctor told my mom I would never walk. But after 1 surgery and 12 years of casts and braces you would never know that there was anything wrong (unless I'm really tired). I know that sounds like an over whelming amount of time but it was over 37 years ago...so you can only imagine the progress they;'ve made. Look how far they have come in the thinkings of DS. Good Luck to you and you sound like you are going to be such a wonderful mother to Little Miss No Name. Connie
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Post by wrblack on Sept 17, 2004 16:40:54 GMT -5
Okay, Little Miss Whatshername, that's about enough now. You can ease up a bit on your mom and the rest of us. You needn't bother going out and finding any other conditions or complications. And, hey, Christine, you don't need to apologize to us for any thoughts and feelings you might be going through. But your OBGYN and pediatrician sound great. Sorry to hear about the foot problem. From just a very quick internet search, here's a link www.shrinershq.org/patientedu/clubfoot2.htmlBut, you d__n right, I think I know something of some of the things you're running through. There were a number of times when I felt like saying, all right, dammit, that's enough. Felt like somebody or bodies or things or some vague, fuzzy entity or just some big ugly sum@^+(#, was picking, very unfairly, on my little baby boy. And if I could have I would have ripped their liver or livers out! But even the cataracts, which were a biggie to my mind, well, that was okay, they were something that could be fixed, dealt with. Life is not fair, but that's life, get over it, deal with it, get on with it. We all want our kids to be as perfect and beautiful as possible, and we'd be pretty worthless excuses for parents if we didn't. But just you wait and try not to fret too much. Charlie's always on the lookout for a date for the prom. Your daughter would be 5 years younger than Charlie, but do you think she might be willing to entertain his invitation? By that time she might be an accomplished and very enthusiastic dancer. 'Course, I'd hope by then she'd have a first name. Might be a bit difficult even for Charlie to come calling for his prom date and have to say, Good evening, I'm here for Whatshername. You have a good weekend, too. And get some rest and take care of yourself. -- Bob p.s. Learn something everyday. Moderators can lock threads and software just won't let you use certain words. Both probably a good thing.
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Post by Betty & Ian's Mom on Sept 17, 2004 16:45:31 GMT -5
sounds like you have a great ped doc, I had a great one to when ian & betty were born.
Like above, they can twist in all different directions when they are in the womb & they can get a false reading on the sonogram.
I certainly felt the way you did when I found out betty has ds, I was 17 weeks pregnant with her.
You're being such a great trooper, & your "Little no name" (BETTY) will have such a great MOMMY !!!
HUGS to you !!!
one more thing BETTY sounds like a great name for a girl !!! HEHE !!!
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Post by Renee' on Sept 17, 2004 17:37:55 GMT -5
Mb, I had to leaugh when I read your post. I had the SAME reaction. I could handle all the rest...the open heart surgery but the glasses did me in. Just thought you would like to know I did the same. Cried like a baby in front of the doctor and when buying her glasses.
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Post by Emilysmom on Sept 17, 2004 19:53:15 GMT -5
Christine~ We sure won't judge you girl!! Honestly...you are handling each new thing that gets thrown at you VERY well!! All of us have been through the whole adjustment period, and in many ways it really does seem to be harder when parents have to adjust BEFORE the birth....there is no baby to hold and bond with and love, so the unknown things the docs talk about are extra hard. When you are holding her (Emily, is it???) it will be a bit easier to hear about a problem IF there is one....and to decide with the doc on how to fix it. Please don't be too hard on yourself. And like MB said, there truly may not be a thing wrong with little Emily's feet!!! LOL No pressure for you to name your little one after MY little one, honest!!
Try hard not to worry too much ....take one day at a time. TODAY, a really good thing happened because your pediatrician sounds awesome! And you never ever have to see Dr. Evil again, so that sounds like 2 really good things for today. Please don't give those freaky dolls another thought. NONE of our kids look like them.
Susan
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Post by Emilysmom on Sept 17, 2004 20:04:23 GMT -5
Ohhhhhh.....Claire just reminded me!! SAVANNAH is a great name!!! Or how about Shelby? Or...anything with GRACE as the middle name. I really wanted that as a middle name, but our last name is PACE. (Emily Grace Pace??? I don't think so) Should we start a new thread called "A name for Christine's baby"?
Susan
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Post by Betty & Ian's Mom on Sept 17, 2004 20:19:34 GMT -5
Sounds good to me, but I still think that BETTY is a wonderful name !!! LOL !!! ;D ;D ;D ;D
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Post by meghans_mom on Sept 17, 2004 21:33:07 GMT -5
Christine - many many hugs...don't have personal experience w/. the clubfoot thing, but know several kiddies who have had it treated successfully. But I can totally understand that you feel like you've just had d**ned enough!! so again - many hugs!! And I wish I knew how to post a picture of my gorgeous little girl....Yeah, I know I'm her mom, but she *is* beautiful -- like all our kids!! MB/Renee - man, I thought I was the only one who had the same reaction about the glasses...it just was the one thing I didn't want to have to deal with (and I apologize to those of you who have much worse things to 'deal' with...i know in the big game, glasses are no big deal) but it just about knocked me on my butt.
I think Faith is a beautiful and fitting name...My Matthew would have been Emily Faith had he not been born w/ boy parts :-D But I'm saving the Faith for my *if and when* next daughter....lol! LOVE the name Savannah and Grace too! but that's not here nor there... Again, Christine...we're here and thinking of and praying for that little girl and for you too! laurie
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Post by rickismom on Sept 19, 2004 3:01:16 GMT -5
A very natural reaction....
When Ricki was one, we were told that she might need hearing aids (in the end she didn't), and one of her siblings broke down crying....the DS he took well, the eyeglasses, but the hearing aid was just too much!
I am a childbirth (Lamaze) teacher. MANY MANY times ultrasounds are off. I know of many many times that parents were told horrendous things, and it was OK. So prepare yourself emotionally that Maybe maybe maybe there is a clubfoot......
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Post by momofrussell on Sept 19, 2004 11:59:50 GMT -5
Well, Christine, I think you are doing a FINE job at dealing with each thing that is put in front of you! I probably would be upset at first about the club foot thing. As for me, I was kinda like what Rickismom described. Russell had eye surgery for cataracts in both eyes shortly after birth. So, Russell started wearing glasses around 2 months old... now, it may sound cute or no big deal for some of you.. but I WAS DEVISTATED.. coulda cared less he had DS.. but COKE BOTTLE GLASSES ON MY BABY BOY??? I CRIED AND CRIED.. it really took months for me to accept those plastic framed THICK things on my boy. You grieve the same for all these things.. and acccept it in your own way and time. I really don't have any experience with club feet. I do know that some kids w/DS were born with on or both. Sounds like after reading Connie's post, life goes on, and you will never know I have though, had experiece with a baby who actually had NO FOOT at birth. I babysat for a couple. Their second child, their son, was born with both feet but something happened at birth that they had to amputate one of his feet. It was done at the ankle. Phillip was not even a year when I started baby sitting... so, from that experience and watching Phillip grow up without a foot and a prothsesis instead, he did JUST fine.. didn't know the difference... use to take it off to get the sand out while we were at the park... never batted an eye... Ok.. so I am talking something extreme here and rambling like always... ;D, but all and all, things will be ok... I say, give yourself a PAT on the back for all the knowledge you are soaking up, and all the questions you are answering BEFORE hand... and smile.. you are WAY ahead of the game if you ask me... And who knows, you may come to love that club foot so much, it might be your favorite part of baby-no-name! Hugs A.
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Post by YoshsMom on Sept 19, 2004 16:46:20 GMT -5
I know just how you feel. Just as I was getting used to the idea of ds, the dr says club feet and I freaked. Yosh's feet were badly turned in, but after several castings and 1 surgery he's just fine. One foot turns in a little, but he's cruising all over the place and he'll be walking on his own any day now. I actually think the casts were good for him. Dragging around all that extra weight made his leg and abdominal muscles very strong. Yosh is anything but floppy. The hardest part of the whole thing was managing baths.
I think Little Miss No-Name is lucky to have you for a mom.
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Post by Cbean on Sept 19, 2004 22:38:21 GMT -5
The fact that you all are so willing to share info and personal stories is so truly amazing. I consider myself so fortunate to have found this site and when I look back I find it amazing that all of this started only a month and a half ago. You have all helped me so much - I have found so much strength because of you.
Now if you think the doll thing was bad, you should have seen the pics on the 1st website I pulled up that addressed club foot. Showed grusomely honest pictures of "older" people who had their feet removed...a method for treating club feet back in the '30's. The site goes on to depict some malformities that only freaked me out further.
So now the only thing that messes up my stomach is this appointment with the pediatric cardiologist on Tuesday. Just a little bit of worry for what she might come up with. Stinks because DH is going back to Cleveland that day!
Thanks guys...you really help me keep things in check!
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