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Post by NoahsMommy on Jun 2, 2011 21:52:26 GMT -5
Hey Susan...not sure if you remember me, Noah's Mom from Norhtern KY.
I can't believe Emily is a senior!! Where does the time go? I haven't been on here for 2 or 3 years...guess time just gets away.
She looks beautiful!
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Post by NoahsMommy on Jun 2, 2011 21:39:38 GMT -5
Haven't been on here for quite a long time....
Just wondering if anyone uses a special needs stroller for their child? We don't use the stroller a whole lot anymore, just when we go to places like the zoo, mall, Disney, etc. Anywhere that would require him to walk a lot basically. My problem is now that he is getting taller, regular baby/toddler strollers don't work. Weight is not really an issue. I have find strollers to handle his weight. At 8 years old, he still is just around 33 lbs. Small for his age.
I just got a Chicco one to use for Disney this year, which will be fine for a little while. But I think we are really going to have to look into getting a special needs one in the near future.
I'm just wondering if anyone has had any luck with getting private insurance to pay for one? We don't have Medicaid. I haven't checked our policy or talked to pediatrician about this yet. Just wanted to find out what others have done. I've looked up information online and I guess if insurance won't pay, we'd be willing to buy one ourselves at some point. I'd just prefer to not spend $400-$500 out-of-pocket if I can help it.
Any input appreciated. Thanks!
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Post by NoahsMommy on Jul 10, 2010 15:42:59 GMT -5
I haven't been on here for a long time...
Short intro: My son Noah is 7.5. Had a very complex medical history, but has been doing wonderful for the past 4 years. Getting ready to go into 1st grade, after completing 2 years in kindergarten. He absolutely LOVES school!
Current dilemma: potty training! I am so tired of buying diapers/wipes and changing diapers. 7.5 years of it is enough. For teh past 6 months or so we've been putting him on the potty off and on at home and at school. In that time he's only gone 1 time at school and 1 time at home. Been working on it this summer and still nothing. He loves to sit on the potty, just will not go in it. I have him in big boy underwear today for the 1st time. He's been wearing them for about 1.5 hours and we've had multiple trips to the potty where he did nothing, but he's still dry. I though it may be good for him to have an accident to feel it wet and icky, so just waiting for that to happen at some point today.
Anyone have any advice on how to get this child trained? Any appreciated.
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Post by NoahsMommy on Oct 26, 2008 22:42:19 GMT -5
My sons birthday is a few weeks and I so dread it. I love him more than life itself, but that day is so difficult for me. Last year I was fine until the day of his party, which by the way he hates. He wants nothing to do with the cake, family, gifts, etc. I didn't get upset until it was all over. This year I find myself dreading it weeks before it is even here. I feel like every year someone just yanks the scab off of a wound on my heart. Anyone experience the same thing? Any suggestions?
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Post by NoahsMommy on Mar 12, 2006 15:57:57 GMT -5
Thanks for all of the great suggestions!! We tried a couple of them already last week. I used a Kool-Aid burst bottle and put a straw in it and waterproof tape around the opening to prevent a big mess. This way I could squeeze the liquids into his mout...BOY, did he HATE it!!! He let me give it to him about three times and then absolutely refused it. So next time I gave him a yogurt smoothie with a tad bit of milk added and used our old straw method (holding the end and letting it drop into his mouth)...and what do you know...last night I actually got 3 sucks from him!!!! I was so excited since it's the first time ever he has sucked on a straw. I actually got a little too excited the first time and scared him and he started crying. I have to watch myself.
I don't know why I didn't seek help on here before now....things have just been so crazy the past year or so.
Thanks for asking about Kaitlan Susan. She is doing great...she's in 2nd grade now and has been doing gymnastics for about 8 months and loves it! Noah absolutely adores her and signs for her during the day wanting to know where she is. He actually went to the front door the other morning and sat there signing for her. I guess he thought it was time for her to come home from school.
It's official...we are going to hold off on preschool until next Aug. but go ahead and enroll Noah in daycare starting in May for 2-3 morning per week in a 2 year old room. I just feel that with his delays being so large he will do better with 2 year old vs. 3 year olds. Anyone else ever done that? I konw some therapist/parents look down on doing things like that because it seem you are holding your child back but I really think it's more beneficial for him in the long run. We will do daycare through July and then preschool in Aug. Hopefully he will have gained some ground developmentally and won't be so far behind other 3 year old.
I best go for now....Thanks again for the advice. We see the feeding team on Tues. so will be asking about getting him some private ST to help with talking and hopefully with drinking. Eating has really come along the past year so I think we are good there.
melinda
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Post by NoahsMommy on Mar 8, 2006 17:56:44 GMT -5
Hi. I haven't been on here for ages so for anyone who is not familiar with us...my son Noah has DS. Noah is 3 years old and has had a lot of medical issues...more than the average child with DS. Because of all of these issues, Noah was almost 2 before he was able to take anything orally. Things have been progressing and although he still gets the majority of his nutrition through G-tube feedings, he is eating orally and does a great job. He LOVES food!!
Our biggest problem is liquids. He does not have good lip closure and does not know how to suck (he never took a bottle) and therefore can't suck through a sippy cup. Basically to give him liquids we use a straw with the liquid in the straw and then drop it into his mouth a little farther back so it doesn't run out. We also sometimes use a medicine cup since they are small and flexible and we hold his chin up while giving him sips. This is all very time consuming, plus he will never be able to get rid of the G-tube until he can get enough fluids orally.
So I was wondering if anyone has any suggestions or techniques I can use to help him. Any ideas would be appreciated. We have tried sippies without the no-spill valve in and found it more difficult than the straw or medicine cup method. I'm just not sure what I should be doing to help him develop whatever skills he needs to be able to drink liquids.
He turned 3 in Dec and could have started preschool at school, but because of all of the past medical issues he has had we opted to not send him. He just had his trach removed in Oct. and we did not want to subject him to all the germs and viruses that would be at school during the winter. Also he still is not walking or talking and is on the small side. He does receive outpatient therapy at school, however I have been informed by the OT and ST that they will not work on feeding unless he is actually in school. He has an appointment with the feeding team next week so I am going to ask about getting private therapy for him in addition to help with these issues.
We have recently decided to enroll him in a daycare program for a couple of mornings per week in a 2 year-old class (since the gap in his development and other 3 year olds is so large) to hopefully help him gain some ground over the summer before we put him in preschool at the school in Aug. It would be nice if he could drink independently so the teacher will not have to be so consumed with him during snacks and meals.
Any ideas or suggestions appreciated!! Thanks!!
Melinda
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Post by NoahsMommy on Sept 20, 2004 23:03:43 GMT -5
Wow! I love this thread!!
I think the best thing about having a son with DS is the things he has taught me...I never take things for granted anymore. We have had MANY, MANY medical problems and he's still here fighting through all of it with more determination than I've ever seen anyone have. To me he's an angel sent straight from God. Somedays I just watch him and think he's like a little piece of heaven right here on Earth. I feel humbled at times that God has sent him to me...this precious yet complicated (medically speaking at least) little person...to care for and protect and love. My husband and I both at times can't believe we have been entrusted to take care of him.
He is the most patient and loving little guy I've ever been around. He's learned to give kisses and hugs on command and is so willing to do so. The other day in line at Home Depot I literally had to pull him off of my face. I love his chubby little hands with what I believe are the shortest fingers in the whole world. I love watching him as he learns new things. As other people have said about their child, he does not cry unless he's hurt and it stops as soon as he gets scooped up and soothed. He sleeps all night for about 10-12 hours straight. He loves attention and draws a crowd of admirers wherever we go. For example I had to take him to a Optometrist plastic surgeon doctor today. In the waiting room were about 6-8 older people and he commanded all of their attention and was having the time of his life...laughing, clapping, smiling, just showing off. The more people around him, the happier he gets.
He is absolutely amazing to me!!
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Post by NoahsMommy on Aug 31, 2004 22:17:44 GMT -5
I need help too. I've tried to use same username and password, which didn't work. I then registered differently and got a password generated and sent to me, but I still can't log in. I know it can't be that difficult.....Melinda
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Post by NoahsMommy on Aug 13, 2004 21:53:27 GMT -5
Hi Christine. Congratulations on your upcoming daughter's birth. As everyone else has stated, we understand how you are feeling. My son's name is Noah and he is 20 months old now. I did not know prior to his birth that he had DS so it was a HUGE shock. Those first few weeks it felt like I was living someone else's life. I think acceptance has been the biggest obstacle to overcome. Once I was able to accept this is my baby and he needs me more than ever and that this is just how things are, I was able to love him and just be his Mommy and him just be my baby. I have to say, He is absolutely awesome. I wouldn't trade him for anything in this entire world. He lights up a room like no other and people just walk away from him feeling better. We have had many medical issues to deal with (I won't go into details) so the DS has always been the least of our worries. I think my biggest advice would be to would be sure to get every test they can do to check for any medical problems that may be present at birth. Best of luck to you and your little miracle that awaits to join her family.
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Post by NoahsMommy on Jun 23, 2004 20:23:18 GMT -5
Hi all. It's been a while since I've been on. We have been a busy bunch. Noah and I have been in Minneapolis for the past 3 months where he has had 5 operations to date. He had one on his trachea to repair a hole that his trach had rubbed and caused, had his ASD closed, and 2 surgeries to remove the bad stricture from his esophagael atresia surgery from last summer, and a Nissen. He is doing very well. We were hoping to come home this weekend, but he's grown something from his blood and has to do a round of antibiotics so maybe next weekend. I also need to look into the Labor Day get together. We want to try to make it to something this year with Noah. He was absent last year because he was in the hospital.
Also, I would like to ask for prayers for a family I got to know really well here. We actually were introduced online early this year and then were able to meet up here at the Ronald McDonald house. Their son was born with DS and esophagael atresia like Noah. They were missionaries in India and moved half way around the world for him to have surgery here in Minneapolis. Unfortunately, he passed away this past Sunday. He contracted a staph infection, E. coli, and impetigo while in the hospital and basically infection just overtook him. His parents have done fairly well with it so far. They just left today to head back to Deleware (where they are originally from) for his funeral on Friday. Please remember them in your prayers as they struggle to accept what has happened and deal with the emotions that will follow. At the time they are too sad to be angry about what happened. He was perfectly healthy when he arrived here. It just doesn't make sense.
Thanks!!!
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Post by NoahsMommy on Apr 15, 2004 10:11:51 GMT -5
My prayers are with you and your family. What a precious gift God allowed in your life, if only for a brief time. I am so sorry for your loss, but happy that she has found eternal peace and happiness.
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Post by NoahsMommy on Jan 21, 2005 13:12:30 GMT -5
The previous post from wrblack (Bob) mentioned Dr. Foker in Minneapolis. He is the expert doctor for esophageal atresia, especially long gap. We had our son's surgery done in Cincinnati when he was 6 months old and we had lots of problems after. Not to say there wouldn't have been problems if we had it done somewhere else. But this time last year we made the decision and took him to Dr. Foker and had it redone. He has done more repairs than anyone and people bring their kids to him from all over the world. There were several babies there with it at the same time as Noah and three of the babies babies also had DS. Definitely worth mentioning to your friend.
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Post by NoahsMommy on Jan 21, 2005 13:07:55 GMT -5
Hi Heidi, My little guy was diagnosed with esophagael atresia (without the fistula) about 2 hours after he was born. We have been through a lot the past couple of years with him because of it. I would be more than happy to give you any information that you need. Feel free to give my email address to your friend if she would like to contact me. Also there is an EA/TEF website with lots of information and a message board. It's www.eatef.com. There's lots of info there from other parents about surgery, G-tubes, reflux, follow-up stuff, eating, etc. Do you know how long her babies gap is? My son's was 7 cm, which is very long. Hopefully her childs is smaller. I have been told that when there is a fistula they usually are shorter gaps. My email address is sunshine_kirby@yahoo.com if you would like to contact me or your friend. Melinda
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Post by NoahsMommy on Jan 11, 2005 22:09:18 GMT -5
Cbean, please forgive me for giving you incorrect info. I just reread my post and realized I was thinking of something different. Laryngomalacia is not the vocal chords, but the epiglottis. I told you my son had a lot of stuff going on in his airway...and this is only 2 out of 4 of them. His vocal chord swelling has reduced and come to think of it I don't even remember if the doc said anything about his epiglottis at his last bronch. I know Noah's in the past has been very floppy. He had a swallow study done a few months ago and was having a lot of trouble swallowing because he has a hard time working those musclese back there behing his tongue. He has always been tube fed because of other medical issues (long and in depth....) but now that I think about it he's been swallowing like a champ here recently. I know the speech therapist said that it should improve over time as he gets stronger and works those muscles more by swallowing, blowing a horn or bubbles and exercises like that. I'll have to be sure to ask out ENT about this at his spring bronch. Thanks for bring it up.
Melinda
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Post by NoahsMommy on Jan 11, 2005 21:51:25 GMT -5
Hi Cbean. Congrats on Emily! I don't post too often but check in every now and then. I just wanted to jump in about the laryngomalacia. My son had that. At 5 months of age he had to get trached because of it as well as a couple of other airway obstructions. With the laryngomalacia his vocal chords were extremely swollen, so much so that they were literally touching each other and air could not get through. He had a bronch this past Sep. (at 19 months old) and it has resolved. We have pictures from all of his bronchs and you can tell the swelling gradually decreased. We still have a couple of more issues with his airway, but at least one thing is better!! Hope this helps some. Congrats again!!
Melinda
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