tag:blogger.com,1999:blog-401303964563152307.post834652594234673333..comments2024-03-17T12:02:12.410-04:00Comments on Love That Max : What happened to Max: Up to the moment we knew something was terribly wrongEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger52125tag:blogger.com,1999:blog-401303964563152307.post-63013291260166380602018-03-24T02:15:50.934-04:002018-03-24T02:15:50.934-04:00If үou wisһ for to increase your know-how just keе...If үou wisһ for to increase your know-how just keеp visiting this web site and bе <br />updated ᴡith tһe newest news update posted һere.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-31302682497240677502017-07-18T16:21:38.942-04:002017-07-18T16:21:38.942-04:00 Decided to chip in as a 70 year-old who has just ... Decided to chip in as a 70 year-old who has just discovered from an MRI brain scan that I had an undiagnosed stroke at birth. I am the firstborn of female twins and it was a first pregnancy and a vaginally delivered double breech, forceps delivery (in China). <br />I have no mental impairment (high IQ) though have always had memory problems.<br />Aspergers did not exist as a diagnosis here in the UK until about 20 years ago and soon after I was diagnosed with Aspergers and ADHD. Further research has shown both conditions are strongly related to birth injuries, especially stroke (cerebellar stroke for autism).<br /><br />Note there was NO medical intervention,(apart from forceps!) Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-1581445469577770562014-07-31T09:33:31.219-04:002014-07-31T09:33:31.219-04:00My situation was totally different. When I was twe...My situation was totally different. When I was twenty weeks pregnant, the doctor informed us that one of my babies Noah had SB, spina bifida, hydro and clubbed feet. Me and Connor (my partner) were shocked. To cut a long story short, both boys were born 1st July 2014 at 2pm. I didnt enjoy the rest of my pregnancy because I was terrified and considered but decided not to terminate. <br /><br />Holly Ashworthnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-37608216157469994742014-07-25T05:12:42.419-04:002014-07-25T05:12:42.419-04:00Thank you for sharing with us your story. I have t...Thank you for sharing with us your story. I have the same story with my six years old son, and I have the been thinking what I well do and been send for the rest of my life. and this have chaired me up. <br /><br /> Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-23069559819035344872013-08-21T16:07:03.509-04:002013-08-21T16:07:03.509-04:00What a tender, tender story!!! Thank you so much ...What a tender, tender story!!! Thank you so much for sharing it, my heart is aching as I read this. I can really feel the emotions.Michellehttps://www.blogger.com/profile/12615070930284772593noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-73652352066374229252013-08-12T21:42:56.712-04:002013-08-12T21:42:56.712-04:00In the words of Michelle Tanner - How rude. In the words of Michelle Tanner - How rude. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-1448693790174811912013-03-07T22:44:21.755-05:002013-03-07T22:44:21.755-05:00I have only just read the first part of Max's ...I have only just read the first part of Max's story. It brings back a lot of memories. I was young and healthy and did "all the right things" during my pregnancy. We got "lucky" that I was measuring so far ahead of where I should have. At 30 weeks my doctor decided I should have an ultrasound (back then they didn't do routine ultrasounds). He thought maybe there was too much amniotic fluid. This was pre-internet so I couldn't scare myself to death with google thankfully. The scan was on a Friday afternoon. Sunday at 8pm my OB called me. There was pretty much no amniotic fluid around the baby and his kidneys were severely enlarged and cystic. His bladder and ureters were huge as well and his abdomen was larger than his head. We had to go out of state to see a high risk pregnancy doctor. More scans and they told us our baby had posterior urethral valves (PUVs - a little piece of tissue that isn't suppose to be there that blocks urine from getting out of the bladder). The doctor old us that babies like this die, but we were young and could have other children. Anyway, his story is VERY long (thankfully!!!) and the fight to keep him with us has been a struggle at times, but so worth it. He also has autism, which strange as it may seem has been harder to deal with than dialysis, surgeries, feeding tubes, etc. That baby that was never suppose to be born alive will turn 21 years old next month and in June we will celebrate his 16th kidney transplant anniversary (pediatric kidney transplants don't usually last longer than 10 years). I'm sorry that you and Max have been given this struggle, but it sounds like you are the perfect mom for Max. I always wanted to write a book (no blogs back then!!), but just never got around to it or could articulate what I wanted to say. Thank you for having the courage and talent to share your story.Shelly Dowdlehttps://www.blogger.com/profile/12154443157934774385noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-68017536526280871552012-10-24T09:44:38.662-04:002012-10-24T09:44:38.662-04:00I am really sorry for you and this story breaks my...I am really sorry for you and this story breaks my heart..<br />But sadly this occurs alot.<br />Maybe too much medical intervention..<br />Epidurals, Inducement ( why ? ) then c-section<br /><br />could ever see nature being nature...then add a Hep B vaccine and you get these results.<br /><br />I am sorry for you.<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-12042020533019937102012-08-04T13:06:41.163-04:002012-08-04T13:06:41.163-04:00I didn't realize just how much we had in commo...I didn't realize just how much we had in common until I read Max's Story. I tend to imagine that Betty Boop is the only one with monstrous issues. Unfortunately, the sad and disturbing fact is that there are lots of sick kids out there. I'm sorry that Max, and you had to go through so much. My prayers are with you. I'm glad that we connected!Sylvia Phillipshttp://faithfulmomof9.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-73935696782203965682012-04-29T20:32:58.172-04:002012-04-29T20:32:58.172-04:00Dear Mrs.Siedman,
I too have a child with cerabal ...Dear Mrs.Siedman,<br />I too have a child with cerabal palsy.My daughter Shelby who is 18 has axtasic CP.She has leg braces and hours of therpey every week.In a month my baby girl is graduating high school.Shelby has a cognative hearing impairment and has vision impairment as well.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-22761330594282328852012-04-19T15:53:01.292-04:002012-04-19T15:53:01.292-04:00Ellen,
Came across yr blog through facebook post ...Ellen,<br /><br />Came across yr blog through facebook post and Im so glad I did. Reading your birth story brought tears to my eyes from beginning to end. I completely understand how u felt. I went through very similar circumstances but I didnt get answers until my son was 6 months old. I want to thank u for this blog I am going to begin to follow this blog. Us Moms need to stick together.Noahsmom2007https://www.blogger.com/profile/17710381329926024626noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-4369480908522968782012-04-10T01:50:39.866-04:002012-04-10T01:50:39.866-04:00Dear Ellen,
Your honesty and openness are inspiri...Dear Ellen,<br /><br />Your honesty and openness are inspiring. Thank you for sharing. Haven't seen you or spoken to you in too many years but your writing is your voice.<br /><br />Hope you are doing well and that we can see each other soon.<br /><br />Nona :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-58058363387553254802012-03-08T09:01:56.872-05:002012-03-08T09:01:56.872-05:00Hi I was just read your story about Max I too have...Hi I was just read your story about Max I too have C.P. and the names and being made fun of as a child.was not easy I am so glad have you and Dave as parents.the Dr. can do so much these days.I was born in 1959 and at 1 pound 5 0uces I am glad I am here....I didn't have a supportavieme. family,back then not much was know about C.P. and not much was done for.I got married and I HAD a miscarriage and never tryed to have any more children. my own sister's called me a retart and stupid and I was a sad child many times I wanted to DIE but God HAS ME ON THIS earth for a reason and i am going to stay so I can find out?<br />good Luck to your family<br /><br />Sincerely,<br />pattiPattinoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-14412973549326192982012-01-15T18:04:29.489-05:002012-01-15T18:04:29.489-05:00your Max could be a brother to my Della! Darling. ...your Max could be a brother to my Della! Darling. God bless you!Maryhttps://www.blogger.com/profile/17070247759841981253noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-89501876937744892542012-01-07T03:08:37.584-05:002012-01-07T03:08:37.584-05:00Hi, I just stumbled upon your blog from Parenting....Hi, I just stumbled upon your blog from Parenting.com and was completely intrigued. Both of my brothers have Aspergers, so some of your stories really hit home. Your family is very inspirational (:.<br /><br />After reading Max's story, I started thinking about the brain damage he suffered and was wondering if you have ever looked into hyperbaric therapy. It exposes the body to oxygen at levels beyond what we are exposed to on a daily basis. It's often used to help regenerate tissues after major damages in sports, etc. A friend of my family runs an office with chambers now, as it helped her daughter walk after suffering lesions on her brain that left her wheelchair bound. I'm not saying it will completely repair the tissues that were damaged in Max's stroke, but I feel that it may be worth a try for your family. I've seen it work wonders with my brothers as it opens up new passages through the brain to help with new ways of thinking and motor skills. Here's the website of a foundation that provides it to children in my community, just to give you a feel for it.<br />http://healingkidswithhbot.org/?page_id=11<br /><br />I wish the best to your family, and a happy new year!Samminoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-32277156795506197202011-05-23T09:14:41.773-04:002011-05-23T09:14:41.773-04:00This is a great blog!
I had a sister, Annie, wit...This is a great blog! <br /><br />I had a sister, Annie, with cerebral palsy who was born a year after me. She was much more disabled than what Max seems to be from what I can tell by looking at the pictures. (I haven't had a chance to read through much yet.) You are so lucky.<br /><br />Anyway, after Annie died in 2009 (at the age of 51) I wrote a memoir about her that I hope to self-publish someday.<br /><br />I also am trying to start a blog about developmental disabilities that can provide both information and inspiration. I haven't been able to work on it much, as of yet.<br />You can find it here www.anniememoir.wordpress.com<br /><br />If you have a chance, take a look at it and see if you and Max would like to participate in some ways as contributors. Perhaps we could just repost some of your posts from here from time to time. At minimum I would like to be able to link your blog to the site. <br /><br />Keep up the good work. What you are doing is so important.CMSmithhttps://www.blogger.com/profile/13623922567796370246noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-15854874465677044602011-05-16T10:12:46.047-04:002011-05-16T10:12:46.047-04:00Greetings all, I wish to share several things with...Greetings all, I wish to share several things with all of you here. The first is a short quote that saw me through several times "I cried because I had no shoes until I met a man that had no feet". While my life was harder than many, I know there is always some one out there having it worse than me. I do not mean that to belittle others, for we each fully carry the burdens given us as if they all weighed the same, such is the experience of life. Another 'see-me-though-this' is a very short piece I copied to my FB and written by the wonderfully humorous writer, Erma Bombeck, R.I.P. <br />http://www.facebook.com/note.php?note_id=246848334189 <br /><br />My sons story is a bit of a long read, but if you wish to do so, here is most of the story. Due to the original location the story was pub'd to I left a significant factor of sexual abuse by his step sisters that I was not even aware of until he was almost grown. <br />http://www.facebook.com/note.php?note_id=250085339189<br /><br />Finally a poem I wrote for those who have lost a child, for whatever reason ( I lost a premie son prior to giving birth to Steven) http://www.facebook.com/note.php?note_id=378743739189LadyPegasushttps://www.blogger.com/profile/01045079610375378582noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-23527563330609449772010-10-09T10:06:44.260-04:002010-10-09T10:06:44.260-04:00Your experience is both beautiful and heartbreakin...Your experience is both beautiful and heartbreaking. Thanks for having the courage to share it. I'm hoping that this was healing for you when you wrote it. I can not imagine anything like this. I've had two preemies and two full term ... my heart goes out to you and your family. I'm about to read part 2; I just needed a break as my emotions began running over.Petulahttps://www.blogger.com/profile/11246335892746223347noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-91691995607406746072010-10-06T22:39:17.997-04:002010-10-06T22:39:17.997-04:00Ellen, when I read September's issue of Goodho...Ellen, when I read September's issue of Goodhousekeeping I was shocked. I have a 13 year old daughter named Kara who also had a stroke at birth. For 4 months we didn't know about the stroke, she started having seizures at 5 months old. The small town we live in the doctors had no clue what was wrong, and told me I was a young first time mother and worried too much. To make this kind of short she had to have surgery in 2000 to stop the seizures, which by the grace of God worked, she is now 13 walking and in full teenage mode. She doesn't talk but communicates her wants. I understand your love for Max because Kara is my life and I thank God for giving her to me. God bless you and Max.Brandi Tiptonhttp://brandibrandijo@gmail.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-52932585676873680622010-08-19T12:06:37.413-04:002010-08-19T12:06:37.413-04:00Ellen,
Just found your blog through the GH articl...Ellen,<br /><br />Just found your blog through the GH article. I just had to write you. I am a 43 yr. old SAHM with 5 kids. One by birth & 4 by adoption. My youngest 4 are all bio sibs & have mild dev delays. Parenting special needs kids is such a challenging, but amazing gift. I also had a stroke as an infant and have mild CP as a result, spastic hemiplegia. I have had my share of challenges, but I find a way to do anything I set out to do. My disability gave me the gifts of compassion, emphathy and the drive to encourage my children to believe in themselves. Thank you for sharing your story, it is inspiring to so many.Karenknoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-58415054630188185722010-05-21T15:02:54.964-04:002010-05-21T15:02:54.964-04:00Ellen,
SOOOO glad to have found your site. As a...Ellen, <br /><br />SOOOO glad to have found your site. As a mother to a precious bundle of high intensity cuteness with special needs, Evelyn, I was feelign alone and hopeless. Finding your site has helped me to re-connect. I still cry daily..... still reading through yoru site and beign a human sponge! Just wanted to share our blog http://evelynelise.blogspot.com/<br /><br />PS I love that Max- he is SO beautiful!Ev's momhttps://www.blogger.com/profile/14904551256652065612noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-78176661565223967562010-05-13T19:32:42.737-04:002010-05-13T19:32:42.737-04:00Ellen- i found your blog on a facebook fanpage for...Ellen- i found your blog on a facebook fanpage for lancome... but i dont even care. I'm 16 and thought it would be nice to win it for my mom... but i read the description under your blog name.. "a blog about kids with special needs/ and parents who adore them." im actually only 16 but i have a brother who was born with cerebral palsy, mild forms of autism, ADD, ADHD, and about 5 other diagnosis'. i am very familiar with your experiences. its so refreshing to hear your story because not alot of people understand and can not possibly understand the difficulty my brother's disabilities bring. As a 16 year old, sometimes i wish he could just be "normal", i wish that my parents wouldnt have to deal with all the deal with and that i could have an older brother who would take me out for ice cream, and who was the star football player at my school. its so nice to know that im not the only one. the only one thats sometimes disappointed and frustrated; but i also know that im not the only one whos still fighting, who still loves these boys with all my heart and will never give up. thank you again for everything. for being honest and expressing feelings that i feel all the time, and sometimes feel like no one else knows about. its such an inspiration and i admire you alot for having such strength. <br />blessings to you and your family (: your son is beautiful and is very lucky to have a mother like you. i will very much continue to keep up with your blog! <br /><br />-Priscillaprishttps://www.blogger.com/profile/05335961398668805768noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-12842087821705723132010-04-11T14:44:12.010-04:002010-04-11T14:44:12.010-04:00This is so touching. For us our asd awareness didn...This is so touching. For us our asd awareness didn't come until our son was a few months old. I knew so early though. I'm glad my friend showed me your blog. My 2nd cry of the day :)Moms of ASD Childrenhttps://www.blogger.com/profile/10233510988722059840noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-55437612825707541462010-03-29T15:22:08.188-04:002010-03-29T15:22:08.188-04:00Ellen, thank you for sharing your story. It was in...Ellen, thank you for sharing your story. It was incredibly moving. Parenthood is full of ups and downs but worth the trip. I hope sharing your story is cathartic and knowing you have many people out there to support youkim gellmanhttp://www.artisticsensations.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-84339644565357443872010-01-14T16:17:32.213-05:002010-01-14T16:17:32.213-05:00Hi Ellen,
Oh my goodness! I don't even know wh...Hi Ellen,<br />Oh my goodness! I don't even know what to say. What an ordeal. This is my first visit to your blog and I appreciate that you found the strength to share your story. <br />Based on his picture in your blog header I know that Max is ok and beautiful! I'm off to read part 2!<br />MichelleMichellehttps://www.blogger.com/profile/09764178232137119622noreply@blogger.com