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Tommy's
Preemie
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The Guestbook at Tommy's CyberNursery Preemie Web site - Archive 19Hi Tommy: My son is sixteen today. He was twenty eight weeks baby. He had hyaline membrane disease. Was in intensive care four weeks and came home on Christmas Eve 1981. Now he is in high school, makes "A's", plays sports and got his drivers license today. So I enjoyed your site and the walk down memory lane. To all you parents, they grow up very fast even though they start very small.
Janet Hi Tommy: I want to say congratulations on the birth of your little girl, she is so cute! Also i want to say that you're story is very helpful to me. It also sounds very familar. My baby was born on Sept 28, 1997. He was 2lbs 5oz, and was born at 27 weeks gestation. His Name is Kolen Tyler Anderson. He was born at holly cross hospital, and was there for the first 8 days of his life. You were right about that honeymoon period thing. He was born very sick but he imporved drasticly. by the 5 day of his life he was on the CPAP and he stayed on it, untill he was transfered to Childrens National hospital in D.C. The second monay after he was born he got really sick, he had just started breast milk, and he was throwing it up. They did X-rays and found that his abdamon was filled with air, and he was backing up everything in his intestines into his stomach. They belived that he had a preferation somewhere. They immeditaly transfered him to Childrens. This was the worse experience in my life. I would never wish anything like this to happen to anyone. Before he was transferred, i had him baptised by the hospital chaplin. The re-incubated him and put him in a transport incubator. and off he went to the hospital. When they did his surgery they found two hole in his intestine, and they removed that part, because that part was dead. They removed about 2 inches in all, which wasn't much at all, that was the most encouraging part. When i talked to two of the surgeons about the surgery the head surgeon(the top dog of the hospital, they called him) he said that it was NEC, Necrotizing entrocolitis.This is were the bacteria, even the good bacteria in his intestines start attacking his body and cause a serious infection that can kill his intestines, which can be fatal, if not caught in time. The other surgeon said that it wasn't NEC, so i guess it is a borderline thing. Anyways, he went through the surgery like a fighting tiger. He has been on and off the ventalators since. he has even been on the nasal canula, and i finally got to hold him for the first time in 3 weeks. That only lasted for 4 days,because the had to put him back on the CPAP, and eventually they had to re-incubate him, and then back on the CPAP, ect(you get the point) but i didn't mind it, cause i got to hold him, and as long as he wasn't getting worse, i was ok, cause i knew i would eventually get to hold him again. He has had one infection right after another since the surgery, but he gets through them just fine. He has even gotten a mild case of spinal menigitist, but they got the test results back the other day and they were negitive. He's a fighting tiger. He is very strong, i have been told many times. The had to give him some paralyzing medicine one time because he had an infection and he was crying to much and getting air into his tummy, and they wanted him to rest. Well the nurse gave him the medicne and when i was talking to the Nurse Practiciner about 5 or 10 minutes later and he was just telling me that he was being a stubborn little one and didn't want to stay still, and he kept pulling everything out, and that he didn't want to do what they wanted him to do, the nurse looked at the Nurse Pactitioner and said "He's still moving, now what do i do?!?!" The nurse gave her a stunned look for a split second and then looked at me and said "See what i mean by stubborn, he's a real fighter!" He ordered another dose, and that did the trick. I'm so proud of my little boy, just as you were of yours, and i'm looking forward to the day i can finally bring him home. Untill then i rely on the support of my friends and family, i don't know what i would ever do without them. I wish your family the best of luck, and a happy and prosperous life together, and when they become teens, my advice to you(i'm a teen, i'm 17 almost 18) is be open and honest, they will most likley follow your example. Try not to forget what it was like to be a teen, that will help you out the most. Good Luck!!!
Richelle Anderson <ander@bhs.edu> Hi Tommy: My daughter is also a NICU graduate. She was born on Oct. 30,1995, 3 weeks early, weighing in at 5lbs. 3 1/2 oz. She was born with a tracheo-esophageal fistula, which means her esophagus wasn't connected at birth. She had surgery when she was 17 hours old. She went home 2 1/2 weeks later. She is now 2 years old and enjoys pesting her older brother. It's great to hear that everyone in your house is healthy. Keep enjoying life and God Bless.
Nicole Rose <rosepatc@pacbell> Hi Tommy: MY mommy has me on her lap... I'm Barek, a thirty weeker, born 8-22-97, and just came home from the NICU on 10-23-97. I only weighed 2 lb.90z. at birn but today am a swarthy 5lb, 3oz. My Mommy and Daddy are still adjusting to life with monitors, O2 and no sleep..... just wanted to say hi!!!
Dionne Zick <dionne.zick@polymerland.com> Hi Tommy (and your Mum & Dad): We have a little boy called Ciarán. He was born at 25 weeks gestation. My wife and I read your story and all the memories came flooding back. Ciarán was born on 1 August 1996 and came home on 20 December 1996. We remember the interminable wait, the fear of losing our child, and then indescribable joy of the day he came home. We owe the doctors and nurses at the Mercy Hospital for Women in Melbourne, Australia a debt of gratitude that we know we never can repay. Thank you for sharing your story with us. There is a little boy who has crawled underneath Daddy's desk and is wanting to type in his own message - well Daddy is hitting the keys - why can't I? Best of lck for yor ufutreuu - see! Robert, Pauline, & Ciarán
Robert & Pauline Bishop <bishop@cyberalink.com.au> Hi Tommy:(and his parents) Our son Jack was born this summer very much the same way you were. He was born 6/26/97 weighing 1 pound 8 ounces and was 13" long. I was due 10/11/97 so he too was a 25 weeker (24 5/7). I'm happy to report that he came home on 9/11/97, exactly 11 weeks after he was born, on no medications or monitors. Today he is over 7 1/2 pounds and 19 1/2 inches long. It was WONDERFUL to read about your experience and to see how healthy and happy you are today. We have a lot to be thankful for and a lot to look forward to! Deanna
Deanna Heller <fbvc60a@prodigy.com> Hi Tommy: Wow what a wonderful young man. My little girl has a very similar story. Her name is Nicole and she was a 24.5 weeker. She is now at 32 weeks. Your story has been very uplifting for us. God Bless you and your parents. Your parents deserve a lot of credit for what they went through for you. It takes a lot of strength to handle everything a preemie requires you to handle but miracles like you make it all worth while. Best wishes to you and your family. Jackie
Jackie <frogandkeg@prodigy.net> Hi Tommy: WOW!!! You are quite a miracle! You are so cute! : ) Your homepage is the best we've ever seen. I am going to have a little girl named Nikole. She is 28 weeks 2 days. We hope she can stay in my tummy for lots more weeks! Your story gives us so much hope!!! Thank you for sharing your beautiful story! Take care, Tommy! Rick and Jennifer
Jennifer and Rick Haberkorn <Rickhabs@aol.com> Hi Tommy:I just visited your site and thought it was wonderful. I am a mother of 3 and my third baby was a premee like you she was born at 33 wks gest.weighing in at a very very tiny 1 lb 11 ozs and only about 12 inchs long.instead of the average 4 to 4 1/2 lbs and 14 to 16 in.. her name is Samantha Jo we call her Sammie jo.she was born may 26 1995 at St.lukes Hospital and transported to St.Johns neonatal icu that eveing here in St. Louis they took her by c-sec. because of her size and there was no amniotic fluid around her(my water had not broke,my body had absorbed it) the placenta was only the size of a lg.donut and it was half crystalized .we are very blessed to have her here with us now. she was only in the hospital for 7 wks and came home on NO MONITORS OF ANY KIND she was still just tiny (3 lbs 2 ozs).she is a very happy 2 1/2 year old with no delays of any kind .they still do not know what went wrong with my pregancy and Sammie jo they have not been able to pin point it.I am glad to see other miracle babies doing just as well and happy as sammie jo is and I am glad to see that ther is a place for parents to go to so they can see how good all these babies are doing and give hope to those parents who need it now.Tommys parents I would like to know if you know of anyone or anyplace that I could find out more info on severly IUGR babies like my daughter I have looked every since she was born and have not been able to find really anything on IGR ( intrauterine growth retardation ) I would greatly appreciate any info. thankyou and God bless all of you. Sincerley, Mrs.Paula d Sherrill
Paula D Sherrill <eaglesdomain@jcn1.com> Hi Tommy: I too am involved in the NICU world...I have a beautiful 25 weeker there right now....http://www.angelfire.com/me/lilribbit/index.html is her web page. Your story is very encouraging....and you are a little doll! We are also building a "scrapbook" for out granddaughter with email and guestbook signings...a wonderful keepsake for when she grows up... Love to you and your family Joanie
joan worley <thesneezie@juno.com> Hi Tommy: I'm a nurse who works in an NICU with babies just like you and i just wanted to let you and your family know that stories like yours are the happy endings that all NICU nurses pray for. Your wonderful outcome is the reward NICU nurses enjoy, making our work so meaningful and worthwhile. Thank you for sharing this with all of us...and congratulations on the most impressive web site I have seen!! Deb Grove RN,C Carle Foundation Hospital, NICU
Deb Grove <Deb.Grove@Carle.com> Hi Tommy: I just read your story and some of the messages that you have gotten from other visitors. What inspirational stories! I was a preemie too! I was born January 1976 (21 years ago), in Alberta, Canada. My mom's due date was the middle of April , so I was almost as early as you! I weighed 2lbs 11oz when I was born but then dropped to 1lb 12oz. Unlike most preemies born at that time, I was one of the lucky ones! I was born healthy and strong and was only on a respirator for a short time. After I reached five pounds, I was allowed to go home; this only took a couple months. The hospital that I was born at conducted a study on a few preemies that lasted eight years (it checked our development, to make sure that we were growing okay). Anyways, to make a long story short, I am now 21 years old, almost a University graduate (only another year and a half), and am in perfect health. My family used to laugh because I was the tiniest baby but until I reached grade eight, I was the tallest kid in my class, taller than even the boys! I had also always been healthier than my sister who was born in 1980 full term. Have fun with your new sister! Sisters can be lots of fun, I know mine is. Patricia PS. I am currently interested in any stories or related Web Sites featuring stories about older preemies (born before 1985). I am doing a study on the improvements and advances in care of preemies and how the outlook has changed over the last 30 years. If anyone has any ideas, please let me know. I can be reached at: barrows@sfu.ca
Patricia Barrows <barrows@sfu.ca> Hi Tommy:I love your page that your daddy does for you. I wish there would have been something like this and Preemie-l when I had my twin boys almost 17 years ago(10/14/80) They were born 10 weeks early, Jim weighed 3lbs 2 oz and Jesse weighed 3lbs 3 oz. They were in NICU for 44 days. Jesse had PDA sugerey when he was 9 mos. old. They are doing great now. It took a long time for them to catch up size wise.But now they are both over 5' 9" and still growing. I love the pictures of you and your sister. I hope Alyssa isn't keeping you up nights. Your Mommy and Daddy are very blessed to have you two. Be Good Peggy
Peggy Pierce <frpierce@penn.com> Hi Tommy: Just making sure the script is functioning!
Daddy <clarkk@flash.net> Hi Tommy: I love your site and I am so happy to see that you are doing well. I have found your story inspiring and look to it for hope for my daughter Alexandra. Alexandra Melina Landry, was born at 23 weeks, 1 lb. 4 oz, June 5, 1996. She has overcome many serious health problems. One chronic condition remains, a section of small bowel that does not work properly which has already resulted in five surgeries. She is despite these problems, a beautiful, happy little gir. She is behind developmentally (we're still working on learning how to sit and crawl at 14 months). We take one day at a time and we are happy with what she gives us. She never gives up and we won't either. I am sharing these resources with other parents of preemies who do not have access to the Internet. God Bless!
Tanya Landry <landryrl@conquest1.com> Hi Tommy: I love your site and I am so happy to see that you are doing well. I have found your story inspiring and look to it for hope for my daughter Alexandra. Alexandra Melina Landry, was born at 23 weeks, 1 lb. 4 oz, June 5, 1996. She has overcome many serious health problems. One chronic condition remains, a section of small bowel that does not work properly which has already resulted in five surgeries. She is despite these problems, a beautiful, happy little gir. She is behind developmentally (we're still working on learning how to sit and crawl at 14 months). We take one day at a time and we are happy with what she gives us. She never gives up and we won't either. I am sharing these resources with other parents of preemies who do not have access to the Internet. God Bless!
Tanya Landry <landryrl@conquest1.com> Hi Tommy:I am a mother of 2 preemies one born at 26 weeks and one at 33 weeks. they were born exactly 6 days less than a year apart. Katie is now 4 and Andy is now 3 and both are doing great they are verry healthy. visit our site to see pictures of them ...
{Riah} <schin@dekalb.net> Hi Tommy: I AM THE MOTHER OF A 25WEEKER..... SHE WAS BORN WEIGHING 1LB. 11OZS. AND WAS 14 INCHES LONG.. IM 17 YEARS OLD (AT THE TIME IS WAS A MONTH SHY OF 16)AND HAVING A PREMATURE BABY ON TOP OF EVERYTHING ELSE WAS VERY HARD AND IT ALSO TOUGHT ME A VERY GOOD LESSON..I WANT TO SAY THAT IT TAKES A LOT FOR A PARENT/PARENTS TO COPE WITH HAVING A PREMATURE BABY...I AM I SINGLE MOTHER AND HAVING THAT TO DEAL WITH TO WAS VERY HARD......KYLIE WAS BORN ON APRIL 9, 1996..SHE DID NOT COME HOME UNTIL JULY 11, 96.. I THINK PART OF THE HARDEST PART IS KNOWING U HAVE YOUR BABY AND YOU CAN NOT BRING HIM/HER HOME..KYLIE CAME HOME ON OXYGEN AND A MONITOR, (JUST LIKE TOMMY) THIS JUST ADDS TO THE STRESS..I WANT TO TELL ALL PARENTS AND THEIR FAMILY MEMBERS THAT NO MATTER WHAT U HAVE TO PRAY...HAVING A PREMIE IS BY NO MEANS EASY, BUT IT MAKES YOUR CHILD MORE SPECIAL TO YOU..THANK YOU!! I WANT TO WISH TOMMY AND HIS ENTIRE FAMILY LUCK!! IF ANYONE CAN HELP ME DO A HOME PAGE CAN U PLEASE E-MAIL ME THANK YOU!!
DELAINA <LADYD222@AOL.COM> Hi Tommy: You're site is absolutely incredible. Thank you for sharing your inspirational story! What a strong and beautiful little boy you are!
Kristin & Allie <mommyiam@aol.com> Hi Tommy: I'm glad you are doing so well. I am the mother of a 26 weeker. His name is Elijah, born on 5/11/96. He is now 14 months and is also doing well. He has ROP and glasses. He is almost ready to walk and is going to PT. How does it feel to be a big brother? Elijah may soon be a big brother soon, but I am very nervous about having another child. I don't know how to get over it, but just do it. I'm very glad things worked out well for your family and best of luck! Tina Johnson
Tina Johnson <tina_johnson@maxtor.com> Hi Tommy:This is an amazing story. I am 27 weeks and have had lots of problems this story gives me hope thank you.
Amanda Clements <jewell@cutie.com> Hi Tommy:I am the mum of a ten week premmie son. I have never been on the web before and am thrilled at this discovery! I'll be back, for sure. I look forward to getting to know you better.
Nikky Malcolm- m/o Kurtis James Hi Tommy:How wonderful to find your cybernursery tonight. I am very grateful for your parents sharing this with me. I just returned from visiting my granddaughter that entered this world a lot like you last Wednesday evening. She was also a 25 week baby and weighed in at 1 pound 14 ounces. We have been so concerned about Anna Jean and what is happening to her and wondering what is ahead for her. Just as her Grandfather and I went to tell her good bye tonight we found they were putting her on a ventilator. We had been prepared but were so disappointed. I thought I could come home and find lots of information on premature babies on the web and received a great big disappointment. I was so thrilled to find your spot though. I am going to figure out how to print out your journal and mail it to Anna Jean's parents. Thanks again Mom and Dad. Bonnie and Charles Anderson aka Nana and Popa
Grandma Bonnie A <BonnieAnderson@msn.com> Hi Tommy: great page you got here! :)
Merci <merci@adf.com> Hi Tommy: Happy birthday next week! Heard you have a new baby sister!! I have a son, Damien, who was born weighing 3lbs 13oz on October 27, 1996 (6 weeks early). (He was almost born at 24 weeks but the doctors managed to hold it off 10 weeks.) He also spent time in the NICU (10days) because of his heart and also high billiruben. He is now 8 months old and just learned to turn over -- now he won't lie still!! You like trains? I have a little wooden train that I am saving for when Damien is as old as you.
Hanna Rimes <HRimes@Bruderhof.com> Hi Tommy: Just wanted to tell you hello and wish you a very Happy Third Birthday!! Your mommy and daddy are two very special people, with a VERY special little boy. My little girl was born at full term, and your story of survival reminded me again how lucky my family is. You are going to be a terrific big brother -- you will have to show your new brother or sister "the ropes", especially where Mama and Daddy hide the cookie jar!! Tell your mommy that even though she will not be able to experience a vaginal birth, she is already so very blessed with the full term baby she is carrying. (Although, I know that she already knows this!) Happy Birthday!
Stacey <tshorter@execpc.com> Hi Tommy: My name is Evelyn Faith Inman my mommy is writing to you on my behalf. I was born 12-8-96, at 23 weeks gestation. At first, my doctor didn't even want to save me. He gave me a 2% chance of surviving and having any kind of a normal life but my mom and dad fought for me.I was 1pound and 3ounces when I was born and I was very sick I fell below the 1pound mark for quite a while. I had a PDA operation on my heart, and an operation to remove a cyst from my lung and quite a few chest tubes 8 in all. I had a grade 2 brain hemmorage and numerous infections. To make a long story short I came home March 31,1997 three days before my due date weighing 3 pounds 10 ounces, on oxygen and monitors. I've been back to see my eye doctor and he says my eyes are going to be normal pretty neat when you consider they were sealed shut the first to weeks of my life. My doctors also say that they see no signs of cerebal palsey and they're all quite amazed by my progress I'm three months old adjusted and weigh nine pounds I smile all the time and love to be talked to and held. Considering the odds that were against me, I can only be thankful that my mommy and daddy had enough faith in God to give me the chance I now have. I even got to go to church last week and meet all the wonderful people that prayed for me. It makes a girl feel quite special to know that their are so many who care for her. So I guess I really have alot to smile about. Take care, and God bless... Evelyn Faith Inman
Michelle Inman <michelle001@juno.com> Hi Tommy:
Michelle Inman <michelle001@juno.com> Hi Tommy:
Michelle Inman Hi Tommy: My name is Rebecca and my husband is Steven. Our daughter Ashley-Hope was born on January 23, 1996 at 25 weeks gestation weighing only 1lbs. 14 oz. It was a very awesome experience! I still have not completely gotten over it. Ashley spent four and a half months in the hospital. My life will never be the same since this experience. She was very sick for a very long time and remained on a respirator for 13 weeks and required oxygen for 10 weeks after that. She required surgery for a heart murmur. Her lungs collapsed several times on different occasions and she had a (not sure of spelling) pnemothorax. She had 2 bouts of pneumonia and another one since coming home. She suffers from an eye condition called retinopothy of the premature but I am told it is getting better and she may not require glasses. There were several times that we did not think she would live but she did and she is doing quite well now considering all she went through. She does suffer from Broncho Pulmonary Dysplasia (BPD) which causes her to have asthmatic-like attacks. It has been a tough winter with germs every where you turn. I have not returned to work as I feel that she needs all my attention. My problem is that sometimes I need other people to talk with that understand my situation. I live in Quebec, Canada and there is and Association for Parents of Premature Children but all the literature and people are french. I would like to be in touch with someone who needs a pen pal of sorts to talk with and share stories so please get in touch with me at my uncles e-mail address and I would love to correspond. Hearing Tommy's story is encouraging as Ashley is now 17 months old and still not walking - she is very tiny - I always try to remember that she is progressing at her corrected age quite well which would be 13 months. So anyone who would like to correspond please feel free and good luck to all you other parents out there, we know how you feel. Regards, Steven, Rebecca & Ashley Quebec, Canada
Rebecca <bob.piette@acbm.qc.ca> Hi Tommy: I am the mummy of two year old twin boys, Levi and Cody. They were born 11 weeks early on 22nd December 1994. They have just had a new baby brother on 24th April 1997. His name is Gideon. I'd love for you to visit my page and come see the terrible twins too.......please sign our guestbooks when you visit and let us know about your new brother or sister!
Lori Paton <elandea@fl.net.au> Hi Tommy: It was woderful to read about your progress. It brought back many memories for me. My son Tony was born at 28 weeks at 41/2 pounds. I didn't realize at the time that there were babies being born at much earlier gestation. Well, Tony is seven now! Tony still receives physical therapy and occupational therapy. His motor delays were caused by his prematuraty. I was wondering if there are other parents that had the same problems due to premature birth and if they overcome these delays. It just seems that he has never caught up. Any info would be helpful. thanks, laurie Ferullo
Laurie Ferullo <laurie@uconect.net> Hi Tommy:I am the mother of a 26 weeker. She was born Oct 22, 1994 weighing 14 oz. We were in the NICU for 100 days and was St. Vincent's smallest discharge. Going home at 3lbs 11 oz. We did ok in the NICU after the first month. It was after going home...thats when reality hit home. Sidney is now 2 1/2 and has been rehospitilized at least 10 10 times. She has a feeding tube, she has had the fundoplication a year after the G-tube was placed. She wears braces on her legs, ect....We just wern't prepared. I belong to a support group at St. Vincent's Hospital in Toledo. We all have spent time in the unit for one reason or another. Every child and family is so different. No to childrens stories are the same. I happen to be working on a new project for work and learning the web sites is part of it. I unfortunately don't have an Email address but would like to talk with some one. Is this possible? My number could be obtained through St. V's hospital. Perhaps we could arrange a visit to our group or something.
Tami Zunk Hi Tommy: There hasn't been a post for over a week. Since the server has been making some changes, I though I'd test it out. If this message posts, it works!!
Clark Hi Tommy: Reading your story reminded me of our life back in October. As I looked at those early NICU shots, I wept. The three months we spent at Huntington Memorial Hospital, Pasadena, CA are still so vivid. We gave birth at 26 weeks to two babies, surviving triplets (I lost one at gestational week 12), Conan at 14 oz and William at 1#14oz. I had developed pre-eclampsia for which there is no treatment. The babies had to be delivered. We lost our sweet champion, Conan, after 5 days (the loss is still agonizing), but little Will is thriving. The first week of Will's life saw him undergo surgery for patent ductus arteriosia (PDA), develop jaundice, and require oxygen never lower than 75%. Fortunately, he had no brain bleeds, but as time passed he suffered an incarcerated hernia (which continued to pop down into his testes until he had surgery a couple of months later), a collapsed lung, the usual BPD, umbilical hernia and ROP (level 2 shunt--now completely resolved). He was on and off the ventillator several times. Eventually, he made it to the feed and grow rooms, but on the way there there was so much fear. He came home around his due date and continued on the apnea monitor for another four months. He developed pneumonia after four weeks at home and we had to go back to the hospital for a few days on the oxygen prongs, respiratory therapy and IV antibiotics, but he came through like the fighter he is. Will has a 4 yr-old brother and Dad is around sick people a lot, so we have a couple of vectors for infection. Talk about hand washing!!! I just want to add that I think this site is wonderful. I wish I'd had the ability to sit at the computer in those early days. This would have meant so much. Between deep grief and the terror of the NICU, not to mention pumping, pumping, pumping, while having to parent my other little boy who was also grieving, I scarcely knew day from night then. At his 6 month well-baby check, Will weighed 12# and was 23-1/2". He's almost 8 months now, 5 mos. adjusted, and can roll over tummy to back, sort of bat at desired objects, laugh, enjoys standing on my lap, doesn't sit very well, but can hold it for about 1-1/2 seconds. I still feel cheated out of the last 3-1/2 months of my pregnancy. The loss of Conan is indescribeable and only lately can I go a day or two without tearing up. Seeing twins is difficult, and sometimes when I look at Will my heart breaks thinking how much we lost. The fact that Will is healthy fills me with a deep, sweet gratitude, but its counterpart is an equal measure of sorrow. I'd like to hear from anyone who has lost a premie multiple. Hear how they're doing. Again, I applaud this wonderful work of art you've created. Ahh, I hear a little voice calling me. Adios, Roz
Rosalind Hayes <73444.2623@compuserve.com> Hi Tommy: I enjoyed reading your website information. My names Michelle and my sons name is Zachary. He was born at Grace Hospital on 3-4-93. Zach weighed in at 16 ounces, 9 inches long.We have had a long road of travels since then. zach was in NICU for exactly 4 months until 7-4-93. He went home on no monitors however, weighing in at 41/2 lbs. We have had a very rough 4 yrs. though. Zach has spastic quad cp, ROP,BPD, cerebellar hypoplasia, missing his cerebellum in the brain which controls mobility and balance, so in essence he has double cp, severe reflux w/ failure to thrive, 5 fundoplications in 11/2 yrs, none have worked so far, so were going to a motility specialist in Cinn OH for testing in 1 wk., Esotropia, weve had 2 eye surgery realignments, Strabismus, Dysconjugate gaze, IVH (II), recurrent otitis media and RSV, and global developmental and speech delays. But, if I never had mentioned anyone of those things, Zach looks like a normal child. He is very small for his age, now he's 4, and weighs only 25 lbs., the feeding tubes arent working. But Zach is the most amazing child Ive ever seen. He is in a wheelchair, and hes very smart, 2yrs. advanced for what he should be intellectually.Zach goes to school 5 days a wk, rides the bus every day , when hes not in the hospital, this yr has been bad!, but enjoys whatever the day provides. He has taught me so much that Im amazed at what I know now. I am a very BIG advocate for Zach and one day will teach him how to be for himself.He provides me with so much love, and has been through so many surgeries, that I could never imagine in my life going through what hes been through. I love him unconditionally. Zac is my only child for I had to have a hysterectomy a yr after I had Zach for I had severe endometriosis and it ate up my stomach so I am truly blessed by Zach. So far, hes the smallest to survive at Grace and Im very thankful for that. These children are truly an inspiration! God bless to yall and Id love to hear from you anytime.
Michelle Darling <MDarl22630@aol.com> Hi Tommy: I had to archive the messages again as this page was getting rather large! By the time I do that again, your little brother or sister should be here! Love ya, .~**~..~**~..~**~..~**~. -------> Daddy <------ *~..~**~..~**~..~**~..~*
Tommy's Daddy
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