 |
More Profiles |
 |
 |
My name is Meranda Prediger and I have four children; Kaymin (age 10), Aran
(age 8), Rabeka (age 7), Mila (age 16 months). My older three are all over
average stature, but Mila is not quite so big. I didn't think I was going to
have anymore kids after my divorce, I was already a single mum to three, how
fair would it be to add another to the mix? Well, I did. Mila was born
August 6, 2006 to one very nervous mum and three very excited siblings. When I first found out I was pregnant I was given a due date of September 9, 2006, at my first ultrasound, done at 16 weeks, my due date was changed to October 7. On August 5 my water broke and, although I did not go into labour, I was admitted and prepared for delivery. I was terrified that my baby was coming early, but thought she would be ok since I was not TOO early. Another ultrasound was done that day and they gave me a new date of October 29! I was very confused as to how my date could keep changing, but was more concerned that I was about to deliver a 28-week neonate. |
| Mila was born the next day via c-section due to me developing an infection. She weighed 2 pounds 14 ounces and was 11" long. Everyone thought, based on her size, the new dates were bang on. They were all pretty surprised that Mila was born screaming her protest and was rooting. Mila was taken straight to the NICU and put on the c-pap, even though she was breathing fine on her own and did not tire. I was not allowed to nurse her as the staff told me an infant that young in unable to nurse, so Mila was tube fed. Every step of the way was a fight. Our pediatrician was an enormous help to me during this time as he advocated for my daughter and really listened to me. We had to fight for me to be able to nurse Mila, to get her out of the isolette (she was sweating all the time in that sauna), to get the nurses to do pre and post weighs during nursing so they would cut back on the tube feeds (she was vomiting every feed because it was too much volume for her after nursing), everything. |  |
 |
After exactly four weeks in the NICU Mila came home. Everyone was concerned
about her slow weight gain, only 2 to 3 grams a day in the NICU, and I had
to take Mila back to the doctor every week, sometimes more than once a week
for quite some time. Mila did not grow any faster at home and we started
exploring further. She was sent to the feeding clinic, seen by GI, had an NG
tube put back in at 8 months, and was referred to genetics. Nothing made her
grow.
We have recently gone over everything again with the pediatrician and come
to the conclusion that Mila was likely 36 to 38 weeks gestation when she was
born, a far cry from the 28 weeks they told me at birth. Mila is now 16
months old, 26" tall and weighs just barely 13 pounds. She has hardly grown
since nine months, adding only 1/4 cm to her height and nothing to her head
circumference, but has put some weight on.
|
 |
Hi Everyone, My name is Patricia (Trish) Martinez (used to be Mayhugh). My daughter's name is Stephanie Mayhugh. She is 22 1/2 years old, has a permanent tracheostomy, and has been diagnosed as having Seckel's Syndrome with a later diagnosis of Osteodysplastic Primordial Type II of Majewski. She has had Herrington Rod surgery for Scoliosis at age 9 and is now 30 inches tall and weighs approx. 27 lbs. She graduated from High School with honors in "97", even though she did use the resource program in school and had a full time health aide that attended with her. (So much for the "she will be a vegetable and will never develop", garbage that we were told at 2 weeks of age). |
Stephanie
is now attending a Jr. College here in Livermore, CA. She
is taking several resource classes and volunteering at
her chuch 2 days a week. She still has some problems with
long term memory , her voice is still hard at times to
understand due to the high pitch and the trach tube, her
spelling in simply awful, and she is waiting for hip
replacement surgery, but all in all, she is a great
person!
She has recently moved to her father's home and is not
yet on the internet, but I am curious to know if there
are any of you who have older young adults who are as
small , or nearly as small as she is. I am sure she would
love to hear from them as she has always been the oldest
of the group of kids with her diagnosis. We have been in
touch with a couple of older people, but no one with
either her exact diagnosis, or her extremely small
stature. We have attended a few of the conventions, but
there never seems to be anyone she can really relate to....Most
of the other 'Little People" tend to treat her as an
oddity since she is so much smaller than most of them and
she has never quite felt like she really "fit in",
though she does enjoy a good party! LOL
| I know I have had
mail from a few of you in the past and I am sorry
if I never answered your mail. We have gone
through about 10 years of turmoil here and
finally seem to be settling down to more normal
lives. I also have a 17 year old average size son named Jared. It's nice to know that there are others out there and I am really glad that most of you have found each other when your kids are really young! Wish there had been more of a support system when Steph was growing up! Nice to be in touch! Take Care! |
 |
Trish
Martinez
 |
This is the story of my son Nicholas. We live in a small town outside of Atlanta Georgia. Nick has 2 brothers that are above average in their height. His oldest brother Travis is 16 years old and is 6 ft 4 in. His younger brother Levi is 12 years old and is 5 feet 2 in. Nicholas is now 14 years old and is 34 inches. 22 1bs and wears size 2T-3T clothes. During my pregnancy with Nicholas I suspected something was wrong. I had problems early during my pregnancy and had a sonogram at 6 weeks and was given an April 1992 due date. Everything looked fine at that time and I was monitored like a normal pregnancy until later in my pregnancy a sonogram showed my due date to be a few weeks later then the original due date. I felt his kicks very low and my size of my stomach was measuring small. I was referred to a specialist and in December 1991 a sonograms confirmed He was growing at a very slow rate. At this time they new something was wrong and gave the diagnosis of IUGR. I was put on bed rest and given a high calorie diet to see if this would increase his size. I had an amniocentesis done to help provide us with any genetic answer. None were given other than his chromosomes were fine. We were given a difficult prognosis of that he would be severely disabled, mental retardation and if I choose to terminate my pregnancy at 28 weeks there would be medical cause. To me that was not an option. He was our child and we were heart broken with this news and just wanted any answers. |
A few days later my water broke. I was admitted to the hospital for 5 long weeks leaving my spouse and 2 Year old at home. I kept a journal of my daily feelings, prayed a lot and had a wonderful nurse (Rita and friends that offered their support. I was given shots of steroid each week to help develop his lungs for delivery. Each week another amniocentesis was done to determine if his lungs were developed enough for delivery. February 5th 1992 he was delivered by C-section, mainly because he was breech. He weighted 2 pounds 4 ounces. He was 12 inches long. His head was 9 centimeters about the size of a small orange. He appeared healthy with lots of hair and I was shown him
for a brief moment and then off he went to the ICU unit. He was breathing on his own and he stayed in the neonatal unit for several months. I was not able to hold him for at least a month and the first time I got to hold him was only for 5 minutes. He never did great sucking on a bottle but in April he was discharged to the children’s hospital across the street where they did surgery for a hernia. A few days later we were finally able to take him home. All 4 1bs of him. We had him home for 2 weeks when he developed pneumonia. Back to the Children’s hospital we went. This was a different children’s hospital. Once he was healthier they determined he had reflex and due to his poor sucking abilities the doctors decided to operate to tighten his esophagus muscle and add a feeding tube into his belly .The doctors were amazed with his size and continued to research the cause. The Genetics at that time felt Seckel Syndrome fit his diagnosis.
The total stay this time was about a month and a half. We were sent home with a feeding pump to hook him up at night to help with his calories intake. We were told he should be able to tolerate 60cc of formula with each feeding. He continued to spit up and the doctors felt the muscle they tightened must have come undone. Another surgery was repeated a few months later. During the recovery of the 2nd surgery a feeding of 60 cc were given and instantly he began the spitting up episodes. It was only then it clicked that the amounts of the feedings were too much for his small stomach. The pain that we felt for putting him through this again was difficult. Once we decreased the amount of each feeding to be 15cc the problem stopped. We had him in speech therapies but if his lips were touched he would gag. I guess we just thought his tube would be a permanent device and didn’t push the issue as much as we should have.
Nicholas was slow to walk. When he was 1 ½ he began a one legged scoot instead of a crawl. Then around 2 years old he started walking, running and climbing. I wonder if he was trying to keep up with his then 9 month old brother that had already been crawling and had just started walking. His shoe size was a zero and that was a challenge to find his first pair of hard soled shoes. Luckily Kedds shoes had a couple of options.
| When he was 4 ½ years old it was determined he was farsighted and need glasses. This became his favorite thing to break or throw when he was frustrated or had his tantrums. We also started trying to introduce food which was very difficult depending on who was trying to feed him. With mom it was a lot of tears. With other people like, caregivers it usually was easier because then it was a game for him. One day in his speech therapy I told her, Nick won’t eat chips, cookies or whatever items we struggled with. Then I sat behind a one way mirror and watched him eat all the things I just told her he wouldn’t. She said to me. It’s behavioral. However, It didn’t make me feel much better. The struggle for me was still there.
Once he found eggs and milk that’s all he wanted. We slowly were able to add in a few other items to his diet like pasta. By the age of 6 years old we were able to remove his G-tube. Well his youngest brother helped with that one day when wrestling. Then we as a family decided it was time to keep it out and proceed with oral feeding. Thanks to Sponge Bob Square pants, he now will eat Krabby Patties (hamburger plain with no bun). |
 |
In 2000 I received an email from another mother and her child’s description fit Nick’s. She asked if I could meet her in Wisconsin in October. I was ecstatic. When we arrived not only did I meet her and her daughter but several other families as well. I can’t begin to explain what it’s like to finally find another child like yours. The features were almost like they could all be siblings and in most cases the stories were so similar I got chills. We since then have found out that the syndrome he has is Majewski Oysteodysplactic Primordial Dwarfism type II now know as MOPD II.
In 2002 Nicholas’s Dr. appointment showed up another surprise. He had a hip problem known as Coxa Vera. He was going to have to have surgery to fix it. He had surgery in January 2003. He was in a body cast for 6 weeks. Once out of the cast he had to learn to walk with a walker and eventually was able to walk independently.
Then in October 2005 another visit to the Doctor determined his pitch in his back was now at 66 degrees and he would now have to have another surgery. In January 2006. Dr. Timothy Oswald did his surgery. The recovery was difficult with the amount of pain and Nick waking up and realizing he couldn’t move. Each day we had to work on movement. Sitting up and then sitting up and taking steps. Then after 6 days in the hospital we were able to go home. He recovered at home for 6 weeks. He for the first time in a long time, walked straight and looks wonderful. We had to limit his activities for 6 months but he tells you now, he is fine.
His temper and verbal skills have started to improve but we still struggled with positive ways to release his anger. He attends a regular school and had gone all the way up to a 3rd grade class when he got frustrated and just would put his pencil down and give up. Our best fit was to put him back to a kindergarten classroom where the work was repetitive and the hopes he will one day learn the basics. He knows colors, shapes and recognizes some letters. He enjoys taking a pad of paper and pen and doodling for hours. He can write a few letters but it’s difficult for him to tell what he wrote.
Each day with him is a blessing. Some things become so natural for us and Nick really makes me slow down and appreciate the little things we can take for granted. I am thanked for this wonderful blessing I have been given.
Shelly