andrew

Hi. My name is Cori and my husband is Brian. Our son Andrew was born on December 29, 2004 via C-section, one week overdue. I always joke and say that if we hadn’t forced him out of there, he’d still be in my belly. I had a pretty typical pregnancy. I was nauseated in the beginning, but that got better in the 2^nd trimester. Ultrasounds were always beautiful. He was a total wiggle worm, especially my last few weeks.

We found out that Andrew had 49, XXXXY Syndrome when he was just 5 days old; thanks to his amazing pediatrician and her partners. Andrew was a very healthy child when he was born, his APGAR scores were an 8 & 9. My husband and I wonder that if it wasn’t for Andrew’s pediatrician, would we even know about his chromosome abnormality yet. Having a good, proactive pediatrician is definitely a necessity in our opinion, and we’re grateful to have found her.

The reason they ran genetic testing on Andrew was because his right foot was very flexible (it could touch his shin), he had undescended testicles (which he had surgically descended in Jan/2006 and the procedure went very well), and they thought his eyes seemed a little wide set (which is a common feature on my side of the family, so we weren’t as concerned about that). His pediatrician even said to us that she’d be shocked if the test came back saying anything other than Andrew was perfectly normal. They were just running the test to be safe. It’s a general practice for her group to run genetic testing if 3 or more “odd” features show up on any one baby, no matter how minor. Thank God they did! We were very fortunate to find out so early.

Early intervention has been key for Andrew and his development. Right away we were set up with a program through our state called First Steps. He receives PT, OT, ST, and Nutrition Counseling. He is doing amazing. He rolled at 4 ½ months, he was sitting by 6 months, crawling at 9 months, and at 12 months he’s now working on walking. He walks along our furniture like a champ! For the most part his fine motor skills have been very age appropriate as well.

Not everything has been easy street for us though. After finding out, we basically lived at St. Louis Children’s Hospital for the first 3 months of Andrew’s life. He had a full work up to insure that none of the major defects of 49, XXXXY existed. At 2 weeks of age he underwent a cardiac catheterization because they thought the heart echo had shown a heart defect. Thank God, the results were negative. When Andrew was about 3 months old he spent 4 days in the hospital for failure to thrive, and then 3 days later he went back for an additional week because he contracted rota virus from being in the hospital the first time. At that point we felt like that was how our lives were going to be from then on, so my husband and I decided that it would be in our son’s best interest for me to stay home with him.

We went through MAJOR feeding issues when he was about 2 ½ - 3 months old. He developed a milk protein allergy, which caused him to have bloody stools. He had to be taken off of breast milk ( I pumped and bottle fed), and put him on this awful formula called Alimentum. Well, Andrew decided that he’d rather starve then eat that stuff (which is the reason he was in the hospital for failure to thrive). After the blood cleared up we tried Isomil Advanced and he took to that much better. We were very blessed for that because about 1/3 of babies with a milk protein allergy will also have a soy protein allergy; Andrew does not. About a month after that mess Andrew had eye surgery to correct his drifting eyes. The surgery was a success, and at this point it doesn’t appear that he’ll need any additional surgeries. After that, things finally started to settle down for us and our little guy.

When Andrew was about 6 months old my husband and I decided to put him in a helmet to correct the flat spot on the back of his head. It reminded me of how the cartoon characters would look after someone hit them upside the head with a frying pan. He wore the helmet for 2 months, and boy did it do wonders. You can’t even tell that he had a flat spot. His head rounded out nicely.

Andrew was always a small guy in the beginning. The first 4 month of his life he was always measuring in the 5^th percentile or less. That’s when we decided to contact a nutritionist. What a difference that made!! His nutritionist had Andrew on a calorie supplement called Duo-Cal. It was basically a powder form of just fat and carbohydrates we would put into his bottles. Within a few weeks he was up in the 25^th percentile for weight. Height has never been an issue. Andrew has done a wonderful job maintaining his weight on his own. He’s a pretty good eater and is very age appropriate with his diet. He does have his good and bad eating days though, but I think that can be any child. Andrew is doing very well with his sippy cup also. Like his food, he goes through phases where he just doesn’t want it. Sometimes wonder if that’s not because of teething. He finally popped his first tooth at 10 ½ months. He’ll even hold his sippy on his own sometimes. It’s not perfect, but it’s getting there. We were also battling him not wanting to feed himself, but that’s also coming along. He’s made major progress in the past couple of weeks. He does really well with bigger objects like crackers or pretzel sticks, however, with smaller objects like puffs or cheerios, he struggles a bit. That to will come with time and practice. We also battle a little torticollis every now and then, but his PT says that will go away the stronger he gets.

As far as speech goes, Andrew says only 1 word (Mama), but knows a dozen or so more. He is very verbal and babbles a lot. His speech therapist said that usually they like for a child to have at least 3-4 words by 12 months. To be honest, I’m not that concerned at this point because I know that babies really only concentrate on one skill at a time, and Andrew’s has definitely been on being mobile.

He is so smart. I think smarter than we sometimes give him credit for. He picks up on things so quickly. He can Identify about 10 – 12 people, and knows who our pets are by name. It’s so cute, when we ask him where Noonin (our cat) or Rasta (our bird) are, he’ll look and point with his hand. He gives kisses and hugs (only when he feels like it though), he can tell you how big he is, he loves to wave Hi and Bye. He’ll shake his head NO when he’s finished or doesn’t what to do something, and he will hand us things when we ask for them. He claps and bangs toys together (which is a big deal because he didn’t do that until a week before his 1^st birthday). So we’re very thrilled with this progress.

Looking back to a year ago, we didn’t even imagine that he’d be doing as well as he is. I just remember being devastated at everything we read and were told about this syndrome, and the possible issues our son may or may not have. As you all know, it’s not an easy thing to hear, and it definitely didn’t fit the expectations of what we had for our child prior to his birth. But did Andrew prove us wrong!! He’s exceeded any and all expectations we ever had for him after he was born. I feel so blessed to have him in our lives. If God came to me and asked me if I could have it to do over would I change who Andrew is, my answer would be absolutely not!! He is the most loving, gentle, well-behaved 1 year old. We’ve been very spoiled with Andrew. He’s been sleeping through the night since he was 2 months. Both of our parents tell us that we’re going to get it with our next child. At the present, we’re doing great. Our only concern right now is his feet. They both point out a little more then they should, it’s not major, but we’re going to go see his orthopedist about it. It doesn’t seem to be holding him back though. We’re also going to go see a neurologist soon. It’s what we call a “just to be safe” appointment. Andrew has had no neurological issues yet (that we know of), but we know seizures can be common with 49,XXXXY Syndrome.

I hope Andrew can be an inspiration to future parents that have a child with 49,XXXXY Syndrome. I can honestly say that after the initial shock wore off, there were many stories on this website that I found to be inspiring. Andrew is still very young and we are more than aware of the potential hurdles ahead, but we’re very optimistic for Andrew’s future. We just keep treating him like any other child his age, tackle the issues as they arise, and hope his development will continue to progress like is has. Please feel free to contact me at any time if you have questions or just want to talk.

Andrew is almost 2 ½ years old now. He's growing up so fast and doing so well. Andrew now has a little sister named Samantha. She's 7 months old. He sure thinks she's the best. They get along so well. It's so cute to watch them together. Since I've last written, Andrew's gone through many changes. He now wears glasses and hearing aids, and does pretty well with them both. To him, they're a package deal. If one comes off the other one does too. He's so cute in his glasses; they make him look like a little man.

We're very pleased with Andrew's progress this past year. He started walking last 4 ^th of July weekend, he was 18 months. We were so excited for him; we wanted to have a party. I will say he was quite the crawler since he had been doing it for about 10 months before he started walking. I swear he could crawl faster than I could walk. Andrew's also been eating very well; it's become more consistent as he's gotten older. We no longer stress over his intake of food; however, his fluid intake does struggle at times. We just have to keep an eye on that and make sure to offer him plenty of drinks if he's not had a lot to drink that day. Andrew is a self feeder, which is nice. He does very well with a spoon and fork. We still do have to monitor his meals though, because after a while the food just becomes a toy.

His communication skills are improving every day. He has no problem getting his point across and getting what he wants. He picks up on sign language so quickly now. Usually it just takes us showing him a sign a couple of times before he's doing it. As far as speech goes, that's our biggest concern right now. He is verbal, and does say a few words well, but for the most part he'll just say a variation of the word he's asked to repeat.

We're currently in the process of trying to find a doctor to administer testosterone treatments to Andrew. Testosterone for 49'er boys at an early age has been found to help with muscle control for hypotonia as well as minimize the effects of hypogonadism. Some parents are also reporting that it has helped to increase their boy's language abilities. The hard part is finding an Endocrinologist to agree to administer the shots since it's not a common practice to give testosterone to younger children. If I have any advice to parents with younger 49'er boys, it would be to really look into getting them the testosterone treatments as soon as possible. We've also started Andrew on EFAs and are looking into equestrian therapy.

Andrew is such a blessing. Every day with him is truly a joy that words can't even begin to describe - God Bless!