Tag Archives: down syndrome

Daytrippers New Year Baby: Elliott Preston

Daytrippers New Year Baby - 6 Month Old Elliott Preston

Daytrippers New Year Baby – 6 Month Old Elliott Preston

Nurse and mother-of-three MELANIE PRESTON from Knoxville, Tennessee writes about life with Daytrippers New Year Baby; ELLIOTT PRESTON.  Melanie has agreed to regularly update We Are Daytrippers (THANK YOU!) to share with readers about her experience caring for a child with down syndrome.  (Don’t miss the beautiful photos of Elliott’s previous five months at the end of this post).

Melanie’s update:

“Last year this same week we found out Elliott would have an extra chromosome and while I wasn’t shocked, it certainly wasn’t what I “wanted” … fast forward to the beginning of 2015 and he is everything we wanted, needed and more!

I suppose it’s fair to say he makes us appreciate the little things in life more.  Things that I’ve never even considered with my other children … like reaching for toys, propping up on elbows and then hands, et cetera.  Sure, I remember Elliotts siblings milestones (mostly because one was super late and the other was super freakishly early); but did I celebrate them?  Not like we do (and will) with Elliott.

There is just so much work involved for something so simple like reaching his hands above his shoulder height (that was a huge one!).  Low muscle tone is also a subject of concern.  It is real and fascinating.  One of the neatest things to see is his older sister (by 17 months) is his biggest cheerleader.  She claps and jumps up and down for him – it’s adorable and I hope she remains his biggest advocate throughout his entire life.

The Preston Family

The Preston Family

Overall, Elliott is doing well developmentally for a child with down syndrome. We are working with physical therapists to help him sit and he is making huge strides.  The occupational therapist discharged him because he had met current goals and will re-evaluate when he is around 10 months.  He is about to start some puréed foods so we have an evaluation with speech therapy just so they can see how he does.  Speaking of appointments … can you say more than we can count?  Seriously!  It’s been busy in the Preston household. That’s really the only “change” to our lives in the past year and to be fair – a lot of those appointments are not only Elliott’s but his siblings as well, so it could also be very much part of having three kids?!

We have a cardiology appointment coming up in a few weeks to see how the two holes in his heart are healing so that’s our next big “thing.”  We have been so thankful this year to have had a positive experience through diagnosis, delivery, and beyond.  It’s very helpful to be surrounded by so many supportive family, friends and medical professionals but sadly I am incredibly aware that is not the norm.  Sure Elliott is different but so what!  (Aren’t we all?).   Difference is what makes us unique and he is certainly no less unique than I am!  So Happy New Year 2015 and cheers to being maybe not so different after all?”

Past articles with Melanie and Elliott:

  • Read about when Melanie found out she was having a baby with down syndrome: http://wp.me/p4FQqM-11
  • Read about when Melanie delivered Elliott herself in the car (a shock to all!): http://wp.me/p4FQqM-2v
  • Read about Elliott’s first month of life:  http://wp.me/p4FQqM-3R

We cannot get enough of these adorable pictures of Elliott’s first five months:

Elliott Preston in the NICU

Elliott Preston in the NICU



Elliott Preston - 1 Month Old

Elliott – 1 Month Old


Elliott - 2 Months Old

Elliott – 2 Months Old


Elliott - 3 Months Old

Elliott – 3 Months Old


Elliott - 4 Months Old

Elliott – 4 Months Old




Elliott - 5 Month Old

Elliott – 5 Month Old

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Our Story: Melanie and Elliott Preston

Elliott Preston at 1 month old

Elliott Preston at 1 month old

Nurse and Mom MELANIE PRESTON from Knoxville, Tennessee writes about her first month with baby ELLIOTT PRESTON.  Melanie has agreed to regularly update the We Are Daytrippers media project as Elliott was born with down syndrome.

Here is their story:

What a crazy month!  It’s hard to believe I had this baby laying on my chest nearly a month ago in my car.  Did that really happen?!  It seems like a lifetime ago already.

I remember my mom telling me when I was young that I was growing up too fast and I thought she was crazy because I was never even going to be a teenager at the rate the years seemed to slowly drag on and on.  Then I had my first child who is now a teenager himself and somehow all of a sudden my 20 year high school reunion approaches next year as well.  It’s like I blinked and all of a sudden the years passed.

Maybe my Mom was right.

Perhaps it was the ten days in the NICU which helped this month pass by so quickly … or the multiple doctors and therapy appointments we have had since being home.  I can’t even begin to count!

I won’t lie, while some people loathe the doctor I secretly love them so much.  It’s fascinating to learn about different medical diagnosis and I love medical tests and analyzing the results.   My husband on the other hand seems to be the more typical person and he finds appointments and mostly the waiting room his LEAST favorite place.  His appointment enthusiasm is not on par with my own.

Now about Elliott: What we have found from all of these constant appointments is that he is doing really well.  All of his doctors and therapists have been really impressed.  Why you may ask?  Well, let me tell you!  Yes, his tone is low, which is typical for children with Down Syndrome and it is making him the most flexible, yet wiggly baby ever.  He is able to track with his eyes on par with most 1 month old babies although getting him to open his eyes is a challenge in itself as it is rare for him to be awake.  He passed the newborn hearing test and his heart defects are so mild he won’t be seeing a lot of our fabulous cardiologist.  The pulmonary hypertension has resolved and he is off oxygen during the days now!

Hello Elliott!

Hello Elliott!

We have a follow up appointment next month and then he has to undergo a sleep study.  If he passes the study he can then be oxygen free.  Just being off of oxygen during the day is such a feeling of freedom.  Imagine being tied all day long to a very, very, very long cord:  not convenient.

As of last week, Elliott weighed in at nearly 9lbs (4.08 kilos) with his only feeding issue being a case of mild reflux.  All my kids have had reflux in  some capacity so this was not really a shock at all (it was more expected actually).  Elliott is a great baby, pretty laid back most of the time unless he is hungry and then he can get pretty vocal but otherwise he is sleeping or hanging out.  Overall it’s been a great sleep-deprived month just as I expected.

Who knows what the rest of 2014 will bring … or the next 10 years for that matter.  I’ll be sure to update We Are Daytrippers about Elliott’s progress in the next few months.   I hope as a family we can take the time to enjoy these newborn days and live in the moment because as I know all too well; one day I’m going to turn around and Elliott won’t be the baby on my chest but he will be the teenager rummaging through the kitchen cabinets eating us out of house and home.

Cheers to 1 month!  xoxo The Prestons

Stay connected with Melanie and Elliott:  @augustinmarch #amazingelliott

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The Daytrippers Team: “Press 4 to hear the message”

Brook Morrison from The Daytrippers Team describes the moment she began to understand what it might be like to have a disabled child.

Sometimes life throws you a curve ball and after two miscarriages in two years, I started to worry.  The thought of never having a child was devastating to me and I desperately began to research every possible wives tale, fertility issue and evidence-based study that might help.  Eventually I went to visit a specialist who diagnosed me with mild polycystic ovarian syndrome.  My spare time was spent researching stories and evidence meant to increase fertility; I began to drink whole milk, eat eggs, stopped drinking alcohol, restricted caffeine and followed strict guidelines.

In March 2010 a pregnancy test was positive.  Who knows if the diet changes worked but I felt differently about this pregnancy and called my Mom immediately.  She answered the phone with morning in her voice as it was early for her (we are five hours apart as she lives in Florida and I live in England) and I blurted out “hi grandma.”  For a minute I didn’t know whether the line had dropped.  Then I heard her speak through tears and she said “really?”  I never shared the news of the previous miscarriages with her before but we had a long discussion about it and I’ll never forget how special that moment was between my Mom and I.  That evening I told my other half when he got home (my Mom and I discussed video taping his reaction – I did not do that).  But his reaction?  The repeated word “wow!”

The 12 week Ultrasound scan.

The 12 week Ultrasound scan.

To say I was thrilled to be pregnant but hated how it made my body react is an understatement.  Among the usual constant nausea and exhaustion, I vomited every day on a complete whim without notice (on the Gatwick Express train, while riding a crowded bus in my scarf on the way to Luton airport, while walking to the store … the list is endless).  At week 12 of pregnancy we went for the first ultrasound scan.  The technician slathered goo on my belly and a blob appeared on the screen.  There before my eyes was a little creature like thing moving from one way to the next and back and forth.  It was absolutely incredible!  Was this really happening in my stomach?!  The Ultrasound technician started to snap a few prints for us to take home and then she stopped, focusing on the head.  Immediately, I said, “he has a very thick nuchal fold” (this is a marker for chromosome abnormalities detected by fluid retention behind the neck) and my heart completely, in one loud THUD, sank as low as it could. I remember Dad-to-be telling me not to be so negative but the technician confirmed that it was indeed very thick; she left the room, came back and gave me a 1 in 10 chance of having a child with down’s syndrome. The average risk for someone my age was 1 in 1000. We were told to see a specialist at week 14 to see if the nuchal fold had decreased in size and to make a decision about whether to have a CVS (Chorionic villus sampling – a prenatal test that detects chromosomal abnormalities in the fetus).

The decision was not easy, especially as there was a tiny risk of losing the pregnancy, but decided it would be best to have the CVS in order to prepare ourselves emotionally and mentally for the future. This was also the moment I told friends and family who were overwhelmingly understanding and supportive.  A friend of mine was getting married in Austin, Texas and I had to tell her we would not be there and why.

The staff at the London clinic were positive, the walls were bright, the office was filled with future parents or women about to undergo procedures.  I was freaked out.  We waited in a small room on our own until they called my name, scanned  my belly once again and then went into the room to have the CVS.  The doctor came in chatting a mile a minute, the nurse was smiling and I felt like it was The Twilight Zone.  The doctor kept talking to me, put a numbing agent on my stomach and said he would talk to me during the whole experience.  OOF!  The needle poked through and it felt like being punched in the stomach but it was over in a matter of seconds.

48 hours later I had not miscarried.  Hooray!  But what was most difficult?  Waiting up to 10 days for the results.  The clinic explained that the test could pick up other chromosomal abnormalities, heart defects – a myriad of complications.  So naturally I did exactly what you should not do and researched all sorts of disabilities and experiences of families with disabled children. I could not get enough.  I read heartbreaking, happy and tragic stories about families, carers, women and children; what helped them cope, what broke them down, how they processed the knowledge that their child would have a disability, etc.  Some people made the decision to terminate and others found out too late and/or continued with the pregnancy.  All of them made a life changing and sometimes agonizing decision based on what was right for their personal circumstance.  Surprisingly, reading these stories made me feel better.  There were SO many of them.  I was not alone, it was a whole new world I never knew existed.

One week after the CVS I walked into the house and was handed a mobile.  “Press 4 to hear the message” he said.   Heart pounding I took the phone.   It was a polite woman on the other line and I was so numb I did not even listen properly but asked the future father “was the test positive for DS?”


…Queue floods of tears.

Perhaps you read the story about Melanie Preston?  While waiting for the CVS results during my pregnancy she was in nursing school and she kept reassuring me that all would be fine; she thought I was having a boy because boys were more likely to have thick nuchal folds than girls.  I thought she was just trying to ease my stress.  But you know what?  Somehow she was right.  I gave birth to a boy on 10th December, 2010.   He is THE most wonderful human in the history of mankind. 🙂  And you know what else?  Melanie went on to have her own son with a thick nuchal fold.   His name is Elliott.  The beauty of it all is that; thick nuchal fold or not, any child has the ability to bring joy.   Sure, some children are born with a disability, but they are not fully defined by their disability.

Since this experience during my pregnancy, my heart swells when I see a child with down’s syndrome.  I want to go up to them and hug them.  Thick nuchal folds of the world UNITE!

Brook and her son in Portugal in 2013.

Brook and her son in Portugal in 2013.


Stay connected to Brook Morrison:  @ebrookm





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MY STORY: Sarah Stevenson and Captain Jack

7-year-old Jack Stevenson

7-year-old Jack Stevenson

CAPTAIN JACK‘s mother, SARAH STEVENSON from Bicester Oxen, England shares her story with We Are Daytrippers:

I think for any parent, making decisions for your child is always difficult and especially so if you have a child with special needs. I am Mum to Jack who is 7 years old and born with Down’s Syndrome. At our 20 week scan they told me and Jack’s Dad Mark, that’s there was a chance that our baby boy would be born with Down’s Syndrome as his neck measurement was slightly larger than average. We chatted to the specialist midwife about our options, but for us there were no options. We would have our baby regardless. No amnio and no abortions. It was a short chat with her!

Jack decided to arrive into the world slightly earlier than planned (6 weeks too early in fact!) and was almost born on our neighbours decking as I was adamant I had indigestion! First time Mum and all that. After a mad dash to the Horton Hospital, Banbury Jack shot out an hour later after the mention of forceps! After a short cuddle he was whisked off to the Special Care Baby Unit (SCBU). The consultant told us that they thought he had Down’s Syndrome. At the time we didn’t cry or get upset we just knew that we would care for and love our baby no matter what. Jack was in SCBU for 6.5 weeks which was quite hard going but he finally came home only to be admitted again after 3.5 months for open heart surgery. We didn’t care that he had Down’s Syndrome just as long as he survived the operation. Looking back now I don’t know how we coped seeing our baby connected up to all the tubes and wires on the Paediatric Intensive Care Unit but we knew he was in good hands and you just have to get on with it!

Newborn Captain Jack

Newborn Captain Jack

We had a few visits to hospital over the next few years mainly for chest infections. He vomited up to 7 times a day every day due to the build-up of mucus on his chest and faulty valves at the top of his stomach, and failed to put on weight. We used to carry a plastic ‘sick’ bowl underneath his buggy just in case! We didn’t let this stop us doing anything travelling to the Seychelles when he was 6 months old for our honeymoon as well as Lisbon, France and Cornwall! Through all of this Jack was still a contented baby taking on these challenges as they were thrown at him. At 2 years old we went on a holiday to Crete and he suddenly became a different child with regards to his health. Virtually overnight he stopped being sick and started to put on weight! He was also a floppy baby and didn’t walk unaided until he was 4 and a half years old. Mind you that didn’t stop him bombing around on his bottom and then later on with his walker. If you see him now it is difficult to believe how poorly he was early on because now he runs very fast and eats loads! He is very sociable, but very stubborn and only wants to do what he wants to do!

When Jack was 4.5 months I joined our local support group Down’s Syndrome Oxford which has been invaluable to me over the last 7 years. I took over as treasurer and have currently just handed over to another volunteer after 5 years in the role.

When Jack was ready to start school we decided to put him in to our local mainstream school in Bicester, Oxon since most of the advice we received suggested that children with Down’s syndrome benefit from being around other ‘typical’ children and could learn by copying them.

During year 1 Jack’s behaviour became worse (he had always been a thrower!) often reluctant to line up, go into class, stay on task, to do as he was told by his teacher, or sit on the carpet so we agreed for him to repeat the year. This didn’t help his behaviour and if anything the situation continued to get worse. This was a very low time for me and as every time I collected him there was negative comments and his whole education was becoming about his behaviour not what he had learnt. I didn’t know what to suggest or do. I contacted various professionals to try and get some advice but nothing really helped. The Educational Psychologist involved in school suggested he have his 1:1 sessions as normal but that he went back into reception (joined with nursery) at other times to try and build up his social interactions with the younger kids. Unfortunately this did not help and Jack would still lie on the floor, refusing to budge only wanting to have an adult’s attention. He would also behave like this at home so it just wasn’t at school. Every morning when I tried to get him to eat his breakfast or get changed or go to school he would refuse, lie on the floor and refuse to budge! I did go through a couple of very low weeks last October when I just was about to give up but then Jack comes along gives me a big smile, a huggle (a hug and a cuddle) as we call them and tells me he loves me.

The Stevensons

Smiles all around

Earlier this year when the Head teacher had said they didn’t know what to do with Jack in September I knew the problem with his behaviour wasn’t going to get better here and that this mainstream school despite the care of the staff was not right for him anymore. So when the Ed Psychologist mentioned perhaps having a look at our local special school we decided to make an appointment.

I was very upset at the time (February 2014) about Jack attending special school but was impressed by what I saw when we visited. All the questions and concerns I had were answered by the Head teacher and Mark and I both liked the idea of smaller class size and that this would probably benefit Jack. I think I was so upset about special school because I worry about what will happen to Jack when Mark and I are no longer here and who will help him. At special school the staff teach the children about being independent such as cooking, getting dressed, money etc. which are essential skills needed to look after yourself. We also sat in on a lesson in the class that Jack would be joining should we decide to send him there. There were 6 children, 1 teacher and 3 teaching assistants and I was surprised how calm and quiet the environment was. Each child could be taught at their individual level and with the specific help they needed. We decided to get Jack into the special school ASAP as I felt he was not achieving at the mainstream school. He started after Easter with a few mornings accompanied by his TA’s from the mainstream school before attending officially after May half term. He also gets transport to school provided which I wasn’t so sure about but as school has been so good at communicating with me I don’t feel I am missing out on the after school chats when I would have pick him up. He seems to enjoy travelling on the bus with some of his class mates!

The Stevensons

The Stevensons

Well what a surprise in the first full week it was like having a different child. He actually wanted to go to school! He liked his new Teacher (Mr M) and was keen to talk about his new class mates. I haven’t had the battles I was having every morning to get him to school. He is more willing to get dressed and wait outside for the bus to arrive. Obviously, we do still have the odd battle and refusals to move or do anything, but generally he seems happier. This makes home life much better. So now he has been at special school for 5 weeks and I think it was the best thing to do. His speech has improved as well as his behaviour. Whether it was that the mainstream school we chose wasn’t the right place or the fact that any mainstream school would never have been right we’ll never know and it is very early days at his new school but it seems to be going in the right direction at the moment.

Sarah watches as Jack feeds the Giraffe in 2013 at London Zoo.

Sarah watches as Jack feeds the Giraffe in 2013 at London Zoo.

We became involved with Daytrippers after we’d been to the Special Need’s Day at London Zoo. This has been our fourth year attending. Last year Jack was the Daytrippers Ambassador and was allowed to feed the giraffes. He loved it. We also attended Daytrippers 10 year Party and a music event that was held in London. We have just attended the Brighton Sealife Centre Trip which was at the weekend. Jack loved the sharks and feeding the turtles! Thank you Daytrippers.

Please feel free to contact me regarding anything I’ve talked about!



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MY STORY: Melanie Preston

Melanie and Bob Preston

Melanie and Bob Preston

Nurse and Mom MELANIE PRESTON from Knoxville, Tennessee is pregnant with her 3rd child who will be born with down syndrome in June 2014.  She has agreed to update the We Are Daytrippers blog throughout her experience leading up to the birth of her son Elliott and their experiences as a family.

Here is Melanie’s story:

Many people whom I have met or read their stories of their prenatal diagnosis of Down Syndrome remember the exact date they were delivered the news.  I can honestly say I have no idea.  Not because it was a terrible moment that I suppressed in order to forget the shock but perhaps it is because I already knew.

My husband and I met in 2010 through online dating, that’s right online – who knew it worked!  We were married in November 2011 and our first daughter arrived in January 2013.  I also have a 13 year old son from a previous relationship who is a great help and a better big brother than I could have ever imagined.

Knowing we wanted to have more children and have them close together because we are in our late 30’s was why we decided to start trying right away after the birth of our daughter.  On our second year wedding anniversary I took a pregnancy test that was immediately positive.  A range of emotions followed when I realised I would have two children 18 months apart and an active teenager!  Busy would be how our lives would be summed up for the next few years but over time it would pass and be worth it.

From the beginning of this pregnancy I felt like something was “different.”  I didn’t feel right.  Not exactly sick all the time but extreme fatigue and just something I couldn’t put my finger on.  My doctor asked that we return a week later as the heart rate was too low during the first check up.  Everything looked fine on ultrasound so we scheduled in a nuchal scan.  The test came and went with no indication on ultrasound that anything would be amiss but when the blood work came back I received a call that my risk was elevated to a 1 in 44 chance of down syndrome and I was referred to a high risk obstetrician at that point.  Several days later I went to the consult and had more blood drawn for the fetal DNA testing and we also learned we were having a BOY.  That was amazing news because my husband was beaming at the news.  The wait for the test results to come back was over a week and people kept reassuring me that it was very unlikely that the tests would show a positive for down syndrome.  In fact, according to the screening, they were correct – there was only a 2% chance.

We did a genetic test to be sure and when the counselor called to let me know our chance had increased to 99.8 % of down syndrome I wasn’t surprised or shocked and I didn’t shed a tear until I thought about having to call my husband and tell him that the son he was excited for wasn’t going to be what he had always pictured.

We chose to have an amnio several weeks later not to confirm the diagnosis but to figure out which type of down syndrome he had and it turns out it is the completely random non-disjunction type (which will not raise my odds in future pregnancies as we would like another child).

Dreams change; ours did in an instant but what I have learned is they can be replaced by a new dream.  A dream of hope and limitless potential.  We never questioned whether to continue with the pregnancy as we knew we could love him regardless of his differences.  I started researching everything I could find about down syndrome and joining various online blogs and forums to get the latest information.  Many things seem to have changed in the special needs community in recent years.  There are so many advocates for these children and resources.  The outcomes have improved and who knows where we will be in 20 more years.

We already named our son.  He will be called Elliott because I have always loved the name.  The associated medical problems that can occur and many that will remain unknown until he is born completely freak me out.  I have to be honest, I’m scared of the unknowns.  It really isn’t the extra chromosome that worries me but the underlying health issues are daunting if you actually start to look at the “what ifs.”  So for now I have stopped googling medical issues and down syndrome in the same search as it’s better for my health and blood pressure.  Currently I’m 35 weeks with an induction scheduled for 37 weeks so not too much longer until we meet Elliott and his extra chromosome.  Stay tuned in the next few weeks as I’m sure this is going to be a wild ride.  I can’t wait to introduce you to my youngest son.

Written by Melanie Preston

follow Melanie on Twitter at @augustinmarch


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