Time To Update…

So, its been quite a while since we last posted.  So much has happened since we last posted.  Delainey is now 4.5 years old.  She had a fantastic summer.  She experienced swimming for the first time because her daddy bought her a pool.

 

She enjoyed going for walks and playing in the splash park.  We purchased a bike trailer this last summer and I can tell you  the giggles we heard we unreal.

 

Delainey is now quite verbal…….like she literally is never quiet! lol  She says “daddy, mommy, deja, niyah, momma, poppa, i love you, more, bye, hello, hi, all done, night night, bath, iced tea, no more, cookie, cheese…….and much more

 

Delainey has been mastering so many things we were told she would never do.  She is pulling herself to stand, like at kitchen counters, tv stands and other high places.  She has been strengthening her core muscles and is standing well against walls and with some assistance for short periods of time.  She has mastered climbing up and down our creepy old steep stairs……which is crazy and nerve wracking at the same time.

 

 

She has been working on walking with a walker she received from the Children’s rehabilitation center in Winnipeg.  We are so thankful that for now God has chosen to bless us with her and allow her to thrive and spread HOPE to other t13 families.

 

 

 

Equipment

Having a child born with special needs can be challenging and quite testing.  Not so much the child but the obstacles that come your way.  You are constantly trying to find ways to adapt every day life so that your child can get through their day a little easier.

Delainey specifically required help in many areas. She could not sit unassisted until she was roughly 18 months old. She could sit for short periods of time prior to this but only for a few seconds or with pillows holding her up.  We used breast feeding pillows to prop her up as well as a Bumbo seat before getting the floor seat made.  These worked great until she was too tall for them.

We went to Winnipeg’s Children’s Rehabilitation Center and requested a floor sit.  The floor seat provided a 90 degree angle position for sitting upright and a tray so she could play.  She hated sitting in this seat at the beginning because she had to sit so straight and it pulled on her muscles, another reason it is so important to stretch our kids out as much as possible.

Delainey also received a stander and a walker from the Children’s Rehabilitation Center.  The thing I hated about the stander and walker are that they are sooooo large and we live in a small place with not a lot of space but when your child requires equipment, you don’t have time to be picky, you just accept the help and move forward.  The stander was made so that you can recline it into a laying down position to lay the child down on and then continue to strap them in, I never use this though as she is so small we just recline the back a little bit and slide her in. There is a pummel that goes between her legs, a foam piece that sits over her knees so that they don’t buckle.  Straps for her feet as well as a chest strap to hold her up.

Here is the walker that Delainey received from RCC (Rehabilitation Center for Children). It has an adjustable chest plate, as well as adjustable trunk support and seat height.

I also raised enough money to purchase Delainey a Go-To seat and an UpSee made by Firelfy, a special needs equipment company.  The Go-To seat has been AMAZING! We can take it anywhere and it straps to almost everything. It is light weight and easily transportable.  You can get it in 3 different colors, I believe. We chose pink of course.  The Upsee is used to have Delainey stand upright and take steps with the aid of another person, in this case, mommy. This is really cool and we have to use this more often.

We received a crawler from the RCC but it wasn’t right for Dee. We hated it. (shown below) It always tipped and she is so skinny she would slid out of  it.  Delainey’s grandpa made her a crawler out of PVC piping and within a month of using it we had a full time crawler in the house.

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We also have a bath seat for Delainey but I chose not to post photos of her in it as they are obviously of her in the tub 🙂  I will post a photo of just the seat when I think of it next.

 

I hope this has inspired or helped anyone that has asked me questions regarding what kind of equipment they can request or use for their child.

Year Two

Honestly, the first year was the hardest. We had no idea what to expect. We had all the negative outcomes drilled into our brains from the medical community that it was honestly hard to enjoy.

Year 2 came around and it was like we weren’t scared anymore. We always knew she could go at anytime but we weren’t as focused on the negative anymore because she had now out lived their prognosis for her.

By now we kinda had a routine going……nothing super scheduled because anyone that knows me knows I am not one for a strict routine……my bad.  Delainey was now eating everything we ate, but we pureed everything just to make things easier for her to digest and consume.  She loved food. She loved going to for walks, she was now enrolled for the physical therapy and occupational therapy program here and although we are only granted one hour a month (I know, that’s really nothing, but that’s all that is provided here). I wish I could have got her in a lot earlier. T13 kids have very tight tendons and muscles and Delainey required a lot of stretching and massaging.

 

She is very energetic and has quite the personality too.

Delainey became a sister just before her 2nd birthday, she played strange at first and didn’t want anything to do with her baby sister but came around roughly 2 weeks after having the new baby in the home.  It could have been a more difficult trasnsition for Dee because she had been in hospital fighting an infection after getting her cleft palate repaired so on top of coming home after being away for a while and withdrawing from morphine and other meds and coming home to a screaming ball of flesh….it was a lot for her to take in. But like any normal child, she adjusted and came around.

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Delainey was very loving and funny. She was curious about this new room mate. She was always rolling to her and taking a peek. She would touch her and lay on her whenever the baby slept.  But as soon as that baby woke up, Delainey was outta there like no ones business lol.  She is so fun to watch and blossom.  I truly believe that Delainey started improving more and more every day having a sibling around to watch.  Little did we know, her sibling was going to be her biggest motivation.

 

The 1st Year

The first year was quite the ride. With little to no information and lack of education, we were going in blind on a journey we knew nothing about, and no one could help us.  Being a first time mom is scary enough, but being a first time mom to a child with unique and complex medical needs that no one seems to know anything about was unexplainably frightening.

Delainey did well at home. In fact, she thrived at home. Every doctors visit we attended left the physicians speechless, probably in the same way they left us speechless when they told us about her diagnosis.

Delainey went for her first surgery before the age of one to repair her cleft lip, then shortly after that she went for her palate repair. Both surgeries went well and she recovered in hospital quickly. Delainey started seeing a child development worker once a week for an hour and saw OT and PT one hour a month. We focused on getting her head up and neck strength as well as transferring objects from hand to the other. Its amazing all the things we take for granted on a daily basis. She has always been very responsive to all the therapy and does quite well.

Delainey adapted to all of her disabilities so very well. She started sitting unassisted around the age of one year. She would brace herself by using her hands to support herself but she did it so well.

I go back to her first year quite often to reflect back on how far she’s come and how much we have all changed so much since she has been born.  I can’t lie and say it’s been all sunshines and rainbows but I can tell you that 90% of the time was.  The bad times are so few and far between, and for that I am so very thankful for that or maybe it’s just my mindset and how I go about dealing with this all.

I know not all Trisomy 13 cases are as ‘enjoyable’ as ours has been.  I see many families endure so many hard decisions and watch their children go through unimaginable surgeries and have to make such hard decisions.  I thank God for this amazing child and for this journey.. I know regardless, Delainey’s days are numbered and she will have a shorter life expectancy than the rest of us but I cherish each and every moment.  She is such a joyful and spirited child with such an old soul.  I look forward to posting again soon, I wanted to write more, but Dee is making it known to me that it is time to get off of the computer and pay attention to her so until next time………

I am hoping to post more current material shortly, as she is approaching her 4th birthday, I just wanted to cover the beginning of our journey for those of you that are just finding us.

 

God bless.

 

The First 6 Months

As we began our journey at home, it was terrifying and exciting at the same time. No one could tell us what was to come. No one knew what was going to happen with Delainey. We were all just taking it day by day and waiting for this beautiful journey to come to an abrupt stop………..

but it didn’t.

Delainey decided to kick butt and take names right from the beginning.  She started in home physio therapy and in home occupational therapy once a month for an hour and tolerated it well. It was small things like keeping her head up off the ground, getting her to turn towards sound, getting her to grasp an object as many of our T13 babies have tightly clenched fists. I would encourage her to stand in her excersaucer and again she tolerated it that quite well. One trick I found if I wanted her to open her hands was while bathing her in the tub, I would pour water from a small cup on her fists and she would open up her fists so effortlessly. This was excellent therapy for her and it wasn’t like therapy at all for her. Her hands started opening daily to touch toys and grasp objects on her own regularly.

 

Delainey also had a child development worker come to the home once a week for an hour to play with her and show me ways to encourage her to play and excel in her daily activities.We constantly placed her on her tummy and encouraged her to play with toys or reach for items from this position every day.  She actually really enjoyed tummy time, not so much at first but she got used to it as she got stronger. We placed a pool noodle under her arms at first to elevate her a little bit, this helped her quite a bit and encouraged her to lift her head off the ground. We’ve learnt how to properly massage her legs and body as our kids have very tight tendons and if we don’t massage these muscles and get our kids to bend, these kids don’t have a good chance of crawling, sitting or even standing.  It’s so important to get our kids up. From early on, we put Dee in a jolly jumper or her saucer to have her upright and we encouraged her to stand or jump or basically just MOVE.

Delainey is a happy and bright little girl. She loves music, dancing, cartoons, bubble baths, animals, sunlight, flowers, birds, the wind (as long as it’s not too strong), water and food! This little girl can EAT!!!!

From early on we chose to blend a lot of her food as she had problems chewing and swallowing. She has an intolerance to dairy and we have found that corn triggers seizures…….we have yet to figure out why. Delainey loves sweet potatoes, chicken, strawberries, peas, chocolate, watermelon, and ice cream in VERY small doses. When summer rolls around she’s my partner in crime when it comes to downing slurpees….yummy.

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During these first 6 months, we truly didn’t know what to expect, but what fun we had raising this little peanut. It was exciting waking up every day to her little face and knowing that each day that passed by was another day she had defied all the odds against her.

The Plan

The minute we were told about Delaineys diagnosis, we knew we were going to fight for everything possible for her.

I didn’t want to accept her new diagnosis, I was in denial, and personally, I did not care what they had to say about her prognosis. She was still MY child, she was still living and breathing and she had every right any other child had when it came to being here. If God Himself, did not want her here, He wouldn’t have placed her here. I knew this meant we were in for a rough ride and to prepare for some battles but to be honest, It was so worth it.

Shortly after the news of her diagnosis, we were encouraged to put her and keep her on comfort care.  We agreed to keep her comfortable but also that if the situation arose that she required extra o2 or anything that they stepped in and helped her.

 

Delainey was loved in the NICU where she stayed for about 5 weeks before she was sent home on palliative care.  We met with the palliative care team before leaving the hospital and they put us in touch with our local palliative care team back home but at that time I kindly asked them to leave us alone and told them that I would be in touch with them when it was time. Right now our child was happy and living and there was no reason to act like she was dying. We only wanted positive energy around her. There was no talk of dying or death. It was all talk about how she was going to talk one day and walk one day and go to school one day.  We may not see every one of those things come true but that’s ok! Shes still alive 3.5 years after they told us she would pass away…….that’s more than enough of an accomplishment for me as her mom.

 

Delainey had her cleft lip repaired at 7 months old and she did really well after recovery. Her lip fixed up so nice as you can see below.

At about a year and some she had her palate repaired and this surgery was a little more invasive and so recovery time was a lot longer but again, she did a fantastic job at bouncing back.

 

 

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She never required any heart surgery.  Her heart abnormalities resolved on their own. (I believe God healed her but that’s my personal belief).

Whatever the case, we are just happy that she is doing so well and that she is still here with us. Delainey is a very bright, happy and compassionate little girl.

I am so thankful to have chosen to be on this journey with her.

 

The Beginning

 

On April 27th, 2012, our lives were changed forever. Born early at 33 weeks, our daughter Delainey was born.

She was born with a unilateral cleft lip and palate that had been undetected in ultrasounds. How you ask? Simple. She always had her hands covering her mouth. It was like she wanted to surprise us all. She was shy.

Hours after her birth she had been taken for numerous tests and many doctors came to look her over. They came back to us after about 3 weeks after her birth with a diagnosis of full/complete Trisomy 13 or Patau Syndrome. We now knew she the cleft lip and palate, her left eye was under developed, her heart had many defects, such as a large ASD and VSD and her left aorta was severely deformed and tapered off. She had large cystic kidneys and they were functioning at about 30% after birth. She also had a large bellybutton hernia and mild club foot.

It was because of all of these abnormalities that the geneticist wanted to test her for specific genetic disorders.

We were told that this happens in 1 in 10,000 live births.

That she would most likely live no longer than 3 months of age, if she even made it that long.

90% of these kids die within the first year of birth.

She would never walk, talk, sit, crawl, eat or breathe on her own. That she would cause stress and burden on our relationship and family and that she would live a very unhappy and painful life.

 

Normally we want our medical professionals to be right about everything but in our case I am so happy they were wrong. She wasn’t misdiagnosed, she is just defying the odds and proving every one that doubter her wrong. We’ve had amazing support from our community, our health professionals and our family.

If you have found our blog and are reading this, I encourage you to go to SOFT and share your story and meet other families. Its so important to educate ourselves.

You can go to SOFT here http://www.trisomy.org

You can also go to Delaineys personal day to day awareness page on facebook  www.facebook.com/DelaineyLivingWithTrisomy13

I look forward to sharing her story with all of you.