Our Favorite Learning Toys

In our house, toys are usually only purchased for special occasions such as birthdays or Christmas, unfortunately for Joshua, his birthday and Christmas are only 2 days apart, so we have learned to be very strategic in what toys we purchase for him. Usually, some of our family will call and ask us to research what we feel he needs.Then, we either order it for them, or tell them the toys that we think will encourage a continuous, yet fun, state of learning for the next year.

Can I just tell you, this process of picking out toys that are both educational and fun is no simple task. (Not to mention, they must be extremely durable because he is very rough on toys!) This venture usually ends up with Daniel and I both watching YouTube videos of all the products before we decide which ones we think will work best for him. I’d honestly say that around Christmas time, we spent hours researching all of our options. It may seem like overkill to many, but Joshua has such different needs that we had to make sure the toys fit the bill on many different levels before it made the list.

Here are a few of our favorite picks:

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Our first pick is the VTech Write and Learn Creative Center. It has so many different option such as writing upper case letters, lower case letters, pictures that coincide with the letter sounds, etc. It even teaches kids the proper way to form the letters. Joshua can easily sit for 15 minutes, at a time, playing with this toy and he uses it often.

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Our next pick is also from Vtech. It’s the VTech Lil’ Speller Phonics Station. We used to have something similar that was a magnet that went on the fridge, but we were always losing the letters. This toy comes with a nice carrying case so you can take it wherever you go. Even if your child can’t spell words yet, it will sound out the letters when they go into the slots and has multiple categories so this toy can grow with your child.

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This next toy was something I just found on Amazon while looking for a product that will encourage Joshua to practice what he is learning in school. It’s such a neat product that has so many additional books that you can purchase. We found them all the way up to 3rd grade math and reading. They have options for numbers, colors, shapes, vocabulary, etc. The learning ability of this toy is endless and my kids all loved to use it.

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EDUCATIONAL INSIGHTS HOT DOTS JR. LET’S MASTER PRE-K READING SET WITH ACE PEN

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In this set, they work on matching letters, letters with pictures, colors, sequencing, etc. It includes 2 books and the special dog pen that lets them know if they chose the correct answer. It’s super cute and the kids love it when they make the right choice.

Our next favorite, is not only educational, but a great “busy” activity if you need your child to sit still for long periods of time. This is the Melissa & Doug Alphabet Splash Cards. (They sell a bunch of different sets as well as books, we have quite a few and love them all!)

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It uses a small paint pen filled with water to “color” the picture. Once it dries, the picture goes back to it’s original state and is ready to be used again. When Joshua first got these, he literally used them for 5 hours straight! I actually had to put them in front of a fan to dry them quicker so they would be ready when he finished a different set. We use these when we go to church to give him a “busy” activity to do so he stays out of trouble.

Let me know if you end up trying any of these toys for your kids!

 

Horse Therapy

Horse therapy….sounds kind of strange. I must admit, I had a lot of doubts about what a horse could do for my son but “desperate times call for desperate measures”. When we first heard about the benefits of horse therapy for kids with special needs, Joshua was 4 and still not talking. We were told that a lot of children who struggled with Apraxia and other speech delays were known to make huge improvements with this form of therapy, so we figured that it couldn’t hurt to give it a try. Unfortunately, horse therapy is a hot commodity and there was a long waiting list to get in….so we signed up and waited…and waited…and waited. Months went by and then we finally got the call that Joshua could go for a summer session because a regular rider had decided not to ride for that session. We jumped on the opportunity and thus began a wonderful friendship between a boy and a horse. (Since then, a regular rider gave up their spot, so Joshua now has a year round spot, for which we are so thankful!)

I was so surprised when we went for Joshua’s first therapy session and he left me willingly to go climb on this giant animal that he had never seen so closely before. I had anticipated a screaming child who was afraid, but it was an instant bond and he absolutely LOVED it!

When we left that day, I remember buckling Joshua in his car seat and he looked at me and clearly said, “mama”. I think my jaw dropped and I just stared at him in amazement. It happened just that one time, but since then his babbling and attempts of more sounds has increased immensely. Some may say it was a coincidence, but I’m hopeful that this form of therapy will continue to expand his ability to talk and strengthen his low muscle tone among many other things.

How it works

While he rides, the instructor has the riders do various activities on the horse. One of Joshua’s favorite things is a wall with a board that has shapes cut out of it and he has to throw a bean bag through different openings. He’s actually a great shot! They do other exercises as well that encourage core building, as this is an area that many special needs kids struggle with.

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Horse therapy also increases sensory input, helps with body rhythm and awareness, as well as works on posture. Children are encouraged to use verbal cues to make the horse stop and go. Joshua does hand gestures to tell the horse to “walk on” and “stop”. Educational needs are also incorporated into lessons, all while the children are riding.

High Hopes, where Joshua rides, is largely made up of volunteers. They do anything from helping with horses, cleaning stalls, and being a side walker to make sure a child stays on their horse. Joshua has been blessed to have a wonderful volunteer who signs up each session (anywhere from 6-12 weeks) to walk next to him and keep him safe.  She gives up her time each and every Tuesday just to spend time with Joshua. We are so thankful for amazing people who want to invest in our son’s life. Without people like Ms. Barbara, High Hopes wouldn’t be able to allow as many children this wonderful opportunity.

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The Cost

Horse therapy is not without a price. We went into our first session not knowing what the cost would be and then halfway through the 6 week course, we received the bill and were told that they had used up almost all of their scholarship money already, so they couldn’t help us very much for that session. We really wanted him to continue riding and give this therapy a chance to work, but definately would not be able to cover the hundreds of dollars it was going to cost each session. We prayed about what to do and then got a letter in the mail telling us that an anonymous donor had paid for Joshua’s tuition. I cried. It was such an amazing gift and confirmation that Joshua was supposed to be in the program as well as a reminder that God always provides. Since then, we have been able to get scholarships that cover a large portion of the cost and allows Joshua to continue to participate without us going into debt.

If you have a child with any kind of special need, delay, need for PT, speech, or OT…I highly recommend giving horse therapy a try. The success stories are amazing. Joshua loves it and often signs “horse” to ask if it’s the day to go. He gets so excited when he wakes up on Tuesdays and I tell him it is the day he gets to see his “horsey”. His smile and obvious love for it, makes it worth the time and energy it takes to get him there every week.

5 Things I’ve Learned About Kids with Special Needs

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Whether you have a child, or work closely with a child, that has Down Syndrome, Autism, Aspergers, or any other type of disability, you know that your child has amazing potential. We have had the privilege of being able to raise one of these special little guys and have learned so much along the way. Here is just a small list of the things we have learned about kids with special needs:

Kids with special needs just want to feel loved and accepted.

Sometimes we forget that they actually have feelings and want to have friends too. They get sad when they are left out and want to feel that they are accepted for who they are. We have always shown Joshua more love than he could ever need and in return, he is one of the most lovable kids we have. He always wants to hug whoever he is with and loves knowing he has made us happy. We want him to always know that we love him for who he is and we don’t wish him to be someone he isn’t. Some kids are not very affectionate, but that doesn’t mean that they don’t need love. Shower them with as much love as they can take anyway and fill up their little love tanks. They need it.

Kids with special needs can teach us more than we can teach them.

I am not saying that you don’t need to send kids to school so they can learn. School has been amazing for him! But, In our experience with Joshua, we have learned more about life than we would have ever known if he was a typical child. We have learned that there are so many amazing, giving, and caring people that have journeyed this road before us and really want to help those who are just starting to try to figure it out. We have gained a new appreciation for how awesome people with special needs really are. I used to see them in the grocery store and would smile as I walked past and think how hard their life must be and completely miss how rewarding their lives really are. Some lessons are harder than others, like patience and perseverance, but when they finally grasp a concept or master a new skill, it makes us want to throw a party to celebrate their success. These kids have a better work ethic than most of us and don’t give up easily when they can’t figure something out.

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Kids with special needs are smart.

Most people assume that special needs kids aren’t able to learn what typical kids can, but I have learned that is so wrong. All kids learn at different speeds, so don’t underestimate their ability or put restraints on what you think they are capable of learning…they may surprise you. My family was friends with Dick and Rick Hoyt. Rick has CP, is confined to a wheelchair and can’t speak. He and his dad were famous for running marathons and tri-athalons together…(If you want a tear jerker, Watch this video) When Rick was born, his parents were told to put him in an institution because he wouldn’t amount to much but his parents knew that he was worth the hard work. He eventually received a communication board that could speak for him after he spelled out the words. He was able to converse by spelling everything he needed. He graduated from high school and college! Inside, Rick was very smart, just stuck in a body that wouldn’t allow him to move very much or talk.

Kids with special needs, want you to learn how to communicate with them.

I’m not saying you have to learn a new language, although in our case, we did learn sign language. When many kids with special needs try to communicate they aren’t always able to convey exactly what they mean even if they do speak. This is where patience and a little effort to understand how the child learns and express their needs comes into play. Some children can get “set off” by certain things or sounds and knowing how to prepare for and handle those situations can make life so much easier. I’m not saying you can prevent every issue but taking time to figure out what makes each kid “tick” can be extremely beneficial.

Kids with special needs are worth it!

Having a child with any kind of special need or delay you know that sometimes life is down-right exhausting. (If you missed it check out Saving Houdini) There are so many appointments, specialists, therapies, meetings for school, etc, but all of that hard work and time spent is rewarded when we see our kids accomplish the things we have worked so hard to help them achieve. People with disabilities can lead very productive lives. Many go on to college and even get married. It’s amazing what a little time and love poured into a person can do. Many parents would even tell you that, if they had the choice, they wouldn’t want to change their child.

(Obviously, I am not an expert in the field, nor do I know what every special need kids’ ability is, I’m just speaking from our daily experience with a child with Down Syndrome.)

Saving Houdini

Our son, Joshua, just celebrated his 5th birthday in December….honestly, we were surprised he got this far. This boy has a knack for finding danger and mischief, no matter where he is. We lovingly refer to our home as Fort Knox and when friends come over they have to ask what alarms are still activated for fear of being given a heart attack while opening our refrigerator to get a drink.

This child can also literally disappear in a split second, no lie! I will be watching him like a hawk, look away for a split second and the kid is gone. And he’s smart. He will be watching you and the minute your eyes leave him, he bolts….right for the nearest exit. People probably think we are crazy as we race after him and scoop him up before he runs out the nearest door.

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(This was the day Joshua learned to drag a bench from the table to undo the chain lock)

Back to Fort Knox….our house has obnoxious alarms on every exit, as well as the refrigerator and stove. All bathroom doors, the pantry, the door to the boiler and the closet we store decorations in, all have hotel style chain link locks. For those of us who are tall enough, we can reach our hand around the door and either lock or unlock them. Even with the best security, Joshua will be watching and when of those doors should be left unlocked, he makes his move. Just this past week, his brother grabbed the stool from the bathroom to reach something in the kitchen and left it unlocked…a split second later I heard the toilet flush and raced in to see my phone making it’s way down the hole.

For a while we tried velcro to keep him from being able to get in the fridge but John had a hard time getting what he wanted because he couldn’t reach the velcro to undo it. Then we tried to tie something around the handles and that was more of a no-win situation as well since no one could ever get the knots undone. Now we have the alarm, but when that doesn’t get turned back on, we find Joshua grabbing the milk and pouring it all over the floor. He merely climbs up all the shelves in the fridge to reach what he wants and throws it out so he can retrieve it when he climbs down.

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The stove has the same problem. We even took the oven door handle off so he couldn’t open the door. It makes trying to open the door with a casserole in your hand rather challenging but somehow the kid can still easily open it. One day, I had just put dinner in the oven and ran to help another child put shoes on (literally gone less than a minute) and I found Joshua standing on the open oven door climbing onto the stove top. He never wears shoes in the house, but thankfully that day he had shoes on. The oven was at 375 and the kid didn’t seem fazed!

I honestly always feel anxious when we have to take him out in public because I cannot control the situation. When we go anywhere I always survey the exits and areas where he could disappear for the chance that he might get out of my sight and I have to pick a place to look first. My husband has told me many stories of me, talking in my sleep and hitting him while yelling, “where is Joshua?!”

I honestly always thought that people with Down Syndrome were very calm and went where they were told (I’ve seen them in the grocery store and they always stay with the person they are with….I’ve never seen one running away down an aisle while laughing and yelling)….boy did I have that stereotype all wrong! This child has not stopped moving since he started walking at 22 months. When people ask how I stay so thin…my response is always, “Joshua!”.

So, I have yet to find a way to keep Houdini completely safe, other than follow him around all day (which I pretty much already do), but then again, it would be impossible to keep any kid out of harms way all the time. We are hopeful that, one day, he will slow down and allow us to actually sit down for a few minutes. Until then, we tell him that he’s lucky he’s so cute….

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The Comparison Trap

The Comparison trap, it’s real folks….you all probably battle with this in some form everyday, as do I. It’s an inward struggle that drives us to sometimes extreme measures to become what we think we need to be based on what other people are or have. From comparing our houses, our cars, homemaking skills, and behavior of our kids, to those of our friends; the struggle seems endless. You may go visit a friend and take a look around her house and wish you had as much space or had half the decorating talent she does. Or wish you had your life organized and pulled together like other friends appear. Sub-consciously, this can drive us to envy, then possibly bitterness and can cause strain within a family because of all the pressure we put on ourselves and our loved ones to change into something we are not. It can be a downward spiral that does nothing but cause emotional pain and depression.
Those of us with kids may feel this even more. The minute your baby is born, there is a “chart” of milestones they should accomplish. Can they hold their head up? Are they able to roll over by 6 months? Are they babbling? Did they walk “on time”?
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Firstborn children are the worst…we all have such high expectations and work so hard to make sure our kids meet those goals. Should they start nearing the date they should have mastered the skill and are still not getting it, we take them to therapy because we don’t want them to fall behind (nothing against therapy…all of my kids have gone!)

 

You may go to visit a friend so your kids can play and you hear and see all the things their child can do that yours is not quite doing yet and the thought comes to your mind, “what is wrong with my kid?” Then your kids get older and you hear what a great athlete their kid is, how awesome their grades are, that they learned to ride a bike at 4 years old (while your 8 year old still is too afraid), or awards they earned and you again think, “what is WRONG with my kid!” Then we go home and put undo stress on our kids to be something they are not. Nothing crushes a child spirit more than feeling like they aren’t good enough, especially in their parents eyes.

 

(There is nothing wrong with sharing great news about our kids, kids love to hear that you are proud of their accomplishments, please don’t think you shouldn’t share the great things your kids have done with others. I am just asking that you try to be sensitive if someone’s child isn’t achieving the same things as yours whether they are typical or developmentally delayed)
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I will honestly admit my biggest comparison trap involves my kid’s milestones. John needed speech at 3 because no one could understand him and even Abigail needed physical therapy to learn to roll over cause she was way past due for that milestone (by time she came around I didn’t have time to look at the chart and only knew she needed therapy when the pediatrician mentioned it), but neither of those bothered me as much as Joshua. When Joshua was born I was so adamant that we were going to keep up with the “Jones’ kids”. I worked so hard with him, I feel like I did brief physical therapy sessions all day in order to help him keep up. Every time he had therapy, I would question them in regards to where he was at developmentally in comparison to the typical child. Eventually, there were areas he started to not be able to keep up in and I would work even harder with him. Poor kid probably thought he was in boot camp! Sadly, this was my way of making my son be something he wasn’t ready for but my pride wanted him to look like everyone else.

 

The other part of this was taking Joshua out in public. I knew that people were going to look at us differently. I would dress him really nice so he didn’t fit the stereotypes and hope people wouldn’t notice a difference.  It also didn’t help when people would ask if he was actually mine and when I would claim him, they would say how I looked too young to have a child with Down Syndrome. I was very self conscious for a long time. I hated the stares. (Now we get even more stares cause he likes to yell and hear his voice in the store…at this point I can almost tune it out so it doesn’t bother me anymore)
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When Joshua was about 3, I went through a check out line at a local store. The cashier was friendly and handed Joshua a sticker. I told him to say thank you, and since he didn’t talk, he signed” thank you” to her. I interpreted his sign and she gave me a lecture that he should learn to use his words and it was rude that he did not verbalize it since he was old enough to talk. I thought it was pretty obvious that Joshua had Down Syndrome, but I didn’t feel like I needed to explain myself and my son’s condition to her so I let it go and left. Times like those, made me ever so aware that Joshua was different and would make me start comparing him to other kids and start feeling a little bitterness towards him and his disability because we weren’t a “normal” family….
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When Joshua was in preschool I found myself fighting the comparison trap again. Now we were surrounded by kids his age and I was getting a glimpse of what I thought he “should have” been like. These kids were talking, jumping, playing with friends, coloring and writing. Joshua couldn’t jump, talk, or hold a pencil correctly. When other kids were having play dates, we were going to therapy. We skipped every birthday party he was invited too because he’s a danger to people’s property and I didn’t want to have to buy new decorations for everyone’s houses.

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Now Joshua is in kindergarten, and his 2 year old sister is starting to be able to do some things that he can’t. I love that she helps him and often she will tell me what Joshua needs as if they have an unspoken language. I’m trying to not compare my own kids and allow this to sadden me, but to simply enjoy the fact that, at this moment in time, they love to play together and act more like twins than regular siblings.
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At 5, Joshua still isn’t potty trained although we’ve been working on it for a year (I will honestly throw a party when he has finally used his last diaper), doesn’t talk, gives no heed whatsoever to safety, still doesn’t sleep through the night and is a complete handful. But inside that little 5 year old is a super smart little boy. He can sign anything he wants/needs, navigates an IPAD like it’s no ones business, can sign the whole alphabet, knows his colors and shapes, and has an incredibly memory among so many other things. He loves Curious George and I love how he giggles when George does something funny. He knows when his siblings get things he doesn’t, insists he should get the same thing and gets frustrated when he can’t communicate his feelings.
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I’ve learned to accept Joshua for the little boy he is and know that he will eventually hit his milestones, just in his own time. It doesn’t mean that I don’t have moments where his disability hits me suddenly and I have to have a good cry, but then I put on my big girl pants and do my best to help him reach his goals.
As parents we want what’s best for our kids. Society has a set of guidelines to follow and although these are a great tool, we have to remember that no child is alike and they will learn things in their own time. We need to give our kids the space and time to develop on their own. Adding extra pressure and stress to their lives and making them feel like they aren’t good enough, isn’t going to help. Your child wants to know you are so proud of them, even though they may not be as talented as the kid next door.
Every milestone Joshua hits is so special to us. We all cheer for him and praise his accomplishment, and he gets so proud and happy knowing we have seen what he is able to do. Seeing him happy to accomplish something means more to me than making him frustrated by trying to do something he isn’t developmentally ready to do.
Hopefully this year I will be successful in not caring what people think and just enjoy the everyday moments and let my kids know that I’m proud of them regardless of where they fall on the charts.

 

AV Canal Defect & Chylothorax

If you haven’t read the first part of our journey with Down Syndrome, you can find it here: Part 1: Two Words…
At this point of our story, Joshua is just about 3 months old and suffering the effects of congestive heart failure due to his AV Canal Defect. They scheduled Joshua to have surgery on March 26, 2011. We knew that he would have to stay at Yale for about a week after his surgery, so we spent the week before his surgery, busily trying to get everything at home organized and get the lists made for the family members who were watching our 3 year old while one or both of us were absent.
The night before surgery, we stayed at a hotel about 10 minutes from the hospital. We  decided to stay local because we had to be there at 7 am and Joshua was not allowed to eat or drink after midnight the night before and neither of us felt like driving for an hour with a hungry baby in the backseat. I remember that night clearly. I was laying next to him in bed and just watching him sleep. I barely slept that night. I knew God was going to take care of him but I wanted to cherish every moment I could should something happen to him during the surgery.

 

We made it to the hospital by 7am,  got Joshua all registered and in his gown for surgery. I couldn’t bare to be the one to watch him go to sleep so I had my husband carry him to the OR and hold him while he drifted off. And then we waited. All of our families came to sit with us for those 8 hours and we anxiously looked forward to any word from the OR. Finally the doctor came out and told us that the surgery went successfully and we would be able to see him in a little while.
Even though I had spent hours researching this surgery and the procedures they would use to repair his heart; I don’t know if I was completely prepared for what I saw when we were finally able to see him. It was so heart breaking to see him connected to all those tubes and wires.
That night was the longest night of our lives….they say the first night is the worst and if anything is going to go wrong, it usually happens then. There was a nurse or two in with us all night, constantly checking and changing his lines, flushing his IV’s with saline and administering pain meds. Sleep was not really an option with all the people and beeping machines. At one point, we were talking to the nurse and we could see Joshua (who was still sedated) trying to move around and they had to ask us to whisper because they said he could hear our voices and was getting agitated in his sedated condition because he wanted us.
The next day they finally took out the breathing tube and allowed him to completely wake up. It was so exciting to see his eyes open and him smile at us. Honestly, I had read too much about all the bad things that could happen during this surgery and worried he would wake up and not know who we were. (Google can be my worst enemy sometimes!)
(One of my favorite pictures, is this one, of my father in law visiting Joshua. I just love the way Joshua looks at him. It captured such a sweet moment.)
We still weren’t able to hold Joshua until they took out the chest tubes and when the anticipated day came, the doctor noticed a milky substance leaking into the tubes. This led to the diagnosis that Joshua had chylothorax. Apparently, the surgeon had accidentally cut some of Joshua’s lymph nodes around his heart. Now the chest tubes would have to stay in a little longer and he was going to be unable to consume any fats for 6 weeks until the lymph nodes healed and were able to handle the fat again.
At this point I was still breastfeeding and was told I was going to have to either stop breastfeeding or pump it and save it for the next 6 weeks. Then a doctor mentioned that this had happened a while back to another child whose father was a chemist and he had figured out a way to use a centrifuge to separate the fat from the skim. The process was basically to take the pumped breast milk, put it in test tubes, spin it for a certain period of time at a certain speed and then skim the fat off the top and feed the skim milk to the baby.  That family had donated their centrifuge to Yale in case this random occurrence happened to another child whose family really wanted to continue breast feeding. The hospital offered to let us try it if we wanted to go that route, and we could see if Joshua responded well to the skim milk or else we would have to switch to formula . So, for the rest of the week in the hospital, I would pump and then Daniel and I would put it in test tubes, spin it then feed it to Joshua. It took multiple batches to produce enough for a single feeding and we became quite the tag team. Anyone walking by our room probably wondered what in the world these two mad scientist were doing! Thankfully, it worked and Joshua stopped having as much white discharge coming from his chest tubes and we were given the ok to continue this method when we went home.
Final the day came for the chest tubes to come out and I was finally able to hold my baby boy. It was such a long anticipated moment. I held him for what seemed like hours but I was trying to make up for lost time and hoped he wasn’t upset that I had not picked him up all those times he had cried for me. After a few more days, we were finally discharged with clear instructions that, for the next six weeks, we needed to pick him up using the scoop method and not pick him up under his armpits as this could separate his sternum. There was also the general wound care instructions and germ prevention suggestions. A visiting nurse was also sent out every few days, in the beginning, to check on his incision and make sure he wasn’t getting an infection.
 It was so nice to finally be able to bring Joshua to church to meet all of our friends and the people who had been praying for him. It worked out that the first Sunday after his discharge was Easter Sunday. It was a great day of celebrating both the Lord’s Resurrection and our healthy little boy.
Easter 2011
The next six weeks were very long. Mainly because I would have to pump multiple times a day and store my milk in the fridge, then when Daniel got home from work we would spend over an hour spinning countless cycles of milk in the centrifuge, scooping off the fat and saving the skim. Then we would have to sterilize the tubes for the next day. Meanwhile, I would also have to bottle feed Joshua. So, I feel like all I did for six weeks was feed Joshua, but to me, it was worth it if he was getting the essential vitamins and nutrients in my breastmilk.
 All those long days and sleepless nights trying to keep him comfortable were worth it. When it got hard and I was discouraged and exhausted, I would just look at his smiling face and be encouraged that I could make it through another day. My favorite verse that helped carry me through the tough times, was Jeremiah 29:11 that says, “For I know the plans I have for you, saith the Lord, plans to prosper you and not harm you, plans to give you a hope and a future”. We ended up using that as Joshua’s dedication verse at church, as well.
  We would have never chosen to have a child with Down Syndrome and when we found out his diagnoses we honestly felt like our life was over. But now, looking back, it’s not even close to as scary as they told us it would be. I’m not saying every day is easy, it’s honestly exhausting and down right hard, but he is so worth it. He has taught us so much about life, empathy for others, and strength. This kid is a fighter and he is determined to do everything everyone else does. We have learned to not limit him, he is far smarter than I ever anticipated. He surprises us every day and we are so blessed to have him as our son.

 

 

The two words that changed our lives forever – Down Syndrome

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I can remember the day like it was yesterday…I had taken my mom, mother-in-law and 2 year old son to a 26 week ultrasound at Yale. This ultrasound was to rule out any heart abnormality, since my older son had a heart defect that had to be surgically repaired, and I also have a hole in my heart. I was so confident that this would be a breeze, (our cardiologist had said we could have 19 more kids and the chance of having another one with a heart condition would be unheard of) that I invited them all  along to see the baby.

 

 I remember the tech being pretty quiet as she did the ultrasound and then she said, “I see something wrong and need to get the doctor. My heart pretty much stopped, and although I had no clue what she saw, I couldn’t help but start crying. What seemed like an eternity later, the tech and the doctor emerged again; he looked over the ultrasound and said he saw a large hole in the baby’s heart, and that the baby had sandal toe. He said that his guess would be that our son would be born with Down Syndrome and AV Canal defect. The only way to know for sure would be with an amniocenteses, but that came with risks.
I was practically sobbing at this point. They brought us into an office with a genetic counselor and she gave us so much information about the future, but it’s all a blur. I don’t remember too many details of the rest of the visit or the drive home, other than being told I still had a few weeks to abort the baby and that he would need major surgery and a lot of help if I chose to keep it. In my head, all I could think was, “this is not what we had planned,” “why us,” and “what will people think?” I don’t want a kid with Down Syndrome!”
Joshua Yale
That day, I realized why so many babies with Down Syndrome get aborted every year; the way I was delivered the facts made life seem like it was going to be down-right miserable, and the option of an easy life sure sounded good. This was not the life I had wanted and I had the opportunity to basically change my future. Despite really wanting a different life, I knew God had a plan for this baby and our family and no matter what it took, we were going to see this journey to the end.

 

After that appointment, life quickly changed. I could no longer go to my normal OB (neither did I want to, because at the 20 week ultrasound he somehow missed a gaping hole in my son’s heart, so I lost all trust in him) and now every appointment was at Yale which was about 45 minutes-1 hour from our house depending on traffic. At every appointment, we would have an ultrasound and they would take measurements of his arms, legs, nose, and neck fat.  Every time, we were hopeful that maybe they were wrong, and unfortunately at each appointment, they still could not completely say for sure if he would have Down Syndrome or not. We were given so much information to peruse to learn more about Down Syndrome, but neither of us really wanted to believe this was real, so we put it off as long as possible.
I can honestly say that I did not enjoy the rest of my pregnancy. My big belly made it impossible to forget the impending future. We prayed every day for a miracle. We knew if God made this baby, He could change him back to normal. It sounds so silly now, but boy, we prayed hard for that to happen.
Finally the time came; they scheduled me to be induced at Yale the day after Christmas 2010 at 39 weeks pregnant. They needed to make sure the whole team of specialists would be in the room when he was born to take care of his physical needs due to the AV Canal defect. We left early in the morning of the 26th because the Blizzard of 2010 had started and we couldn’t risk not being able to make it to the hospital. They ended up not inducing me that day because some of the team could not make it through the treacherous roads, but then I ended up going into labor on my own.
Thankfully we made it through the night and went into the OR to deliver our son the afternoon of Monday, December 27th. This delivery was so different from the cozy room with a soft bed that I was able to deliver my first son in. This room was huge, with only a metal table and so much stainless steel. I remember being so uncomfortable laying on that hard table and looking down to see 13 people in gowns and face masks staring at me. I remember feeling so awkward as they all continued to stare in between contractions. The nurse had told me before we went into the OR that the baby wouldn’t be more than 7 lbs because Down syndrome children tend to be small and generally have “failure to thrive.” Since my first son was 9lb 3 oz when he was born, I was looking forward to a smaller baby to push out.
Joshua newborn
I pushed for about 20 minutes and then the baby’s heart rate started dropping. His head was almost out, so they asked if they could do an episiotomy, which, I of course agreed to, in order to get him out. One push later and Joshua James was born weighing in at 9lb 6oz. I only got a quick glimpse of him before they rushed him to the NICU, then I started throwing up, probably a result of all the stress and the epidural.
Joshua pinky
I told Daniel to go and stay with our son, while my parents wheeled me up to my room then went down to meet their grandson. I really wanted to go and see my son, but I wasn’t allowed to go into NICU if I was throwing up. While everyone was down meeting Joshua, I had a group of doctors come up to my room to share their diagnoses with me. They were sure of his heart condition, but still not 100% sure of his Down Syndrome diagnosis, so they were going to have a geneticist come and do some bloodwork on both of us as well as Joshua . They said his O2 was low and he would have to be on oxygen until he was able to keep it up himself. They left and I cried. A couple days later we received to bloodwork results, Joshua did have Down Syndrome. It was a rare form called Translocational Down Syndrome, which affects about 3-4% of people born with Down Syndrome. Often this is passed down from the child’s parents, but in our case, neither my husband or I were carriers.

 

Joshua mommy

 

The next morning, I walked down the four floors to go and finally see my son. The minute I held him, I felt so many emotions. I was pretty confident he had Down Syndrome, but at that moment all I felt was love. He was perfect and he was mine. I vowed in that moment to do whatever I could for him.
 I pretty much sat in NICU for 2 days until I was released from the hospital and sent home. That was the worst feeling ever, having to leave without my baby. Each day we traveled the hour back and forth to the hospital to bring the breast milk I was pumping at home and to spend some time with him. We also had our son John at home who was constantly being left with family and friends so we could go visit his brother. Emotionally I was torn each day. John didn’t understand why we were leaving him so much, yet we didn’t want Joshua to be alone at the hospital. The NICU also had a strict policy that one of the parents had to be present if someone else wanted to visit so we couldn’t arrange for people to take shifts to sit with Joshua.
I remember one day, I decided I just couldn’t go to the hospital. I hadn’t taken time to recover from giving birth and had been up and moving constantly. The exhausting schedule, stress from the whole situation and sadness over leaving John everyday, was catching up to me. A family member called me, unable to understand why I didn’t want to go and see Joshua, until I explained, through tear-filled eyes, how emotionally I was so drained from having to choose between both of my boys, and that I just needed a day to be with John. And he needed his mommy.
Joshua stretch

 

About 2 weeks later, we were able to get Joshua transferred to a closer hospital so that we would not have to drive so far. Before he was transferred, we were required to get certified in infant CPR and I learned all the signs of congestive heart failure so we would know when it happened. Once Joshua was moved to L&M, John was finally able to go and meet his baby brother. I was so excited to see John with his little brother. I loved the innocence. He had no clue that there was anything different about his brother, and in that moment, I knew that it didn’t matter what anyone else thought about Joshua. He was going to be loved by us and that was what mattered the most.

 

first family photo 163413_10150123870810519_6852571_n
 Finally, on January 13th, Joshua was able to keep his O2 saturation high enough to allow us to take him home. What a wonderful, yet scary, day that was. We were so excited not to have to travel back and forth to the hospital everyday, but we knew it was only a matter of time before he would start showing signs of congestive heart failure and we would have to bring him back for open heart surgery.
Joshua home
 For the next 3 months, we basically hibernated in our house. Joshua’s immune system was too weak to encounter public germs, especially during cold and flu season, and we couldn’t risk him getting sick before his heart was repaired. Daniel would come home from work as a teacher and completely change his clothes before holding Joshua. If people could have seen inside our home, they would have thought I was a germophobe and that I had bought stock in Purell, but we didn’t want to to take any chances. We would even take turns going to church, and my in-laws would often take a turn so my husband and I could take John to church together.
john joshua
Then the day came, in the middle of March 2011, when we realized he was retaining fluid and noticed a blue tint around his lips. He was put on medicine to reduce his fluid retention and we carefully monitored his health at home with the help of the visiting nurses. A few days after he started with the symptoms of congestive heart failure, we met with the surgeon who walked us through what he would do and Joshua’s heart surgery was scheduled for the following week.
Stay Tuned for Part 2 – Joshua’s Heart Surgery & Recovery