Almost 4 "It Gets Easier" - A Mothers Experience

What I have learned now that I have four years to look back and evaluate how I got to today. 

Were once I was the student I find myself now the slightly-more-seasoned-teacher.  I learned what works and what is a waste of time with all things big and small.  I do get calloused at some things and cynical with other things, but I have now built a better understanding and emotional relation to other aspects of life.  I learned who really has my back and who I can count on. And I learned how to build relationships by opening up communications with those who were timid or afraid to be a part of my special needs world.  I have learned how strong I can be and how much stronger I can get with each hurdle.  I soon realized there is no limit to the strength I can build.  I learned what is important in life, what aspects are superficial, and what now makes me truly happy. I learned that being content is the same as being happy, just not as flashy.   I find myself having an inside chuckle when hearing certain phrases or getting incredibly offended or sad hearing others.  I have found myself having more manic days out of adrenaline rushes or utter exhaustion.  I have found my new “me.”  It is different, more mature in some ways and yet more emotional in others, but it is still good.  Choices become clearer and easier because I do not have time to waver on anything and have to make big bold choices and actions immediately.  After so many of these choices being thrown at me I have found my ability to tackle them much faster.  The emotion attached to these will still be the same. But the choice on what to do comes faster because I have now learned that I have little control over the outcome to most choices I have been forced to make.  

After four years I have gained a whole new understanding of my growing boy.  I have been able to figure out what certain movements or sounds mean.  And if I can’t, I make up my own meaning to them to bring another moment of happiness to my day.  Noah’s eyebrows move much like mine.  All over the place and with each and every thought my eyebrows express themselves.  When Noah likes something or I think he might be concentrating, his eyebrows go up in unison.  When he is familiar with a song or voice his eyebrows go up in unison.  To me, upward eyebrows mean happiness, familiarity, positive thoughts, and smiles.  Locking knees on the other hand can mean the complete opposite.  When Noah feels overwhelmed or loud sounds are starting to get under his skin he will lock his knees and stiffen out his legs.  His entire body becomes rigid and he starts to move in awkward little jerks and twists.  At one time I thought these were random acts of neurological misfires. Then I thought that he was seeking stimulation or movement.  After four years I have finally learned that when Noah does this he needs his space.  His quiet dark time alone to center himself and calm his over-stimulated nerves.  Noah will now suck his tongue as if imitating sucking on a pacifier and this means he is thirsty.  He does this every single morning and once I realized his night meds cause cotton mouth it finally clicked.  When he wants a drink he sucks his tongue, when he is really intensely hungry he will shove his three fingers in his mouth and suck on them.  When Noah is tired he will immediately start to fuss and the smallest of sounds can set him off into a full blown cry-fest.  The second we see Noah’s tired eyes means we have exactly five minutes to get him into his own space to ensure a calm and peaceful night. 

Noah’s laughter is joyous and full of light and peace and I am pretty sure it is what snowflakes are made of.  Noah has laugh attacks that come out of nowhere and can last 30 minutes.  As an infant he would have them before he fell asleep.  Now that he is four he will have them on the school bus, or riding in a car, or sitting in his wheelchair riding on pavement.  He will also just be sitting in the middle of the room playing with the same toy he has held for the past hour and all of the sudden break out into boisterous laughter.  I cherish these moments and try to make sure that every instance is safely stored into my Noah laughter memory box. 

I have learned that I can plan, pack, and prepare for days before any single event, holiday, or simple family outing. But in truth, I have no control over what might happen and soon realize the time I spent preparing were wasted minutes I could have focused elsewhere.  This isn’t a special needs lesson.  This is a parenthood lesson.  I didn’t know this until I had the twins. 

In fact, since Noah was our first I didn’t know much of anything regarding the differences between being a parent of a special needs child versus a neuro-typical child.  Now that I have two typical children I realize that most of those first year worries, tears, and hard moments were actually first-time parent moments and not just because we were caring for and raising a special needs child.  Every single parent in the entire world has these moments.  Every single one of them!  That thought made me feel not so alone or lost like I felt in the beginning.  Actually, now that I have built such a big support system of other mothers raising both typical and special needs children I never feel alone.  I have friends all over the world with a wealth of knowledge and advice that a price tag couldn’t be put on. 

With that being said I still have my dark moments.  Usually when I am shopping by myself during my lunch hour or riding in my car alone to pick up the kids from daycare.  It is always when I am alone and I have time to overthink things, dwell on the past that can’t be changed, or stress over future events that haven’t even happened yet.  I am always living in the moment and that is my happy place I have figured out.  When I let my mind float to past or future stresses is when I tread into emotional roller-coaster territory.    I have targeted my weak area and I have found solutions to overcome it as well.  It took me awhile and much self-examination but once I accepted it, I learned from it, and I grew from it. 

I learned that I have to say “yes” much more often.  When help is offered, meals are offered, an invite to lunch or even a quick walk around the office with a coworker to chat.  I am not naïve enough to think I can do this on my own.  I have the best husband I could ever have hoped for. I have amazing parents and in laws and family and friends.  Life is so much easier to walk through with a helping hand.  I do not pretend to be supermom.  My house is in one constant state of chaos or havoc.   Some weekends the only tasks that get accomplished are some games of chase, some giggles, and a million new messes. 

Life is short, it’s hard, it’s equal parts sad and happy, and every minute of every day is a new opportunity to make a new memory with those standing next to you.  Life as a special needs parent means each new obstacle of the same type gets easier, but the first time is always the hardest to face - - isn’t that just the way life is for everyone?

Neuroworx Pediatric Therapy Clinic  

(Noah's Ark Rainy Day Fund-Named after our Noah)

If you would like to help fill it up with much needed equipment 

click here

Neuroworx is the amazing therapy clinic that Noah goes to and works really hard to build strength and muscle. They are a non-profit organization and rely heavily on donations to expand (all tax deductible).  This year they were able to open their new facility and create their first ever pediatric department.   It is a beautiful room waiting for much needed therapy equipment for all those children who want to learn how to walk.  As you can see from the picture of Noah above the space is empty.  If you would like to help contribute to this space please click on the link above.  You may request that all donations be directed specifically to the pediatric department or you could choose to donate to the Noah's Ark Rainy Day Fund which helps children that cannot afford to pay for therapy get the services they so desperately need.  This fund was created specifically for children and named after Noah himself.  

***children are currently using the adult equipment but it would be wonderful to provide them with their own and allow more children time slots on these machines.  Currently, children  time slots are only available 2 days a week but with your help these kids could get their own machines. go full-time, and open up the pediatric clinic 5 days a week.  

Let's get these kids walking!!!

Time is Relative & Differences will be Noticed

Time is relative. This year I have figured out just how true that statement is.  It has been nearly four years since Noah was born, Maddy and Ellie just turned one two weeks ago, when the “witching hour” hits around 6:30 pm each night it feels like an eternity until they are all asleep, and yet as I sit here I wonder how the year could have flown by so fast.  I am pretty sure I just pulled out the summer dresses, but as I walked out my front door this morning I felt a little bit of the crispness fall brings to the air.  We are still officially in the beginning of August and when I find seconds to myself I am looking at Halloween costumes or Christmas gift options online.  

It has been ages since my last post and yet I feel like I just wrote one a month ago.  I still call the girls my babies, heck, I still call Noah my baby and yet I can’t find a single outfit in the baby section that will fit any of them. I know time is moving forward because each time I see myself in the mirror I notice my pixie hair cut is no longer cute or short and I think there are at least 100 new grey hairs sprouting now.  Who knows when my last hair cut was but I swear I told my neighbor the other day how I am loving having really short hair.  Not so short these days since I can put it in a ponytail now.  Time has passed and it is all relative.  

Just last week I went through every single photo I have on my phone or uploaded to my saved folders.  I found myself smiling, laughing, getting teary eyed, and then feeling utterly blessed.  My husband and I truly are so incredibly blessed.  Noah has come so far. Since we see him every day I have to remind myself by visually seeing his progress through my constant snap happy photos I take each week.  To think a year ago I sat on a chair exhausted holding two newborns and got to witness Noah pushing up from his tummy onto fully extended arms for the very first time.  One year later Noah refuses to lie down on his back.  The second we lay him down on his bed or the floor he is flipping to his side, pushing up on one arm, assisting with the other arm, getting into a full upright sitting position, and then teeters there for at least 20 minutes before his core gets tired.  In the beginning of this new stage Noah would crash hard and we had to take every safety precaution to ensure he wasn’t smacking his head on his way down.  Helmets were purchased, pillows littered every square inch around him, tables and tiles were padded. Nowadays Noah can catch himself 95% of the time on his way down to ensure a safe fall, major progress!  

These new wonderful milestones came from a lot of hard work on his part, hours upon hours of physical therapy, and one of the best physical therapy teams there is (Rick his actual PT, Mommy & Daddy, and Rikki our PT student who helps us a couple times a week).  We have to make sure to take what we learn with each therapy visit and engrave it into our daily lives and every single activity.  Changing his diaper, bathing, going to bed, waking up in the morning…all come with a bit of therapy involved.  We don’t even realize we are doing it anymore.  Well, that is until I find myself trying to maneuver the girls the same way when I change their diapers or bath them and in return I get a whole other experience.  Let’s just say changing a diaper on a child who does have core strength and flips and crawls and kicks and screams is SOOOOO much harder than incorporating therapy techniques into Noah’s diaper changes.  Speaking of diaper changes though, Noah suddenly learned to just sit up if light pressure is held on his legs.  Talk about an ab workout.  He just sits up “corpse style” as I call it.  Not even using his arms anymore.  So tall, so straight, so stiff, and only the lightest of pressure on his legs provides him with enough support to do this.  GO Noah GO!  Keep working that core. 

Over this past year I have found myself  having pretty much all the classic ups and downs that goes into being a special needs parent, a  new parent of multiples, a full time working mom, a wife, a pet owner, an owner of bills and finances, a home owner, a daughter, a sister, and a friend.  I found that I have pretty much experienced every single situation, thought, fear, happiness, joy, panic, or memory making moment a person can have this year.  Sometimes I say “I survived” this past year.  Sometimes I say “I lived” this past year.  Sometimes I am too tired to even know how to think and just sit there staring at a tv and realize minutes later that I never actually turned it on.  

Through all that I have experienced the two things that stand out the most are how strong my marriage really is and how well we work as a team.  And raising three little souls who are night and day different from one another teaches you more about what life truly means than any book, blog, podcast, tv show, or news article.  

I have learned that everyone around me faces their own trials, hardships, ups and downs.  I have learned that every person deals with these things in their own way.  Some find things more life altering than others and what one would consider an easy battle is a major storm for the next.  I have taken to heart those around me who fill their days with joy and laughter.  I have learned that it isn’t easy, but doable, to brush things off and go feel the wind or rain on your face.  I have learned that I will compare Noah to Ellie and Maddy just like any other person would compare their children, pets, siblings, or coworkers.  It’s natural to notice differences in similar things.  I will always notice when the girls do something that Noah has yet to even attempt.  I also will notice when one of the girls does something before the other.  

I never did baby books for the girls because I didn’t for Noah since nobody has ever made a baby book for the type of milestones he can make.  I also never wanted to have the girls sit and compare who did what first, if what they did do, were only days apart from one another.    It didn’t matter to me who spoke first, walked first, rolled first, or ate first.  What I have learned from watching my three kiddos is that they learn from each other and teach each other without even knowing it.  When Noah was able to push up with arms extended the day I brought the girls home, I knew the girls would be following him shortly.  The day I saw all three push up together as if I had my own mini gym in my front room I was elated.   Noah started doing barrel rolls about the same time the girls did and somehow he learned where all the toys are stored in the living room and will roll that way.  Had to be because he noticed the girls always heading that way.  We never showed him.  

It didn’t take too long for the girls to surpass Noah. I had been reading up on how to prepare myself for the emotional rollercoaster I thought I would have on that day.  I remember it clearly.  It was after work, I was tired, I had about 30 minutes until my husband got home and was trying to stay calm and collected to care for the three until I had him home to help me.  I kept them in our “safe zone.”  Our fully baby proofed living room.  The only room in the house I could sit and breathe without panicking about one or the other getting hurt or hurting each other accidently.  I had my diaper station, my bottle station, my toy area, Noahs helmets, the tv, books, crash pillows, a basket full of burp clothes, the emergency puke bucket and Noahs emergency gtube kit just in case little hands found his button and decided it was a toy while I was changing one of those diapers I previously talked about.  After doing my rounds I found 30 seconds to sit back and actually lean against the back of our couch and remind myself to breathe in and out slowly and pace myself.  The kids were all on the floor and Maddy suddenly flipped onto her stomach and then back onto her back.  Ellie then found a toy, grabbed it, chewed it, and then tossed it to pick up a different toy she thought was better.  That is when it hit me.  Noah couldn’t yet flip back and forth like that.  He was close but not quite there and nowhere near that fast.  And even though Noah could now bring toys to his mouth he never visually tossed one aside to reach and go after another toy.  I sat there watching them thinking to myself “this is the moment!”  “Angie, this is that pivotal moment you knew would be coming.”  “Feel those feelings you know are coming.”  Yet…I didn’t.  I just sat there and watched them thinking “cool…Maddy can now flip and Ellie can now make choices.”  It was simple and fleeting and anticlimactic.  I did notice it but it wasn’t this monster of a moment I thought it would be.  All that time reading and prepping for this big sudden realization and emotional roller coaster that never happened was kind of disappointing. Not because I wanted a big rollercoaster but because I had spent so much time worrying about a moment some people told me would be massive and yet for me personally it wasn’t.  

That was one of the biggest lessons I learned this past year.  There are so many articles and stories about other people’s experiences, triumphs, and trials.  I thought that if I read enough of them I would relate or be more prepared.  I spent so much time during my pregnancy worrying what it would be like to have children after having a special needs child.  I spend so much time feeling guilt for moments that hadn’t even happened yet.  I felt so much sadness thinking about how I might feel on a future date because an article I read said they felt that way and thought I might feel that way too.  Yet I didn’t.  To me there were just so much more to think about when those moments actually did happen for me.  Instead of feeling sadness for Noah not being able to eat a spoonful of mush the first day I fed it to the girls I celebrated that Noah now had two sisters to watch eat mush and hopefully give him something to desire to do one day too.  The day the girls started to crawl I wasn’t sad because Noah couldn’t crawl.  I watched them closely. So close in fact that my camera couldn’t focus on their tiny movements as I took hundreds of pictures to teach myself how a typical child’s muscles worked in the first days of crawling. I learned from their movements and incorporated what I witnessed from them into therapy techniques for Noah.  The best part was that I had two babies to learn from which meant two totally different techniques.  I love the fact that Maddy and Ellie are completely different because it is an everyday reminder that everyone is different even if they happened to be born from the same place seconds apart.  They are just as different from one other as each of them are to Noah. This simple reminder keeps me grounded most days.   It tells me that each person young and old are living their life in their own speed and direction.  Each person has their own interests, sounds, dislikes, and loves. Just as each person has their own trials and triumphs.  I will notice the differences yes, but these differences cannot and should not be compared to each other.   I have figured out that when I see something that is different it does not affect me like I read it would.  This gives me strength because now I can trust that part of myself.  I know for the future that when I do see the girls do something that Noah cannot I will not get all sad and depressed and start comparing and wishing for the shoulda-coulda-woulda’s.  I will notice it and see it but I will smile for the girls and learn from them and then use what I just learned to help Noah.  One day the girls too will be able to help his as well and add to Noah’s therapy team.  

All three of my children have grown so much this past year.  Some things I would like to forget but many more I will keep in my memory bank for a lifetime.  Their three personalities keep us on our toes and we have to be ready for three outcomes to any event or situation that comes our way.  We have to roll with the punches because nothing every goes as one would hope.  We have to keep learning and then relearning and then relearning again with each one of them.  It’s pure craziness and the bags under our eyes and grey in our hair is testament to that.  Sleep is a luxury we have yet to enjoy on a regular basis and laundry is a battle we will never win no matter how much we spend on detergent.  Formula is a thing of the past now and our stock pile of baby food jars is dwindling as well.  Most of the large infant equipment has been washed and given back to their original owners which has opened up what little floor space we did have for bigger and better toddler toys. Having the girls transition into toddlerhood reminds us again that Noah too is a big toddler and likes toddler things as well.  Just because he can’t yet actually play with most of it doesn’t mean he doesn’t like to watch and listen to his sisters play with it.  Another reminder that as Noah grows up so should his food options, toys, tv shows, and activities.  He is no longer a baby even if he can still only physically do baby movements.  Noah is growing up and having two little siblings reminds us that he is ready to take on bigger things in life.  I am not sure we would have realized this if it wasn’t for the girls.  He is ready.  Watching all three of them has made us ready.  

Noah turns four years old in November. He will be riding the school bus to preschool three days a week.  He will be attending therapy 2-4 times a week.  He will soon be having two sisters helping push his wheelchair and cheering him on at therapy, two siblings to flip through books with him and bring him a different toy every minute.  The best part is that we will get to watch all of these moments, snap our pictures, and bank so many new memories.  Just that thought makes me smile.  I love my life.  Exhausted craziness and all!  

Spring Swing

When you have an immobile toddler you tend to get creative when trying to find new and exciting ways to entertain them.  Bonus points if you can turn it into some form of therapy exercise, and double bonus points if you can bring a smile or laughter to your little ones face. 

We have discovered a handful of very specific things that will always bring Noah to a roaring laugh. 

#4 when the warm sun shines on his face or cool breeze brushes his skin. 

#3 Swimming pools (aka swim therapy)

#2 when loved ones sing him his favorite songs and tickle his face at the same time. 

                    BUT above anything else in this Universe the

#1 thing that makes Noah happy is JUMPING!!!!! 

Baby Noah all chunky and cute

As a baby this was an easy activity for us to do with Noah.  Other than bouncing him on our knee all we had to do is bring out the floor or door frame baby jumpers. We then had to secure him in with whatever blanket/pillow/or safety device we needed to use to bring him comfort, and our little guy would jump jump jump his little heart out.  The laughter and joy it would bring Noah was unmeasurable. It helped us parents and his caregivers provide an outlet for his energy that would otherwise build up and make him ornery.  We would pack those baby bouncers with us everywhere we went.  Vacations, family and friend homes, daycare's, ect.  He loved it.  Love isn’t even a big enough word to describe how much he LOOOOOOVED it.  It was his ONLY independent activity, his only source of repetitive vestibular movement that didn't break our backs, his only energy absorber when not doing physical therapy, a big scoop of sensory dessert for his body and soul, and I as his mom believe it was/is the #1 exercise that helped build strength and tone in his leg muscles, ankles, hips, and knees.

One of four different types of baby jumpers that we have used...and our least favorite as the three straps kept making Noah want to rest his head on the back strap.  You can see his joy in this video though :)

Crash! Thud!

His doctors have repeatedly commented on how strong his bottom half was in comparison to his core and upper body.  I frequently joke with my husband that I am going to invent and upside down bouncer to work on his shoulders, back, and arm muscles.  If only there wasn't that whole blood-rush-to-the-brain issue when being upside down to worry about :) 

One glorious afternoon as Noah was partaking in his daily allotment of jumping we heard a BANG! CRASH! THUD!  The spring broke on Noahs jumper. Thankfully it still had the safety strap so even though his knees fell to the ground he was still swinging securely in the chair. 

We tried fixing it on our own rigging and bending the spring and making due until we were able to get our hands on another jumper.  This whole Bang! Crash! Thud! Soon became routine as Noah got older and much heavier and had now broken a handful of these baby jumpers and was now falling all the way to the ground which was posing a safety risk that we had to prepare for ahead of time with a circle of pillows or door frame padding.  We were way beyond the weight limits for every single baby jumper on the market.  It was a sad day when this momma realized our only option was one that costs hundreds if not thousands of dollars because it was marked with the “Special Needs Equipment” stamp and therefore came with a price tag that was beyond our means.

Dang broken springs!

Determined, I began my own search trying to figure out a way to bring my Noah his favorite past time again.  I visited hardware and parts stores, researched spring companies and medical companies.  I called gyms and manufacturers of baby equipment.  Nothing seemed to pan out and I was really heart broken.  This was a dark time for my Supermomminess energy levels.  I felt defeated.  I would go home and stare at the latest broken jumper and examine its parts trying to envision a possible solution. I was also trying to entertain a bored boy laying on the ground staring up at the ceiling probably bothered that I wasn't hooking up his jumper and letting him play.  It was horribly sad….then a MIRACLE happened! 

I was casually perusing a daily deal website and clicked on some category titled outdoor playground equipment.  Among the many slides, swings, and blow up bounce houses listed was a device called the Spring Swing.  Basically a roped disk swing with a kick-ass super spring system designed by a company in Mississippi.  Spring Swings has designed not only their SpringSwing but also Ziplines and other “backyard recreational tidbits.”  I found myself going frantic clicking on every link on their website and trying to figure out a tactful way of reaching out to this company and praying they would actually return my email and many questions I had about their swing. 

You see, I didn’t actually want to purchase their swing to use on its own but rather buy one to tear apart and adapt to Noah’s jumper.  I didn’t have the heart to say “Hey, you don’t know me from Adam but can I have your secret to adapting a spring that will hold my fast growing heavy son.  Then I would like to take your idea and put it on another company’s baby jumper and then put it up in my own house for my son to use.”   Who would go for that!?!  I thought for sure I either wasn’t going to get a response or I was going to get some legal mumbo jumbo thrown my direction or a big scolding for trying to mash up two different company devices and use on my special needs son.  I was waiting for the wrath…or let down. 

To my surprise I got a really fast response.  Not just a response but a kind email from the company wanting to actually go out of their way to help me make this happen for my son.  I couldn’t comprehend what I was reading.  Someone who has no clue who we are wants to take their time and resources and actually help me put together my crazy device.  Furthermore they didn’t just want to help me…they wanted me to ship them my broken jumper and they were going to do it for me.  I cried.  Tears of joy and tears of humbled happiness. 

contemplating his new bouncer

I few weeks later, a couple days before Christmas the package arrived on my doorstep.  They had adapted Noahs baby jumper with their spring system. They went the extra mile making sure it was secured using bigger better bolts and other tidbits to help Noah stay secure and safe. It is a bit louder than one would like but that is the smallest price to pay for Noahs happiness and honestly he or the girls seem to mind it.  The best part is that they did this out of the kindness of their hearts and never once even asked anything from us at all other than a follow up picture to let them know how it worked.  It just goes to show you that there truly are angels in this world who can put smiles back on the faces of total strangers. 

This video was taken the very first time I put Noah in it.  He was not sure what to totally think of it yet as it sounded different than he was use to and we put an eye hook into a beam in our living room so he was jumping in a brand new area and taking in all the Christmas lights we had strung up for his vision therapy earlier that week.  You can see how happy he is from this video.  We have since put in other eye hooks into beams in other areas of our home so now Noah can be right next to us jumping in any main room we are in rather than door frames.

I just want to personally thank Jason and Frank and everyone at Spring Swings for helping Noah, who is once again jumping, laughing, and smiling with his momma following suit.  We could have never done this without you and your compassion.  We feel truly blessed. 

Spring Swings
http://www.springswings.com/

Products: Our thoughts for our Noah

Our thoughts on different products we have tried, bought, or used for Noah.  Please note this is only our thoughts about products for our son only and his disabilities.  Most of these items we purchased used to save on costs or borrowed from friends or EI to try out. 

Upsee from Firefly:  Really cool walking device.  However, we personally feel this devise is more for the parents to see them upright and walking than it is for Noah to learn how to walk.  Yes it does initiate tandem walking to get them familiar with it but in Noah's case we have to do every single step, it is hard on our backs, it is really expensive, and Noah tends to throw his head back into our bodies for support.  We also found he have to have two people there to get Noah strapped to us.  I still think this is a really cool device but as far as Noah's case goes this has not really helped him learn to walk at all.  I find I stumble a lot in it and steps are so hard I stay away from them.  It is made really well and the materials are high end.  A very secure piece. 

GoTo Seat

GoTo Seat by Leckey:  LOVE the idea of this seat.  However my opinion still stands on the previous post I made for this seat.  

Dolphin bath chair

Dolphin Special needs pediatric bath chair:  Love this chair and used it a lot at first.  Now I find that I dont ever use it because I would rather just fill the tub up with a couple inches of water and have Noah splash around while I make sure he doesn't turn his face into the water.  The chair sits really high so you have to fill the tub really high to get Noah actually sitting in water and not freezing.  I end up using way more water by using the chair and washing it is kind of a pain.  Over time the material starts to peel but only after we had it for two years.  It came with leg extenders to make it higher but I have not used those yet.  Nor have i used the straps as Noah is still young enough and immobile enough to not have to strap him down.  I know for sure that once Noah gets way too big for us to haul out of the tub we will use this more often.  For now at Noahs current size I find the strain on my back is the same using it or not and Noah loves being in water so I just lay him in the tub with a soft bath mat that has a thin bath pillow.  

Star Kids Tray

Tumble form chair

TumbleForm Chair with wedge:  Really great chair but the velcro isn't as secure as I would like it.  We bought ours used and it didn't come with straps so I just use a neoprene workout stomach wrap to wrap around Noah as he sits in this chair.  Kind of big and not the easiest to lug around.  We use this multiple times a week along with the Star Kids Snack and Play Travel tray. We love this tray and bought two of them.  We attach toys all around the edge using baby diaper pins or retractable work badge lanyards.

Childrite Chair

Childrite Therapy Chair:  Just a bigger version of the baby bumbo chair.  We love this thing.  At first Noah didn't have the core strength to sit in it for long without falling forward but over time it has really helped him and I think this is a great chair.  Again, we bought a used one to save on costs.

Hanging Porch/Camping Swing:  We actually took off the leg rest and cup holder, screwed a couple eye bolts into our ceiling and then hung this chair for Noah.  We then tilted it back further than normal and I then took a piece of fabric and sewed it to fit horizontally from one arm rest bar to the other to make a safety feature to cover up the side holes so Noah couldn't roll out of the chair.  He loves this swing.  Its big enough to be safe for him and it didn't cost a fortune (actually ours was a gift but if you were to buy it, it isn't that bad).

ErgoBaby Carrier:  We still use this and have since he was just a newborn.  It is sturdy and secure and holds a lot of weight.  The only downside is the older version that we have they cannot be positioned to face outward.  The newer versions do.  Makes it the ONLY way I can bring all three kids to the store.

Spinning baby floor Mats: The spinner is really good for working on head control and the mat has a ton of different textures and sounds.  I still use this with Noah. He can almost spin all the way around using his arms to drag him.  He is too big for it now but we still use it.  

Tumzee Tummy Time wedge: Great product!  Noah grew out of it fast because I didn't know this existed until he was already 2 years old.  Wish I would have had this when he was a baby. 

Summer Infant Vibrating Toothbrush: If you are working on oral aversion and looking for an oral vibrating tool go this route before you spend the big bucks on a Z-vibe.  Noah LOVES this thing and the attachments are easy to wash and ours has lasted for over two years already.  

Sassy Doorway Jumper and Baby Einstein Floor Jumper: I like these brands because they are built strong and work for Noahs body type and abilities.  The doorway Jumper has a really secure door frame locking clamp and the actual seat is built wider and deeper than other brands I have found.  Also, I like the four rope design rather than the three so Noah doesn't keep leaning back on the ropes.  Also the leg holes seem bigger than most and makes it so his legs can be closer than other models and not so bull-legged.  Noah is way beyond the weight requirements for these baby devices but with caution we still use them as they are the only independent activity Noah can do.  Also, I should warn that he has broke a few of the door jumpers getting wild and crazy and again..because he is just too heavy for baby jumpers now.  We keep buying them though as he loves them so much.    The Baby Einstein floor jumper is great for him too even though once again he is too big now for it.  It has different levels and I love that he can put weight through his arms while in this and has taught himself how to turn around in circles while in it.  Plus, the music is actually enjoyable on this baby device. 

Some of Noah's favorite toys:

A simple orange slinky: Cheap, Orange helps kids with CVI, easy to grab, easy to attach to things, easy to carry around with you, easy to replace and wash.

LeapFrog My Talking LapPup:  Easy buttons to push, lights up, volume control, and he loves the star button.

Light up toys:  Anything that lights up and spins or flashes (be careful if you or your kids are prone to seizures).

Woofer Hound Dog Guitar: This was a gift for Noah and he hasn't stopped playing with it daily since receiving it.  I love playing with it too.  The sounds are great.  The buttons are easy to push (or bang in Noahs case), it has many settings, can be strapped around his body, and it just really cute.

Balls: The type that lights up or you can shake, grab, chew, grasp, or roll

Fisher Price light up Mobile for crib:  Since Noah still cannot reach out and grab things or stand up we still use this mobile on his bed.  He loves it.  It lulls him to sleep and he loves to watch the projected pictures on the canopy (or ceiling if you remove the canopy).  He is doing vision therapy without even realizing it.

Banging toys like drums or keyboards:  Teaches him cause and effect and he loves to make noise just like any other kid does.

Things I wish I had NOT purchased as they were a waste of money or Noah just isn't ready for them yet. Sometimes I just get wrapped up in the idea of something being magical and helping Noah in a big fast way.

DormRoom Privacy tent:  I thought it would be cool to have a collapsible dark room to do Noahs vision therapy in since it would block out surrounding stimulus.  More of a pain to keep putting up and taking down.  It lives folded up under our couch.  Still think it is a good option.

Wingbo Tummy Time Swing: I am still thinking the girls will LOVE this but as for Noah he hates it.  He loves the movement but the plastic is hard on his Gtube site and hurts him.  I have to pad it.  Also, Noah tends to want to roll off the side or push up with his legs in a standing position and arch his back.  I hoped it would help with head control and upper body strength.  Not so much with Noah.  A fun past time though to play with but as far as therapy for our little guy it didn't work so well. He is too big for the stand currently so it hangs from the ropes off our ceiling when we put it up. 

Platform swing with innertube:  Still a great idea to help with balance and head writing and other therapy techniques.  Bad for Noah who cannot hold onto the ropes and just wants to tip off the swing.  In time as he gets older and hands stronger this will be a good idea but for now it collects dust and takes up room.

Yoga Balls or Bean Shaped Yoga balls:  I purchased a few of these...all of which made Noah throw up.  We stay clear of Yoga ball therapy techniques with him unless we are outside with a bucket of water near us.

Pressure Vests:  Noah just gets bothered while wearing them and hates the sound of velcro to get them on and off. 

Noah is THREE!!!

Big Brother Noah with his baby sisters Maddy and Ellie

We have a Preschooler...yikes!

Where have we been?  How is Noah doing?  How are we doing?

Summary of our past six months:

Due to lack of time and ease of updating by blog I have copied Noahs two year old update post and filled in everything for his current age and stage in life.  

We have had a really really really good year.  Where do I even start?  I guess it all started when Noah got glasses in December of 2013…things just started to happen after that.  Not really sure if it was the glasses that did it, but that is the moment I can remember when we really started to see Noah make some great strides. 

Noah turned 3 on November 10^th (yesterday).  It was not the birthday I had hoped for as our Noah came down with a little bug of some sort.  Today was supposed to be his first day in preschool but again…his fever kept him home.  We never really know what is going on when Noah gets sick.  He cannot communicate yet to tell us if it is his stomach or ear or something else.  We have noticed that for some reason he responds really well to Ibuprofen and Tylenol does absolutely nothing for him.  The problem is that it only helps him for about 2 hours and then we have to wait another four hours for another dose to help with his fever or aches and pains.  It still takes Noah many days to get past any form of sickness and that does take its toll on us sometimes.  Hoping for a very good winter (fingers crossed).

We do not like when Noah gets sick

 

Noah became a big brother to two little sisters this past July.  At first he didn’t care for their cries and loud sounds but over time he has acclimated. I can see a big change in him since their arrival.  Some good some bad.  He is visually attending more to them which is wonderful to witness.  However, he has also become really sensitive to noise and the fact that we have three kids to care for now instead of just him.  He has had to learn to sit next to us while we feed his sisters and sometimes he just wants our undivided attention.  This happens to be a very “normal” issue that all parents with multiple kids experience and as sad as it makes me when Noah starts to cry, I keep telling myself that he is crying because he wants me or daddy and that means cognition, emotion, cause and effect, and understanding! 

Ellie and Maddy Love their big Brother Noah

NOAHS CURRENT STATS:

Length: 42inches

weight: 30 pounds (finally put on some weight)

head circumference:  3^rd percentile  

seizures: he has been having some “episodes” but neither his Neurologist or GI doc know what they really are and there have been so few that they are not treating them right now.  They always happen when he is asleep and always after a meal.  

fed: G Tube, blended diet, water at night, total regression in feeding therapy.  Back to small tiny tastes of puree food with TONS of bold flavors.  No more oral aversion but he can’t swallow for some reason.  

voice: no words yet but babbles constantly (especially at 3am)

Favorite things: bouncing in jumpers, books, music, laughing, his silky blanket, his binkie (yes…he still has a binkie), when daddy tickles his neck, the sun and wind, Cartoons, his guitar toy, going over train tracks, crossing his legs or lifting one leg up and grabbing his foot, standing upright totally assisted, swimming, pushing up on his hands and scooting backwards (this is new), and chewing on anything he can get his hands on.    

EYES & GLASSES: Today Noah is attending to objects.  Not for a very long time but he is moving his head towards people coming into a room or leaning back to look up at me while in my lap.  He loves to watch cartoons with their bright colors.  He loves looking at trees.  His CVI is starting to improve in his right eye and when he had his preschool assessment they listed him at a 6 out of 10 for CVI improvement. This is fantastic news!  His left (blind eye) is starting to deteriorate at a slow pace.  He has a detached retina in that eye but since he is blind they will not fix it.  This has caused scarring in his pupil and if you look closely you can see his pupil is starting to turn silver.  They said it could take 2 months or 20 years for his eyeball to completely die and need to be removed.  A prosthetic eye will take its place at that time.  When he is older and if we choose to we can get a contact lens to put in that eye to make it look like his other eye.

Noah is an eye poker.  I HATE it!  He will take his thumb and dig it into his good eye.  This is purely for stimulation and out of habit.  We have to put a no-no brace on his arm so that he cannot bend it and reach his eye.  He sleeps with a no-no on his right arm most nights to prevent him from digging at his eye.  Only time will help this if we can break his habit.  

HYPOTONIA (ARMS, TRUNK, and LEGS):  Noahs arms and legs are getting stronger.  He still wouldn't be signing up for a muscleman competition but we are seeing some major improvements.  His legs are by far the strongest part of his body.  He is now fully standing (totally supported) and prefers to be in a standing position opposed to sitting.  He still is in love with the door jumper but is totally too big for them and has since broke it a couple times.  We ordering a Merry Muscles for him but returned it as the baby version was too small and the adult special needs version too expensive.  He is still wearing his DAFO leg braces most days but only when he is jumping or walking in the Lokomat. 

His grip with this hands has improved a lot.  He can hold small objects now for a very long time and can even pass from one hand to another.  Major improvement since last year.    He can put total weight through both arms now and will do a “girl push up” all day long if we let him.  This is another massive gain this year.  We are working on him being able to pop up on his knees.  Still lacks the strength and balance to get into the crawl position on his own.  If we put him directly into the crawl position he can hold it unassisted for about 30 seconds and then crashes forward.  

His trunk is starting to really get stronger.  He still bends over but now he will sit straight upright a majority of the time (another improvement).  He just does not have the endurance to hold it that way for very long.  This is what keeps us from being able to sit him in typical chairs, shopping carts, swings, ect.  He just doesn't have the endurance yet.  His abdominal muscles are getting really defined due to swim therapy and his lower back muscles are almost too strong, which is why it is so easy for him to throw himself backward. 

GoTo Seat by Leckey

SITTING:  Noah can sit unassisted propped on his arms for a whole minute now (another huge improvement).  He has 100% head control but if you were to lift him from a lying position his head still lags behind.  He also gets really lazy in the sitting position and if he knows there is anything behind him (person, pillow, chair, ect) he will automatically throw himself back to rest on whatever might be there….but getting much better at not doing this this year.  Sitting aids and chairs are still a major concern for me. We have a Leckey GoTo Firefly seat but he is still a little short for the bigger version we ordered and Noah still wants to lift his pelvis and slide it forward when sitting in it which makes it hard for us to use in restaurants.  Once we can master his pelvis to sit in a 45 degree angle without wanting to slide forward then I think our world will open up on what we can do and where we can take him. 

The best chair we have found for Noah is a basic Lazy boy chair (thank you Cox family) always in the reclined position.  Noah can sit in the corner of the chair safely without falling out.  No need for straps or belts, and the seat is big enough to hold toys and keep him entertained while we feed his sisters or read him stories. It is also made of micro fiber which is SO easy to clean and boy do we have to clean it daily from his gtube spills or other messes kids make. 

Trying out the Upsee Harness

COGNITION:  We never really know what Noah is thinking but we usually always know what he is feeling.  He lets us know if he is sad, hurt, hungry, tired, happy, giggly or all the in between.  We have learned his own language through is sounds and the way he is acting.  Very much like an infant really but we have the advantage of the years of experience to let us know if we are going in the right direction with what he is needing.  We know he knows who certain people are for sure.  We know he understands when he has his favorite blankets vs any other blanket.  We know he understands his type of binkie he likes and we know how to make him laugh.  We have figured out how to calm him and sooth him and we have a good understanding of how much he can endure.  One that I think no parent should have to learn so quickly but it has been good for us in hospital situations.  I know he understands the difference between certain cartoons and types of music.  He becomes really chatty when there are many people talking around him or if the tv is loud....like he is joining in on the conversation.  We know stuff is going on in his brain but until we can communicate with him somehow we are not sure how to tap into a majority of it.  Now that he is seeing a little we will be starting with sign language here shortly. Hopefully once he can use his arms better maybe he will be able to sign one day too.  

Update: all the above is still true but this year we have been working on getting him to take his hand and pound his chest when it is “his turn” for a toy or kiss or spoonful of something.  About three weeks ago he did it on his own when it was his turn for the ball to be rolled to him.  It was a glorious day for us.  He has done it a couple times since but it is still not regular yet.  Part of his preschool goals is to get him to learn the signs for More, Come here, and still work on My turn.  We have to limit the signs we teach him since he still cannot use his fingers and his arms still are not really coordinated.  

THERAPY: Noah aged out of Early Intervention yesterday and it was a very sad time for us.  We loved our EI therapists and are so sad to see them go.  Noah still goes to a clinic called Neuroworx twice a week.  One day he does swim therapy in the pool and the other day he does a machine called a Lokomat.  We call this his robot days.  When we are not doing the robot we have him doing balancing exercises on a vibration plate to stimulate his nerves and give him a lot of sensory input. We are currently looking into other PT options through our insurance now that we have to go private after EI.  

We unfortunately have not been able to come up with enough money to get back to a clinic called Now I Can.  I say that Neuroworx gives him the muscles and Now I Can teaches his brain how to use those muscles.  It is a great system if/when we can afford to rotate the two.  Hopefully in another couple years once Noah has gained some more strength we will be able to afford to go back to Now I Can.  

Still the same this year: “We still work with Noah daily but we no longer set aside specific amounts of time to use as "therapy" time anymore.  It got too hard on us after a full day of work.  We felt like all of our time spending with Noah as a family was doing therapy. We want him to see us as his parents not his therapists.  So now we incorporate his therapy techniques into daily life.  If we are watching tv we prop stand him or get him to sit using his arms and hands.  When we are in the bath we use tub toys for vision therapy getting him to look from one point to another.  When we are in the car we have him holding toys.  When we are getting him into his pjs or clothes we work on rolling or pushing himself up.  Our lives are so much happier doing it this way then forcing both him and us to set aside a certain amount of time daily just for therapy stuff.” 

WHEELCHAIR vs STROLLER:  I am not going to lie.  We do not use the wheelchair all that often, if ever.  To be honest it is heavy and big and a pain in the butt trying to maneuver curbs or steps.  Trying to run a bunch of errands on a weekend with a wheelchair is almost impossible for us right now.  Since Noah is still so small we still use our Baby Jogger City Select stroller with a toddler support pillow to keep him positioned appropriately.  I know that we have to make the big transition sooner rather than later.  We just haven't yet and that is okay. Sometimes you have to do what makes you feel comfortable.  The stroller fits our needs right now.  He still fits in it right now.  It holds all of his bags and pumps perfectly.  And it makes our lives easier right now.  So that is what we are using for the time being and I am totally okay with this.

Valco Baby Twin Stroller with Toddler Attachment seat

New Bug 2 by Ormesa

Update: Yep…wheelchair still just sits there in our house.  He still fits in the City Select and we just got a new SN stroller off of ebay for him that we are going to try out. It is the New Bug 2 by Ormesa. I got a really good deal on it but had to spend just as much buying an abduction block and five point harness since it was used and didn't come with those. Pretty dang cool chair though and we still prefer this over his wheelchair.  Not sure why we dont care for his wheelchair...just don't I guess.   Since the twins were born we have also started to use a Valco Baby twin stroller with a toddler seat attachment. Noah cannot sit in the toddler seat for more than 30 minutes but we have learned to tilt the toddler seat back and put one of the girls in that part and have Noah sit in the stroller seat so that we can push all three at the same time (we have nicknamed this stroller our suburban). Noah once again slides forward with is pelvis in this toddler seat so we have to use our Hugga Bebe pillow (no longer sold in the market) to keep him secured in tight.  You could use any type of pillow to do the same.

REFLUX:  This is an area Noah has totally regressed in.  He throws up almost daily if not every other day.  His doctors think it has to do with his reflux, his hiatal hernia that is too small to fix, and his sensory issues. He cries...he throws up.  He sits wrong after eating...he throws up.  He is not feeling good…he throws up.  He gets lifted too fast from the floor…he throws up.  No matter what we feed him, how we feed him, or when we feed him he throws up.  Its bad…really bad and I hate it.  We have seen all kinds of doctors about it and they have all come to the conclusion to just wait until his core gets stronger and hopefully getting older will help.  We keep hospital puke buckets in every room, car, and even a small one for his stroller.  Its sad really…and messy and embarrassing. 

Rx:  Noah is currently still taking Zantac twice a day (noon and night) at 2.7ml.   He also is on a compound version of Prilosec once a day at a dose of 1 ml/15 mg. For GI Motility he is taking Erythromiacin 1-2x daily in addition to 1.5 capfuls of miralax daily.  

NOAHS EATING:

Orally: Noah will accept anything into his mouth but he just will not or can’t swallow it.  He loves bold flavors like fajitas and green chilis or sour cream.  He loves the cold texture of jello and his favorite food is still re-fried beans…but he just wont swallow any of it.  He has learned to swallow small drops of water from a syringe but still cannot drink from a bottle, cup, straw, or sippy.  He chews on chewy tubes and toys all the time and yes he still has a binkie as it is literally the only object he will wrap his lips around so we keep it so that he can practice lip formation, closure, and suction.  Also…he just really calms down with it and we use it during therapy so that he will focus.  We are past the point of caring what people think when they still see him with a binkie.  Even his speech therapist has told us it benefits him more than it is hurting him. His dentist of course wants him off it now.  There is a whole “binkie debate” in the SN community.  Its actually kind of funny. 

City Select Stroller

G-Tube: Noah is still fed 100% via feeding tube (g tube) into his stomach.  We have had to change up his feeding regiment more times than I can count.  We have met with many dieticians and tried everything to see if it would help with his lack of weight gain and his throwing up.  Nothing worked.  Well, that was until recently when I threw in the towel and had a melt down and decided I was too exhausted taking care of newborn twins and making Noah these really expensive ultra healthy meals to have him throw them all up within an hour and have to scrub carpets or chairs daily.  In the midst of a really bad day I posted on facebook asking all of my family and friends who have “typical” toddlers what they ate and drank, how much, how often, and if they actually ate all of what was given to them.  I then reached out to many coworkers asking the same question.  I received comments or meal plans from over 40 of my friends, family members and co workers and realized that NONE…NOT ONE of them were feeding their toddlers expensive ultra healthy meals every single day for every single meal.  So I switched things up and my sanity has been saved.  

From that day forward I changed everything I was doing for Noah meal wise.  No, it did not help his throwing up but nothing ever did.  He doesn’t throw up any more than before but he has put on weight and kept it on and that is a win for us.  No GJ tube for Noah now which I keep thinking would have been a nightmare for our family right now.   

Plain and simple Noah gets breakfast, snack, lunch, snack, and dinner.  If he does not keep in all of his meals during the day he gets a water drip at night through his feeding pump.  Each main meal is 6-8 ounces total and his snacks are 4 ounces total.  For breakfast he gets eggs and bacon and toast or the like on weekends when we have time to cook and oatmeal or cereal during the work week.  Always with half a banana or other fruit and always with some rice milk since we still are off Dairy Milk.  His lunch is always some type of sandwich with some carrots or cucumber or avocado or salad.  His snacks are always some type of applesauce or pears or peaches mixed with flax seed or hemp hearts or some other kind of grain or protein.  I have even done string cheese or cottage cheese with peaches or even goldfish crackers and apples.  Typical toddler snacks.  Dinner is always whatever we ate for dinner.  I'll throw in a half of a multivitamin in his breakfast, half a vitamin D which he needs in his lunch, and some probiotics in his dinner.  

I no longer calorie count but I do try to keep main meals around 300 calories each.  I no longer take hours making blended meals.  I actually no longer use a vitamix blender.  I now just use a nutribullet and blend each meal up as I make them for the day.  He actually eats breakfast during breakfast time and so on and so forth.  Who knew it could be that simple.  No more freezing or searching for high calorie additives.  No more crazy concoctions.  Just typical food a typical toddler would eat but blended. 

Calories:  ~1200-1600 daily depending on how he is feeling or if we had a big therapy day

Free water: 1 oz flush after each feed and 2 oz bolus an hour before each feed

Since switching up his meals I have also stopped using the pump during the weekends as well and bolus feed him with an o-ring syringe.  I have found the Mic-Key extensions that are not angled and do not have a med port work best since the tubing is wider than the AMT extensions and syringe port actually secures around the O-Ring syringe.  The O-Rings work better since the tips are narrower and fit better in the port.  Also, they slide easier than cath tip plunger syringes I get through insurance.  We still use his pump during the week at daycare and at night if he needs more water.  It sure has been wonderful not having to lug that pump around with us all the time and the beepers and buzzers are not missed at all.  

This past year has been crazy busy for us (hence the lack of blog posts).  Helping Noah reach all these new milestones has been no easy task so we spent all of our time helping him before the twins arrived.  Being pregnant with twins also didn't help with my energy levels either.  Now that the girls are a few months old and sleeping a little bit more.  Now that Noah has acclimated to his new sisters and has found some ways to entertain himself and become more independent.  We hope to see many more accomplishments from our big boy and I can't wait to share them with all of you.  Hopefully you wont have to wait for his fourth birthday :)