Special Needs Spotlight - Madi

Let me just start by saying that I love kids with Spina Bifida.  You know how some people have a special place in their hearts for Downs Syndrome kids or kids with Autism?  I love the ones with Spina Bifida.  When I was in college I taught swimming lessons and there was this little girl in my class who had Spina Bifida.  She was so cute and so expressive and so loving.  After one session, her mom decided she'd do better with one-on-one private swim lessons...but they had to be with me!  She went from screaming to let go of her mom and get in the pool, to being excited to see me, floating independently on her back, and even putting her face in the water before we were done!!  Man!  She was the cutest thing ever!!


Anyway, reading about Madi and telling you about Tanner, just really reminded me of my swim lesson angel, because the pictures and stories about Madi and Tanner sound just like her!!


Madi also has Spina Bifida, and it was also discovered before she was born, at about 22 weeks).  Coincidentally, she also has a brother named Connor!!!  But Madi's brother is older.  Sometimes I think that it would have been easier to find out Sadie was going to have special needs before she was born, but after reading Madi's mom, Jamie's, story, I'm not sure that's the case.  I think you grieve for what you lost no matter when you find out.

Jamie said she cried a lot in the beginning when she found out about the Spina Bifida, but that looking back, she feels that she wasted so many tears.  She is so blessed by her child and believes that she was made perfectly the way God wanted her to be made.  She says that everyday Madi brings her more joy than she could ever imagine, which is how all parents should feel about their children!


Jamie has a blog called A Worthy Journey, and I went and read her birth story with Madi.  What a roller coaster!!  She was sort of induced and then sent home for another week before coming back and being induced again.  It is common for children with Spina Bifida to also have Hydrocephalus, which causes their brains to swell and their heads to be large.  This, as you can imagine, raises the C-Section rate in kids with Spina Bifida.  However, Jamie was determined to have Madi naturally, so she was induced early and was successful in giving birth to her little angel.


Madi has a shunt to treat her hydrocephalus.  Hydrocephalus is essentially "water on the brain", meaning that her cerebral spinal fluid does not cycle and get absorbed on it's own, and therefore, collects in her brain/ventricles.  The shunt takes this fluid from her brain/ventricles and drains it through a tube in her tummy.  This type of shunt is called a VP shunt, standing for Ventriculoperitoneal shunting.  Shunts were invented in the 1950's by a man who's son was born with spina bifida and hydrocephalus.  He saw the value in designing an internal shunt and worked with his son's doctor to creat one.  Before then, most people with hydrocephalus died.  Now, those with hydrocephalus can live a normal life and have a normal lifespan, as long as they have a shunt.


Despite Madi being unable to walk or stand without assistance, her family does not consider themselves unfortunate.  They have adjusted their version of normal and consider themselves blessed.  Madi sees several doctors on a regular basis, but that doesn't interrupt their schedule too much.  She is also catherized 4 times a day to keep her from having to wear diapers.  She is still able to play and have fun with her brother and her friends.  And soon Madi will have a sister too, her family is in the process of adopting another little girl with spina bifida from India.

No matter what kind of special needs a child may have, most of their parents say the same thing; please don't feel sorry for them or ask them how they manage with such a difficult life.  The thing is, every child is challenging in their own way.  I think Madi's family is a great example of rising to the challenge of Madi's special needs, they are so comfortable they are willing to accept another child with the same needs.  What an amazing show of love.


I hope that everybody reading this can learn something from Madi and her family, and I encourage you to follow their journey by reading their blog!

A Very Merry Un-Birthday!

Today is Sadie's half-birthday.  She is officially 2 and a half years old today.  So, I wanted to celebrate this day/commemorate this day by documenting all the things she CAN do that we were told she never would when she was born...

When Sadie was born, she didn't do anything.  Her eyes were closed, she was kept alive by machines, she had constant seizures that they couldn't control, and there was no gag reflex or swallowing present at all.  The only reaction we could get out of her in the NICU was to tickle the bottoms of her feet, and she would twitch, and we'd get so excited about it!  Now, she can breathe and swallow and open her eyes.  She is awake and alert and even interactive!  She smiles and vocalizes her wants and needs (like "get me off my tummy!" or "I'm done sitting on my knees like this!")

Sadie nursed for 14 months before she started aspirating and lost interest.  Sure, she has a G-tube, but she can eat pureed food.  And lately, we haven't been thickening her food as much and she's doing really well with it!  In a couple of weeks we're going to start with small amounts of liquid through the syringe in her mouth...thickened of course!  And we're also going to start working on soft pastas and rice to get her to start learning to chew.

Sadie sleeps in a big girl bed all night.  If she wakes up, it's because something hurts or she's hungry.  She rarely has a bad night anymore and usually sleeps for 10-13 hours!  When she was littler, we were up for 2 hours in the middle of the night, almost every night.  I watched a lot of movies back then.  We had frequent nights where one of us would have to sleep in Sadie's bed with her, or be in her room rocking her until she fell asleep.  Those were hard times.

We are currently working on big goals like sitting, which I think she will eventually do.  Grabbing toys with her hands and putting things in her mouth is another goal and she's so close to doing this...the hand splints are helping with this a lot.  And communicating yes and no so that we can start potty training!

Sadie knows the people who are regularly in her life.  Obviously she knows her mom and dad.  She will often be distracted when I walk across the room, because she can see me.  When Daddy has been gone out of town, she knows when he comes home and gets excited as soon as she can hear his voice, and if he doesn't come say hi to her and give her a kiss like, immediately, she will protest!  She knows her therapists that come work with her each week, as well as Chelsea, who does respite care for us.  And of course, she knows Grandpa.  I think Sadie has a special bond with Grandpa.

Going out with Sadie used to be something we would avoid at all costs if we could.  She would scream in the car the entire way, then we'd have a really hard time calming her down when we got there.  Sometimes we would bring the bouncy chair to restaurants with us, to weddings with us, to other people's houses definitely.  We even resorted to drugs when we had to drive to California...or sometimes just in public places.  Now, Sadie enjoys the car and doesn't scream at all.  We can take her to restaurants and she can sit and be happy the entire time we're eating.  We can take her shopping and not have to worry about meltdowns.  And I love that I can take her to other people's houses to visit or play or swim and actually enjoy myself instead of being stressed out the whole time.

Sadie is now 2 and a half years old.  Officially.  She is a big girl.  She is a happy girl.  And I'm so glad that she's my girl!

Mommy & Me Monday #6 - the backyard pool

A few months ago I made a ball pit.  I bought an inflatable pool to put all the balls in.  My goal was that I'd be able to slide it under Sadie's therapy table when we weren't using it and it'd be out of the way.  However, the pool that I bought was too big to do that.

So, I bought a smaller one.

And then Chelsea and I dragged this one outside and filled it with water.  It's deep enough that Sadie can wear her little neck ring and still float around and be awesome.  I am SO EXCITED to use this like EVERYDAY this summer!!

At first I was all like, "whoa, Sadie's having so much fun and I can sit here and watch her!"

Then I was all, "F-that!  It's 100-and-something degrees out here and I'm pregnant!!"

But then Sadie got cold so Daddy had to come rescue her while I sat and enjoyed myself...if only I could have topped it off with a fruity alcoholic drink in my hand!!

Hosted by Krystyn at Really, Are You Serious?

The Real Mighty Moms

When you're part of the special needs community, there are a lot of positive benefits; people to support you, those of whom you can ask advice, many who have already been where you are or have what you need, etc.  However, there's also a down side.  My child doesn't have a fatal disease.  She is not medically fragile, and doesn't require multiple stays in the hospital.  But many other children do.

Earlier this week I posted Broxton's eulogy for my Special Needs Spotlight.  You might remember a couple of months ago my post about his funeral.  And a few months before that I wrote that I was a little jealous of Kristi (Broxton's mom) because she wouldn't be spending a lifetime worrying about IEPs and wheelchair accessibility.

I take it all back.

I said those things out of ignorance.  Now that I've witnessed the actual event of slowly losing your child and having a funeral for your baby, I would gladly have a lifetime of wheelchairs and IEPs vs. hospice and a funeral.  And I think Kristi would agree with me.

Now we are all watching in horror as another of our Mighty Moms loses her child slowly to Mitochondrial Disease.  And there is a second family also on hospice, who is thankfully not declining as quickly.  How do you encourage a family who is going through this?  What do you say?  How do you even mutter words about how big God is or how He holds their little ones when they have a hard time believing in any kind of God who could let something like this happen?  ...to a child.

To THEIR child.

It's all so heartbreaking and sad.

But that's not all.  I have two other friends whose children are in the mental health ward at the children's hospital.  6-year-olds who are under close watch because their mental health is a risk to themselves and others around them.  6-year-olds who are taking lithium because they are hearing voices in their heads.  And I don't know which is more sad; knowing your 6-year-old is so mentally ill she has to be hospitalized, or being visited regularly by a hospice nurse because your child is slowly deteriorating before your eyes.

It makes all my complaining about getting bigger and being hot seem like nonsense doesn't it?  I remember near the end of Broxton's life I would wait anxiously for a Facebook post from Kristi giving an update.  Meanwhile there'd be posts from people about having a tough day at work or their child who got in a fight at school, and I'd want to scream, "DON'T YOU KNOW THAT A LITTLE BOY IS DYING?!!!"  It was hard for me to even be happy for the people posting about good things going on their lives...because everything seemed so sad at that moment.

Do you ever get used to attending a funeral for a child?  Does it ever feel normal to go about your daily business cooking dinner and mopping floors when your friends' children are dying?  Do you ever stop thinking about it when you know there is a 6-year-old in the psych ward at the hospital?  My life will certainly never be the same because I had Sadie, and it only makes that statement more powerful because she has special needs.  But, surely, it will also be forever changed because I know these Moms who are truly more Mighty than I could ever imagine being.

God Bless all of you who fight daily battles for your children.  You are my true heroes.

Traveling with Blenderized Food

All my sealed food (so far) ready for a trip to Texas!!

So, if you've ever thought that maybe I'm a genius, you suspicions just might be confirmed through this post!  (I'm humble, I know...)

We're traveling to Texas at the end of this month and ever since our vacation was scheduled, we've been talking about how to handle food for Sadie while we're not at home.  She can only eat purees and still gets at least 1 tube feeding a day.  We did consider bringing along the blender, since we'll be in a condo and have a full kitchen.  But then we sort of agreed that we'd just buy the packaged baby food when we get there...Sadie can eat it, but it can also be watered down and put through her tube if necessary.  The thing is, that packaged food is EXPENSIVE!!  Sadie' probably can eat 2 packets at a time, at $1.29 each, 5 times a day?!!!

No thank you.

I'm not very good at math, but I can figure out that it'd be cheaper to bring our own food...so how do we do that?  I got my little Mommy-brain wheels turning and I was thinking that I need a way to package our homemade food the way the store packages their food so that it's preserved and we can take it out with us in the diaper bag all day, etc.

And then it hit me!  Food Saver machine!

We don't have one of these, but my neighbor does, so I started asking her questions.  She told me sure it'll keep in the fridge for 5 or 6 days, and it'll be fine for a few hours in the diaper bag!  Excellent.  So, we borrowed hers (although, after this, now I want my own!!)  If after this, you think this might be a good investment, I priced them at Target around $75 and the bags are about $20 for like a million of them.  Actually, not a million, but it's basically a big roll (the one I bought is 20ft long) and you can cut the bags to whatever size you need.

Here's what a Food Saver looks like.  It's small and easy to store.

These are the bags I bought.  I think they were like $17.99 or something at Target.

So, the plan is to freeze my purees (or tube food) in ice cube trays like I usually do.  Then, I can vacuum seal the cubes in single-Sadie-serving sizes (5-7 ounces), and throw them back into the freezer.  Then what we'll do is put all the vacuum sealed frozen baggies in our suitcase, and check them on the plane that way.  When we get there they'll probably be partially thawed, but that won't matter.  We have a fridge and they'll be eaten within a week anyway, so we'll just make sure we get them in the fridge as soon as we arrive.  Then each morning as we're packing up to go out for the day, I'll throw however many we need in Sadie's insulated lunch bags with ice packs (which I can also make with the food saver!) and we'll be good for the day!!

This is all the food I made ahead of time and froze into ice cube trays.

Then I cut the Food Saver bag to the size I wanted

I sealed one end of the bag prior to filling it...this takes about 15 seconds.

I put the desired amount of cubes into the bag and then hit the vacuum and seal button.  It sucks all the air out and seals it for me. 

 This obviously takes some planning ahead.  And we may not actually bring the entire amount that we'll need for our trip, but so far I have 21 meals vacuum sealed and ready to go!  I also did a little experiment.  I left one of the vacuum sealed packets out on the counter for 4-6 hours to see what would happen.  After all, it's going to be in my suitcase for that long, right?  There ended up being a little air, because when the food defrosted and changed shape, there was extra room in the bag.  So, then I put it in the fridge for 2 days after leaving it out on the counter.  And when I opened it and gave it to Sadie it smelled fine and she seemed to like it!  ...and I used yogurt, so you know if yogurt can handle that, anything can!!

I also called TSA (THAT was an adventure in and of itself) because I was worried that I was going to go through all this work and then have them open my suitcase and throw it all out anyway...and then we'd be back where we started, buying expensive packaged food!  The lady on the phone wasn't immensely helpful, but she did tell me that I could put a cooler in my suitcase and that I might want to do that to try to keep them as cool/frozen as possible while traveling.  She also told me that certain foods will trigger security, even in checked bags, and if that happens they'll have to open my suitcase.  I asked her if that happens if they'll throw out the food in question...of course she didn't know.  Why would I think that TSA could be helpful???

So, there you have it...my genius idea.  I will be back to let you know if it works, and how it goes.  Has anybody else done something similar when traveling?  Or have you done something different that worked?  I'd love to hear about your adventures with tube food!!

Special Needs Spotlight - Derick

I'm part of another special needs mommy group that is more just mommies on the east side of Phoenix.  For those of you who aren't familiar with Phoenix, it can take a couple of hours to drive from one side of the city to the other, so coordinating with families who live in your general area (even though that might still be 20-30 minutes away) is important.  A few months ago, this group had a family outing at a local park and that's where I first met Derick.

Derick has a very rare condition called Cockayne Syndrome.  Cockayne Syndrome (CS) is a rare genetic disorder characterized by poor growth, microcephaly, progeria (premature aging), sensitivity to sunlight, moderate to profound developmental and neurological delays, and a shortened lifespan.  You can read more about it at this website.  His family didn't get this diagnosis until Derick was 5.  As you can imagine, up until then, it was a struggle with the doctors to figure out what was wrong.  When Derick was 14 months old, they catagorized him as failure to thrive because of how small he was.  Eventually, after a long journey, the neurologist told Derick's family it was Cockayne Syndrome, but that this was so rare, he didn't even know anything about it, so good luck.  It's so rare that Derick is the only living child in Arizona diagnosed with this condition.

Derick is small for his age, and has a younger brother who is twice his size!  But Derick just might be the sweetest 8 year old boy I've ever met.  He can crawl, and he definitely made the rounds on that day in the park.  He came right over to Sadie, who was laying on the blanket, and gave her a big kiss on the mouth.  It was the sweetest thing ever!  We tried to get him to do it again so we could get a picture, but apparently he was ready to move on to the next person.  Next he came to see me.  He sat down in my lap for a minute to check me out.  Then he turned around, gave me a hug and crawled away to hug Brian next.  Oh my goodness, I wanted to just squeeze and squeeze him he was so sweet!!

Derick's parents are pretty cool too.  Like most parents, they loved talking about their children.  They told us how they have an above ground pool that Derick likes to play in and do therapy in.  But since he's so sensitive to temperatures, they've rigged it so that it's a balmy 88 degrees or warmer!  Derick's dad seemed like he was really good at coming up with ways to accommodate Derick's needs so he could play outside and enjoy himself doing different things.

Derick's parents are also very active in the Cockayne Syndrome national parent group.  Every year they travel across the country to attend their conference for a week with other families and children with Cockayne Syndrome.  How cool is that?!  

Derick attends school, but does have to stay inside a lot because of his sensitivity to UV.  However, his family has a number of pieces of clothing that protect him so that he can be outside.  Derick wears hearing aids and AFOs and can use a walker.  He loves to play with his peers at school and his younger brother at home.  He also enjoys visits from his PT (we are lucky enough that he shares Denise with us!), his OT and his speech therapist.  He is very social and loves to be out and about to people watch and visit.

I can't wait to have another playdate/family outing with Derick.  He is a really nice kid and is such a lover.  His family is really blessed to have such a loving child.

Bump Watch - 23 Weeks

This week I've actually had some enjoyable moments being pregnant.  This little one is definitely a morning person.  I lay in bed in the morning and just feel him all over the place enjoying the room he has in there, doing aerobics or whatever little babies do!  It definitely cancels out all the annoying stuff when you realize there is a little human being growing inside your body!

How far along?  23 weeks...when do I get to the third trimester again?

Weight Gain?  I can't believe how many calories I'm eating everyday.  I enjoy eating whatever I want, but I'm not used to this kind of reckless abandon!  I keep saying I have the rest of my life to get rid of it... I hope that isn't too hard!  I'm up over 30 pounds now...eeeeeeeek!

What's up with my Body?  I don't really have any big complaints.  I mean, it's hot outside, okay.  I'm getting bigger so it's getting harder to carry Sadie, or sleep in comfortable positions, or bend over to pick something up off the floor.  But honestly, when it comes down to it, I feel pretty good.  Except for the minor heartburn (which I can pretty much control with the papaya enzymes), I'm not that bad!  No being sick, just being tired.  

Sleeping: Still sleeping well.  I'm tired though, really tired.  I get up around 8:00 in the morning, and by 9:00 at night, it's like I can't keep my eyes open...and that's with an hour nap in the afternoon!!!

Movement? This kid is all over the place!  We can definitely feel movement on the outside now and Brian enjoys putting his hands on my tummy and feeling our little acrobat.

Gender? It's a boy!  You can read about our ultrasound appointment and see pictures if you go to this post here.

Names? We are stuck.  I thought I liked a certain name, and now I'm not so sure...he just doesn't seem like that name fits him.  Brian keeps calling him Yuri and Vladamir and Seamus.  He can't be serious when we have the conversation about names.  His middle name will be Walter (that was Brian's dad's name)...but we are stuck on the first name.  I'v been posting ideas and name polls on Facebook, which have actually been somewhat helpful in narrowing things down since I'm not up on pop culture (like Twilight and such) and don't always know what the trends are socially!

Best moment of the week: I was at the grocery store and there was a lady on one of those handicapped motorized wheelchair carts.  She was trying to get a head of cabbage and somehow she managed to drop it before she could get it in the bag.  It rolled down between her legs just under her seat.  I heard her mutter a bad word and then she looks at me and goes, "miss, could you help me by getting that for me?"  I went over there and she's talking about how she just can't bend over that far blah blah blah she's old and wearing out.  Then she looks at me and laughs and goes, "...and you're pregnant!"  I told her it was okay, I could still get down there to get it...but in a couple of months I might not be able to!!  We laughed.  She was funny.

What I'm looking forward to: We're going on vacation in a couple of weeks and I'm really excited to get away.  I did some research and found a special needs theme park in San Antonio called Morgan's Wonderland.  I'm so excited to take Sadie there!

How baby's growing: My baby can hear now, especially loud noises, he is getting used to them.  His lungs are also developing and he's getting ready to breathe outside the womb!  He can also feel movement when I walk or dance.  He should be just about a pound now and over 11 inches long.