Wednesday, March 31, 2010

Taking Care of You

This is going to be a little different than my previous posts about taking care of you.

I'm going to title this post..

Go on and Cry.... (makes me think of the song)

When Toby was in the NICU a lady whose son went to my college came to visit me one afternoon. This was about the third week of our stay and I was just ready for the whole ordeal to be over. Her son had Spina Bifida and she came to just sit and talk and answer any questions that I might have. Well, I am sure I overwhelmed her with my ridiculous amount of questions. and you know I can barely remember some of her answers. But one thing she said to me has stuck out almost 4 years later. You know the kind of thing that sticks so bad that you can even hear the inflection in the person's voice when you think it over in your head.

In a somewhat sad and tired voice. She said, "Kari, You're gonna cry" but with a smile on her face she said, "and it's okay." I thought at the time this was unusual. But she said it quite a few times and therefore it seemed very significant to her. I thought I had cry all my tears out. My son was here and how could I cry anymore. I knew there would be hard times, hard surgeries and things of that nature in which I might cry, but now was not the time.

What I didnt realize was how true those words were. There will be days when there will be no reason, no significant thing that happened, but you will cry. There will be days when a thought will knock the breath right out of you and you will cry. I child will run past you with his little legs and you just might cry. Sometimes I feel guilty for crying. I have my son. There are so many families out there fighting such scary things. Three families I know of that just recently lost their children to cancer. There are families who have multiple miscarriages or children in the NICU fighting for the very next breath. I have my son. But needless to say, You most likely will cry. There will be sadness.

But then comes the next part, "And it's Okay."

I'm so gald she added those three little words on the end. It is okay. And that is why I wanted this post to go under the taking care of you. It's not a makeup tip, or hair tip or diet tip. But how true is it that crying and taking that time to mourn and heal is really taking care of yourself. It's okay to cry. It doesn't mean you love your child any less or that you feel like you have it worse off than another family. It's just crying and it's going to happen and.....It's Okay.

You get up, dry your eyes, pray for strength and you keep going. And you know the funny part? That day when you felt like your heart was breaking is so easily forgotten with the next smile from your child.

Monday, March 29, 2010

clubbed feet???

I've been late on a few of my posts so I thought maybe this time I could be a little early :)
I wanted to talk about clubbed feet- this is something that we are currently in the process of correcting for Carson, and it has been a little overwhelming not knowing much about it--- I've had to learn as I go. So, I'd like to share my new experience in hope to help. Clubbed feet is the improper rotation of the ankle. It makes the feet curve improperly. It really is a very common occurrence and is more common when a birth defect like Spina Bifida is present. Please note that clubbed feet is not cleft feet (which is split-feet). VERY DIFFERENT!!! I made this mistake when we first received the diagnosis in utero that Carson's feet were clubbed. I thought the dr. said cleft. NO NO NO. I suppose cleft is possible but it is not common.
Clubbed feet are most commonly corrected today by using the Ponseti method. It is subtle manipulation of the foot using casts and bracing. The earlier you begin the correction the better (as I have learned the hard way). Let me add here that you may have to get pushy. :) We were constantly put off on getting started, and I was also told it was no big deal. The reason, I just found out, was they wrote Carson off as it being "necessary" they so rudely and ignorantly determined he probably wont walk so why hurry, or really even bother. We were also told that we should just wait and have the corrective surgery performed around the 9-12 months mark. This was another recommendation based upon him not walking. I googled ( a blessing and a curse) the surgery and found that the surgery is often ineffective and most times more debilitating.
Ok, so getting started is easy--- x-rays, pictures, and then casts. Typically it requires 5-10 casts, changed weekly to correct the foot. After the casting, braces are used full- time for 3-4 months, and then just nightly for 2-3 years. Each case is a little different depending upon the individual's foot.
Today, Carson received his first cast. It bothers me far more than it bothers him. It is awkward. He doesn't fit quite right in the carseat, in the bumbo, on my lap, in my arms, in his clothes. I have resorted to "let's wear onesies" and "let's go back to changing your diaper on your tummy" again. Like everything else though, I'm sure that after a few days we won't even notice, and it will be normal. Weird!! will happen when the casts come off, and Carson has miraculously lost some weight. :) LOL!! such is our journey.

Preparing for clinic

A great topic was presented on March 18: "Clinic day must haves" and I wanted to follow up with an example of something we take to clinic every time. When Esther-Faith was first born, we went to clinic every three months. Then it became every four. And now, every six months.

But no matter what, we take a couple of summaries with us every time. Some of the things we include are specific to Esther-Faith's diagnosis, but we take them to keep us on track and to give a quick update to some doctors that she ONLY sees at clinic.

The information we take has changed over time. For example, to the clinic this month, we took a summary for urology and a general summary for her chart. Sometimes we have more info and questions for the physiatrist and the physical therapist. Or for the orthotics specialists. But we find that we ALWAYS refer to the summaries when we get overwhelmed or need to remember what questions we wanted to ask. Because we prepared them ahead of time.

Not that we've never been blind-sided. Cause we have been. By hip x-rays, and an extra CT, and some other stuff. We've met new doctors, and we've raised our voices. But in the end, we find the summaries to be very helpful. And it is great to go over the past updates to see how far Esther-Faith has come.

Some examples:

  • We included info about her KAFO's, walker, wheelchair, and use of all three.
  • We included some social information (that she played soccer in the fall).
  • We included information about what ground we thought she lost while hospitalized in January and February.
  • We also included some information important to us and to her. That she likes dogs. That she makes up songs. That she was the flower girl in a wedding. We think it is important that the doctors see her as a child first and by her diagnoses second.
  • We include her cathing schedule.
  • What she does to "help" with the cathing.
  • Any problems we've had (UTIs, bladder washes, etc...)
  • We include a section called "challenges" where we details some of the issues we've had. Esther-Faith is learning to cath herself, and this is where we talk about that progress (or this time, setbacks because of the ruptured appendix).
  • We include two sections called "fluid intake/food" and "output" where we detail what she typically eats and when and what she voids. We don't take detailed records anymore, but we do pay attention to how much we get when she gets cathed. This helps the urologist determine what, if any, tests are necessary. This is where we also detail any questions or issues we're having with her bowel management program.
We find that these reports really keep us on track with the doctors during clinic. Ultimately, we are the expert on our child and we want to be seen as such with the doctors.

I'm more than happy to send one of our actual reports if you are interested. Just email me at

(from the HennHouse)

Tuesday, March 23, 2010


Hi there!

I frequently see this question, "What do I get at my shower now?" or "What will I need for my baby now that I found out about spina bifida?" I remember pondering these very things while I was pregnant. I remember being just so worried and so overwhelmed while I was waiting for Carson to arrive. Well... he's here and through these last 4 months I have learned that I had no reason to over- worry about all the preparations. Honestly... There is not a difference. :) You are going to need all the same things that you would if your baby was born without spina bifida. Crib, stroller, swing, carseat, clothes, BURP RAGS (bold because I don't believe you can have too many), baby Bjorn, BOPPY!!!, Bumbo seat, toys, bottles, PACIFIERS, etc. Everything baby! You may be using things a little differently at first but you will be so grateful that you didn't go out and make-over your registry.

If your baby has "not on back" restrictions, then they will get alot of tummy time. :) During a diaper change you have to put the diaper on backwards. LOL I remember when Carson was able to be changed "normal" my husband still tried to place the diaper upside down.
Let me also give you some tips from my experience.
*Clothes: Don't get snaps in the front for the beginning, and get loose fitting clothes.
*If your baby has clubbed feet you will want cloth shoes- they flex to fit the foot.
* Bath: Get a lounger not a tub.
* Boppy--- your new best friend!!I have 2- one at home, and the other in the car for wherever I go- church or a friend's house.
* Pacifier- I learned this at the hospital and love it! Use soothie pacifiers, and cut the tips off so that it is rectangular not round. This works wonders when they have to sleep on tummy or side.

It is very important to do all the usual and fun planning before your baby comes--- do not, I repeat do not skimp on any of the experiences of having a baby.

Best said!!

Be sure to check out what a wonderful post!!

Monday, March 22, 2010

Taking Care of You

I think its important to look nice, for ourselves, our husbands and our children. We send a message to everyone we come in contact with when we look like we are taking care of. Unfortuantly you are treated differently too. I purposeful dress nice and try and look as professional as possible when I take Toby to SB Clinic appointments. I want to be taken seriously and want to be listened to but I know (just like all you know) that you have to earn the respect of these doctors.

So just wanted to share a couple of my tried but true little beauty secrets. These are not original of me. They come from all sorts of places, "Real Simple Magazine" 101 Best Kept Beauty Secrets and of course the internet!!!

So dig through your drawers for something without a stain and try this out:

Have a nice pink blemish on your face?? Lovely right? Makes you seem as grown up as about a 16 year old? Try this: Take some eye redness reliever drops put a few drops on a cotton ball and hold in to the blemish for about 15 seconds. The same medication in the drops that takes out red in eyes will help diminish the pink. Pretty awesome right?

An incredibly long night? Up late with feedings or laundry? Go buy some super cheap wet and wild white eyeliner. Put just a small amount on the inside corners of your eyes and blend. INSTANT wakeup. (a cup of coffee might help too)

So that's it for now! I hope you are inspired.

By way of introduction

I've thought all weekend about how I want this post to go... Reveal a lot? Reveal a little? Give a teaser? Spill my soul?

And I've not really landed on an approach...

My name is Karin, and I'm a new writer here at Spina Bifida Kids. Because I have a four-year-old daughter who is living with Spina Bifida. But there is so much more to my story...

We never intended to have birth children. We never even tried. In fact, we are in that 0.01% that you can read about in any birth control warning label. We intended to build our family through adoption. Specifically adoption through the foster care system. We both felt a "calling" if you will, toward adoption before we even met each other.

We finalized our first adoption in February of 2005. In March, our sons, Isaiah, age 8 (13 now) and Isaac, age 4 (9 now), started praying for a sister. Three times a day they prayed that they could have a sister. It was sweet. My Tim and I would peek at each other and sort of giggle each time. We knew that we would be adopting more BOYS, but their heart for a sister really started to work on us and we started to consider adopting a sibling group that included a girl.

By Mother's Day that year, I was pregnant.

Aside from being in complete shock and denial for the first six months of the pregnancy, it seemed to go well. I wasn't nauseous, but I could only keep down oranges and mashed potatoes. The boys were SURE it was a girl. Tim and I decided not to find out. We thought--this was one of the last great surprises in life.

I love surprises.

Three weeks before our child was born, we received the diagnosis of spina bifida and severe hydrocephalus.

I wasn't sure about surprises at that point...

And in January of 2006, just 11 months after our first adoption, Esther-Faith was born. Tim met her first, walked over to where they had me strapped down for the emergency c-section, and said, "We have a daughter. She's perfect."

In all my life I have had a few moments that sustain me when everything else seems to fall apart. That is one of those moments. He was overjoyed. And even though her spinal cord was outside of her body, she was perfect.

And so it is today.

No matter what we go through as a family, we choose to look beyond the diagnoses that each of our kids have received. Some of them are severe and require a HUGE amount of work. But we choose to see our kids through the lens of "perfect."


I'll be sharing many of our experiences with Esther-Faith here, but if you want to know how the others are doing, you can catch up with us over at the HennHouse.

Saturday, March 20, 2010


Oh Boy!!! Carson is napping.. so I here I go flying through a post!! In advance I am asking for your forgiveness regarding any errors in grammar, or spelling. I just wanted to talk some more about Carson's therapy program. I wanted to tell you that I have already seen some improvement- so when a dr. or a therapist looks at you and says, "it probably won't work"- laugh at them, a big huge belly laugh. You can also envision yourself spitting at them in the face ( I did this the other day, and it felt so good) lol!!! :)
I have been wiggling Carson's legs at various times throughout the day, as play. It has turned the diaper change from a screaming fit into a more manageable and sometimes smiling adventure. And, the best part last night we had a birthday party to attend which got us home past Carson's bedtime. Well, he was asleep in his carseat. I didn't want a meltdown ... so I said let's lay him down and I'll change him the old-fashioned (on his tummy) way, and maybe he'll stay asleep. He woke up. :) I'm so g;ad he did though.. he wiggled and wiggled and so did his legs!!!!!

It works!!! and God is so very good!!!!

Thursday, March 18, 2010

Featured Child: Autumn

Our little Autumn is an inspiration to our family. Before she was born we knew she had spina bifida, hydrocephalus, and ACII Malformation. We trusted God from day one that He would take care of our daughter and never questioned why this was happening to our baby girl. We felt blessed that it was "just" spina bifida and felt we could handle taking care of a child with special needs. After she was born, Autumn had her back closure and shunt surgery and was doing pretty well. About 2 days later though she would desat anytime she was fed by mouth and having episodes at night where she would completely stop breathing, turn blue, and the nurses would have to bag her until she would start breathing on her own again. We then realized her ACII was very severe which only happens in about 5% of babies with spina bifida. She was put on CPAP and then we did a decompression surgery to see if that would relieve some of the pressure on her ACII and stop the episodes. Well, it did not and we could not get her off the ventilator after the surgery. We then had to make the dreaded decison to give her a trach so that she could come home with us. We were ready to deal with a child who may or may not walk or who may have some bladder/bowels issues but taking care of a child with central apnea and who stops breathing at any time was a completely different story and one we were not prepared for. After 4 months in the hospital and living 6 hours away from home for over 5 months..we were finally able to bring Autumn home. We were concerned how it was going to be caring for a baby with a trach and who was on a ventilator 24/7 and also taking care of the needs of our other 2 children. We had been trained well though and we were ready to set out on this new calling God had placed in our hands. Autumn though has made this journey such a sweet one. She is truly an inspiration to us and always has a smile on her face (even through her tough therapy sessions). She is one determined little girl and finds a way to get what she wants and communicate her needs to us. She is such a joy to be around and touches every heart that she meets. As soon as you look into those big, blue eyes and she flashes her toothy smile you instantly do not feel sorry for her but know that she has been blessed with the strength,love,and joy that most of us spend our entire lives searching for. We are amazed at what she has taught us in her short 16 months of life and can only imagine what she's going to conquer in the years to come. We thank God everyday for our daily reminder by Autumn to choose to be happy in every situation we are given and to live life with a smile on our face. If she can do it daily, so can we! Thanks for letting me share my special girl with all of you.

Clinic Day MUST haves

Id like this to be a reader centered post.

Please comment on the items you absolutely MUST have for going to Clinic. Babies, Toddlers and even older kids. Ill add to the post from the commments!!

Here's a couple of mine to get your mind going

1. change for the vending machine!! (i know goes against my last post, but you do what you got to do sometimes)

2. a jacket or sweater that doesnt wrinkle (throw it in the bag and just take it out when its too cold in one of the rooms)

Okay ladies, so give me some more ideas.

Sunday, March 14, 2010

Taking Care of You

So i dont know about you, but I'm a stress eater. BIG TIME!!! And as you all know, sometimes the life of having a child with Spina Bifida can be stressful. (sidenote: not always, just sometimes.) And if you are a stress eater...well then things like this

Can look really stinkin good during a hospital stay. Or maybe something like this

after a long day at Clinic appointments.

Well, after a few hospital stays or maybe a bad Clinic Day you can have yourself into a heap of trouble.

This happened with me pretty quickly after having Toby. I ate. Good news, bad news it didnt really matter. I ate to celebrate or I ate to cope.

Then I realized when all my friends started giving me their "fat clothes" that it was time for a change. (Dont do this to your friends ladies) haha

So I did what any normal mom would do. I joined Weight Watchers. I quickly and pretty easily shed almost 20 lbs and have kept it off (I know, here I go with my commercials) I am a huge fan of weight watchers. I didnt go to the meetings. They were a little too huggy lovey dovey for me, but I did everything on line. 20LBS was a pretty big deal for me considering I was skinnier than I was in high school, but what I didnt realize was the even bigger deal was that I was healthier and learning how to eat healthier. While I was eating healthier, my family was eating along with me. To me weight watchers is so great for mom's who have kid with Spina Bifida because weight can be such an issue for our kids. When we are eating healthy are kids are eating healthy. It was such a huge learning experience for me. I felt like I was so much better equipped to take care of Toby and monitor his weight.
So that's my commercial for now. But really, even if you arent OVERWEIGHT. (I was still considred in the healthy range when I joined weight watchers) its an awesome program to really learn about nutrition.

So I'm going to leave you with my all time favorite Weight Watcher recipe. SUPER EASY

Taco Soup

1 lb ground beef or ground turkey

1 can diced tomatoes

1 can tomato sauce

1 empty tomato can filled with water

1 can black beans

1 can pinto beans

1 bag FROZEN corn (works much better than can)

1 package taco seasoning

1 package ranch powder seasoning (found near the salad dressings)

Ground beef or turkey then add taco seasoning. While that sits for a minute start opening up all those cans. Dump everything into a big pot including the corn and the seasoned meat. Then add your package of ranch powder. Stir and heat up all the way through. I usually let me sit 15 - 20 mintes to make sure the corn is good and everything seasoned well. That's it YOUR DONE!!

Serve with some Fat Free sour cream, tortilla chips and some light shredded cheese.

Hope you enjoy.

Thursday, March 11, 2010


Hey EVERYONE!! I just like to say, WOW!! 41 Followers now and weve just been getting started. Thanks to everyone for reading.

As a special thank you Id like to give away ANYTHING FROM MY STORE!!! Yes, you heard me right ABSOLUTELY ANYTHING THAT YOU SEE ON THE SITE.

So here's how you enter...

First head over to URBANUPCYLCING and pick on the product that you would like to win

Secondly leave a comment with what you picked out

I'll pick the winner by next Monday. So not a lot of days to get your comment in!!

Thanks so much for all that you do!! It is so encouraging to know there are so many moms going through this same journey!!

As a sidenote....Please make sure you add the button for the blog on your sidebar.

If google starts putting a limit on the blogs I can list I'll start cutting them down by who has a button and who doesnt. I think that's pretty fair? I am hoping they wont put a limit on it, but I know its getting pretty long.

thanks again everyone.

Tuesday, March 9, 2010

Short but sweet

The other day I was in Target shopping for the "oh- so necessary" planner to help me get better organized with Carson's appts. and sessions. I was kinda stressed because I was thinking about all the different things that are now in need of keeping ,oh so organized, and neat. I found, on clearance, nonetheless, :) a notepad with this quote- "Sometimes on the way to a dream, you get lost and find a better one." This quote was the perfect quote for me at the time, and I wanted to share it with each of you.

Monday, March 8, 2010

Taking Care of You

Id like to try something new here. Feel free to leave a comment and let me know what you think.

It hit me that it is EXTREMELY EASY for us moms to put ourselves on the back burners. Dont get me wrong, I believe that selflessness is a GOOD trait. However, not when it means that we are no longer taking care of ourselves. I believe that we teach our children mostly by example. Therefore, I believe that its incredibly important for us to continue taking care of ourselves. Do you see where I am going?

So, On Mondays I am going to attempt to post about taking care of ourselves as Moms. Taking those few minutes betweem therapy appointments, strapping on braces, cooking, cleaning, cathing, and all the other things that are in our lives to stop and take a deep breath.

So here's my very first one. Most of you have probably already heard variations of it, but I think its still worth it! : )


just use the amounts to your liking, you cant really go wrong.

Used Coffee Grinds


Ground up Oatmeal (just throw it in a blender)

Olive Oil (if you have dry skin)

Mix it all up and take out enough to put in your shower for a week, the rest should stay in your fridge. I'm telling you, my skin has NEVER been so soft. (grew up in Florida, Ive practically got alligator skin from too much time at the beach.)

So, I hope you like this idea. We will give it a try and I'll continue based on your response!

thanks again ladies, for all your support.


Saturday, March 6, 2010

Featured Child: Grey

September 24, 2008. This is the day that changed our lives forever, the day that we were told that we were having a son. I remember it all so clearly, as the ultrasound technician told us that it was a boy tears of joy streamed down my face. Only minutes later, those tears of joy turned into tears of hurt, sorrow, and fear.

The first few weeks after we were told that our son had spina bifida were quite possibly the worst of our lives. We were told that our son may never walk, that he would have bowel and bladder problems, and that he may have brain damage. We did as much research as we could, and slowly we came to realize that spina bifida was not a death sentence. People living with spina bifida lead very normal, fulfilling, happy lives. They have jobs, get married, have kids. I started to get in contact with adults living with spina bifida and with parents of children who have spina bifida. The conversations that I had with those "strangers" helped to calm my fears and ease my pain. As with most everything, time heals. The hurt and sorrow left us and in it's place were joy, excitement, and love.

Today, as Greyson approaches one, he is rolling, sitting, and army crawling all over. He is working so hard at standing and loves to be in his stander. He has a smile for anyone who glances his way and if your lucky, you can even get a kiss and a hug. He is the happiest little guy around. I can now look back on September 24, 2008 and smile. Smile because that is the first glimpse that I had of my son. The first time that I got to see his little face, hands, and feet (even if it was on an ultrasound screen). My life is no longer clouded with fear and sadness, but is filled with an overwhelming sense of love and peace. God has given my husband and I the most precious gift. He has given us our Greyson.

Wednesday, March 3, 2010

Ohhhh so sorry!!!

Hi!!! I am so so sorry. I did not get my post in yesterday. I have been sick :( I am feeling better, and do apologize. I do however, now have something which to write about. Maybe the Lord planned it out all along so that I could tell you about our first in-home therapy visit. It was wonderful, and I am so excited after just finishing up with that. After we received our assessment, I was discouraged. It seemed that EI (Early intervention) was going o be working on Carson's upper body and mental development, while ignoring his lower body and the concerns that we have there. I was wrong, YAY!!!!. No, I am not usually excited when I am wrong, but, I am this time. Abigail (our teacher) showed me some wonderful things that I can start doing to work on re-routing the nerves in Carson's legs. She believes that because Carson's body is still so busy at developing that now is the time to work work work on the legs. I'd like to share with you some of the ideas that were given to me.

The first idea she gave was to use an ice pack- Place the ice pack on his feet while doing the stretching exercises. This will help in developing sensation. Also be very vocal while doing each step. Teach with your actions and with your mouth. Constantly give verbal cues "I'm lifting your leg", "I'm rubbing your feet", "That ice feels cold on your feet". This will work with developing brain connections as well.

Carson does not have movement in his legs, and I have a tendency to leave his legs loose. I hold him at his bottom. She said to prop my arm underneath his bottom while I am carrying him over my shoulder (the burping position), causing his knees to bend. This stretches out the muscles. Abigail said to keep his knees bent as much as possible, and to keep his legs together rather than loosely sprawled.

I am going to take some pictures this week, and share with you soon some of the exercises that we are going to be working on. YAY!!!! We're getting started!!!!