Monday, August 30, 2010

First day of school

Practicing our transfer skills...

Checking out the classroom...

Signing in...

Reading around the blogs that are listed on the side of this one, I've noticed lots and lots of "firsts" the last couple of weeks. First day of PT, school, even steps.

What have you been up to? Any firsts to share?

Have a fabulous evening!
Karin (from the HennHouse)

Sunday, August 29, 2010

Happy Homecoming

We're home!

In fact, we've been home for about 2 weeks, and I couldn't be happier about it. Those 18 days in the hospital were way too long...and way too hard. I always felt like I was in the wrong place. If I was with Brooklyn, I missed the girls and felt so guilty. If I was with the girls, my heart ached to hold my baby. Thankfully, all 5 of us are under one roof now -- just like it should be.

I have to apologize to all of you for not posting the last few weeks. I really don't have a good excuse other than I've been tired and passing out on the couch every night.

I have had a lot to reflect on -- and there is a lot of raw emotion I am still sorting out -- but this week I thought I'd keep it simple and just share a video that I took the day we went to pick up Brooklyn from the hospital. We surprised our girls after they woke up from their naps and told them the news. As you will see, their reaction is pure joy.

I am so glad we took the time to record this moment. It only confirms that in the midst of life's challenges, family is all that matters. Even though they missed their Mommy and their little sister very much during the hospital stay, my little girls now understand what is really important and have taught me that as long as we are together, we are going to be just fine.

Lisa (@ Heaven Sent)

Wednesday, August 25, 2010

Role play with me dear....

Okay lets see...lets play a game..

Ill be the nice mommy..
<<"Hi sweet recetionist lady I need some answers to a few questions. Id be sooo thrilled if you could answer them or direct me to someone who could." didnt work.

Still be nice mommy but will call a few more people..
<<<"Hi nice lady. Ive been calling around to a few offices for some much needed medical supplies for my son. Could you by any chance help me?"


Waits a oouple of hours. Surely someone will check their voicemail and understand how important this is for my child.

Phone rings... Ruuuuun through the house. A friend on the other line.
Poor friend has to hear the story of your frustration with dr's offices. (sorry andrea) : )

Calls some more...
Leaves more voicemails..
First voicemail starts...
"I understand your busy...but...."
Second voicemail starts
"I need you to call as soon as possible please."
Third voicemail...Okay actually I get her paged at the hospital. STILL NOTHING.

By the end of today the last phone calls goes something like this.
"Hey. Listen. This is what he needs. This is when he needs it and I want it ordered now."

Does anyone else feel torn about being the nice lady that everyone likes at dr's offices and places or the lady whose a jerk but gets what she needs when she needs it?

There's got to be some kind of balance, but man am I having a hard time finding it!!!

I wanted to write about this especially in light of everything that is going on with poor Nicole and Annabelle. (check her blog if you are clueless to what im refering to) Its so hard to be your child's advocate. To be their voice. To keep a level head but also to kind of have a hard head.
We know what our children need. We know what we need. We sometimes just have to convince everyone else we know!!
You women are doing such a wonderful job. And a shout out to you Nicole!! You are doing great mama!! Keep it up!!



Illuminations Program
The Illuminations: Resources for Parenting a Child with Spina Bifida Program (Illuminations) is now available. It provides parents and caregivers of persons living with Spina Bifida tools and resources at critical points in development and transition. These educational and informational resources begin at birth and continue through the life cycle. If you are interested in finding out more information about these resources, please complete the form below and someone from SBA’s national office will contact you. MORE

Tuesday, August 24, 2010


The other day I was doing some reminiscing on a few fellow blogs. I went back to the beginnings, the times when their babies were just born. The time when questions were far more than answers, when prayers that have since been answered were being lifted up to Lord. Time and again as I read, I just cried, some sad tears, but mostly tears of sweet and perfect joy. It was amazing how much strength and how much joy it gave me to see the progress, to see the results, to see the answered prayers. I want to recommend that each of you take a moment this week to pick at least one blog and do the same.

We often get tunnel vision, and we often get so distracted by the now, that we forget God is still in control, and He is working. With each tomorrow brings a new day and a new vision of our future.

Monday, August 23, 2010

Latex allergy

I'm not sure how many of you deal with the latex allergy. When Esther-Faith was less than a day old, she was given the "latex precaution," but because her daddy is allergic to (it seems like) just about everything under the sun--including all nuts and their cross reactions--we were advised to treat it like an actual allergy.

So we did.

We researched the allergy and all of its cross reactions. EVERY time she is introduced into a new environment, we present the caretakers with a 10-page list of what she is allergic/cross-allergic to, what the reaction might look like (anaphylactic, hives, etc...), and what the caretaker should do should she have the allergic reaction (I'm happy to share this list... just send me an email).

After time, we realized that she DID actually have the latex (and cross reaction) allergy. She has never eaten a banana. She has never had melon. Or peanut butter. Or lots of other foods. Over time, we realized that cooking some foods changes the protein structure of those foods. So, while she can't have raw apples, she eats a BOATLOAD of applesauce.

Her preschool teacher--with Esther-Faith's help--created a laminated card that Esther-Faith carries with her to help her remember her allergies. But sometimes, Esther-Faith purposefully confuses what she is allergic to with what she actually does or doesn't want to eat...

For lunch on Saturday, the boys were having tomato sandwiches and cucumbers from the garden. Esther-Faith can't have fresh tomatoes...

Me: "Do you want broccoli or sliced cucumbers for lunch?"

Esther-Faith: "I can't have cucumbers."

Me: (getting the list off the refrigerator and handing it to her) "You can have cucumbers, they're not on the list."

Esther-Faith: "I don't want cucumbers."

Me: "So, would you like broccoli or sliced cucumbers for lunch?"

Esther-Faith: "Broccoli."

Me: (walking back to the kitchen) "Okay."

Esther-Faith: (setting Isaiah's cucumber on her allergy list) "Cucumbers are on the list now."


(from the HennHouse)

Saturday, August 21, 2010

When the Road Seems Too Hard

"I know that God will not give me anything that I can't handle.
I just wish he didn't trust me so much!"
-Mother Teresa

The past few weeks have been really challenging for me. I will confess that I have been struggling. I tried to write a positive uplifting post last week and it just wouldn't come. The truth is sometimes this journey is hard and difficult. Sometimes we can get overwhelmed and sometimes we may wonder if our faith is sufficient. This is all a part of our experience.

The past two weeks I have had moments when I said, "I wish God didn't trust me so much". I didn't want to make another decision or another phone call or hear another theory or make another appointment. I didn't want to wait for another answer. In fact yesterday, I gave myself permission to just cry. To experience my frustration and then let it go.

Then I came to this site and began reading all the blog entries of other families. I felt their joy when it was expressed and their sorrow as they are going through difficult times. I realized that we all have moments when the road seems too hard. But, we also, somehow, find the resolve and strength to pick ourselves up and carry on.

I asked myself this question... What does it mean to be the Mom of a child with Spina Bifida today? It means first that God above has faith in my abilities. It means somedays will be hard. It means that I will walk the halls of medical buildings and have to trust those who care for my child. It means longs nights of indescribable pain and other nights of laughter. It means that butterfly kisses are worth more than gold. It means cathing when you don't want to. It means maintaining routines. It means staying calm so Madilyn will not know how worried I really am. It means asking for help. It means crying over the little miracles of everyday. It means endless hours in prayer. It means my heart broken will be broken. It means joy. It means... snuggles are most precious. It's means..."I know that God will not give me more than I can handle!".

We have a busy couple of weeks of tests in preparation for our "Clinic" appointment in September. This week brings Urodynamics! Madilyn is not going to be happy about that! I will share our experience next week.

Best Wishes,
Madilyn's Mom

Friday, August 20, 2010

Cake ingredients

Sometimes, we wonder, "What did I do to deserve this" or "Why did God have to do this to me?"
Well, here is an explanation.
A daughter is telling her mother how everything is going wrong. She's failing algebra, her boyfriend broke up with her and her best friend is moving away.
Meanwhile, her mother is baking a cake. She asks her daughter if she would like a snack. The daughter says, "Absolutely Mom! I love your cake!"

"Here, have some cooking oil," her mother offers.
"Yuck" says the daughter.
"How about a couple of raw eggs?"
"Gross Mom!"
"Would you like some flour then? Or maybe some baking soda?"
"Mom, those are all yucky!"
To which the mother replies: "Yes, all those things seem bad all by themselves. But when they are put together in the right way, they make a wonderfully delicious cake!”

We're making cake fellow moms. With every doctors appointment, therapy session, consultation. Every time we strap on those braces, run a catheter, give meds., do a breathing treatment. We are combining all the ingredients to make ourselves the most wonderful cake of all. Keep doing what you do, friends. Keep smiling, keep fighting, keep loving.

Monday, August 16, 2010


This week I am beginning the wonderful world of homeschooling. AAAAAAAAAAA!

The thought crosses my mind..

What was I thinkinking!!????
But lo and behold I amd jumping in.

So with that said, of course my tiny bit of time that I goin to be even tinier.

So I'm looking for more contributors for the blog. I love this blog but Id still love more viewpoints. More mommies, daddies, aunts uncles, friends. So if you interested Please contact me.

Have fun this week!!!

Thursday, August 12, 2010

Guest Blogger: Joanna

There have been some recent developments with a few families in the SB community this summer that have been on my heart... a lot. Whenever friends are going through difficult changes it can touch your life - but even more so when their life is SO closely tied to yours. Whenever someone goes in for a CT scan, or has a bladder ultrasound, or receives the news that a shunt is needed, or that they have to start cathing....that is so, so real to me. I feel what they feel. I worry with them. I grow strong when they find renewed strength. It's such a bond. It's amazing...and sometimes hard. Because it makes you aware of all the things you could face...might face...will's all unknown...and it's all real.

So sometimes it's hard to stay focused on the "live life day by day" motto with these possible glimpses into our future.

Tomorrow Jet is going in for a procedure. I don't really feel like going into it (it's nothing major) but it falls into that "bladder" category (one of the 3 B's of SB). The details aren't really important right now. Some of you know about it and know what a mind game making this decision has been for me. It's just one of those "extra" things we deal with sometimes and wish we didn't. But I have faith that it is all going to be okay - and we are blessed that this is only a little thing and not a major deal.
So I'm asking for prayers. Prayers for our peace of mind and an easy recovery for Jet. :)
And in the mean time I wanted to share something I wrote. I feel it's sometimes therapeutic to write out feelings (I think my fellow blogger mommies and daddies would agree) so I did...and it kind of turned into a I went with it. :)

"Most every day I feel so thankful for the life we live,
The many blessings we enjoy - the chance we have to give,
The sweetest little miracle with mischief in his eyes,
The lessons he has taught us have come as a surprise.
And yet this source of endless love - our sunshine in the rain!
This precious gift of joy - can also bring me the most pain.

It's a whirlwind of emotions when I look at his sweet face,
The beauty of his life - a perfect portrait of God's grace.
But paired with that - the struggles of the future we've been shown,
The worries and the fear that come with so much still unknown.
It's easy to stay positive when hard times pass him by...
But I know that there will be a day when he asks"Mommy, why?"
"Why?" to certain things that let him know he's not the same,
The medicines he hates or why he cannot join the game.

And then sometimes I think "if I could only know for sure..."
Or "maybe that won't happen..." Or "maybe they'll find a cure..."
But Maybe is a dangerous game that goes two ways when played...
And inevitably you find yourself in the "maybe-worst-case" game.
And that game makes things dark enough for doubt creep inside,
And even in an empty room you'll feel the need to hide,
The sunshine is long gone and it has now begun to rain,
And a growing sense of helplessness brings out forgotten pain,

There's nothing left in your control
or if there is it's slipping,
There fear of losing everything
you've been so tightly gripping,
Like waves crashing over you
you fight the urge to fall
You gasp for air that isn't there -
You feel no strength at all.
Lost, confused, angry, desperate
Reaching for a hand,
Something to hold on to as you fight to try and stand.

Then suddenly you feel you're being lifted from the deep,
You're standing at the top of what at one point seemed too steep.
What seemed to last forever, in a moment now has passed,
What came on unexpectedly, is over just as fast.
A peace grows into hope as you embrace the help you've found,
Then hope gives way to joy as Love and light shine all around.
Instead of drowning in the waves, you're standing on the shore,
The doubts that once had pulled you down aren't with you anymore.

What happened to the overwhelming loneliness and fear?
Were they never real? Could they just simply disappear?
No - they're just as real...and just as strong as they were then,
They can return at any moment should I choose to let them in.
Never - I may say - I'll never let in fear and doubt.
But everyone has days where they're just too hard to keep out.

So if you find yourself in waters just too deep to swim,
Nights too dark to find your path,
Fights too tough to win,
Instead of holding on so tight and sinking 'neath the weight,
Give up control you think you have
and trade your fear for faith."
~ For Jet ~


Wednesday, August 11, 2010


Today, Carson is nine months old. This is absolutely unbelievable to me. For nine months now I have had the privilege and the blessing of being Carson's mom. nine months have come and gone. Nine months and I can look back and say, WOW! I cannot believe that it has gone so quickly. I also cannot believe how amazing and wonderful the last nine months have been. I am in awe as I reflect on all that we have gained in these last nine months.

We've gained knowledge

We've gained friends

We've gained debt

We've gained experience

We've gained faith

We've gained strength

We've gained a new language

We've gained a new understanding of love

We've gained a new way to pull together

We've gained memories

We've gained gray hair

We've gained peace

We've gained gear

We've gained confidence in our Creator

All because we've gained the biggest blessing of all--- A son.

 "Therefore being justified by faith, we have peace with God through our Lord Jesus Christ: By whom also we have access by faith into this grace wherein we stand, and rejoice in hope of the glory of God. And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us. "
(Rom 5:1-5)

Tuesday, August 10, 2010

Always pushing ...Always Changing

Tonight my family went down to a nearby park to do some family shots. It was awesome because we were able to do our very first family picture standing!!!

Funny how there are things that you think wont happen and they just do...

Then we came home and I was going through the pictures when I came across this one I shot of Toby.

Its so profound to me. Can you figure out why?

Well for one he's using his arm crutches. And take a sneak peek to the background of the picture. His WALKER!!! I didnt purposely leave it there. Its just life with Spina Bifida. Things are always changing. Youre always pushing your child to the next thing. I thought the walker was the "IT" for us, but lo and behold it doesnt seem to be...arm crutches now are the "IT" and whoknows after that.

A friend of mine gave me a huge compliment today. She was talking about how Toby is lucky to have a mom like me. (it wasnt one of those gooey lalala pooey talks either) She was talking about my high pushy self and my ability to push shove teach prod and try to get my children to do everything they are supposed to do. She said, what if you werent like that?? And i thought...Wow!! true!! I hated that I cared so much about my children doing such and such at such and such time, but it really isnt all that bad. Cause just like that little picture. We really are always pushing and things are always changing. As soon as you hit a goal youve got about 50 more staring you down...

Let's go...Let's tackle them and lets leave that last goal in the background!!


Monday, August 9, 2010

The little things

Sometimes, it is the little things that make me cry--both happy and sad tears.

Sometimes, it is the little things that make me frustrated or relaxed.

Sometimes, it is the little things that make me jealous, angry, grateful, or fulfilled.

Sometimes, it is just the little things...

My daughter learning to cath herself.

Tim's brother moving.

My dad starting kidney dialysis.

My son getting braces.

The kids catching a toad.

A friend complimenting my clean floors.

Sometimes, it is just the littlest thing.

And that is all it takes for me to appreciate more. To dig deeper. To love with renewed grace.

What are some of your little things?

Sunday, August 8, 2010

The Waiting Game


Our beautiful little Brooklyn was born 12 days ago, and needless to say, it has been an emotional week and a half. We are so very thrilled to finally meet her and love on her, but we are also very anxious to get her home so our family can be under one roof.

Overall, Brooklyn is doing great! Her vitals have been strong from the start, and she was able to get her MM surgery within the first 24 hours. Her surgery site is healing beautifully and her hydrocephalus has remained relatively stable since her surgery. She is nursing wonderfully and is only being "cathed" as a precautionary measure. So far, she is dirtying plenty of diapers on her own and her renal tests have all shown only positive signs.

Of course, we realize all of this can change, which is why our neurosurgeon wants her to stay in the hospital for another week. So we wait. It is hard -- this waiting game -- but I know this is all just part of having a child with Spina bifida. You wait and see.

Right now, we are waiting to see if Brooklyn needs a shunt. She was born with larger than normal ventricles and her head circumference has slowly increased, but all of her head ultrasounds have shown no major changes since the surgery. Her soft spots are "full, but soft" and our neurosurgeon isn't quite convinced she needs one...yet.

When we first chose Brooklyn's neurosurgeon, we knew that she was a little progressive and hesitant to instantly shunt. We were on board with that strategy, but I admit that we are getting a little restless as we watch her head get larger and we start to worry about the long-term effects of keeping this excess fluid in her brain. While we may be costing her "IQ points" by waiting, we can also reduce the chances of shunt revisions and even mortality down the road. Even as I write this, I cringe at the thought of making this decision for my child.

But as I read last week's blog entries, I can see this too is part of having a child with Spina bifida. Some of you have chosen to have MACE and other procedures, doing what you thought was best for your child and hoping you made the right decision. It is hard, but it is our job...whether we like it or not.

And so is the journey. A journey of hope and faith and, yes, lots and lots of waiting.

But as I look down at my precious little angel, stroke her soft skin, and soak in that heavenly scent, I know she is worth every minute of heartache, every hard decision, every minute in the hospital. She is teaching me just how precious life is and how every second I have with her -- and the rest of my family -- is to be treasured, not rushed.


Saturday, August 7, 2010

Funny with a dose of Frustration

Oh my gosh...we are out of KY Jelly. I jumped in the car and went to the nearest store to my house which happened to be Kroger. I headed back to the Pharmacy and searched everywhere. I couldn't find it...except the stuff that tingles and gives you all kinds of interesting results. I went to the counter and asked the Pharmacist if they carried it. He lead me to the "adult" play KY. I started laughing! I told him I don't think my 6 year old would enjoy being "catheted" with the tingly stuff! The gentlemen looked at me and turned bright red....after he got over his embarrassment I had my KY!

Oh my gosh....the last 60 cc syringe just stopped working! My husband was supposed to last until we got more at the doctors office next week. Well, it is broken and won't work. What to do? Hey... lets stop by the Northside Pharmacy on the way to the pool and pick up one. That sounded so simply! I learned it is not so simple. I took my broken one with me. I explained that it was Saturday and I had an appointment with our Urologist on Tuesday. I plead my case for them to sell me one. I told them all about a MACE and that I had to flush my daughter daily. I even offered to get her out of the car and show them her bully button! I finally was able to buy one.....why would they not want too?

Well, there are people who do bad things with them come to find out. WOW! I had no idea!

So, the solution to our problem is now UroMed. We finally got it all straightened out. Our cath supplies will arrive in the mail via...UPS. No more running out of anything. But, this took a lot of effort. NO ONE completely filled us in on this at the doctors office. I had to make a billion phone calls this week and fight with insurance just to get the right supplies.

Here is my frustration....sometimes I think the doctors assume we know how to navigate all the medical supplies and services ourselves. It sure would be nice to have the information written down and handed to me. I wonder how many other parents have to learn by trial and error like I have had to learn and I am very savvy at finding answers. Sometimes it would be nice to not have to re-invent the wheel!

A side note....Madilyn started first grade on Monday. She loves it... She came home with a 102.5 temp on Thursday. She had drainage coming from her stuff and STREP THROAT! Ugh... Gotta love school!

Monday, August 2, 2010

Cecostomy, MACE, Malone, oh my!

As Esther-Faith gets a little bit older, and as we're getting better at the enema routine, we're starting to consider surgery to make her life a little easier and to give her more independence and freedom. And really, even though she doesn't seem to mind it now, at some point she won't want to have per parents help with a traditional enema.

There are a couple of problems, though. First, due to a ruptured appendix earlier this year, we can no longer opt for one of the surgeries that uses the appendix (or part of it) to create the hole in her abdomen through which she will administer the enema. Second, after what she went through earlier this year, she is ADAMANT that she will not be having surgery any time soon.

Do any of the readers here have experience with any of these surgeries? Have you read anything or heard anything about any of them? What advice do you have with regard to the effectiveness or usefulness of having one of these surgeries? How did it change your child's independence (for better or worse)? If it is best for her, how do I convince her of that?

Baking with Mom