Wednesday, September 29, 2010

watch out

I try really hard not to be negative on here. Really really try. But this to me is too important to not share some negative information.

It has recently come to my attention in a "in your face" type of way that not everyone in the medical community is in it for the children. I know shocking right!? I'm sure some of you have already more than realized this unfortuantly.

Fortuantly there are people who really are in it for our kids. Who will fight and work hard to get our kids living the most amazing life they can live and doing the most they can possibly do.

However, there are those who just get by and dont want their schedules interrupted by your phone calls.

I have been treated in such a way that we would be considered burdensome to our medical supplies company. In then watched as they treated a therapist with utmost respect and changed something that they told me could absolutely not be changed. I asked Toby PT about this. She said medical suppliers get money from dr.s and therapists. They are more willing to bend over backwards because they supply them the patients. We however are just almost like the go between that they have to deal with. We dont give them more money or less. (since we dont have a say)
I about jumped out of my chair!!! So this man, who should have been working to make sure Toby's arm crutches fit perfectly didnt care to adjust them for me even though I kept saying that didnt fit. I gave up assuming nothing could be done. Then my therapist informs me that he is going to readjust them after she made a phone call. So basically Toby went how long without arm crutches that fit because we werent IMPORTANT!! Crazy!!
Same goes for potty supplies. One supplier wouldnt even talk to me about pads for Toby, wouldnt even give me a name of a product. Another one sent me 50 free samples and told me she would help with all the approvals if we liked them. Amazing the difference!!
So here's my point. Everything has a point. : ) Its hard to not turn into a synical person when dealing with these type things but we do need to turn into a carful parent. Does that make sense? When in doubt find someone else, talk to someone else. Find one person who will fight for your child and use them as much as you can!! Pick their brain as much as possible to find out what is possible. Maybe you think something is "normal" but really made its not. Maybe there is something or someone much better out there. Someway better of doing things. as i have said before and will continuing saying. Dont be afraid to ask, push and otherwise be annoying for the sake of your child.

Sometimes nice mommy just cant come out in play. : )

Monday, September 27, 2010

Spina Bifida University (SBU)

(From a publication of the SBA)

"Launching in October 2010, SBU will offer both pre-recorded and live seminars with medical and health care professionals from around the country--all on the topics that are important to you and all at NO COST!"

October 4: Education and Employment
  • Building independence: How to develop better attention and intuition.
  • Ten Tips for Success
  • STRIVE for Success
  • Nonverbal Learning Disability and Educational Implications
  • Educational and Vocational Guidance for Individuals with Spina Bifida

October 11: Urology
  • Management of the Neurogenic Bladder: Late Childhood to Adulthood
  • Evolution and Management of the Neurogenic Bowel in Spina Bifida

October 18: Aging with Spina Bifida
  • Aging and Adulthood
  • Managing Changes in Later Adulthood

October 25: General Health and Preventative Medicine
  • Proper seating and wheelchair fitting for persons with Spina Bifida
  • Latex Allergy: 2010 Update
  • SOS: Save Our Skin!
  • Motion Analysis for Patient Evaluation and Decision Making

Live sessions will begin in November 2010.
Visit and click the SBU box on the home page for more information.

Saturday, September 25, 2010

What a week.....

This week has been all about...the good, the bad and the ugly! Have you ever had one of those weeks?...... Simply put, I AM TIRED and today happens to be my birthday. I have tried to juggle it all this week and it has finally caught up to me.

Spina Bifida sometimes can make family life crazy. The medical expenses, the appointments, the changes in routines, you name it. It can be like riding a roller coaster. You are up and then you are down and sometimes its like you are at the top of the first giant hill of the roller coaster and they just hold you there dangling before the car is released and you are racing down the scariest hill ever! But, then, you also get to experience the joy and the thrill of the ride when you safely arrive back at the station. Then you do it all over again!!

The good this is my birthday! I went to my favorite hairstylist and got a new hairdo and did not cry when I realized how many new gray hairs are on my head! My husband replaced my car that blew up two weeks ago with me in it!

The bad..... I wanted to scream at a Resident who did not bother to read Madilyn's chart before he came into the room at Clinic. What was he thinking? I must confess.... this makes me crazy!!! Especially when I take the time to make sure all the physician notes from her appointments that we have had have been sent to her file at Clinic.

The ugly.... adding new routines. Its not really ugly but it sounds like the only place to add a new routine. First of all we have the "cathing" routine down for Madilyn's MACE. We successfully flush her MACE nightly. We have avoided "cathing" Madilyn's bladder for almost 7 years. Thursday we were told we have to start "cathing". It was hard to accept. But, I am grateful that her Neurosurgeon and her Urologist talked this out together and created a game plan. That is so important to me that we are all on the same page. If this helps Madilyn, we will hold off on her MRI until February. If not, we move on to plan B.

I hope this week will be calmer and we will adjust quickly to our new routine. I would love to hear how you all handle things when new things come up.

I will give a full report next week on how things have gone! Until then, Best Wishes for a wonderful week!

Madilyn's Mom

Tuesday, September 21, 2010

some tips and tidbits

All of the programs discussed below are programs in Texas. However, there may be similar programs in your area.

Its seems that when Ive gotten the medical community down and all figured out. I figure out that I really dont know a thing!!

So here's some things Ive recently come across, or maybe not so recently.

1. Medicaid can and will pay for diapers, pull ups, wipes at the age of 3

I was told that they wouldnt for about 6 months. Absolutely no doubt, no way. It starts at age 4. Which is when the medical community considers "typical" children to be potty trained.

Well after some frustration with buying 2 KIDS diapers. (once Milo was born) I pushed a little more. Lo and Behold there is a form that your nurse/doctor can fill out. and SHOULD fill out for you. It is called a letter of necessity. So for 6 months I paid for all of Toby's diapers when I shouldnt have because Medicaid would have covered it. My nurse just didnt want the word to get out and have to do lots of forms!!

The lessons I learned from this : Don't be afraid to push, reword the same question, ask lots of people the same question.

2. The medicaid waiver (at least in Texas) is not just a regular medicaid program. ITS SOOO MUCH BETTER!! I was pretty content with medicaid because it pays for our basic needs for Toby's medical care. I figured we stay on it with SSI as long as possible. but then I started finding out details of the waiver. The give you an extra yearly allowance to pay for extra medical supplies, therapies and things like that. So lets say Medicaid says, "naaaaa your kid doesnt need a new wheelchair, walker, bla bla bla." The medicaid waiver program says, "no problem!!" Then they also pay for improvements for your home to make it accessible for your child. AWESOME!!

The lessons I learned from this: Dont think you know a program. Dont think you know what program is best. Find out, ask, call and push. ask parents of children with special needs they seem to always know best.

3. Medicaid will pay the premium for your WHOLE family for insurance!! In texas its called Get Hipp. All you do is show that your employer is taking out insurance from your paycheck and medicaid pays it back to you!! CRAZY I KNOW!!

The lessons I learned from this: There are some amazing programs out there!! AMAZING!!

4. Medicaid has a gas reimbursment fund. Every therapy appointment, dr, dentist appointment medicaid will pay you to take your child. This might sound ridiculous. This might sound like you are using the system. But WAIT!! I have been told that this program NEEDS to be used. The program will cease to exist for families who need it if we dont start using it. The money that isnt used the program just loses.

The lessons I learned from this: Yes I can technically afford to take Toby to all his appointments, but it is one less burden we carry. Isnt it hard enough to make all of them as it is!? And dont you always ended up eating out or drinking more coffee or going out and buying a special toy because of a rough appointment. I feel more at ease doing these things now that i know gas is totally covered.

So I hope this helps. I hope this gives you some information. I hope that if anything at all it perks up your ears and gets you googling programs in your state or country. There are amazing things out there that should be used and arent being used.

Good luck!!

Monday, September 20, 2010

Busy, busy, busy

Some days are just busier than others.

We've had a lot of those days lately. And this Monday when I'm scheduled to post, was both my dad and my Tim's birthdays. And my dad was back in the ER.

It was a crazy day.

And the post was never finished.

But I'm working on it.

About the link between hydrocephalus and attention deficit disorders.

I think I'm going to finish it before the weekend even starts.

I'm so sorry.

In the meantime, take a look at what I saw over at the Crosiers:

Saturday, September 18, 2010

Sometimes you must let the they can know they can get Back Up!

Spina Bifida comes in many different packages. We each share similar aspects of it but it is very personal to each child. Most people would never know that our Madilyn has been through so much by just looking at her.

This past Thursday was one of those days.....

Some background info:
Last year at this time Madilyn was confined to her wheelchair. She then progressed to her walker and then finally she was able to try to walk again. Complications from Spinal surgery and the struggle of her bones healing in her right foot had her immobile. She has developed lymphedema in her right leg. When she stands on her leg too long her foot swells to the size of any shoe she wears. Over the last year it has progressed to include her right ankle.

Now back to Thursday.....Madilyn's school was having their "Boosterthon Fun Run"! This was a huge deal. After much discussion, we agreed to let Madilyn participate this year. The first graders were challenged to run between 25 to 35 laps. The course was 50 meters. Needless to say...Madilyn was soooo excited!As I stood there waiting for the event to begin...those tears started. Here I was in this big crowd of parents with tears running down my face. I couldn't stop them. I thought I would just pretend that I was sick and not feeling well because I couldn't explain those tears to anyone. Especially after the race began.

It was watching Madilyn run.......and fall.....and look at me. I did not go out on the course and help her back up. This was the hardest thing I have ever done. I just told her she could do it. I think my exact words were.....Madilyn, get up and keep running. Then it was....Madilyn, get up and just walk....don't can do this! I am not sure how many times I repeated those words.

Madilyn completed 32 laps on the course that morning. She was so exhausted when she finished. Parents were allowed to walk the final lap with their children. It was our victory lap. I held her hand and we crossed that finish line together. This was one of those moments that only those who share our journey or those who are close to our family would understand.

Madilyn did overheat.

Madilyn did get nauseated and had to take Zofran.

Madilyn's heart rate did get really fast.....and that scared her a little.

She did beg me to take her home but I convinced her she could make it the rest of the day at school.

Madilyn's foot swelled to the size of her shoe.The smile on her face after she recovered from the event reassured me that I did the right thing by encouraging her to get up when she fell. I hope that this moment will stay with her when things are hard and difficult.

I remember a post that Kari had done a few months ago....she asked us if we really "Believe" in the possibilities for our children. This week I put that message to the test. I can honestly say....I Believe and my actions backed up my words.

Best Wishes,
Madilyn's Mom

Friday, September 17, 2010

A letter

This year I'm homeschooling.....

da da da daaaaaaaa **dramatic music*****

But last year and the year before that Toby was in a mother's day out program.

One thing I read, or hear, or talk to someone...honestly I dont even remember when (and i might have already told you about this not that I think about it) But anyway...

SOMEONE somewhere at SOMETIME told me that they did this for their child with Spina Bifida when they were younger.

They would send home a letter to all the children's parents in his class during the first couple weeks of school.

It would go something like this...

Dear ___________,

This year my child and your child are in Mrs. ___________ class. We are so excited to have a great school year!! I wanted to take the time to introduce my child to you. My child's name is _________. He has Spina Bifida. **At this point you can go into details or not. I chose not to** Your child might ask questions about some of the equippment he/she sees around the classroom. I wanted to let you know that _______ uses a walker, wheelchair and _____________ to help him/her get around the classroom. **I always wanted kids to feel comfortable to touch his equippment so here I would add something about allowing a child to see it and touch it because we dont want kids to be scared of it** We hope that this year we can make some wonderful friendships during all of the learning that will be going on. If you have any questions feel free to ask or you can email me at ______________________.

Hope this gives you a basic idea. I really got alot of positive feed back and all the parents were really comfortable with Toby and me. It kind of kept that awkward do I ask what's wrong, what do I tell me child thinking that makes people act weird. It was a hard thing to do to put myself and my son "OUT THERE" but I really felt like it was worth it.

Also, when Toby was a baby I had our nursery in our church post a similar letter on the wall. More proclaiming the nursery workers to please treat him normally and talking about all the amazing things HE can do. (then of course a blurb about latex and his shunt)

Do any of you do this? What are your thoughts?

Happy beginning of the shcool year!!


Wednesday, September 15, 2010

not a day goes by

Not a day goes by...

That I don't stop in awe and think how blessed I am.

That I don't say, "Carson, you are so cute."

That I don't laugh at a funny face he makes.

That I don't snuggle and hold my baby boy close.

That I'm not amazed with how strong he is.

That I'm not thankful I have a child.

That I don't kiss him and say, "I love you, baby."

But days and weeks can go by without....

 doctors appointments



the thought of there even being anything different.

Tuesday, September 14, 2010

And the winner is....

Mom of the Fields FIVE!!!
And all you who didnt get one. Go get one!!!
Mom of the Fields Five please contact me at so that I can get your shipping address and size shirt you want.
Thanks to all you entered!

Monday, September 13, 2010

Team Eli

Dont forget Team Eli giveaway ends TOMORROW!!! And dont forget when you dont win to go BUY ONE!!!

I really think they are just a super great design. Not to mention that the funds are going to an incredble organization.
And 12.00 for a tshirt!!!! crazy!! You cant get that anywhere anymore! (ps that includes shipping!!) even more crazy right!!??
So make sure when you check back tomorrow if you dont see your name pop up You can leave a comment for you email address and Jodie will be more than happy to send you a paypal email so that you can pay securely online to have your very own!!!
Hope you all are having a great day.


ps just ordered mine today and i am soooo excited!!

Sunday, September 12, 2010

Clinic day

Well, clinic was a little of what we expected. And a little of the unexpected.

The renal ultrasound took an exceptionally long time. The radiology technician spent a lot of time on the left kidney. With each pass of the wand over her back, my panic started to build. I tried to get Tim's attention, but he was busy entertaining Esther-Faith and trying to read the ultrasound himself. Which he doesn't know how to do.

By the time the ultrasound was done, my nerves were undone. I couldn't wait to get to clinic and talk to the urology nurse. We were shown a room right away. But we didn't see urology first.

We saw the physiatrist. She checked Esther-Faith's HKAFOs, walker, gait, and hips. We asked about crutches. We asked about her wheelchair. We asked about her braces. We asked if we could try the HKAFOs without the H. Could we try just KAFOs? She was reticent. Reserved. Cautious. Which is kinda how we like our doctors.

While chatting about her dogs with Esther-Faith (she knows how to get our girl to relax!), she helped her out of her braces. She pulled and twisted and checked and double-checked. She didn't think Esther-Faith could do without the H, but she was willing to let us give it a try.

We chatted some more. About her grandkids. And her dogs. And Esther-Faith's social and emotional development. She met Esther-Faith's Nana and Bailey. They talked about books.

As it turns out, the more we work with these doctors, and the more they get to know our daughter and our family, the more we feel like part of a team.

She conferred with the wheelchair folks about our wheelchair questions. They came in. We talked. About wheelchairs. And other stuff. They watched her navigate. And they met Nana and Bailey. They answered our questions about wheelchairs. And options. And insurance.

They left with the wheelchair and Nick came in.

Oh, does Esther-Faith LOVE Nick. Nick is who casts, builds, and adjusts her braces. He had talked to the Physiatrist, and they agreed to remove the twister cables and waistband.

Excitement started to fill the room. Excitement and anxiety. Once they were off, I started to worry that she wouldn't be able to do it. That her legs had become so accustomed to the twister cables that she would trip and fall.

And she almost did.

But after a few trips up and down the hallway, she seemed to get the hang of it. Sure she needed to be reminded to keep her feet straight. And to slow down for a while... until she was used to it. But once the waistband and twister cables were off, she didn't want to take the KAFOs off!

We talked to Nick for a while. About his job and his daughter and soccer.

And then the urology nurse came in... I felt my heart start to beat faster. I was nervous about the ultrasound. But she said Esther-Faith's bladder and kidneys are fine. FINE. Good even. That we're doing a good job with the cathing and teaching her to cath. That she's doing a good job learning. That Esther-Faith probably won't need the mitrofanoff surgery if she can learn to cath herself successfully.

She answered all of our questions about the cecostomy. All of them. She walked us through the procedure. The benefits. The drawbacks. The ups and downs. She dispelled the myths and gave us the straight answers. Even if they were hard to hear.

During this time, Esther-Faith managed to leave the room and go to the nurses station where she charmed the doctors, nurses, and other professionals for a while. She scored seven princess stickers in the process.

Then we met with the nurse practitioner. She checked Esther-Faith all over. And even though she was coughing and had a stuffy nose, Esther-Faith seems to be doing very well.

The nurse also reviewed the cecostomy with us. Giving us some anecdotal success stories, and making sure we knew it was easily reversed. Then she asked Esther-Faith if she was interested. Esther-Faith is not.


Too soon, I suppose.

And then... the unexpected. She talked to us about school and a neuro-psych exam. Because Esther-Faith is giving all indications of having an attention deficit.

Oh, boy.

Not that we haven't been down this road. Both boys have ADHD. Both boys take medication. Both boys see a psychiatrist and a psychologist. But the news stung. I was so hoping to avoid anything else that would make life difficult for Esther-Faith.

Deep breaths.

We're still a year away from the exam and the answer. But knowing what I know about attention deficits, I've got to admit, she's giving some pretty strong indications.

But like I said, Esther-Faith is Esther-Faith. Nothing any doctor or professional or psychologist says now or in the future will change how much we love our girl. So, I will take what we've learned, keep teaching her to cath, keep talking to her about a cecostomy, keep doing homework every night, keep paying attention to what she says and does...

And we'll keep on keeping on. One day at a time.

By Karin (from the HennHouse)

Plan G

One of my biggest fears about balancing Brooklyn and my other two children has always been my ability/inability to be a good mother to each of them. Giving each girl what she needs and not making anyone feel neglected or unloved. This fear surfaced very early on in our journey, and I admit that even after much prayer, it hasn't quite gone away. I'm not sure it ever will.

The 18 days in the hospital after Brooklyn was born were hard. Really, really hard. I felt torn and guilty, but it wasn't really a "parenting failure" on my part. I had little control over the situation, and I tried my hardest to be where I was needed.

This week, however, I experienced what I would call my first "failure."

Tuesdays are Brooklyn's clinic days and because she has started weekly casting and is still being monitored for a shunt, we are there every week, usually all day. However, several weeks ago I realized my oldest daughter Emma's first day of Kindergarten was on a Tuesday. So we worked the appointments around her day so I could be there to drop her off and pick her up (there is no bus available). I had people who could help me with Emma, but it was a big day -- for her and for me! -- and I wanted her to know it was important and that it was a priority. In fact, to make it work, we had to go to clinic twice this week. And even though our clinic is an hour away, I felt it was worth it. Emma was worth it.

But as you have probably already guessed, it didn't end up working out the way we planned. I was able to drop off Emma in the morning, but the orthopedic surgeon ended up running late, and I couldn't get there in time to pick her up. I had to call my Mom for help. I was devastated.

I wasn't going to be the first face she saw after her first day of Kindergarten. I wasn't going to be the one to greet her with my biggest "I missed you" hug. I wasn't going to be the first one to hear about all the fun stuff she did. Plus, I TOLD her I was going to pick her up. She was expecting ME... her Mom.

I felt like such a failure. How could I do this to Emma? I cut it way too close. I should have known better. How could I let her down like this? I knew our "new reality" was going to present these types of challenges, but I didn't anticipate it happening so soon and on such an important day.

But you know what? It didn't even phase Emma. In fact, she told me what a "neat surprise" it was that Grandma picked her up. "I was so surprised, Mom! I was so happy to see her," she told me.

I still got a very excited welcome when she saw my face. I still got to give her my biggest "I missed you" hug, and I still got to hear every detail about her day. Even if I wasn't the first one to greet her, we still had our moment -- a moment filled with much joy and no disappointment.

I think sometimes we put so much focus on the "first" and the "ceremonial" aspects of events -- and what we think they should be -- we forget to focus on what's really important. No, Emma's first day of Kindergarten didn't quite go like I had planned, but in the end, both Emma and Brooklyn were taken care of, and, really, that's what is important. God provided me with a family member that was available to help out in a pinch and give Emma the joyful reunion she needed, and I was still able to stay so that Brooklyn could receive the care she needed.

In fact, this experience parallels what I feel God has showed me since we found out about Brooklyn's SB: That even when life doesn't go according to your plan, God has a way of always providing you with what you need to get through it.

And, more importantly, I am learning that if you choose to accept His plan and trust that His ways are better, you can get through it with much joy and no disappointment.

Lisa (@ Heaven Sent)

Saturday, September 11, 2010


I have so many different thoughts running through my head today with it being the 9th Anniversary of September 11th. It is one of those dates I personally will never forget. It has become one of those days that are significant in my life like birthdays and anniversaries.

Being the parent of a child with Spina Bifida, there are other dates that live in my mind. The world may not recognize these dates but my heart and mind do. You may think I am crazy and I will not be offended if you do. Sometimes I think I am crazy. There is another reason why September 11th is a date I will never forget. It was the day of Madilyn's second spinal surgery. The one where she screamed for 72 hours before the spasms in her spinal cord stopped. I remember this day.

Dates: March 26th....Madilyn was born, April 1st....complete GI reconstruction, October 28th...7 hour lipomyelomenigoecle repair, August on right foot, September 11...second spinal surgery, April 14th....round two of surgery on right leg, August 24th....third spinal surgery, October of the same year....Madilyn was able to walk and gave up her wheelchair, March 15th...MACE procedure and so on and so on......

All of these days played in my mind as we journeyed to Children's Hospital this morning. Madilyn had to have a Renal Bladder Ultrasound. It was no big deal for Madilyn. It was more of a big deal to me because of the significance of this day. We were able to zip in and out of Radiology since it was a Saturday. After our ultrasound, we headed to visit our favorite nurse on the 1st Floor. Mrs. Kimi! She is the best and we consider her a part of our family!

I celebrate each anniversary of these dates in a personal way. I usually go back and read my journal entries and see how far we have come. I cry sometimes....and other times I just simply offer a quiet prayer that the Lord allowed me to make it through the experience.

Every experience, whether surgery or test or doctors appointments, have a place in our journey. They come together to tell our story. Some chapters are more pleasant than others. There is laughter and tears mixed together. There are hard days and then there are times of joy. There are days of complete frustration and days of peace. But, we share in this journey together because of the children who bless our lives and challenge us to be better parents.

Best Wishes!
Madilyn's Mom

Thursday, September 9, 2010

Going to leave the giveaway open till next Tuesday!! So make sure you scroll down to enter!! : ) And if you dont know what I'm talking about...
scroll down to find out..
and enter : )

Thanks so much everyone!! Hope you are having a wonderful week.


Tuesday, September 7, 2010

Happy Tuesday!

I was just playing some catch-up on others recent posts, and I am in awe of how big of a community we have developed into---- WOW!!! This is fantastic!!!  Many of you are also new members. I want to personally welcome you and also apologize for not doing this sooner. As Karin mentioned (and it is so true) we are a community that is so important and so amazing. It is such a personal blessing and encouragement knowing that others are just like me and that others understand and care what having a child with Spina Bifida means. Thank you!!

This past week--- I was shocked with the news that I am expecting again. This will be my first pregnancy following Carson. As I'm sure you can imagine I am very excited but very terrified at the same time. The questions are too many to really put into words. However, I know that the Lord gave us this next child just as he gave us our first and He will continue to be with us.

It has always been my goal as a guest blogger on this site to be an encouragement. To be a help and that is my goal still. I will continue to update on any information I learn through our journey with Carson and I will update as I learn new things about this pregnancy.

Of course, we have all been given information regarding our need for extra intake of folic acid. You need 4,000 mcg or 4 mg. I learned this week that there is a special prenatal vitamin for high- risk pregnancies and folic acid absorption issues. It is called Neevo.

Carson is doing really well. This last week we did a few activities that spina bifida and bracing has previously hindered us from doing and it was a wonderful experience. Swimming and Bike -riding. Of course there are still some slight modifications needed but nothing that a little imagination can't overcome. I encourage you seek out the activities that your child might  be unable to do and try try try to make it possible, even for just a moment. You and your child both need it.

Lots of love to you all,

Monday, September 6, 2010


Some days are just harder than others...

I love coming here and knowing that when I say, "We have clinic on Friday," 99 percent of you know exactly what I mean. And you know how I'm feeling. You know because many of you have sat in my chair before. Hoping for this bit of news or that. Gleaning the positives from all that you hear all of the doctors say to and at you.

You know what VCUG stands for without looking at me like I might be speaking a different language. You know that the results of a renal ultrasound could spell more tests or bring a good report. You've watched the doctors eye the way your son or daughter stands or moves or ambulates and you've wished you could read minds.

So, as I get my boys ready to have their sister go to the hospital; as I arrange extra childcare, as I prepare my heart for some good and some not-so-good news, I know that next Monday when I come here to tell you how it went, you will all know what I'm feeling. What I've been through. What my daughter has endured.

Because you've been there, too.

And because we're community.

So, thank you. For being my people. My neighbors on this journey.

by Karin.
(from the HennHouse).

Team Eli

Hello and Good day everyone!!!

I have some marvelous news for you today.


First I'm sure youd like to know what it is.

Its a shirt!! (Well this is a picture of the back of the shirt) And its not just any shirt!! Its a team E.L.I. shirt. What you ask is a Team E.L.I. shirt?
Jodie, Eli's mommy contacted me last week regarding an amazing project she is working on. Of course along with projects comes fundraising. Jodie's baby Eli passed away on August 8 of last year. He had spina bifida.
E.L.I. stand for Every Life Inspires.
The money raised for these shirts is going to an incredible center that Jodie is raising money for. Click here to view the complete story. I'm certainly not doing it justice.
Anyway to get the word out about this amazing project, this incredibly mommy and this adorable shirts. Jodie has offered to do a giveaway!!

So how do you enter?
First link this giveaway somewhere in the worldwide web!! Either email some friends, post it on Facebook or post it on your blog. Remember this is a great project with a great cause!! Then leave us a comment with your email address and how you linked this giveaway!!

And remember if you dont win We'd love for you to purchase one!!

Saturday, September 4, 2010

Measuring Time

When challenges come up in my life, I often find myself finding ways to measure time. Right now, I am measuring time by my calendar and the doctor appointments and tests that fill my week. I can't help but do this. Especially when we see changes happening to Madilyn. In March I did this until we finally made it to surgery for Madilyn to have a MACE procedure. It was like the end of a race for us. I kept marking off days until we will arrived at our destination.

But, the crazy thing is we never have too long of a break. We just passed the year mark from Madilyn's last spinal surgery. Things are changing. So I am back to marking that calendar. We already had a new Urodynamics study. We will head back to Children's for ultrasounds. We have to consult with Orthopedics and then back to clinic to put all those pieces together. Sometimes its a vicious cycle. It is so easy to get caught up in it and let it rule your every aspect of your life. It can ever paralyze you into thinking that there is nothing else to do.

Measuring time.... Madilyn knows the drill and understands what all these appointments mean for her.

But, today, we broke the cycle of not doing and did something MAJOR! Dont' get me wrong....we enjoy life but sometimes doing big things is just too much work. We loaded up and head to downtown Atlanta and participated in ESPN's College Game Day. It took some planning and we had to carry our emergency bag complete with extra clothes, undies, wipes and everything else we would need. We had water to keep her hydrated. We had to watch what she ate because she gets sick very easy. After we made it through that......Madilyn was given the opportunity to go to the Georgia Tech game with her Dad. I kissed them at the gate and reviewed our game plan. He was all set and my oldest daughter and I headed on a walking adventure through town. This was a Big DEAL. Madilyn lasted about 20 minutes at the game!

If we had not planned that this could happen I am sure we would have been very disappointed. Time meant nothing to me today except for just enjoying every moment of this daring adventure. We focused our energy on making it a spectacular day for our family even if that meant only spending 20 minutes at a college football game.

I hope that I will someday process all that life is with having a child with Spina Bifida and not measure time in doctors appointments and such. I am not 100% sure how to do that. Today was a start.

Friday, September 3, 2010

Lack of inspiration??

I love this post I found here to read the whole article.

Who doesnt need a mushy, misty eyed, inspirational quote some days?

I know I do!!

So here you go. Get your tissues ready.

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." (Albert Einstein)"The only way we can be there for our children is to be there for ourselves." (Anonymous)
"You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman
"Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it." -Bill Cosby
"The central struggle of parenthood is to let our hopes for our children outweigh our fears." (Ellen Goodman)
"Enjoy the little things, for one day you may look back and realize they were the big things." -- Robert Brault"Perseverance is not a long race. It is many short races one after another." - W. Elliot
"If you think you can or you think you can't, either way, you'll be right." -Henry Ford
"Go as far as you can see; when you get there, you'll be able to see further." -Thomas Carlyle
"Courage is being scared to death - and saddling up anyway!" -John Wayne
"Do not let the behavior of others destroy your inner peace." -Dalai Lama
"Some people come into our lives, leave footprints on our hearts, and we are never the same." -Franz Peter Schubert

"What lies behind us & what lies before us are tiny matters compared to what lies within us." -Ralph Waldo Emerson"Children remind us to treasure the smallest of gifts, even in the most difficult times." - Allen Klein

"There are two ways of meeting difficulties: you alter the difficulties or you alter the way you meet them." (Phyllis Bottome)
"I know God will not give me anything I can't handle. I just wish He didn't trust me so much." (Mother Teresa)

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." - Christopher Reeves"To the world you may be one person, but to one person you may be the world." - Heather Cortez