December 2, 2012

The Twelve Days Of Christmas Special Needs

The Twelve Days Of Christmas Special Needs

On the first day of Christmas, the good Lord gave to me: a child with special needs.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with special needs.

On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with special needs.

On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with special needs.

On the fifth day of Christmas, the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the seventh day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the eighth day of Christmas, the good Lord gave to me: supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the ninth day of Christmas, the good Lord gave to me: remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a special needs.

On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the eleventh day of Christmas, the good Lord gave to me: a sense of pride and courage, an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride and courage, your appreciation of small accomplishments, your remarkable doctors & therapists, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with special needs.
Picture and poem from: Momma's Little Blessings FB page

November 11, 2012


Sadly, there seems to be a misconception out in the world that children with Spina Bifida are suffering and that they have poor quality of life.  I feel compelled to tell you that this is NOT true!  I can sort of understand why someone might think that if they had never met anyone with SB or have only read the crazy, outdated information some doctors are still giving out.  Obviously, I can't speak for every person with Spina Bifida and honestly since I do not have Spina Bifida myself the best I can do is share my experience as a mother of a child with Spina Bifida.

I want my blog to serve as a different voice for all of those that have been told or are under the impression that a child born with Spina Bifida will live a life filled with suffering or will have no quality of life at all.  I assure you that is not the case.  We are truly a blessed family and thank the Lord everyday for bringing Annabelle into our family.  

A friend recently referred to parenting her child with Spina Bifida like this:

"Their really is something wonderful about life that you only become aware of when have a child who may have some medical/developmental needs.Our daughter has defined who I am, and made me a better person. I feel like I finally understand what is important in life, and what isn't. She has influenced and impressed so many people, and I feel honored and blessed each day that she is ours. I cannot imagine what life would be like without breaks my heart when I think back to what the medical community told us when we were diagnosed, and how wrong they were. And I am grateful each day that we trusted our gut, and welcomed our daughter into our lives."  

She and I are not alone in our feelings about raising a child with special needs.  I could post many, many more just like this. Yes, there have been and will most likely be difficult moments but as a mother I know that parenting is difficult.  I have struggles with my boys all the time and they do not have "special needs" or extras as we like to call it.  Annabelle is just like all other kids but she has some extras!  I would never try and pretend that life with a child that has Spina Bifida was easy.  It is not, but what I get in return is well worth fighting for!

My goal truly is not to try and convince anyone that our life is great but to share many of our great moments with you.  Here are some of my favorite Annabelle (and family) moments that never made it to the blog these last few months.  Darn Facebook makes it way too easy not to blog.
Annabelle doing a little gymnastics - August 6, 2012

Backyard water play - August 11, 2012


Annabelle having a BLAST with her Dad and brothers at the beach

Climbing trees.  If her brothers are doing it - she will try it too!  
Nothing will stop our little ROCK STAR!

Family bowling! August 16, 2012 
Family time at the Nature Center - August 26, 2012

Sibling love!
They were actually fighting over who got to sit next to Annabelle.

Independence at the beach.  Annabelle LOVES the water and the sand.

Clearly not my best picture but look at her happy smile.
You can't fake that kind of happiness. 

September 15, 2012

Click HERE to read a beautifully written blog post by a friend about the Gift of Life.  This dear friend is the mother of 5 boys and the youngest has Spina Bifida.  They are also in the process of adopting a little girl who has Spina Bifida.

It's funny many might say that Branden and I gave Annabelle life but honestly, I think it's the other way around.  Our three children have given us the most perfect life.  We would have nothing without them.

October 19, 2012

Back to Business

The business of having fun that is! 

One week ago our sweet girl was feeling pretty lousy due to developing an unexpected UTI. Of course, in typical Annabelle "superstar" style she is back to her happy self once again.  Although, I was initially disappointed that she had developed a UTI because it had been just about  year and a half (can you even believe that?) since she last got one.  Seriously, how awesome it that?  I'm not afraid to say it, that is super great!  The reality is that UTI's are bound to happen due to her frequent catheterization. So truly, there was no need to be upset about it.  Thankfully, we caught it quickly and were able to get the right medicine on the first try.

Because the boys get out of school early on Friday's we decided to play at the park to burn up some of that extra energy.  We decided to go to the "accessible" park in the neighboring city to ensure that all 3 kiddos were able to have as much fun as possible.  SUCH A GREAT IDEA!!  We had a blast.  The boys probably would have had fun at any park but Annabelle had a GREAT time and there's no question she would not have had this much fun at our local park we usually meet friends at on Friday. 

This girl was on the move the whole time!
She wouldn't stop to eat or drink (not great, but understandable).
She threw a massive three year old tantrum when it was time to go.

The statements above and these pictures below are proof positive that accessible parks are awesome and worth the financial investment by the city.  Thank you Lakewood, California for caring enough to build this new playground!

She wasn't too interested in walking on the paved path to the slide.  She just went full throttle onto the sand and didn't miss a beat.  She has never done this before and I almost stopped her as I figured she'd get stuck.  Thankfully, she didn't and she couldn't have been happier to go directly to where the boys were playing.
 She was going non-stop up and down the ramp of the play structure.  She did it at least 20 times, no joke.  She keep saying "watch out mama, here I come".  She was hilarious.  Check out her face, she was determined and working hard.  She was going so fast that I was slightly worried she would fall.  I say slightly because I've tried to not be too overprotective about walking and falling as I know it's not in her best interest to make a big fuss.  If she falls (and she does) I just encourage her to get up or I help her up and we keep moving along.
 Here's Annabelle's super awesome big brothers.  
Her boys. Her protectors. Her two favorite people in the world.
Benjamin asked if he could take a picture of Annabelle and I.  I agreed remembering THIS article I recently read about mom's needing to stay in the pictures regardless of what they look like that day, month, year, etc.  So, although pictures of me lately clearly show that I am a good 30 pounds over weight and haven't bought a new outfit in what seems like an eternity I stayed in the picture.  At the end of the day I'm so glad I have this picture of Annabelle and I.  I really wanted one with me and all three kids but that just wasn't possible today.
Benjamin did offer to take another one with Jack in it.  This is what I got.  It didn't come out as great as I had hoped but at least he tried. I just love my little 5 1/2 year old photographer.  

What a blessed woman I am!

October 15, 2012

It had been a while but felt so oddly familiar

Annabelle has been blessed with great health this last year and a half so when she started showing signs of sickness this week I almost went into a panic.  When you have a child with Spina Bifida and they start acting "a little off" your first thought is OH NO a shunt malfunction.  We have a love/hate relationship with Annabelle's shunt.  We love that it keeps her healthy but hate that she has to have it and that they have a history of malfunctioning.  If it's not the shunt than most likely its a UTI (urinary tract infection).  Annabelle would get UTI's all the time prior to getting her G-tube in April 2011.  Thankfully, getting the G-tube completely changed our lives (for the better) and practically stopped the UTI's.  What a blessing! 

I had noticed on Wednesday that Annabelle's appetite seemed a bit off and she also had a few cloudy caths but overall nothing too alarming.  Then on Friday afternoon she made it pretty clear that she didn't feel good and was overly tired.  She actually laid down on the rug in Benjamin's classroom when I was talking with his teacher after school.  This is NOT Annabelle's style at all, even when tired.  When I got her home she had a temperature of 101.5 and was really net feeling well.  We made it through the night without incident but on Saturday morning it was apparent that she was sick when she didn't want to wake up.  At 11 am I finally said okay sweet girl it's time to get up!  She said her head hurt and that she felt sick.  I could tell she was miserable.  When I sat her up her forehead seemed to be slightly bulging and she was extremely sensitive to light.  She was crying a lot and holding her head.  I called her Pediatrician and we decided that since it was Saturday and we were concerned about the shunt than a visit to the ER would be necessary.  I was disappointed but knew we had no choice.

There was a time when packing a bag to head to the ER was an every month occurrence, but not anymore (thank you Lord!).  It felt so wrong yet so very familiar.  I walked from room to room practically emotionless gathering what my head knew to bring.  Sadly, those memories never go away and apparently they haven't for Annabelle either.  She was not happy when we I told her where we were going.  It was heartbreaking to see her so upset.  Thankfully, in typical Annabelle style she accepted where we were headed and gave kisses and hugs to her dad and brothers before getting into the car.  She was even willing to give her dad a small smile when he asked if he could take her picture before we left.

My sweet girl asked to wear her sunglasses because it was too bright.  She ended up keeping them on until she had her CT Scan a few hours after arriving at the hospital.  The hospital staff thought she was so cute.
When we arrived her temperature was 102. She quickly went down hill.  Here we are waiting for her to get her shunt series which consists of a CT Scan of her head and x-rays of her head and abdomen. 
            She was so brave and held perfectly still just like they asked her to.  I knew she was scared but she held her emotions together and did exactly what they needed her to do get the pictures.  By the time we were done with all of her tests she had a temperature of 103.5 and she was miserable.
Look at those rosy cheeks and lips.
She's not wearing makeup friends - she's burning up!

Once the Tylenol started to work I was able to see signs of my happy girl coming back to me.  We were more than pleased when the report came back showing that the shunt was indeed working properly and that the urine was showing signs of infection.  For us, this truly is the best case possible.  Now it was time for the doctor to pick an antibiotic that will hopefully knock out the infection.  In the first 48 - 72 hours of UTI diagnosis unfortunately the medicine choice is really a guessing game.  The doctor will look at the initial lab results as well as any past lab results to try and pick the best one. Unfortunately, until the completed results are received (usually 3 days later) the exact medicine is unknown.  The ER doctor first chose Bactrum (sp?) but ultimately changed to Cipro for Annabelle.  Cipro is a strong medicine with known long term side effects.  It's not my favorite medicine, but Annabelle's has taken it before and thankfully had success.  We were released about an hour later.  After being what Annabelle's nurse called a "very knowledgeable and well organized mom" at the hospital I was ready to go home and collapse.  The hospital is a very stressful place!  I held it together as long as I could and once I knew Annabelle was going to be okay I realized that I really felt like crap.  I was starving, my head was pounding and I was emotionally and physically exhausted.  If you've never been alone at the hospital with a child you probably don't realize how hard it can actually be.  Going to the bathroom or getting something to eat or drink is nearly impossible.  If that child can't walk and is too scared or emotional to lay in the hospital bed guess where they are?  Yep, in your arms!  This mom need to seriously start working out because my girl is getting heavy.
I'm not complaining though I love holding and snuggling my girl.  This episode was just another reminder for us to take life slow and enjoy every moment of it.  I actually think we are doing a really good job at that right now.  Maybe not so much with people outside of our immediate family, but we really are cherishing every moment with our kids.  Annabelle's good health has allowed us to put the boys in a different (smaller) school where we both get to volunteer on a weekly basis.  We opted not to send Annabelle to preschool in September as we has been instructed to do and this has been an amazing gift.  Waking up each morning and spending a few one on one hours with my precious girl is priceless.  Because Annabelle is our third child we know all to well that you will never (ever) get this time back.  I am determined to not waste away any of this precious time.
So, it's late on Sunday night and sadly she hasn't responded as well as we would have hoped she would to the medicine.  Her fever is still ranging between 101. 5 and 102.5 and she actually threw up earlier tonight.  This was definitely disappointing as it seems the infection is not clearing up.  The good news is that we are not stressing that maybe its the shunt.  We know this is a UTI and that we just need to get her the right medicine.  I'm thankful for my clear head and happy heart oh and that she threw up on Branden and not me (sorry, just being honest).  Thankfully, I am at a place now that I feel much better prepared to handle what life throws at me.  Obviously, I'm hoping we don't get any curve balls and that we can get back to our normal routine again very soon.  I am grateful for all of the messages of love we received this weekend.  It's so awesome to know that we have supporters all across the country.  My Facebook village once again didn't disappoint.  Thank you for holding me up!                     

October 12, 2012


Written by Joanna Penny 
 Just in case you weren't aware - I am so in love with this girl.  She makes me smile everyday and I thank the Lord for allowing me to be her mother.

Last year I somehow managed to get four "awareness" posts up during the month of October.  I even got a short article published in the local newspaper.  Click HERE to see how I was spreading the word last year.

August 18, 2012

More of what we love!

Keeping cool and having fun are two of the most important things for Annabelle when we go to the beach.  Thankfully, Branden came up with a great way for Annabelle to do both.

Her own private pool
Annabelle and her daddy have an AMAZING bond and part of that bond is the trust she has with him.  It's so great to see how willing she is to try new things with her dad.  Even when she's scared she is usually willing to try (whatever it is he's asking) if she knows he will be right there by her side.  On this day (July 21st) Annabelle decided to give surfing a try.  Needless to say she had a blast!

Taking a break after surfing
 Hanging out with her favorite boys
 Branden's 3 biggest fans!
 Annabelle is so lucky to have two wonderful brothers who love her SO very much!
Annabelle decided to race her brothers down the beach
She just melts my heart!
Another really great beach day - July 21, 2012

What's the best part of summer?

We love the beach.  
However, with the kids being as young as they are (3, 5, & 7) and with Annabelle's "extra's" I have found that it's a bit too difficult of a task for me to take them there on my own.  Thankfully, once the weekend rolls around we are very lucky that Branden is always up for a family beach day.  He loves the beach too!
Beach days for us consist of a lot of water play. 
and a lot of digging!
So glad that our girl is not afraid to get dirty!
Such a great family beach day!
July 7, 2012

July 31, 2012

She smiles through it all

I continue to be amazed by Annabelle with her (almost) always positive attitude and beaming smile.
I have so many topics I want to blog about but sadly I just don't seem to find the time anymore.  Thankfully Annabelle is healthy and doing really well.  She just had her birthday!  Our sweet girl is 3!!  It's so hard to believe she is not a baby anymore - although she will always be my baby.  I'm hoping to play a little blog catch up soon as I have so many pictures and a few fun videos I want to share.

However, in typical me fashion I seem to blog mostly when I am feeling a little down or feeling like I need to reach out to feel that sense of community.  My blog has been such a great place to openly share what I'm feeling at that moment and to passively solicit that needed support from the many wonderful and caring people in my life.  I was recently sharing with someone how I feel like motherhood can be so lonely at times.  I am truly so grateful for the honest, loving support I get so often from other moms.

So what on my heart and mind tonight?  Knee immobilizers - that's what.  Annabelle got her first pair today.  They have been on order for a few weeks but we finally got fitted for them today.  She will wear them each night while she sleeps to help stretch her legs because they are getting really tight.  She tends to keep them bent a lot (due to lack of muscles) and we are seeing her crouching more and more when she walks.  By wearing them at night while sleeping she will be able to get one long stretch overnight.  Don't get me wrong, I am happy she has them as I hear it is much harder to correct the leg issues than it is to try and stop or slow down the tightening with a brace.  But, truth be told I'm sad that my girl needs to wear full legs braces to bed each night.  She is already hooked up to her feeding tube for he nighttime g-tube feeding so this is just "one more thing".  It makes me sad.  I wish I could make things easier and more comfortable for her.  I feel guilty even complaining about it since I know in the big scheme of things it's really no big deal and it's not forever (I hope it's not forever!).  Now that I think about it it no one ever mentioned how long she will need to wear them.  I guess it's probably hard to tell right now but my guess it that it WON'T be forever. 

I had suggested to Branden that maybe we should let her fall asleep than put them on her.  He thought I was crazy (sometimes I am) and didn't agree that was a good idea.  I ultimately agreed my idea was kind of sneaky and would be worse in the long run.  I was just so worried about her initial reaction and I was afraid it would be hard for her to fall asleep.  Thankfully I forgot who we were dealing with.  Our Annabelle is so smart - thank you Lord!  We can talk to her (like a 3 year old) and she listens and she understands.  We explained why she needed to wear them and them we proceeded to put them on.  She said she didn't like them and we let her know we understood.  Then I jumped into typical mommy mode and asked if I could take a picture of her in her new braces.  She happily agreed.  I love that girl of ours, she is such an inspiration!

This was a bit of a difficult angle to photograph but I think you can see that she was smiling and not complaining.  Not real sure why I took these pictures on my phone and not with my camera.   
She happily continued to pose for more pictures .  We were thankful that she was able to sit up wearing them.  She was then ready to read books with her daddy before bed.
I am happy to report that night one went extremely well.  She was very tired tonight and that may have had something to do with it but she fell right asleep.  She didn't cry or complain - she was just our happy girl!  I am so thankful to have someone with such strength and a positive attitude in my life to learn from.  I am so blessed to be Annabelle's mother.
If anyone has experience with night knee immobilizers and would like to share their experience I'd love to hear it - both the good and bad.  I'm all about honesty and I'd love to know what we are up against with these tight legs my girl is developing.  Thank you blog world for continuing to connect me with people who really understand me and my heart.

June 24, 2012

Nature Center

On Saturday we decided to head over to the El Dorado Nature Center for some much needed family time.  We've been there many times before, but not since Annabelle has been walking more independently with her walker.  She was so fascinated with the turtles that I wondered if we would actually get past the first bridge to see anything else.

She loved exploring in the indoor center as well and we were so pleased with how open the space was.  Most areas were accessible to her all by herself or with little assistance from myself, Branden or Benjamin.  Jack was head down in the computer learning about all kinds of bugs and such so we rarely saw him.  Ben on the other hand wanted to show Annabelle EVERYTHING!  She followed him around the whole place - at least twice.   

I have found that it can be a real struggle finding fun places to go as a family where everyone's needs can be met.  I'm excited to share that we had a really great time exploring, learning and walking around together.  Although, the boys would have preferred to have been on the other (non-paved) tail they knew that this was the only one that Annabelle could maneuver on her own so they didn't complain (too much) and they were actually super great about encouraging her along trail.  I'm pretty confident that this was the farthest she has ever walked in one stretch.  We were all so very proud of her.  Here's a quick little video of her walking and talking along the trail.

Days like this are just wonderful.  If only every day could be this great.   
We decided to buy the annual pass so we could return anytime we want to.

June 10, 2012

Big girl bed!

We finally decided to turn Annabelle's crib into a big girl bed.  We've wanted to do it for a while now but because she has her night feeding (through her g-tube) we were worried about her safety.   If she was to try and climb out of bed while connected to her pump she could pull her g-tube right out of her belly and that would super bad.  But, we knew we couldn't keep her in a crib forever - although, she is my last baby (boo hoo).  Thankfully, we still had the bed rail we used with the boys which is adjustable so we were able to make it so she can't get out without climbing OVER the rail.  Honestly, if she was really that eager AND strong enough to crawl over and out I would probably be just as excited for her as I would be worried that she got hurt or pulled her button out.  We don't expect that will be happening so we went with it. 
So here's WAY too may pictures of our girl in her new big girl bed.
 Just in case you were wondering - 
she LOVES her new bed!.