Children's Wish Foundation

Landen had a wish come true... Children's Wish Foundation found us an amazing photographer who took our pictures. Her name is Jeni...take a look at the amazing job she did. This is just a sneak peak of the photos. There are over 100 pics but these are my favorites.
These pictures were taken at my parents farm in Rock Hill.

Whewww finally...an update

Ok, so I know it's been WELL over a month since I have last blogged but all you moms out there with special needs children know that you stay busy with therapy and other appts, your other children, sports for the kids, cooking, cleaning, homework, school projects, laundry, working(and yes, being a stay at home mom IS working) ALL while trying to keep your sanity and get a little bit of shut eye all before exhaustion sets in tomorrow...it's a never ending cycle.

Landen is doing well. He has recently had another bladder infection so we are doing the antibiotic thing again. He has a walker now(a loaner). This is the second loaner that we have used. We are trying to figure out what type of walker is going to be the best one for him. I really like this one, but I think we are going to have to go with the one that has a harness in it to help keep his right leg where it "should" be when he is trying to walk. All in all though he is doing great and taking steps... Go Landen.  He's been throwing up alot lately and I am praying, praying, praying that it is not his shunt malfunctioning again. He is the cutest thing ever and even though I am exhausted every day and can't wait to just get a few hrs of shut eye, I simply LOVE my life and would love to have more children!

For anyone that is contemplating being a "first time mom" Please read. This is like a "Job description" (I got this from a friend and added my own stuff)

FULL TIME MOM NEEDED (job description below) Do not apply if you cannot fulfill all duties!!!

1. You must first be willing to walk around the house in circles ALL day long, picking up the same things over and over and over and over and over and over.... you get my point.
2. You will serve as a fulltime waitress(without tips and courtesy of course)
3. MUST BE ABLE TO MULTI TASK: ex: clean up vomit from your toddler, clean poop off clothes, floor etc, fix dinner, do laundry, clean up food off the floor, pick up kids from school, do school projects(even though you finished school a LONG time ago), pay bills, etc...all by 5pm.
4. Be able to carry a purse or diaper bag 3x your body weight containing snacks, diapers, toys, extra clothes for when your toddler throws up everywhere, bandaids, tweezers and your personal items like a pad, which probably won't be there when you need it anyways.
5. You must look good in a pony-tail or just spray your hair and go if it's not long enough for a pony. You no longer have time to make yourself look good so a high quality look in 3 min or less is a must.
6. This goes for makeup too. You must be able to go into public without terrifying the people at Walmart or even your mail lady when you go to grab the mail(since this will be the highlight of your day). And by the way, brushing your teeth IS negotiable!!
7. It will be to your benefit if you enjoy endless crying and screaming, yelling, and whining that comes with EVERY age. (yes for real)
8. Must enjoy grocery shopping with a yelling toddler, 3 hr baseball games, shopping..but only for the kids now...It's no longer about you, fixing separate dinners b/c you have picky kids and eating your dinner cold.
9. You must be happy and have a good attitude at all times. (This will make your job easier)
10. Please know that you will NEVER be alone ever again! No time for peaceful showers, going to potty in peace, and most importantly you will NEVER be allowed to talk on the phone again without screaming or several interruptions.(Just saying...)
11. Must be willing to trade your romantic date nights with your kids baseball game, baseball practice, church activity, car pooling, drive through at Mcd's or a Highschool football game.
12. And lastly your heart must be extra large to hold the overwhelming love, countless wet and slobbery kisses and you must have strong arms to hold your children and be able to give lots of bear hugs. You must be able to stare at another human being in pure amazement, that God gave you the most amazingly beautiful miracle(s) and that He considered you worthy of taking care of one of His most important creations!!

If you can fill ALL these requirements, you will be a GREAT mom. If you apply and get the job, you will have to keep this job for a MINIMUM of 18 yrs! Oh, and you will not get paid in cash $$$$   payment is with kisses and hugs only!!!

One last thing... I decided to take this job FOREVER and it is the most rewarding job ever.

Here's a few pictures of me on the job! 


                 LANDEN CLIMBS ON EVERYTHING HE POSSIBLY CAN

                                WATCH ME WALK MOMMY!

                                   LANDEN'S NEWLY PAINTED ROOM AND WITH THOMAS

                                   MORE THOMAS THE TRAIN~

                                  HE LOVES WATCHING SID THE SCIENCE GUY

                                     THROWING ALL THE BALLS OUT AFTER I JUST PICKED THEM ALL UP

                             I TURN MY BACK FOR 2 SECONDS AND HE DUMPS THE CEREAL OUT AND EATS IT

                              HE WANTS TO WASH HIS HAIR LIKE HIS SISSY

                               DOING SOME FINGER PAINTING, WILL POST THE PICS WHEN FINISHED

             HEY LOOK, MY HANDS ARE DIRTY

Rolling along!!

We've been busy since our last post. I always "think" about writing on the blog but my tiredness takes over my body and I hit the bed instead!!

AT THERAPY:
We have been waiting for a while now for Landen's therapist to get us a wheelchair that we could try out. Today we got the chance to try one out. The only thing was that we can only use it at therapy which sucks b/c I wanted to bring it home...and so did Landen. HE LOVED IT! As soon as Chrys put him in it he started saying, "Vroom vroom vroom". Gosh it was so cute I just wanted to cry. It didn't take him long to figure it out.
We have Tefra(a disability Medicaid) which I am thankful for b/c there is no way we could afford all the medical bills, medical equipment ,etc...BUT they drag there feet when it comes to ordering equipment. We waiting 6 mos to get Landen's stander(which he absolutely hates) and it will most likely take another 6 mos or so to get the wheelchair. Which sucks for me b/c he is getting HEAVY to lug around everywhere. He doesn't like his stroller so we have to take his car with us everywhere we go. Oh well. I shouldn't be complaining...THANK YOU MEDICAID FOR ALL THE THINGS YOU PAY FOR!!!

Just a few other things since the last time I posted~

(THIS ONE BOTHERS ME)
We got a call 2 weeks ago from our Attorney that we used for Landen's adoption. They were looking for an adoptive couple for a 4 week old little boy that was in the NICU in PA that is special needs. Of course I was ALL OVER THAT and happy as could be until I asked what the fees would be. Ron and I desperately want to adopt more children and welcome special needs children especially another child with SB. We have the room for another child, we have the love to give to another child, we have the time for another child, we have other children that WANT another brother or sister...but we DON'T have $26,500. That's what the fees were going to be and maybe a little more, he couldn't give me a total price but it would be "around" 26,000-27,000. "SHUT UP" was my response. Needless to say, we simply don't have that just laying around or sitting in our savings. :(   


SHRINERS/MYELO CLINIC:
We went to Shriners last Thursday for a check up/xray/urine specimen etc. X-ray showed he has a curve in his spine which we were aware of. His hip is still out of socket and there is nothing we can do about that. The GREAT news is that we don't have to cath him. He's been off his antibiotic now for about 4-5 mos and his urine is clear and nothing growing as far as his cultures go. WONDERFUL NEWS. That's one less thing I have to worry about right now.

ALLENDALE ACADEMY:

Allendale Academy is the name of my daughters school.(She named it) Yes, Lexi is being homeschooled this year. She's in the 10th grade and I have to brag on her b/c she is very smart, self motivated, and looking to graduate early and start on College credits by her Senior year. It is challenging considering how busy I am with Landen but it's working out very well and she loves it. 


Here's a few pictures of Landen in his "new ride"...actually it's not his ride, it's one to try out and use at therapy. He loved it. Sorry the pictures aren't that great. I took them with my phone.

Tattle Tale

My kids went back to school today and even though they were not happy about it, I must say, I was a little. The sad part is the fact that Lexi is a Sophmore this year and Zach is starting his first year of Middle School. =(

This is the reason I am glad they are going back to school.
(see below)


Lexi- "Mom, Landen just hit me"
Me- "So"
Lexi- "Can you please tell him to stop."
Me- "Stop monkey"
Lexi-"Mom, he is popping my bra strap"
Me-"Seriously Lexi..He's 15 mos old. Let him be."
Lexi-"Mom he's hurting me"
Me- "Good grief Lexi, he's 15 mos old, how is he hurting you?" Irritated with Lexi, I pick him up and take him to "bubba's" room.(I just need a few minutes to clean up, vacuum, or whatever)

Literally, not even 1 minute later

Zach- "Mom, can you come get Landen, he is turning off my playstation"
Me- "Give him a controller so he thinks he is playing too"

(30 seconds later...)

Zach-"Mom, he turned off my playstation right in the middle of my game."
Me- "Oh good gosh, you kids are driving me crazy. Quit tattling on your little brother. Can you please just let him stay in there for a few more minutes so I can pick up in here"
(maybe 2 minutes later..If that)

Zach- "Are you done yet? Can you come get him now? He's getting into everything in my room, he won't leave me alone."
Me- (thinking to myself) This must be why people drink! Since I don't though, a little ibuprofen may help. =)

And seriously, this happens every day! Both older kids tattle on a little 15 mos old every day! =)

Sleep Deprivation

Ok, so for the last month or so Landen has decided that he doesn't need a nap during the day and he doesn't like to sleep at night either.(PLEASE TELL ME THIS IS A PHASE)
We moved his room to Zach's old room b/c the doorways are larger(for his wheelchair) and it's just a much bigger room (for all of Landen's toys). Zach wanted his old room back anyways b/c he likes to be closer to our room.(scaredy cat)
I wake up at 3:30am to go to work and I usually don't get to bed till around 9:30 or 10p. Landen decides he wants to wake up at 11pm and SOMETIMES he may go back to sleep around 1 or 2am but that's only for about an hr. I have been getting about 2-3 hrs of GOOD SLEEP(if there is such a thing) my body doesn't even know what the heck good sleep is anymore.
So, I hear people talking about "sleep training". Let me tell you how my sleep training went for 1 day. Yes, I said 1 day and I know I should give it more than 1 day but just wait.
I try to rock Landen and sing to him  b/c that's what I've done since we brought him home.(ok, so maybe it's my singing that's keeping him awake)so rocking didn't help... I put him in his crib(to cry it out, and hope he will cry himself to sleep b/c that's what the Dr's say to do)Oh no, not my son.  He cries so hard and gets so upset that he vomits ALL over the place. It's not just a little spit up either. I mean all over his comforter, crib sheets, soaked through his clothes, in his hair, down the crib etc. He did that twice in 1 day so "sleep training" for my child is not going to happen. And yes, I tried to let him cry it out yesterday as a matter of fact and once I heard him gagging I ran in there and grabbed him. And do you even want to guess how I get him to sleep in the middle of the night??? THE ONLY WAY HE WILL EVENTUALLY FALL BACK TO SLEEP IS IF HE LAYS ON MY CHEST. Yep, I lay on my back and he lays on top of me. If I try to move him, he wakes up.
My nephew sleeps like 20 hrs a day ( not really but he sleeps a whole freakin' lot). Like he will go to sleep around 8pm and not wake up until 11 or 12 the next day...then go down for a nap at like 2 or 3 in the afternoon...and he's almost 2 yrs old. I tell my sister in law that that is not normal but maybe it's just not normal for my son to sleep like 6 hrs total in a 24 hr period.

Calgon, please take me away to somewhere I can get some sleep!!! 

So, since he won't sleep in his "new" room, this is where he is sleeping now..... IN OUR ROOM IN HIS PORTABLE CRIB. Let's hope he sleeps through the night!

And here is his "new" room that he refuses to sleep in.

FYI... I needed to add that my husband DOES indeed get up with Landen too! He's amazing and he will try to get me to go take a nap while he tends to Landen but it breaks my heart when Landen cries and reaches for me.  
Thanks to my sweet husband who does so much for us. Thanks for getting up in the middle of the night with him too! =)

What is Spina Bifida

What is Spina Bifida?

I have gotten used to that question when people find out that Landen has it. Usually that is the question I get from my "therapy friends". I'm used to explaining about the shunt, the AFO's, why he doesn't walk, the bladder issues, etc. Normally I don't mind a bit and most of the time I enjoy talking about it because it brings awareness to it and if I can educate just one person about SB, then I feel like I have done my job.
BUT... for the past several days, I have become irritated with some of the things I have heard and realized that not many people know ANYTHING about SB.(Or atleast the people that I've talked to the past couple of days)
The things that people have said just in the past few days..

1. Oh yeah, my niece "got" Spina Bifida when she was 12 yrs old. She's fine now though. (goodness gravy, really?)

2. Yeah I've heard that if you find out soon enough that you have SB all you have to do is take an antibiotic and it clears right up. (Ok, seriously)

3. I know someone that has SB and as soon as they took his shunt out, he learned how to walk and now has NO problems at all, it's like he never had it????? (Huh, good gosh people)

That's crazy right!!!

I wish more people would ASK "What exactly is that" when they hear the term Spina Bifida instead of just assuming or thinking they know what it is. I think that is why people end up aborting b/c they aren't educated enough about SB.

PLEASE ask me "why isn't your son walking" "why is he wearing those things on his legs", "why does he have a big scar and a bump on his head?" I welcome those questions!

And... it's so funny to hear how people say SPINA BIFIDA...

"Spinal Bifia" or "Spina Bifia" I don't even correct them anymore. =)

So, to those individuals that think you can "outgrow" SB or take an antibiotic to "clear it up", you are mistaken.

Spina Bifida means split spine. It is a congenital disorder caused by an incomplete closing of the embryonic neural tube which allows the spinal cord to protrude through the opening in the bones. 
Myelomeningocele is the most significant form and it is this that leads to disability in most affected individuals. (This is the type that Landen has.)

Children with spina bifida often have hydrocephalus, which consists of excessive accumulation of cerebrospinal fluid in the ventricles of the brain.^[15] Incontinence is also common. (Purpose of the shunt...to drain the excess fluid off the brain.)

Landen has several therapist and specialists which include the following.

Speech Therapist, Occupational Therapist, Physical Therapist, Neurosurgeon, Urologist, Ortho, allergist, ENT, GI and of course his regular Pediatrician. We certainly don't want to add any more specialist to our list.

What is Spina Bifida? It's not a dirty word in our house. It does not define who Landen is nor does it define who he will become or achieve in this life. It is not something that you can cure with an antibiotic! (haha..my favorite) Spina Bifida is what he was born with and we "roll with it". 

I love my special boy! He is perfect in every way possible and I can't imagine him any other way.