Saving Shea

Please Help

This child is in need of your help. I wish my husband and I could adopt him ourself but we do not have the funds. Please help this child find his forever home and make it easier for someone to afford to adopt him. This child has the same issues as our sweet baby Landen. He too has Spina Bifida, a shunt, bladder and bowel problems, no feeling in his legs and can't walk or stand. Landen has a mommy and daddy that love him very much and will give him the world, something that  Shea needs. He needs a home and parents to love him and kiss him and tell him everything is going to be ok. He needs a mommy to hold him when he doesn't feel good or tell him he is smart and can do anything he puts his mind to. He needs a mommy and daddy! Please visit Shea's blog and do what you can to help us save Shea.

http://www.savingshea.blogspot.com

LOTS TO TALK ABOUT

Lots to talk about... To catch up on things

Poor Landen has had a bladder infection for the past 2 months and continues to have one even while on the antibiotic.They quadroopled the dosage the last time we were at Shriners Hospital. We will be going back to Shriners on Dec 9th to have a Urodynamics test. In January we go for the Myelo clinic and will find out then if we need to start catherizing him. ;o( I'm not sure how I feel about having to catherize my 8 mos old but we'll do whatever will help our baby.

He continues to do well in therapy and the plan is to get him fitted for a stander within the next 2 weeks.

We had to order him "hip Helpers" that will keep his hips and legs closer together so he can learn to crawl. His legs are sorta "froggy style" or tend to spread out like that once he's on the floor.

We went shopping at the Southern Christmas Show where Landen sat on Santa's lap, which by the way was sponsored by Shriner's. As you can see, he LOVED it. I guess Santa whispered "if you give me a BIG smile, I'll bring you lots of toys." He loved being around all the people shopping. You see..Landen is a very nosey baby and he has to see what's going on around him. Needless to say he didn't have a nap all day because he was afraid he would miss something.

Thanksgiving was WONDERFUL. Lots of tasty, fattening food and "fat free desserts" (sarcasm). Then the boys worked off their meal playing basketball at the YMCA and indoor Football.

Lots to be thankful for this year.!!

1. First and most importantly we are thankful to God, a loving Heavenly Father who watches over us and blesses us beyond measure.

2. Landen B Black~Yep, our sweet sweet Monkey. Our life is complete with our sweet baby. We can't forget Lexi and Zach, 2 amazing, loving, sweet individuals who also complete our life.

3. Family: Ron and I both have such great families. We are thankful for them and love them so much.

4. Shriners Hospital... I can't say enough about them. We truly are grateful for their service and compassion that they give the many children that they see. Thanks for taking such good care of Landen.

5. I could go on and on about all the things that I am thankful for but I want to say how thankful I am to my wonderful husband Ron. He is my rock, my strength, my best friend, my therapist (lol), the best daddy in the world!! Thanks honey for being so wonderful. We are truly blessed!!

Landen had a Dr's appt for his Eczema and they prescribed a steroid cream and also did some blood work to see if he is allergic to anything. Well.... I found out yesterday that he is highly allergic to cats. ;o( We have 2 cats that we love that we are now going to have to find good homes for. It makes us sad, but we need our sweet baby to get better.

He has a list of a few other things that he is allergic to as well starting with Egg whites, Egg yolk, Peanuts, cats and border line Cow's milk. GREAT! Just something else to worry about!!!

That's it for now. I'll keep you posted on Landen's Urodynamics test. We won't get the results until we go back in January.

Now we are just waiting on Santa to come!!!! Can't wait

October Days

Where to start? First I would like to say that I admire those individuals who post a blog like every other day or even weekly. How on earth do you find the time to blog so often while taking care of a special needs child, all the therapies, house cleaning etc etc. I do good to catch everyone up on a monthly basis so WOW, I admire you guys.

To start...

My daughter turned 15 on Oct 20th and passed her driving test. Yay for her.. boohoo for me. This just means I'm going to be terrified every time that she gets behind the wheel of her car. Thank goodness we aren't letting her drive alone until she's 16 or older. How on earth has it been 15 years already?

Zach... he turned 11 on Oct 27th. I'm glad he's still a momma's boy and doesn't mind kisses in public. I need to hold on to the next couple of years b/c he'll be out there driving before I know it. 11 years, WOW.

Landen turned 6 mos old on the 28th! Happy 6 mos Birthday to him too! He continues to do well with therapy and suprises his therapists every day with new and exciting things he's doing.

He LOVES his cereal with pears now and actually opens his mouth for it instead of me tilting his head back in order for him to swallow it. (I wasn't doing that b/c I was FORCING him to eat.. his palate is too high so it took him awhile longer to LEARN to eat and swallow solid foods) He says Mmmmmmm after every bite of cereal. He's too stinkin' cute!! He's getting very verbal and loud. If you aren't talking to him or giving him attention he'll get louder until you look at him. He's precious!

We wanted to take a family trip to pick out pumpkins and eat ice cream but Lexi decided it would be more fun to go to the mall with her friends and Zach thought it would be more fun to go hunting...so Ron and I took Landen to the Peach Tree in Filbert SC to look at pumpkins, take a few cute pictures of him and eat some GREAT ice cream/milkshakes.

We went to the Halloween carnival at the YMCA and Lexi and Zach volunteered to help with the games and food concession stand. Here are a few pictures of Landen dressed up in his bat costume. What a cute bat!! As you can see, Lexi and Zach are too old to dress up anymore for Halloween. :o(

We missed our Trunk or Treat at church because Landen and I were both sick. By the looks of the pictures that were posted on FB, they had a GREAT time and we hate we missed out on that. We are still sick, but getting better.

Landen got his 6 mos old shots and a flu shot at the Pediatricians office. What a BIG boy. His weight now....a whopping 15 lbs and 4 oz. It's hard having a baby that is allergic to Latex b/c all the injections have latex stoppers. So it was an ordeal at the peds office with them trying to order pre filled injections with NO latex toppers. They ended up figuring a way to give him his flu shot and 1 other shot without the latex topper but the other 2 had to have the latex topper...so, he did get a very small rash on both legs where the shots were given.

We now have 1 other specialist added to our list, an ENT. So now we see a Urologist, Neurologist, Orthoped, ENT, OT and PT, and soon another specialist... a speech therapist. Busy Busy days.

What's to come in the next few months.  We have an appt at Shriners for Landen's Urodynamics test. Urodynamics is a study that assesses how the bladder and urethra are performing their job of storing and releasing urine. Landen does not have control over his bladder but we need to keep check on it to make sure it's not getting worse where we might have to start catherizing him. Lets hope and pray that that test goes well.

In January, we have a Myelo clinic at Shriners and we are hoping that Landen will get his AFO's ( ankle foot orthotics) and possibly a walker. Yeah for Landen!! Boohoo for mommy because that just means that he's getting older and not a baby anymore. :o(

I'll leave you with a cute video of Landen laughing at his brother. It's not great quality b/c it was recorded off of Ron's phone but it will do until we can get a "real" recorder. ENJOY!!

Also, one other video..My Spina Bifida moms can appreciate this and understand the joy of seeing this.

Landen has started kicking his legs like a crazy man, especially while changing his diaper which doesn't make it easy for mom.

I found this awesome poem and wanted to post it for you all to enjoy as well. We are so thankful that Heavenly Father chose us to be the recipients of a priceless blessing.




HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth

It was time again for another birth.

Said the Angels to the Lord above –

“This special child will need much love.

“His progress may be a little slow

“Accomplishments he will eventually show.

“And he'll require extra care

“From the folks he meets down there.

“He may not run or skip or play

“His thoughts may seem quite far away

“So many times he will be labeled

“'different,' 'helpless' and disabled.

“So, let's be careful where he's sent.

“We want his life to be content.

“Please, Lord, find the parents who

“Will do a special job for you.

“They will not realize right away

“The leading role they are asked to play.

“But with this child sent from above

“Comes stronger faith, and richer love.

“And soon they'll know the privilege given

“In caring for their gift from heaven.

“Their precious charge, so meek and mild

“Is heaven's very special child.”

Three Amazing Individuals

It's been a long time since my last blog. My life is crazy busy and not ALWAYS just about Landen. I know it might seem that way considering I have a blog dedicated to HIM and I talk about Spina Bifida all the time on FB but really my life isn't just about HIM.

I have 2 other beautiful,talented,just as brave children and I feel the need to talk about them this time and of course a little about what's been going on with Landen the past few weeks.

Lexi~ 

My beautiful daughter who is turning 15 on Wednesday (20th). Oh how time flies. I can still remember dressing her up in all the cute little girl outfits, taking pictures of her first day as a Pre K student, going to her dance recitals and painting her nails the same color as mine. Now, she's a texting queen (more than 1500 texts sent out in a month).Hangs out with her friends ALL weekend, goes to football games WITHOUT me and her stepdad,wants to drive everywhere and likes boys (yikes). She's such a social bug and has lots of friends! She loves Mcdonalds and hates my cooking, likes the color green, she's not into Aero anymore, but has moved on to Hollister and AE (of course more expensive) she has a cell phone fetish and upgrades her phone more than I color the gray out of my hair. I LOVE HER!

Zachary or Big Z~

He'll be 11 on the 27th. It too seems like it was just yesterday that lexi was dressing her brother up in her dress up clothes and making him play dolls with her all while watching Barney! I remember telling Zach that he had to leave his passies under the Christmas tree for Santa to get before he would leave him any toys (he was 3 yrs old and nothing else worked)I too remember dropping him off for Pre K and crying because my baby was growing up. Now he will soon be 11 and he's ALL boy. He eats, drinks, breathes, lives for hunting and baseball. He hunts everyday after school and all weekend with his grandpa or his dad. During the Spring it's all about baseball. He made the Allstars last season and he is one of the best players on his team. I have recently let him have a FB and he too stays on his cell phone and texts but not as much as his sister. Zach is the most caring young boy and has often gotten teased at school for taking up for special needs children or children with learning,behavioral problems. What a great example he is to us! I LOVE HIM

Landen~

Our sweet monkey. He is growing so fast and will be 6 mos on the 28th. He's been sick lately with a terrible cold/sinus infection.(I assume it's a sinus infection) I have yet to get another Pediatrician for him that is capable of taking care of his needs)Plus his old pediatrician is against prescribing antibiotics so what's the point of taking him in?
Landen is now sitting up by himself for short periods of time, holding his head up REALLY good(no more bobbing of the head) and he has started to reach for things.YEAHHHHH what an accomplishment for our little man. Doesn't seem like a big deal, but it truly is to us. The smallest accomplishments don't go unnoticed in our house! He has now started to eat a little bit of cereal with pears mixed in. He's such an amazing little baby boy, happy as can be ALL the time and has brought so much joy and happiness in our lives.

So...I know it's been a long time since my last blog, but it's been busy around our house like always. I am just taking one day at a time and enjoying every minute of my life and being thankful for all that God has given me. My life is WONDERFUL!

Almost 5 mos old!

What's New?

Well, I know it's been a long time since I've blogged but our life is so busy, I don't see how people even feel like getting on the computer once the day is coming to an end.
Our days are filled with therapy appointments, picking up brother and sister from school, church activities, ortho/dentist appointments, grocery shopping, you name it, we do it. My morning starts at 3:45am and sweet Landen gets up ( or should I say, is awakened by his daddy at 5:45a to take sis to seminary, bubba to school and then to the Y to see mommy before we head off to Dr's appts. Even though he gets started early in the a.m and keeps going (like the energizer bunny)ALL day, he's so happy wherever and whatever he's doing. We have been so blessed to have such a happy, sweet baby.

He's almost 5 mos old and I will have to say that I am really sad that he is getting older and bigger. I look at him every day and is amazed at how much he is growing and how his facial features seem to change every day. People say that I "spoil" him and I will have to agree that I am like a leach because I just can't get enough of him. If I could hold him in my arms 24 hrs a day, I would. I don't want to miss a minute of him!

Things he has accomplished since last time I blogged... Well, he's actually putting more weight on his legs now. Chrys ( his PT) is amazed that he can do that because he has no glute muscles and he can't feel his legs but she seems to think that he may have some quad muscles since he is standing and putting weight on his legs. He still H A T E S and I mean HATES tummy time. Both therapists know now NOT to put him on his tummy until it's almost time for Landen to go home b/c that's when he gets really ticked off and it's a little tougher to calm him once he's been on his belly.
He laughs and giggles alot more. Lexi had him laughing so hard the other day just by making silly noises that he looked like he was going to pop he was laughing so hard. I was even crying I was laughing so hard at him.
My favorite thing that he's doing now is open mouth kisses..Lots of drool, slobber and love go into those kisses and I LOVE them. He's blowing bubbles and spitting when he's mad or sleepy.( VERY CUTE at this age..or should I say, age appropriate) I'm sure it wouldn't be so cute at 2yrs old. He loves to gag himself with his fingers and fists.He will shove both fists in his mouth and gag to the point where he is about to throw up but STILL keep his fingers and fists in his mouth? And last but certainly not least, he's sleeping through the night...yeah for Landen and more rest for mommy and daddy.

I fired his Pediatrician, we refuse to go back to Levine Children's Hospital, and OH YEAH..I fired his Neurosurgeon as well. It's too long of a story to go into, but I always thought that Charlotte had some great doctors and specialist but I am eating my words now. We have had a terrible time with the doctors here in Charlotte and horrible experiences with Levine's so from now on, we will be traveling to Greenville,SC ( which is where he was born) to see all of his Dr's and specialty Dr's as well as Shriners Hospital (which we LOVE) Now I have to do some research on some Pediatricians here locally to find someone that feels comfortable and is educated enough to take care of Landen's needs.

Has it already been 5 mos since we adopted our sweet baby? Where does the time go? Just to think 5 mos ago my life was totally different. My life has changed in a way that defines who I am today. Landen was born April 28th and we signed papers to adopt him on April 29th. We traveled to Greenville, Sc for 5 weeks to visit our sweet monkey in the NICU before finally getting to bring him home. Thinking back 5 mos ago, before April 28th 2010, I would have never thought I would be the person I am today. 5 mos ago I didn't know anything about Spina Bifida, tethered cord, hydrocephalus, hip dysplasia, the difference between programmable vs non programmable shunts, the signs of shunt malfunctions, what a VCUG was, what a urodynamics was, I didn't worry about if the toys I bought were latex free,or the fears of sitting in a Children's ER waiting room, or the surgery waiting room, if I would be able to cath a baby..MY BABY, lying awake wondering if we did enough PT and OT today, wondering how life will be for my sweet baby as he gets older, will he be able to walk, crawl, climb trees like the other children, wondering if people will stare at him with braces on his legs or using a walker to walk. Before April 28th at 8:30am I didn't have the worries that I do now and that person had NO IDEA she could love another person sooooo incredibly much. I didn't know what it was like to feel such joy and happiness when her little boy sits up by himself for 5 seconds, or is reaching and manipulating toys like any other baby, or cries tears of joy when her baby laughs so hard at funny noises. I didn't know I would be able to tell exactly what's wrong just by his facial expressions or the certain noises that he makes, or to know when his shunt is malfunctioning or when he has a bladder infection by little to no symptoms. I'm so thankful for the person that I am and have become just from a special little boy. Don't get me wrong, my other 2 children changed me as well, but the joys and love for a special needs child is a different kind of joy and my heart has been changed for the better. The joys that a special needs child brings into your home and heart is a different kind of love. I am so glad that I have become a different kind of person, the person that took things for granted, took life for granted. I LOVE being a mom of a special needs child and I LOVE being a mom of 3 and a wife to a special and loving husband that is truly amazing. I love that Lexi and Zach are such loving and caring, sympathetic children to their younger brother. What an AMAZING family and life I have. God couldn't have blessed us more. What an amazing 5 mos this has been!

Big L's Occupational Therapy

Today we went to Touchstone which is where Landen gets his OT. Dana, who is his therapist, says that he is just "way too social". That's a good thing, right? Well it is, but not for therapy. Landen would much rather watch you talk to him and laugh at your funny voices than care what kind of toy or rattle you are shaking at him. He doesn't care that you have this REALLY cool toy that lights up and sings songs to him, he doesn't care if his bottle is right in front of him, because he's not going to reach for it. He however does like to watch people. If he's in the floor, he likes his head turned towards the door because he wants to see what's going on out there. He wants everyone to walk by and talk to him (in those silly baby voices) just so he can laugh at you.He would rather watch all the other children working really hard on his/her therapy and smile at them like they are suckers for not being "as social". He especially liked watching this little boy named George playing with his trucks. I can see the wheels turning in his head while he's watching them. I wonder if he's thinking "I wish I could do that, or will I ever be able to do that?" He will!!  

Hey...Look at that squirrel!

So, what did we accomplish today during the hour therapy session? Not much! The therapist learned a couple of things though... Dana learned NOT to bounce me on the big ball b/c that makes my tummy turn and I end up blowing chunks. She also learned that I'm too lazy to try to sit up by myself, so why is she trying so hard to get me to do it?

We have PT next week...I wonder how that will go?  haha

After a long day of therapy and shopping!

I'll leave you with a picture of Landen at the end of a long day of therapy and shopping.

New Shunt For BIG L

It was 4:00 this morning when Landen last ate.  He ate well, burped well, and fell quickly back asleep.  A few hours later, I woke up to get showered and dressed to take Zachary to school.  As I checked on Landen, I noticed he wasn't in his ALWAYS typical, extremely happy mood.  In fact, his whiny noises and cries led me to know that he wasn't feeling too well.

As I took Zachary and Lexi to school, I noticed Landen continued to cry and whine out in discomfort and happiness.  When I arrived at work, Landen vomited ALL over the countertop and floor as Tosh held him.  As has happened three times in the last month, Landen's shunt was malfunctioning and his head was filling with fluid.  Like the other times Landen experienced shunt malfunction, he obviously was sick.

Tosh briefly took Landen home and then on to CMC's Levine Children's Hospital.  While waiting in the ER, Landen continued to feel sick and hungry.  Finally, after several tests and consultations, the pediatric neurosurgeon recommended a shunt revision, concluding that the shunt that was placed in early June wasn't sufficient for his needs.

At the present time, Tosh and I are in the waiting room at Levine Children's Hospital.  Landen is in surgery right now having his shunt replaced.  Although we REALLY love the staff and everything about Greenville Memorial Hospital, we chose to stay here in Charlotte because Levine is a wonderful hospital and we won't have as far to travel if there are future shunt problems...Needless to say, I spoke with our Greenville neurosurgeon's nurse to get her opinion.  We REALLY like them!

We'll provide an update soon!  Say a quick prayer for Landen...The good Lord has blessed him tremendously thus far and will continue to do so.

UPDATE...

Monkey not feeling good

Monkey feeling GREAT after his shunt revision!

It's been 4 nights since Landen's shunt has been replaced.  Since then, he has done VERY well with it and seems to be comfortable and, of course, HAPPY.  We're quite thankful to the good Lord that things are going well for him.  I've added two pictures...There's a difference of night and day when
Landen feels bad versus good.

Our Trip to Holland...

"Welcome to Holland"

Written by Emily Perl Kingsley

Adapted by Ron Black

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this....When you're going to have a baby: 

It's like planning a fabulous vacation trip to Italy.  You buy a bunch of guide books and make your wonderful plans; The Coliseum, the Michelangelo David, and the gondolas in Venice.  You may learn some interesting phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  When the plane lands, the stewardess comes in and says, "Welcome to Holland."

"Holland??" you say.  "What do you mean Holland??  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place, but after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holand has tulips.  Holland even has Rembrandts.

And while everyone you know is busy bragging about Italy, you will say "that's okay, I went to Holland." 

Although the loss of that dream is a significant loss, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the VERY special, the VERY lovely things...about Holland. 

FROM THE BEGINNING...

Our sincere prayer had been answered and our priceless blessing had arrived!  Our family was so ecstatic that Lexi and Zach missed school and Ron and Tosh missed work.  We excitedly started our road-trip from Rock Hill to Greenville, SC (approximately 1.5 hours).

Just the morning before, Wednesday, April 28, 2010, we received a phone call from our social worker (LDS Social Services) asking if we would be interested in adopting a beautiful baby boy who was being born with Spina Bifida and Hydrocephalus.  Our curiosity turned into a pleasant and happy shock when our question "when" was answered by our social worker who said, "in about 30 minutes."  

After briefly discussing the opportunity, we excitedly and gratefully said, "YES!"  On the day of his birth, Landen had surgery to repair and close the opening to his spine.  We were told we couldn't see him on the 28th so we left for Greenville early the next morning. For the next 5 weeks, we traveled back and forth to Greenville Memorial Hospital to visit our beautiful baby before finally being allowed to bring him home.  Our feelings toward the staff, nurses, doctors, facilities, other patients, etc. of GMH call for a different post altogether (amazing).


Needless to say, welcoming Landen into our home and family has been an AWESOME and eternal blessing.  We love him SO much we can't put it into words.  He is truly priceless!  We thank the good Lord daily for this Heaven-sent gift!