Welcome

Landen has been (and is) such a priceless and eternal blessing to our family since his arrival. As you can tell, he's absolutely adorable and happy. We simply can't get enough of him!
As of August of 2013 we added another addition to our family, Brigit Nicole. She is missing part of her 3rd chromosome. We are still learning every day new things about her disability. We have a total of 4 kids and couldn't be happier!



The purpose of our site is to reach out to others who have Angels with Spina Bifida (or other special needs) for a supportive bond.

Please feel free to contact us @ ronandtosh@comporium.net



Friday, September 24, 2010

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!