Finally!

Hi everyone we have some major updating to do! I can't believe I have been so lax since September. Lane has lots of news for everyone! I'll start with the fact that Lane is three now! I cannot believe my baby is three, where did the time go? Lane started preschool this spring and after a couple weeks he really loved it! He loved interacting with the other kids and I saw some major changes in the short time that he went. Developmentally Lane is kicking some major spina bifida but! Lane currently is excelling in speech. Yep you read that right our little man who couldn't make any noise until after he turned two has in one year far surpassed children his age in the language department. He talks like a little adult and tested at a six year old level in his language skills this spring. Lane was lagging behind cognitively during his preschool assessment but has taken some major strides this summer and is now making gains and ahead of kids his age in this area. We are currently counting to 11 perfectly and working on to twenty with some reminders every now and then. He knows his ABC's and loves to "write" holding a pencil correctly already! There is so much more he does but these were some major things we were working on! Mobility wise Lane is rocking! Seriously! We have crutches ordered and our therapist thinks it will be a matter of weeks before Lane is walking with his crutches. Lane walks well with his walker although he is a little pokey in public due to the fact he has to talk to EVERYONE he passes! He is really close to walking holding on to one hand instead of two as well! Now for the big one....Lane has recently started standing completely unassisted!!! We are beyond thrilled with this and he stands for longer periods of time every day! He is super excited about this new trick as well and shows everyone thats around!

Lane is enjoying his summer playing outside and getting dirty. He started riding horses with daddy and by himself (with daddy assisting) this spring and absolutely loves it. He is really into planes, animals, and guns(hunting) right now. Lane loves to help work on trucks with his daddy and uncles too!

Mommy and Daddy are doing well too! The best part of this summer has been a big one. Lane's now a big brother! We welcomed a beautiful, healthy baby girl into our family on July 9th and Lane is a great big brother! Emily Grace arrived weighing in at 7lbs 9oz and 20in long, a great deal bigger than her big brother was! We are all doing great and I will attempt to update this more often! Now for some pictures!

Riding my horse with daddy in my jammies

Lane and Emily

 Waiting to meet his sister!

He is a great big brother!

Meeting Emily for the first time!

Yep I can stand all by myself!

Playing in the pool!

Driving my Uncle Jordans tractor! I'm a little country boy!

Lane was the ring bearer at his Nana's wedding this spring! This is him with mommy!

Meet Emily!

A Huge and Super late update!!!!!

It's been six months since I updated this and I am so sorry to all my blogger followers. This is going to be a short update full of BIG news for everyone! I will start at May when Lane had his trach decannulation. Yes you read that right we are trach free! Six weeks later his g-tube followed so we now have NO tubes left! Lane's braces changed this spring and we went to a brace on the front of his leg as opposed to his old bracing on the back which helps him stand much better.

Lane's speech has exploded since decannulation and he actually has already started and graduated out of speech therapy. He is repeating EVERYTHING we say and has gotten to be quite a bossy little thing!

Lane is walking really well with his new walker! Yep we have a new walker too! Pictures to follow!

Other than that Lane is growing and is so smart. He is counting to three, naming all his body parts, and we are working on colors. The nurse practioner at clinic last week actually said he was the smartest two year old she has seen in a really long time!

As for mommy and daddy we are great! I ran my half marathon in louisville kentucky for Team Spina Bifida and it was wonderful! I also graduated and passed state board for my RN and love my new job! Daddy is doing great too!

Danielle

A quick update!

Lane is doing awesome! He is now walking with a walker for fairly decent distances! Our little guy is starting to talk with and without his speaking valve. He is saying about 10 words regularly and most frequently we are hearing go and out. He LOVES being outside this year. This little guy is already sporting a slight farmers tan! He has been fishing a few times and is facinated with that too. We have been blessed with an awesome winter and Lane has been pretty healthy overall. We should be getting this trach out at the end of the month!!!!! We just heard yesterday and it is music to my ears! I am on cloud nine. This month is going to be busy but I am hoping that by May I will be able to devote a little more time to this blog! I apologize to my followers but hold out guys just one more month and I will get better!

Christmas Break Update!

It's been forever, I know! I am just going to send out a HUGE apology to all of you for such a big gap in blogging! Life has been a little crazy, in a good way, lately and unfortunately the blog has taken the back burner. I finally finished this last semester of nursing school so only one more semester left for me! I started a part time job also this last month or so. Just in case school, work, and being a mommy and wife wasn't keeping me busy I signed up for a half marathon! Why I decided I could run 13.1 miles I am really not certain, but I am going to in April! I am super excited to say I will be running for Team Spina Bifida at the Kentucky Derby marathon in April!!! I have started training for this race and am determined to run this for my little man. He is the true motivator behind this. Every mile I run, every step I take is for him. For the days when standing one more minute kills him, but he does it anyway. For when he wants to walk so bad and it is so hard, but he tries his best and does it. It's all about him, because every mile I can run has no comparison to the mountains he climbs every day.

Daddy is also on the move to fitness! He is working hard to shred some pounds and get in shape so I have to say how very proud I am of the progress he has made (though he refuses to run a half marathon)!

Now for the one you really want to hear about. Lane is awesome! He has progressed so much so fast lately. He started pulling up about a month or two ago and quickly started crawling on his hands and knees. He is now about 50/50 on army crawling and four point crawling. The biggest news (if you didn't catch it earlier) is Lane is taking steps with his walker!!!! With a little supervision and occasional support he can walk across my living room, which is really big. Without any help he is going about 6ft! This is absolutely amazing and I get so excited EVERY time! My little guy never fails to surprise me. Lane is also into everything, and I mean EVERYTHING. Nothing is safe now and it seems I can't baby proof enough, but I love it! He is starting to sign and talk a little. I am still hopeful this trach will be out before summer so he will be talking soon, but we are starting sign language just in case. He is picking it up fast and seems to like the extra ability to communicate. We also added on occupational therapy to work with his feeding skills as he chokes quite a bit. So far Lane is not too happy about it so progress is really slow. I have faith in our new OT and I am praying that he will be more accepting of her soon! We are headed to spina bifida clinic tomorrow so hopefully since I am on break I can get that update in here! Here are a few pics to hold you over until I get my camera uploaded, hopefully with the tomorrow post?! Merry Christmas!

Standing at the Window


At the toy box WITHOUT braces!


Always Happy!


Latest endeavor....climbing!

more to come....

Mountains

October is Spina Bifida Awareness month. I'm going to kick off my month with a post about the one question people never want to ask. "What is it like?"

There is not any explanation I can give to make someone understand the emotional aspect of being a special needs parent. No words relay the exact balance of all the emotions felt. Here is my best shot at an answer.

When a woman becomes pregnant she is walking down this lovely road. The road is flat: a nice, easy, relaxing walk. You look at the flowers and just enjoy the pleasantness of the road your traveling down.

Then one day you find out that your not suppose to be on that road. You find out there is a special road for you and you must get off of this level, easy road. It's hard to leave. Everyone you know is walking down that road and loving it and you just know this other road is horrible, but you have no choice so you go.

And then your there. Standing at the beginning of that road. You feel alone, scared, and know that there is no way you are going to make it down that road. You want to go back to that first road with your friends and family. The road is long. This road you are staring down isn't a bumpy road. It isn't even full of hills. No, this road is in the mountains. It is full of lots and lots of mountains.

You haven't trained for mountains. You have never climbed a mountain and you know it isn't easy. Climbing mountains takes sweat, tears, and a lot of strength. You could fall, you most likely will. This is horrible. You know it is the worst thing that has ever happened and you don't understand why God would do this to you.

You walk the begginning of this road and though simple, you are still very upset by just being stuck here. Then you arrive at the mountains. They are tall, and rocky but forward is the only direction you can go. It's hard climbing those first few mountains. You fall down, you cry, and want to just scream. But you get up. You keep going. And you make it to the top of the first mountain, then the second, and all the rest after that. The climbing gets easier as you go and soon you can climb mountains with ease. The tallest mountain in the world doesn't even make you blink.

While on this road you realize that maybe it's not so bad. You discover other people on this mountainous road. Good people who help you. They take your hand when you fall. They tell you all the shortcuts. They rejoice with you as you make it to the top. You realize that the journey your on is not at all about the climb, it's about getting to the top. When you do make it to the top of those mountains you feel happier than you have ever felt. Each mountain gets better. The climb is easier and success is more overpowering.

It's a simple realization. The first road was simple. Everyone was on it. But don't mountains have the best scenery?

an update

Here it is october and i am just now updating. O I have been so bad on my blogging! I am super busy with my FINAL year of nursing school and Lane has been busy himself. He is making leaps and bounds. First, I cannot keep track of this kid! He is crawling EVERYWHERE and is into EVERYTHING. Nothing stops this little boy and that is a miracle. We are working on pulling up and cruising and he is so very close! I am going to try to upload some videos next time. We recieved our walker this month and lane is standing at it but we are not walking yet but that is coming soon I'm sure.

Medically speaking Lane is as healthy as a horse right now. Feeding is going great and we are not using the g tube at all. We are not decannulating this fall as planned but are going to give Lane a little more time and try for this winter.

Be looking for an upcoming post about Spina Bifida Awareness. October is spina bifida awareness month so more to come!

Our walker


Look who's feeding themselve!!


standing up....


grandma's dog which lane really loves...


and the main man....


so sweet...blowing mommy a kiss...

tna

It has been a while for an update and unfortunately I am updating from the hospital. On Thursday Lane had tonsil and adnoid removal with his upper lip clipped. The surgery went well and he came home that day. His secretions increased singnificantly and by monday we felt we needed to have him seen. We have been admitted to the hospital for a few days to figure and what is going on and attempt to beat pneumonia before it gets here. Hopefully we will be home soon with no issues. Danielle

we are back!

It has been ages since I have blogged here as I have been fighting with the internet providers and they finally got it fixed! Lane is doing absolutely amazing! I last posted that he was going to be on the move soon and he is! The little man is into everything these days! He is a professional army crawler now and is trying to get on all fours! We are bracing next month hopefully so he should be up on those little feet soon! He is gaining weight well without the tube which is a very good sign. I am hopeful we can remove it very soon. He is on a developmental fast track and is catching up quickly! Just this week he has learned to stack blocks and do puzzles! He is turning into a little tornado and I am loving every single minute and I honestly rejoice in cleaning up every mess he is making!

August is a very busy month for us and I am going to TRY to keep you all updated as much as I can. We are headed to clinic at the beginning of the month so we will be seeing ALL of Lanes doctors and making a new game plan for him. He has surgery soon after to remove his tonsils and adenoids. I am dreading this surgery but it is one step closer to getting rid of this trach.We are still looking at October for the decannulation.

For now I am just going to add some pictures with this update and start on a blog post I have been pondering for a while. Hope you are all having a great summer!

there isnt a rotation button i guess.....sorry

he was laughing so hard!

this is lanes silly face! he giggles every time he makes it!

dont tell mommy i made this mess and im hiding in the clothes bascket.

always smiling!

finally an update...sorry

Wow, I just realized how long its been since I actually updated and I have left everyone hanging on a few major things! First of all Lane did not decannulate May 10th as planned. When he had his bronch on April 15 they saw that his airway was still pretty floppy and collapsing in on itself. We are hoping to decanulate in October now. If the trach is not out by October we will be waiting till spring unfortunately to try again.

Lane is doing AMAZING! Since starting therapy I can see such a big difference in his strength. He stands up straighter now and does not depend on the table nearly as much as he did. He sits like a champ. He is learning well how to transition from sitting to laying and the other way around. He is starting to pull himself on his belly (aka army crawling)! I think our baby will be on the move VERY soon! He is getting braces in July so hopefully he will be walking by this fall. Our therapist is doing really great at teaching me how to work with him so we are making progress.

Lane loves to be outside now that we have tackled his allergy problems. He is a grass picker lol! He takes after us on his love of the outdoors.

Well this is a short update but that is a good thing in our life! Some recent pics of course too!

Dear Mom...

Dear Mom,
I learned a lot of my own parenting skills from you. You taught me so many things about being a mom. I never really get the chance to thank you for those things. Thank you for always putting your wants last. Thank you for sacrificing something you needed for something I wanted. Thank you for always protecting me from things I did not know were threatening. For always pushing me into God. For making me come home at an early time. Thank you for never accepting a B on a grade card. You knew I could always make A's. You instilled the values of love and strength in me. You showed me how to be strong and that has helped me so much in being a mother to Lane. Thanks for dropping everything your doing to come over so I can have a break and leaving work regardless of the punishment to meet me at the er with Lane.Thanks for always listening to me as I vent to you. Thank you for your encouragement. I am sorry for all the times I hurt your feelings growing up. I never really thought about what I was doing or saying. I grew up fast, I am sorry now. As a mother I know I don't want Lane to grow up and I was always in such a hurry. I want you to know I love you and appreciate all you do. You were there when I had Lane even though that meant leaving my brother three hours away for awhile. Thank you for staying and comforting me while Lane was at another hospital with his dad. I really needed you at that moment. I could spend all night listing all I am thankful for. I guess I really just need to thank God for giving me you as a mom. I hope you had a good day today. Happy Mother's Day. Remember I will always love you Mom.

Thanks Mom,
Love Danielle