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

a couple of pictures

Just realized I have not added any pics lately so here are a few more...


Easter..


A sucker in the car...not mommys best idea!

Mothers Day with an update!

Update- Lane is doing so well. We finally made it home from the hospital and got over the pneumonia. Sorry it took so long to update you. I have been finishing up this year of nursing school and am glad to say that I am done for the summer. Hopefully I can get some more blogging done now! Lane started pulling up a few weeks ago. He has a little table that he pulls up and stands there to play with. It is such a miracle watching him stand. He has been playing catch up developmentally lately. In the last few weeks he has learned to wave, clap, play peek a boo, and laugh when you tell him no. He is just blossoming everyday as he learns new things. Well this is short as my brain is working to fast to keep up. Hope it made since. I will get to a better update soon!

Mothers Day- This mothers day is extra special to me. At one time in the darkest of days after lane's birth, Drs were telling me I would spend this Mothers Day childless. It amazes me that they were so very wrong, even though they were convinced they were so right. As it is I have had a wonderful day with a beautiful baby boy that happens to be the best gift ever!

I would also like to say that I have had many people message me about how great a mother I am! Thank you but I truly an just an ordinary mother. I may have a busier day than some and do stuff most people would have nightmares about but us special needs mothers are just like all moms. We get tired, we have breakdowns, we need breaks, we have moments where everyone drives us crazy! Sometimes on the outside we seem strong, but inside we are crumbling. We love our kids and cherish every moment with them Just like all of you!

So I ask you all one thing, enjoy your kids and be thankful for them not only today but each and every day! Happy Mother's Day to you all.

Here is a pic of Lane standing. I am just holding his ankles to keep them from rolling since he doesn't have braces yet!

pneumonia

Hello everyone,
Not the update I wanted to give you all but we are back in the hospital. Lane started having a lot of secretions a couple days ago that led to a fever and a cough. We decided to bring him to er last night and he has pneumonia so here we are admitted to the hospital for a few days. The nurse came in and said that he has some bacteria in his blood so we are waiting to see what comes of that. Please keep Lane in your prayers for a quick recovery!

1 year old...

Lane turned one yesterday. It is so hard for me to believe a whole year has passed. This year has been filled with extreme hardships and sorrow but also with joy, success, tons of love, happy tears, and the great enjoyment of our precious little boy. Looking back I never could have imagined how amazing Lane would be. We started his life with hard news. Drs saying he would not live past six months, had severe brain damage, and other abnormalities was hard to swallow those first few days. Turns out we didn't need to "swallow" any of it. I wish those drs could have seen him yesterday. Laughing, opening his presents, and eating his yummy cup cake. Life is amazing with Lane it. God granted Roger and I with a gift far beyond our imagination. He gave us Lane knowing how special he would be. Last night I rocked my baby boy to sleep. A year ago I longed to hold him and thinking of how much a miracle he is brought tears to my eyes. Lord I'm sending up a special thanks to You for choosing me and Roger to be Lane's parents. Every child is special, but I think we got an extra special one. ;) Now for some pictures of course. Lane's party is this weekend so I will give some pictures then too! I can't believe my baby is 1!!!!!
P.S. Thank you all for your support of our family for a year!

First Born   



In NICU


First time being held...

First Outfit...

Trach..

Halloween...

christmas morning

sitting!

Big Boy 

bath time

birthday cupcake

                         

Mommy and Lane..

It's been an amazing year and I am certain the rest of our lives will be just as amazing! We love you baby boy, thanks for being so awesome!
                        

quick update

This is going to be a real quick update with some BIG BIG news!
A. I passed med surg...yay me. One step closer to graduating nursing school!
B. Lane is doing great. He is sitting up really well and cooing around his trach like a mad man!

and drumroll please......
C. DECANNULATION- thats right. May 10th if all goes well Mr. Lane is going to be trach free for good!!! We have a bronch on april 15 to check the vocal cords and if that goes well we are all clear for the 10th! Can we say PARTY for Mr. Lane

Lane will be turning one very shortly and o my what a first year of life. I will post a proper update on that coming soon!

Also we are walking in april for the march of dimes. Our team is now accepting donations. Go to http://www.marchforbabies.org/ and search for Lane's Warriors if you are interested in helping us out! Thanks for reading and again proper update is on it's way!

Fairy Tales

I remember as a little girl dreaming of being grown up one day. Being a doctor or lawyer and marrying my prince charming in a huge ceremony. We would buy a huge house and have adorable little kids running around. Life would be perfect, just like in the movies. Rich and successful, what everyone wanted! It was a fairy tale I, and every other little girl, kept with me for a long time. My fairy tale didn't include anything short of perfect. Hey, it was my dream.

My fairy tale did not make room for lifes ups and downs. It would be the way I thought in my mind it should be and nothing else was an option.

My fairty tale did not visualize marrying my high school sweetheart before finishing college, having a baby at nineteen (let alone a special needs baby), struggling financially at times, or having any other hardship.

Fairy tales are about:

 Love

Laughter

Kisses

Friends

Family

Being Mad

...and Happy

Struggles...

Success

Chillin' Out

Good rest after a hard

days work..

Simply enjoying life

to it's fullest!

Turns out I got my fairy tale!