New video of Lane...

I am posting a link to a new video I took today of Lane playing ball with me. Lane is now 3 1/2 years old, and he is living and thriving with full trisomy 18! You will be able to tell by the video that Lane is completely aware of what he is doing. Enjoy...

http://www.youtube.com/watch?v=MNgBISBU1Aw&feature=share

New Awareness Video for Trisomy 13/18

"We Are The World Of Trisomy 13 & 18"...created by Jill DelSignore (Trisomy 18 Mom)

http://www.youtube.com/watch?v=lcBHjrXjvdE&context=C44d08ddADvjVQa1PpcFOQJccjGwgB5SkK3vzYuJhgqcn-2BCtfLc=

Catching up on my blog...AGAIN.

Well...it's been a couple of months, so I'm back to catch up on what has been happening. Lane will be celebrating 39 months tomorrow! He's now officially 3.3 years old! And...Lane was in the news in February...WFAA (Channel 8 news) came out to our house and interviewed us about Lane and Trisomy 18. This is the link to the story http://www.wfaa.com/home/related/Parents-fight-for-sons-medical-rights-138485294.html. It was such an awesome experience to be able to share our story. Also...Lane's Dad got his story published online, here is the link http://www.lifesitenews.com/news/trisomy-18-bella-santorum-and-the-truth-about-miracles. So many positive things have been happening in our lives! I'll be back to share how we have been celebrating Trisomy Awareness Month! These are some photos taken by the WFAA channel 8 news crew...

My witness to a deeper understanding...

I knew while I was pregnant with Taylon, that I had to start preparing for how to handle having her and Lane at the same time. I knew that the best thing to do would be to have her in Lane's area (in the living room) and by picking my battles with her in learning right from wrong...from the very beginning. Not like all babies don't, but the difference is that my battles meant teaching her to be careful around Lane and all his equipment...especially the oxygen machine. When Taylon first started crawling (on Thanksgiving) I felt like the only thing she wanted to play with was the oxygen cord, time and time again all you heard from everyone was "NO" with a warning and then off to time out she went (time out being the portable crib). I knew it was important to do this, even though at times I was wondering if this was ever going to end. At 9 months old, she doesn't mess with the his equipment anymore unless she is very sleepy (my clue for nap or bed time). The repetition has worked, and when I think about it...I'm impressed that she gets it at this age!

However, today I witnessed how much Taylon truly does "get it" at 9 months old. This morning the nurse laid Lane down on his blanket on the floor so she could go get something. I was on the other side of the living room playing with Taylon. When I noticed the nurse leaving the room, I crawled over to Lane to give him some Mommy kisses. I looked over at Taylon, realizing she had been watching me...and then she turbo-power crawled over to us. As she got closer, she slowed down...so I didn't do my automatic extended arm to her with the "be gentle with Bubba". I wanted to see what she did, and I witnessed the most beautiful thing from my baby girl. In the crawl position, Taylon slowly moved over near Lane's head...AND GENTLY KISSED HIS FOREHEAD WITH HER OPEN-MOUTHED KISS. It took me by surprise, I was like "Oh Tay Tay...that is so sweet to give your Bubba a kiss like that", and then she did it again. It was a moment I wish I had a picture of, but the personal memory of how gentle she was with him is something I will cherish forever. I look forward to how their relationship will build from here...

Introducing Taylon...

So...I found out I was pregnant right before I stopped blogging, and that was due to the emotional stress that Lane coding had put on me. I've always gone to hide in my shell, but I'm working on opening up with my emotional journey this year. This is my journey with Lane, and I will share it from my perspective. I'm taking today to introduce Lane's little sister, Taylon, born on March 31...she is 9 months old now. Here is a little slide show...

This photo was taken by the photographer at the hospital.

This is a picture of Lane & Taylon meeting for the 1st time on April 1st when we arrived home from the hospital.

Lane got a haircut and has a big brother smile while holding his little sister, Taylon.

Lane and Taylon snuggling together.

Taylon, Daddy, Lane, and Bailey

Lane and Taylon hanging out on Easter 2011.

Lane during occupational therapy showing his 2 month old sister how to get in a crawl position while Taylon was having tummy time.

Lane giving his 4 month old sister, Taylon, big smooches.

Lane & Taylon (6 months old) chilling out in the recliner.

Taylon (8 months) and Lane sitting at the dining room table patiently waiting for the Thanksgiving feast. Also, Taylon started crawling on this day.

Taylon and Lane at our family Christmas party waiting to open presents.

 

Taylon...Christmas 2011

 

 

Celebrating 37 months with Lane...

Wow...here we are 37 months later, still being blessed with our precious miracle!

Lane is feeling a lot better today, he's been congested since Monday. I've been able to wean his oxygen to 1 liter from 1 1/2 liters...his normal is .5 liters. It's a start though, and I'm so glad we have been able to fight this at home!

Lane graduated from ECI (Early Childhood Intervention) when he turned 3 on the 8th of December, and is now a student in school. He was suppose to start (home bound) school this last week, but I canceled due to him being under the weather. I have his teacher scheduled to come out to the house tomorrow, so I'll have to take a (first day of school picture).

I wanted to post Lane's Christmas picture today, since I didn't start blogging again until New Year's Day. He's adorable little smile is priceless...

Also, I wanted to post Lane's Santa picture...he wasn't sure what to think.

Taking ahold of the congestion...

Lane is still congested today, but so far we still have control over it. The night was uneventful besides suctioning his nose, Albuterol treatments, and the shake vest. I wanted to post a picture of the shake vest so you would understand what I'm talking about.

This is the shake vest that we were told about at Lane's last hospital stay. He was rushed to the hospital by ambulance because he was requiring so much oxygen that we just didn't have the equipment at home. I mean...don't get me wrong, we have quite the set-up, but our home concentrator couldn't handle what Lane needed to keep his o2 (oxygen) up. This is a picture of Lane at the October 2011 hospitalization.

When we arrived in the ER, Lane was requiring 10 liters of o2, and by the time we got transferred to a room...he was at 7 liters. We had a difficult time weaning him once he was under 5 liters because from 5 to 3 liters...it goes from a face mask to a nasal cannula. If you go under 5 liters on the face mask then it's unsafe because his body could get too much Co2, and it's not safe to go over 3 liters with a nasal cannula...because it blows to hard into the nose. Lane was admitted for more than a week because we were having a difficult time keeping him stable. We kept him on full feeds of formula and with the mixture of the antibiotics he was on, he was having explosive bm's. It was hurting him so bad, that after a feeding...we had to fight to keep his o2 stable, it would plummet drastically! I finally figured out that we needed to half his formula with another half of Pedialyte...then we were finally able to stabilize him! We were released after 8 days, and took with it the "new" knowledge of using the shake vest. We got the prescription for it from Lane's Pulmonologist, and it has helped Lane to keep his lungs clear. So...I'll be praying that this new device will keep Lane home this time!