Never say never

He won't be able to sit up, hold his head up, talk, eat, or walk. Those are things we were told for so long. No, not anymore. Past docs that see Logan now are amazed by the strength of this boy. How inspiring is that? It's amazing how inspiring a 12 month old can be!
Logan got his theratog vest on Friday, and I was amazed by how much it helps him. For the first time EVER, I could hold Logan just supporting his back  a little bit and didn't have to hold his head up. He actually loves it too! This could eventually be the key to Logan sitting up on his own.

A PROUD mama's testimonial!!

I haven't been able to update the blog since Logan's birthday. It has just been total chaos. His party was on the 9th, and it couldn't have been more perfect. We had such a great turn out for his party, Mickey Mouse everywhere, great food, and great cake. It's amazing to see the amount of support that we have all in the same building. It was overwhelming, and beautiful. It's amazing that a one year old can inspire so many people. Not many parents can say that.
We had Logan's birthday party at the Greensboro Moose Lodge because we had a feeling it would be a big turnout. There were about 150 people in and out for the party. Logan loved all of the attention. He loved it so much, he took a nap in the middle of his party. Logan got to eat some icing off of a cupcake, which he LOVED! We were able to donate $500 to the Joshua Frase Foundation, plus other donations that were done over the internet and by mail. Helping the JFF fund research for a cure, is the best gift Logan could possibly have.

As Logan's parents, we want what any parent wants, and that's the best for their child. We have to fight with people sometimes to get what we know he needs. Once we get it, and Logan shows them what he IS capable of doing, they had wished they would have done it sooner. There are NO LIMITS with this boy. We took him to UNC today for a passy muir valve trial. For those of you who don't know what that is, it's a valve that is placed on the end of the trach that allows Logan to vocalize. They were very nervous about doing this, because they thought Logan was such a medically fragile child. Let's just say that Logan gave those speech pathologists, and RTs a run for their money. They first put the passy muir in line with the vent tubing. Logan immediately started smiling and kicking his feet. He vocalized a little bit, but they were worried his vent settings might change and he couldn't tolerate it. After being on it for 15 minutes and very impressed, they decided to try it without the vent. Logan is doing 2-3 hours off the vent during the day now, so it was no issue taking him off. Logan was on the passy muir for 20 minutes and still going strong. He had no tracheal secretions off of the vent, which was really surprising for Rene and myself! So noises won't be anything that's going to happen right away. It will happen more often as he gets use to it. RT said that the passy muir will not only help him come off of the vent much faster, but it would also help with swallowing. They are being very aggressive with Logan. A swallow study is in the very near future. At least once the swallow study is done, we will know what he is capable of doing, and what speech needs to work on.
Logan is getting noticeably strong to every one that sees him. He is able to make noises on the vent, without a passy muir, he can make a noise with his mouth and tongue, he has a very strong bite, he is attempting swallowing and sometimes completing a swallow, he can raise his arms up in the air, hold his head up unassisted for 60 seconds, sit up assisted for as long as you help him, he is starting to wiggle his butt, he can kick,  he can lift his legs in the air and grab them with his hands, he can clap, he can say "mama" and "dada", he's off of the vent 2-3 hours a day, and now we can say that he can tolerate the passy muir better than any of us thought he could. And to think, these are things we thought he might not ever do. The littlest things are a huge celebration to us.  The boy is full of endless possibilities!! Once gene therapy is in place, I cannot wait to see what he can do!
As first time parents, we don't ever think something like this could happen to your child. We never, in a million years would have imagined having Logan being this way. But this is Logan. He is his own, unique, individual, and we are VERY PROUD that he is our son. I use to say that Logan is disabled, but I have learned that he is not disabled, he is DIFFERENTLY abled.  I use to watch people as they would walk by us and see Logan and all of his equipment, but the more I think about it, I stopped caring. They are just curious, and you would be surprised how many people see through all of the equipment and see Logan for the sweet, determined little boy that he is. How could we not be proud?

Okay, okay, I'm done gloating! God bless!

Mickey's trach

Mickey had his trach placement yesterday. Logan was comforting him! Mickey is recovering nicely and will have his gtube placed shortly :)

The big ONE!

Logan turned the big ONE yesterday! I remember a year ago, we were so excited to finally meet our son, but very nervous at the same time. I had developed polyhydramnios (excessive fluid) that last month and couldn't feel Logan moving. I had weekly ultrasounds because I couldn't feel him, he was breech, and the fluid kept building up. My OB was concerned, but there wasn't much we could have done, but just wait until 39 weeks and take him then. I was miserable, my feet were so swollen they were purple. At 39 weeks and 1 day, we had Logan via C-section because he was still breech. They prepped me in the OR and Brian came in. It was time to have our baby boy. They suctioned over 4.5 liters of fluid out of me....talk about feeling relief! It seemed like forever before they finally pulled him out. I remember Dr. Lavoie saying "Are you guys ready to meet your baby?"  Of course!!! At 5:36pm she pulled him out, but there was no cry, no nothing, just silence. The put him under the warmer and started working on him. That really felt like eternity. Brian looked over at me, and I knew then, something was really wrong with my baby. That operating room was so quiet you could hear a pin drop. I couldn't contain the tears anymore. They finally got Logan breathing and he was brought to me where I got to kiss him for a second and then we was rushed to the NICU. They immediately put Logan on cpap. Meanwhile, I was wheeled into recovery where I was hysterical. I knew they wouldn't let me go up and see Logan until I started getting some feeling back in the my legs. I just laid there crying, and praying for my legs to move so I could go see my baby. Finally, after 3 hours in recovery, they wheeled me up to the NICU on a gurney so that I could see Logan. There he was, laying under the warmer, so lifeless, and no color to him. He was so tiny...all 5 lbs. 9.5 oz of him. That night I got my feeling back in my legs by 3am, and Brian wheeled me up to the NICU to see Logan. I got to hear him cry, it was very weak and high pitched, but it was a cry. It was the happiest day of my life, but also one of the scariest.

We had such a great day yesterday. I woke up hearing the sweet noises of my baby boy, which is becoming more common every day. He was laying in his crib watching his Mickey Mouse clubhouse and nurse Rene was getting him ready for his bath. Rene had bought him some balloons, which he loves right now. Logan grabs the strings and tugs on them making the balloons float around. Rene takes him off of the vent while he's getting his breathing treatment and bath. Logan doesn't mind it at all, since he is distracted by Mickey and balloons.
Logan's case manager came out to the house yesterday and did Logan's recertification for his CAP/c, which is a Medicaid waiver program that pays for Logan's nursing. CAP/c is also paying for a generator which was installed last week. This generator will power the whole house, minus a few little things. They also gave Logan is HUGE sucker, which he wanted to devour, but mommy wouldn't let him eat it all! It was almost as big as him!

Carolina Mobility came out yesterday also. Logan got fitted for a new bath chair and a new kid cart with every accessory he could need. These should arrive in 3-4 months.

Overall, we had a great first birthday...even though daddy had to work.

We are so blessed that Logan is here on his first birthday after all the close calls we had before he was trached. Traching Logan was very scary for us, and a huge change for all of us, BUT it has saved his life!!!! It has made his quality of life much, much better. He's a strong, resilient little guy, and always smiles. How could you be sad about that? He's here, he's happy, and he's getting stronger. What more could we ask for?

Saturday we are celebrating Logan's birthday with our family, friends, coworkers, and community! Thank you to everyone for the prayers and support!