Merry CHRISTmas!

Wow...it has been a while since I have update this blog. My apologies, but it has been a very crazy, hectic few weeks with the holidays. Everyone seems to be doing great! Logan has been tugging on his ears a lot lately, but we are hoping it's just the teething and not an ear infection!

Logan and Santa

Logan has been meeting so many milestones here lately. Everyday seems to bring something new and exciting that Logan's nurse Rene and I notice. Logan use to not be able to hold his knees up while lying on his back, but today while working with him, he was able to keep his knees up for a good 8 minutes before they went flopping down. These things are huge, and something for us to always celebrate. We have also been sitting him up more with the help of his theratog wrap, which straightens his spine up, so we have noiced an improvement in his trunk strength. Head control is still a huge battle but we will get him there! Logan is arching his back, and smacking his lips more like he's kissing you, and still gives us the sweetest, most adorable smiles, that make your heart melt! He is getting so big! He is 18 lbs 5 oz and about 30 in long! He is outgrowing his clothes so fast. 
In less than 6 weeks, my baby will have his 1st birthday! Where has the time gone? This was such a whirlwind of a year. From thinking we were having a perfectly healthy baby, to delivering him and our world being turned upside down. Waiting for weeks and weeks for a diagnosis, and hoping and praying for the best. The amount of prayers this boy has gotten has brought him through some tough situations. But, I wouldn't change a thing, because in my eyes, he is so perfect, and who can say that a 10 month old inspires them, and gives them a new outlook on life? We thought our lives were turned upside down, but to me, Logan just made my life more complete, and inspires me more and more everyday! We are having Logan's birthday party on Feburary 9th from 1-4pm and we would love for everyone to attend (more to come on that later). It is going to be a huge celebration of Logan's life and accomplishments. Please, no gifts :) If you would like to give anything, please consider a dontation to the Joshua Frase Foundation in honor of Logan Forbis. We got news last week that researchers are ready for human clinical trials! We will find out more next year, but we are soooo close to a CURE, but just need the funding, so please consider :)

We all had a great Christmas! There was nothing better than waking up Christmas morning to a smiling baby! Forget all the presents, Logan just wanted the wrapping paper! He got so many toys, I think he is set until next Christmas. Logan did get a new Britax convertible car seat, that will last him a long time. It reclines to 45 degrees and good head support, which is what he needed. Logan also got a portable DVD player to go in the car so he won't hate traveling so much. Oh, and Logan got a kid cart last week! We are borrowing this one right now to see how he does with it, and eventually order one of our own for Logan. We just need to get the bathing situation fixed. Right now, he just gets sponge baths because he is too big for a infant bath tub, and our spare bathroom is not equipped for Logan and all of his equipment, so I'm not sure what we will do. Medicaid is paying for a generator to be installed in the next few weeks, so if we have any power outages, we will be ok!

Overall, this year has had many ups and downs, but we are past that, and moving forward with this amazing little boy! What is little blessing he is!

We hope everyone had a great holiday season!

Sweet little noises!

Logan a new brand of trachs last week that are thrown away after a week of use. It is a smaller trach so it allows Logan to make some sweet little noises. He loves this new trach and his ability to vocalize some.

He is also rolling over really well and lifting his arms and legs and grabbing toys with no hesitation. Logan is arching his back, shrugging his shoulders, dancing, and shaking his head yes. It is so much fun to see him doing all these new things.

We went to see Dr. Alexander at UNC physical medicine and rehab and he was a fantastic doctor. He ordered for Logan to be fitted for a kid cart, which will hold all of Logan's equipment and support him much better. We also got him a convertible car seat  that is front and rear facing and also reclines. Dr. Alexander also ordered for Brian and I to have a date night. That's something Brian and I haven't had in forever. It's hard when we have respite but we can't use them because there are no nurses available. Maybe one day soon!

We are so excited Christmas is around the corner and we are feeling so blessed!

A trip to the ER

Logan had a rough night last night. He was very junky all night and in to this morning. The night nurse did 2 breathing treatments and when the day nurse Stephanie came in this morning he was still junky. She did a breathing treatment at 8:30 am and again at 10:30am and his secretions were so thick we weren't getting a lot out. After the treatments and chest pt, and having to put him on oxygen for dropping so much, I decided to call the peds attending at Moses Cone. They thought it would be wise to have him cone in and be transported by ambulance. Once we got him in the emergency room, he got a chest xray which looks good, and trach cultures which usually takes 24 hours to grow so we should know tomorrow. Logan is still on anywhere from 0.5-2 liters of oxygen and is requiring lots more breathing treatments and chest pt. Earlier tonight we noticed a bluish green tint on his gauze around his trach, which is usually a sign of pseudonymous....a type of infection. But the want to wait until the culture comes back to see if it's worth being treated with IV antibiotics or a nebulizer antibiotic or something through his feeding tube.
He took a good 2 hour nap today and woke up in a somewhat better mood, but he is still not the happy Logan we know. Whatever it is, we hope they figure it out and get it treated soon. Thanks for all the prayers. We know our little warrior will pull through this minor bump in the road.