What a year! 6 days until we celebrate!

6 days from now Logan is going to be 1!! Where does the time go? It seemed like just yesterday we finally got to come home from the NICU after 10 weeks of waiting and waiting. We were trained on how to take care of him and what to do in case of blue spells (which we had a whole lot of), and sent on our way. Doctors basically told us, go home and enjoy your time with him. Neurology made the comment when he was 4 months old that they were still surprised he was still alive. How is it that doctors can say these kinds of things? They have no idea what kind of life he was going to live other than basing it on the literature they read. I am ashamed that I felt this way when Logan was born, but I think my feelings were perfectly normal. I was mad at the world. I wanted to know why God was punishing us for giving us this sick child. I was hurt and I was scared to love him. But as time went on, I learned that I wasn't scared to love him, I was just scared to lose him. I was scared to feel that empty, alone feeling. I know any parent could feel panic when the thought crosses their mind of losing their child. It's a sickening feeling, and I had it all the time.  There were times that we almost lost our precious baby. But I turned to God, and I prayed and prayed. He answered my prayers every time, and I knew then not to question the things he does. It all happens for a reason.
 
Logan is a miracle. He was born in to this world with a purpose, as any person is, but his purpose was met from the day he was born. He taught me that life isn't about the materialistic things, cherish each moment, tell everyone you know that you love them, pray unconditionally, don't worry about what others think, and always keep a positive attitude. He didn't only touch my life or Brian's life, he changed everyone who met him. His beautiful smile, big brown eyes, and sweet personality make you fall in love with him all over again. For a child that has gone through so much in this first year of life, he always smiles and doesn't have a care in the world.  He is my first born, and even though things didn't go like we thought they would, he is our perfect little boy. We didn't get to experience Logan coming down from the nursery, changing his first diaper, or his first bath. Those things really bothered me at first, but then I realized we had bigger problems. Being told that your child may not ever sit up, crawl, walk, talk, or even eat by mouth devastated me. Where were never going to be able to experience those exciting times every parent dreams of. But, as time has gone on, and he has gotten stronger, those things don't matter. Because I know that Logan will accomplish his own goals on his own time, and there is no time limit for that.

 All those tubes and wires don't mean a thing. It's a part of Logan and it's apart of his and our life. They don't make who he is. One thing that has amazed us with our community is they see past those tubes and wires, and see Logan for the amazing little person that he is.
I was asked not to long ago, "What gets you through the day, and how do you deal with it?"
My answer was as simple as this:  "Spend 5 minutes with Logan and you will see."
I don't think I could have said it any better.

The past year has had many ups and downs, but to see Logan and how well he is doing now, makes everything worth it. He's growing and getting stronger everyday, and he's so incredibly smart, we are just nothing but blessed.

Thank you to everyone that has followed our journey and supported us along the way. We couldn't do it without all of the love, prayers and support.

God bless :)

Logan's trip to UNC

Last week we took Logan to UNC for a check up with the pulmonologist and ENT. Both doctors were so impressed with how well he is doing. ENT wants to do a bronchoscopy in the spring to check out his trach from the inside and to check on scar tissue and make sure there is no infection in his lungs. We are hopefully going to get Urology involved at the same time and have Logan's surgery to drop his testicles at the same time he is getting the bronch. I hate for him to have to go through yet another surgery, but this needs to be done so there are no risk for testicular cancer.
We are waiting on appointments to be scheduled for a swallow study and a passy muir valve trial. We think Logan is so ready for a passy muir valve. He is making noises over the vent now and we are loving it! Every now and then we can get him to say "mama".

Yet another infection

Logan is fighting off infection around his trach site again, but also has yellow oral secretions. I took it upon myself to get in touch with the nicu attending at Cone this morning, told them what was going on, and was stern that Logan was not coming to the hospital. She was not easily persuaded because she had never had Logan before, but I explained that we were not risking putting him in the hospital for a infection we could fight at home. The doctor agreed to let Logan's nurse get a tracheal aspirate specimen and we would turn in to the lab and see what grows. So we are waiting on labs and being extra cautious. Logan's sleeping a little more, has more thick secretions, an odor, and not as playful. I think we caught it soon enough.

Missing nurse Rene

Logan's day time nurse Rene left yesterday for New York for a week. So, we are having fill-in nurses until she returns. Boy, the nurse we had today was something awful. She ran Logan's 9am bolus feed as a continuous feed and it just kept running and running. We sure do miss you Rene, but we are so glad that you get to see your kids and meet your new grand daughter! We have Katy covering tomorrow, which was one of Logan's primary nurses at UNC, then we have Stephanie this weekend (yay!), and Lynn on Monday and Tuesday during the day. Today was just a little bumpy.

We have become so attached to all of our nurses that care for Logan. I'm sure the nursing company doesn't show much appreciation for their nurses, but we are so grateful we have some good nurses that we can trust to be in our home without us and care for Logan. So, thank you to all of our wonderful nurses!

Rene
Lynn
Stephanie
Katherine
Katy
Eyssielee

Trials off the vent

Last week I talked with Logan's trach nurse at UNC and convinced her that Logan was ready for trials off of the vent. She went for it, and sent the orders to the nursing company so that Logan's nurses could do the trials. That was the best convincing that I have ever done. He was so ready to come off that vent some during the day.  Logan has gotten so much stronger than what he use to be. He has changed his vent settings on his own. He doesn't need all of the pressure of the vent or the breaths. He does most of the work on his own, except when he is asleep.
Trials are going great. We are suppose to put a thermovent on his trach when we do these trials. A thermovent helps keep the humidity in his trach, and allows him to still breathe through it. Logan hates these thermovents! Without one, he can do 20-30 minutes off the vent, but with the thermovents, he won't do more than 15 minutes before he is mad. But, today we tried a different kind of thermovent, is he likes this one a lot better, and stayed off the vent 45 minutes today. GOOO LOGIE!

Weight gain is still going great. Logan is up to 19 lbs 10 oz and showing every bit of it!
PT went really good last week. Kristin, Logan's PT got him to hold his head up and turn it left and right with minimal support for 30 seconds. Well, since then, I have been sitting him up on the couch and Logan has been putting his head forward and holding it up on his own without any support. Months ago he never would have tolerated this. It's so amazing to see the progress that he has made just in the past few weeks. He is one amazing little boy.

We go to Chapel Hill next week for Logan's 3 month check up with pulmonary and ENT. I'm excited for them to see the progress he is making. Logan could possibly be having a swallow study and a passy muir valve trial when we go.  Wish us luck!

Just a little "fluffy"

Logan's nurse Rene says Logan isn't fat, he is fluffy! He is by no means fat, he's just long, and skinny, and finally starting to fill out. He weighs 19 lbs. 1oz, and he is almost 30 inches long. He is growing so fast, and I can't believe he is 11 months old! He has 12 teeth now, and is cutting 4 molars!

All of Logan's nurses and his respiratory therapist that comes out to the house once a month to check the ventilator, are convinced that he is very much ready to be weaned from the ventilator. We can take Logan off of the ventilator for 15-30 minutes at a time and his o2 levels don't budge. We go see his pulmonologist at UNC on the 24th and are hoping that she will start weaning his vent settings or start doing vent trials. We also want to request a Co2 monitor to see what his Co2 levels are before and after a vent trial. Keep your fingers crossed that we can start getting this boy off of the vent some during the day.

On February 9th we are having a huge birthday bash for Logan. 10 months ago, we were wondering if we were going to make it is far, and now we are getting ready to celebrate this amazing little guys 1st birthday. Logan is doing so great right now, and is the healthiest he has been ever and we not looking back!

Keep Logan in your prayers over the next few weeks :)