Finding humor the best way we can

It's been one week post surgery and Logan is doing fabulous. We were worried that surgery would set him back but it has made him stronger! One ball down makes him more of a man (gotta find humor in these things). We will see if this testicle survives, it's usually a 80% chance it will, and schedule the 2nd surgery for 6 months from now. The 2nd surgery will be more extensive. They will have to make a cut in his abdomen to extend the blood supply for his right testicle. I'm not looking forward to this surgery but I'm sure he will do great. :)
Logan has been making lots of noises, and is back to saying mama...which makes my day! He is also sitting up unassisted for 5-10 seconds, which is amazing. It shows his strength and determination every time we try it. Sometimes he likes to be silly and lean his head over so he can fall. He thinks it's so funny and laughs.
Tomorrow Logan finally gets his wheelchair stroller and gets his big boy bed on Thursday.
Things are looking great around here. We take a week long beach trip in less than a month and are so excited that we can enjoy it this year and not be worried about Logan being unstable. I just can't wait :)

The BEST mother's day gift possible

Being a mother is a job, but being a mother to a MTM boy is special job. We are super moms. We have had crash courses in respiratory therapy and in nursing. When know when something is wrong immediately and we know more than most doctors. Logan has a life threatening disease. Some days that is hard to take in, and other days it's not even thought of. Everyday with our little guy is a gift. Seeing him thrive and get stronger is very rewarding....almost like winning the lottery. I know that we are doing all of the right things to see the achievements that we have. Being a mother is so rewarding, but being a MTM mom is 1st place in my opinion.

Yesterday Alison Frase came to visit us. Alison just has such a sweet spirit about her and is so compassionate about our MTM kids. We learned from Alison about these colonies of MTM puppies that were born from affected MTM female dogs. These puppies at 17 weeks were so weak that they were dragging their hind legs and not able to eat on their own. They were pretty much to weak to live, like many of our MTM kids, and passing away. Then another litter of pups were born. These puppies were given this gene therapy injection at 9 weeks old, and 2 weeks after this injection, these pups muscle mass improved by over 200%!!!! These puppies were running around like nothing was wrong. I saw the videos myself. Everything about these dogs improved. Able to run, eat, and respiratory insufficiently was no longer a issue. The kicker to a of this is that this could be a ONE time injection for our kids and improvements are seen in the first week of injection. This is going to cure our kids and change the world of neuromuscular disease. If hearing this was not the best mother's day gift, I don't know what was. 2 years is the hope for clinical trials.... all we have to do is keep the funds coming in.
Brian and I have discussed having a HUGE benefit to help raise funds for the Joshua Grade Foundation next year. If you would like to help, please message us.

We are on our way to chapel hill for Logan's surgery. I will keep everyone posted.

Sitting up unassisted!

We love our physical therapist Kristin. She is on vacation this week, so one of her coworkers came and worked on Logan this week. Lesley saw Logan when we first started PT and he was very weak. She was totally surprised by Logan and the things he is doing. Well, she was sitting him up with support, and said hmm I wonder if he will sit up unassisted? Lesley let Logan go only holding her hands by his side in case he fell over. Logan sat up unassisted for a few seconds!!!! Huge milestone!! He still has a long way to go but kicking butt along the way!

We are getting ready for Logan's surgery on Monday and we are very anxious to see how he does with anaesthesia. Sunday we have a special visitor on Sunday. More to come on that later :)

The pinch heard across the world

As a mother, it is hard to just let anyone care for your child. I have a hard time letting new nurses that no absolutely nothing about the disease or how to care for Logan. I know, they must learn, but I'm his mommy and if I don't like something that's being done, I will speak up. We had a new night nurse practitioner that started about a month ago. She has been struggling with keeping Logan clear and clean up her messes, so I asked the nursing company to let her train again with one of Logan's other night nurses. The other night Logan was very junky and she yet again struggled with clearing him out. That morning Rene had a hard time clearing Logan (which is not unusual when we have this night nurse). When Rene went to do Logan's weekly trach change in this picture below is what she saw. The night nurse pinched Logan's neck with the trach tie and this was the end result. This has happened before, but this is by far the worst. What I don't understand is how she couldn't be aware of this all night? I'm so mad that words can't even express it.

This is exactly why I have a hard time trusting new nurses.