Stepping out of MY shell

I am in no way ashamed of Logan. He makes me so proud. BUT I hate the looks we get out in public. I hate how people stare at my precious boy for all of his equipment and entourage of people. What annoys me most are the stares and head turns we get when the suction is turned on. This is something he has to have to survive.  Most of it is just curiosity, I know, but as a mommy it's hard to see Logan get these stares. I want him to be seen like anyone else, normal. Because his life is normal to us.

  I am a total germ-a-fob when it comes to Logan. I know that I cannot always protect him from every little germ, but I do Lysol and clean the house quite a bit. Anyway, after leaving Logan's doctor appointment yesterday, something hit me. We have NEVER taken Logan out to eat with us. Never. I use to cry when Logan came home from the NICU and we couldn't take him with us somewhere. I guess I have gotten use to being a hermit and keeping Logan and myself indoors a lot. But I have to say I have come out of my shell some. He has been camping, to the beach, and a few other things. But this fall Logan will attend Gateway and I can't hide all those germs from him. I have to let him get sick, and be exposed. I never want to see my baby sick, but I also can't keep him sheltered either. I want Logan to experience life and see places and things, and that started yesterday. Logan, myself, Logan's grammy, Nurse Rene, and Nurse Angeline went out to lunch. It felt great to have him out with me, and not wonder what he was doing at home. Logan threw his toys on the floor, did a little dance in his chair, and played patty cake for us. The perfect lunch.  For once I didn't care about the stares and head turns when the suction was cut on.  We had a great lunch and Logan really enjoyed the new environment. So from now on, I'm not going to shelter Logan. I want him to live his life to the fullest in whatever he is doing.

Today we lost a great nurse. Rene has been with Logan since the week he came home from the hospital. When Logan came home he was so weak and couldn't even come off the vent for a few minutes. Now Logan is really trying to sit up unassisted and is off the vent 8-10 hours a day. She was incredible with him. We are really going to miss Rene, but we know she will be back one day.

Yesterday Logan had his appointment with his GI doctor. He was a little concerned with Logan spitting up what looked like coffee grounds. He said it was definitely blood, and it's probably irritation from the severe acid reflux. So, the plan is for Logan to be started on a new med which will hopefully prevent him from throwing up and get his gut working better, in conjunction with his reflux meds. Logan will also start taking miralax everyday to help with the constipation. We go back in a month and will probably schedule a upper GI to see what's going on, and if things don't improve, then Logan will probably have to have surgery to have a Nissen done. Hopefully the meds work and we don't have to put him through yet another surgery.

Friday we take Logan to Gateway for his intake and to find out when school will start. I'm very excited for him, but nervous at the same time. I hope his little body can tolerate it.

Until next time...God bless!

 at lunch :)

It's been way to long...

It has been way to long since I have posted an update on our lives. We are staying so busy. We are thankful that both Brian and my jobs are very busy and all our other time is spent with Logan.

Logan is doing so great. He has gotten his back brace and AFOs. He doesn't mind the AFOs at all, and is gradually getting use to the back brace.
We have tons of appointments this month. We see his pediatrician tomorrow for his 18 month (I can't believe it) check up, next week he goes to see a GI specialist here in Greensboro for all of his tummy troubles, and to the MDA clinic at Wake Forest to meet Logans new neurologist. Also next week Logan goes to Gateway for his intake for the infant toddler program. He will start school after Labor day we think. At the end of the month Logan goes to see his pulmonary doctor too. Its a very busy month for sure.
We are looking for a minivan to purchase so that we can get it converted to be wheelchair accessible. It will be a lot easier to travel with Logan since he will be going to school everyday. I'm so excited that Logan will be going there everyday for therapy, playing with other kids, and learning, but I hope his little body can tolerate it everyday.
Logan is up to 25 lbs 12 oz right now. We were working on increasing his feeds because his weight started plateauing and he started getting constipation, throwing up, and throwing up dried blood. That's why he's going to see a GI doctor. Hopefully its nothing serious.
Right now, Logan can hold his head up pretty good, blow kisses, holds his arms out to be picked up, can almost roll onto his belly, mocks what you do, takes the vent off when he is ready, shows you when he needs to be suctioned, and waves hello and good bye. He's such an incredible little boy! Oh, and not to mention he's off the vent for 8 hours a day now!

I promise to try and update more :)

Nightly struggles

Nursing has always been a struggle, not just for us, but for anyone who has a special needs child. Night nursing is our problem. We have two companies involved in his care, and I was told, "Oh this will make life so much easier and less stress for you, mom". Well, I beg to differ. We have always had great day nurses, and we turned to this second company to help cover mainly nights.  But the past 6 months and some of the nurses we have had to deal with were a complete nightmare. I'm praying hard that we can get this issue resolved soon so that we are less stressed about nursing. I had to call out of work today because I have no nursing. I felt like this issue could have been resolved if the nurse would have had the common decency to show up for her shift. I hate calling out. It's not fair to me, or my job. I'm trying to help support my family and people like these nurses who don't really care, ruin this for me.  I don't understand it, but then again, I'm not totally surprised.

I'm praying hard that this won't be an issue much longer <3

Little beach bum

We are on our way home from the beach and it was bittersweet! The second day we were there I was worried that Logan couldn't tolerate the salty, humid air but after breathing treatments around the clock and lots of chest PT, his secretions finally thinned out. Thank God we took nurse Lynn with us. She was a life saver and allowed Brian and I to get some sleep. Monday we took Logan out to the pool. At first he really hated being outside. He got something in his eye and it was watering and swollen and was miserable from that. Tuesday we kept Logan indoors and it helped clear his eye up and was a happy little boy. Wednesday morning we took Logan to the beach. It was much cooler than the other mornings. I've never seen him happier. I swear if he could walk we would never get him off the beach. Thursday morning we took Logan out to the beach again. We took family pictures and let him check everything out. He was out by the pool from 11am to 4pm and enjoyed it so much. He hated the water so much! Friday we took Logan out to the pier and let him look at the fish that people were catching and let him look at the ocean.
All of Logan's first cousins were with him a few days and you can really tell that he loves being around them. He takes in everything that they do....literally.  The other day Logan was trying to pick cousin Emma's nose!
The trip couldn't be more perfect. At first I was very timid about having him out in public and the stress of something going wrong. Logan can change at the drop of a hat, and his secretions are still very copious at times. But, we will take the challenges as they come. Logan needs to get out and see the world and I won't be the one to stop him.
We are looking forward to going back to the beach again next year :)

2nd father's day

We got down to the beach yesterday afternoon and it wasn't too bad getting Logan down here.  He did get really dry being off the humidifier for so long and did get a few plugs. We had to use lots of saline to get Logan thinned out. Once we got to the beach house Logan was ready to go! He was so wild but it was great seeing him happy in a different place. :)
Today was a different story. Logan woke up happy but was very junky, even after treatments all night. Its a new climate and he's trying to adjust. Once he was clear we took him, the vent, and humidifier to the pool at our beach house. Logan was fine but started rubbing his eyes and fell asleep. When he woke up he was a mess. Thick secretions, blood coming from his trach, and a fire red eye. He brought him in and it probably took 2 hours to get him settled. His eye is still very irritated but hopefully will be better by morning. Overall,  it was a great fathers day for Brian. When we were out by the pool Brian wouldnt leave Logan's side. He's such a attentive, caring daddy. We are so blessed to have that <3

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.