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 :)