Holding Strong

As I sit here in the hospital with my little man Lafe again, I am reflecting on what has gone on since my last blog.  Other than this bump in the road, it has been wonderful. Lafe continues to come along in his own way the last few weeks.  His personality is really starting to show and he is the sweetest baby.

I remember several months ago, Lafe had a pretty simple routine.  Wake up, look around at nothing in particular, eat some, do therapy, and sit in his chair or on someones lap.  Fast forwarding to the present he is a busy guy.  Lafe starts off his routine by being cute.  He as a pulsox he wears every night when he goes to bed.  It tells us his heart rate and his oxygen levels.  I wake up to one of two things in the morning, either Lafe lays in his bed a coos and sings to himself and I find him smiling and waiting for someone to pick him up, or I wake up to that dreaded alarm going off.  About 95% of the time lately it has been him picking his legs up and throwing them down on his mattress until the monitor comes off his toe setting off the alarm.  Since baby cakes does not cry, this is his way of saying "get up and feed me mom".  I still get a smile every morning whatever way he wakes up.

After our breakfast I do his meal preps and we get Lafe cleaned up for the day.  We play on the iPad and Lafe helps me crochet, he loves to play in the yarn.  Scotty likes to play race cars with Lafe while I pick up the house because we normally have visitors for Lafe who assist with therapy.  Lafe is a happy baby, no crying and all smiles. We do baby massages, stretching, and lots of lovey time.  This is a different baby than what we had this time last year, and we are so happy and thankful for his progress.

Today my hero has shown me just how far he has come.  This morning Lafe had another seizure, one of the seizures where he stops breathing on us, the scary kind.  At first I thought it would be the same routine with him, he has the seizure, we go to the hospital, they tell us he is sick with something, and he lays in the bed lethargic for a day and a half not eating or drinking and unable to see or communicate with his family.  The first part of our day started off the exact same and he had us all worried.  He fought through and came to this afternoon.  He looks like he does not feel good, but he is happy.  His vision is back, he is all smiles, and he is flirting with the staff.  It is so nice to see him interacting so soon after the seizures he has had, it confirms that something we are doing is working for him and we just need to continue in that direction and keep faith in what we are doing and the decisions we are making for him in his care. Well, we are waiting for some results and I am going to take the time snuggle with my baby bear.  As always, thank you for reading and we are excited to share our journey with you.