Oye

My poor baby! Ever since we have started him on his new med, almost 4 weeks ago, he's been super out of it and progressively getting more cranky at night time. I have started to get really worried about him. Two nights ago, and last night gave us a glimpse reminder of what Karsen's first 5 months of his life was like. Kuper and I are pretty shocked we are still married... no really.... we can both be pretty mean when we don't get enough sleep consistently.  Last night, Kuper and I hit a point with Karsen that I felt something was just not right. Call it mothers intuition or whatever you want to call it I just knew. He was waking up two or so times a night which is awful except we was SCREAMING! Nothing would calm him down. Nothing! I felt bad for Karsen because I wasn't able to figure out what was wrong and help him, and I also felt awful for Karter who, in the past two days, got very little sleep due to his brother screaming his head off about 3-4 hours a night. (they share a room) After a phone call to the on call neuro (so grateful for them) we agreed with what the neuro had thought. He believed Karsen was having a reaction to the meds. He wanted us to wait until Monday to call his regular neuro to see what she wanted to do. There is a good chance, especially after the last week, that we will start tapering him off his meds sooner than planned. It breaks my heart he is so medicated. I wish I could take this away for my baby.  Tuesday, we have an appointment with the urologist and neurologist. It always seems the ugly stuff happens after hours, or on the weekends. Praying my boys both get a good night sleep, along with Kuper and I. Bless my husband for letting me try to get some sleep in the morning and then watching the boys while I took another nap. Feeling a little better. Just ready for tomorrow morning so we can talk to the neuro.

Small victories

One subject I want to touch on today is milestones. Before Karsen was born, I had just Karter. Boy were things easy then! I can't help but laugh at people that make it seem like the have the hardest job in the world with just one child that doesn't have any medical problems. I had SO much time for myself when I just had one kid. But I also believe every child should have a sibling. Karter and Karsen are the best things to ever happen to me. They both have taught me so much.... especially Karter being at the true for terrible two's which I believe to be more into the three's....he's taught me a lot about patience. Ok, back on track to milestones. Today, at Karsen's therapy session we were talking about what he can do and how much he's been able to do in just the last week. Weight shifting, balance reaction, Proper sitting, stronger core. These are all things, when I just had Karter, I never saw. I never saw them because I simply wasn't looking for them. I think so many people, myself included before, don't realize how much work it really is for a baby to learn to crawl. Heck, to even sit up. It's taken Karsen a while to master the sitting but he's there, I just still have to leave a pillow behind him just in case he decides he's tired of sitting. We are working on him getting in and out of sitting safely, which knowing what I know now is really hard. But today, after our session, I couldn't help but think "Geez! I took so much for granted with Karter!" I never took the time to notice how Karter would weight shift, I'm sure he picked these things up so easily which is why I never notice, but I couldn't help but feel like an awful mother. I took so much of what Karter was able to do and on track, sometimes even ahead,  for granted. I'm a part of a few support groups, online, which has been a huge help, and one of the things that are continuously posted always sticks with me. *We celebrate the small victories*, because they are so big. So celebrate all the small victories, special needs or not. Take the time to soak in every ounce of your child.

Small victory, Karsen sitting on his shins and not falling over. :-)

Out with the old, in with the new

Karsen's new thumb/wrist splint came in the mail today. It has a thermoplastic stay in his thumb to keep him from curling his thumb back into his palm so he wont need surgery on his hand later on down the road. For those of you that don't know, kids with cerebral palsy have the tendency to keep their affected hand in a fist. This can cause a lot of tendon tightness, which could call for surgery later on down the road if not watched carefully. I thought I would show you all the few braces Karsen has got. He's grown out of all of them except for one, and then of course his new one that came in today. When his OT comes tomorrow, we'll set his new brace to his thumb exactly. 

Here's his old thumb splint, that he quickly out grew and figured out his way around it... that little stinker. This is a McKies pediatric thumb splint. He wore this mostly at night but sometimes during the day when his hand was a little more tight than normal. Look at that tiny little thing.

 This is the supinator strap, also by McKies, he would wear with the thumb splint occasionally to help him turn his wrist toward the ceiling. So if you look at your hand, palm facing toward the ground and turn your hand so your palm is facing the ceiling. That's  your supinator muscle. Those also have the tendency to tighten up as well, Karsen's was particularly tight but has improved greatly. 

 This is his bamboo brace, that's the brand if you are curious. There is changeable plastic pieces that vary from really flexible to firm. This brace helps support his arm to bare weight. It wraps around his elbow preventing him to bend his arm. 

 This is his new supinator strap, also by McKies. The older one was getting too short, we weren't able to wrap it around enough.

 This is his new thumb/wrist splint. It's a Benik splint. We'll be trying this puppy out tomorrow. We are suppose to heat it up a little so we can mold the plastic thumb piece to his thumb. I'm waiting for Mary Beth to do that for sure. ;-) I'm not quite confident enough to do that on my own.

Choosing a color for this thumb/wrist splint was actually pretty hard for me. I didn't want it to be obvious, I wanted to avoid all the questions from strangers and little kids (lets me honest, they never have a filter) but I also wanted him to have a color that would draw his attention to that side. So, with that said, I decided out with the nude color in with the blue color. Catchy... lol 

Hope you feel a little more educated on splints today. ;-) I am so thankful for the many people that created these so kids wont need to endure painful surgery.