In the beginning of our journey of finding out about Karsen's stroke we were originally told by his pt's and ot's that his case looked very mild. Our neurologist even told us with the amount of damage that is shown on the MRI she's shocked he wasn't more severe. Well, after the ugly bout of seizures we took a few steps back. Karsen's affected hand and arm are very tight and use it little to not at all. His OT and I talked today and she agreed that things have changed. In the beginning Karsen was engaging that left hand a lot more than he does now. She then told me his hand seemed to be affected more moderately rather than mild. Although I didn't want to hear that I already knew before she told me. Those darn seizures. But she did however tell me that his leg is more mild. We both agreed we'd rather his hand be more affected than his leg. We are still moving forward, he's so strong. It's still somewhat hard to hear the word moderate. In severe cases of hemi cp the kids wont walk at all. Karsen, it is clear, will walk. He already weight bares in both legs, and one shock, he doesn't stand on his toes (tip toe standing or walking is a classic cp trait). We have made huge steps in Karsen's eating. He eats cheerios, pancakes, puffs, mum mums, and yogurt melts. We have yet to master the art of a sippy or a straw cup. This is are biggest struggle but he's close. Today at OT we wanted to have him eat and drink but today was not his day. He was not himself. Very cranky. In fact he's down for nap number three as I type. That's right, three! Growth spurt perhaps? Or still trying to kick the little cold he has. He's turning both directions when sitting. Turning left takes a lot more focus and patience but he can do it. He's starting to weight bare in both arms a lot more actively and when you stick him on his therapy ball he tries to bounce himself my engaging his core. He's doing good.
Karsen's neurologist called us out of the blue the other day just to check up and see how Karsen was doing. (what?!, how awesome is that?) It's hard to come by pediatric neurologist, let alone a neuro that is awesome! She called to see if Karsen still was seizure free and talked about having him come in late November or early December for an EEG to take him off his last final med. WOO HOO! We also found out that Karsen's blood work came back clear and doesn't have any risk factors that could cause him to have another stroke. We still are keeping our eyes peeled waiting for the seizures to start back up, I'm not sure if we'll ever stop watching and waiting for them. Once your child has had even just one I think you can't help but worry.
Karsen's pt and ot are both requesting more visits with him but it's getting to the point where it's too much. I believe some parents bring their kids in for therapy and that's just it, that's all they do. I work so much with Karsen during the day extra therapy isn't needed. Just show me what to do, I'll do it. So, I'm going to sit down with them next week and get his schedule all dialed in. Between Karter in preschool, me in MOPS, me training for a marathon, and Karsen's therapy I have no time for me time or fun time with my boys, which is just simply not ok. So tomorrow I am going to sit down and write down "appointments" of fun days with my boys so nothing can interfere. For all you crazy busy mommies out there, you should do it too. Make fun a priority. We all don't do it enough.
playing in the blinds.
Oh, and I forgot to mention we FINALLY got an appointment with the pediatric ophthalmologist. Appointment is set for October 1st, lets pray we get some answers.
