They've taken over

Today was Karsen's occupational therapy, the time it is every week. It's always hard on him, it's hard work, but today was particularly more hard than usual. Since starting Karsen on the new medicine, he's been completely taken over. It breaks my heart, I hate to see what the side affects of the medicine are doing. He's been completely cranky, and has no drive to do anything. Therapy was pretty hard. Imagine a full hour trying to get a baby to want to do something he doesn't want to do and in the process dealing with the screaming, and fighting. It's 100% apparent the drugs have completely taken him over. I would like my happy baby, that smiles at everything, back please. I can't wait to get him off of these drugs. We still haven't seen a change in his seizures yet, but there is still time for the meds to work.

In the mean time, I've been submerged in surgery research, trying to find other cases like ours. The type of seizures he has in correlation to the EEG are rare, it's even more rare to find a baby that has hemiplegia on top of it, and then adding the surgery on top of that. I've found two people who's stories were somewhat  similar, but it's still like comparing apples to oranges, both a fruit but so very different. I feel at a stand still. Like any situation, waiting is the hardest part. I want answers, I want no seizures, I want my happy baby back, I want a break, I want to know the worst is over. I'm ready to move forward, and on with our lives. I fear this is only the beginning.

Karsen's favorite place to be

some went good... others, not so much

I'm so glad yesterday is over. Cramming three appointments in one day is exhausting and we only had one child that day! I'm so thankful Karter didn't have to go, he would have been miserable. The first appointment went better than we expected. The urologist said only one testicle hasn't dropped (much better than both) and there's still a chance it can happen on its own. He wants to wait out another month and take it from there. Kuper and I were shocked, for once we got fairly good news! Next stop; neurologist. I was in such a good mood from the first appointment I wasn't prepared for the neuro at all. When we got there we talked about our plan of action with Karsen's medications. She stepped out for a little bit to talk to an epilepsy specialist. During that time Karsen had the longest seizures he's ever had, and of course the whole time she was gone. It went on for almost 20 minutes. Kuper and my feelings of good were quickly washed away. His neuro then told us our options, we have decided to are start him on prednisone, with his current seizure drug (and zantac for his tummy). If this doesn't work, then we'll try one more drug. She didn't feel very confident the prednisone would work. If those two both fail, then we will need to seriously discuss surgery. What?! On my babies brain?! I was completely caught off guard. I didn't think we would ever need to come to this. My stomach dropped and I instantly felt like I was going to throw up. I'm so very happy with Karsen's neuro, she's very informative, takes her time with us, and always shoots us straight. I just didn't prepare myself this time. A month from now we have another appointment with the urologist and the neurologist to follow up on both. We'll move forward from there. Third stop; lab work. Feeling absolutely sick to my stomach from the neuro appointment, I started getting more nervous for just a simple blood draw. Blood draw is nothing compared to the MRI but still someone was going to be hurting my baby. Hadn't he been put through enough today? Heck, hadn't Kuper and I been through enough today? After all the appointments were done, we headed out to the car and began our drive back home. We decided to stop and get dinner before we got back home and that's when I lost it. Started crying in the middle of the restaurant. With a shoulder to cry on a a happy, chatty baby, I quickly pulled myself together. This is just another bump in the road, we will pull through this. Things will get better.

Thought'd I'd wrap this up with a video of our little man at dinner yesterday, cheering me up. Enjoy! (notice who's sitting in a high chair finally!)

Long day ahead of us

Tomorrow morning, Kuper and I head out bright and early for our long day of appointments for Karsen. I'm so thankful my hubby is so willing to take the time off work to go to all of our specialist appointments since they are such a far drive. Thanks to my sister and my mom figuring out the day of swapping, between the two of them, they will be watching Karter so we wont have to drag him to a bunch of appointments that he'll just hate. Even though the road to get here was quite a fight and really ugly, I am so happy with the many gifted doctors  working with us. I've been emailing Karsen's neurologist back and forth about his seizure medicine and what to do next since it isn't working. After many emails, she told me since we were coming down for Karsen's appointment with the urologist she was going to squeeze us in for the same day, just a few hours after. For those of you out there who have a pediatric neurologist for your child, you know how difficult it is to get into them. For those of you that don't know, the average pediatric neurologist had a 7-9 month wait when we were first trying to get in, and that was even when Karsen's case was marked urgent. Our neurologist is amazing!!! I'm so happy we ended up at Stanford. The drive is very worth it. 

First thing tomorrow, we drop Karter off at my sisters. Karter is so excited he gets to spend the day with Auntie and best of all make cupcakes... those so better not enter my house... lol ;-) Then off we go for our three hour plus drive down to Stanford Children's hospital. First stop: the see the pediatric urologist. We've been told to expect an hour and a half for the appointment. I feel so lucky we've found doctors that don't rush us out the door. Next stop; pediatric neurologist, in hopes to figure out a plan of action to stop Karsen's seizures. We are now at our max dosage and they are still around 6-8 times a day. And then the final stop; down to the lab to get blood work done. When Karsen suffered the stroke, it was either caused by a blood clot from the placenta or from his own body. So, the blood work show us if we need to put him on blood thinners or not, to prevent any more strokes. Then head home! Is it the weekend yet?..... 

Please continue to keep Karsen in your prayers. He's been so strong and continues to surprise us all by still pushing forward in his development even though he's still having seizures (his type of seizures have been known to regress development) He's my little fighter! 

So, say a little prayer for safe travels tomorrow and no traffic (ha that'll be the day)