Still drooling

It's been over two weeks since the Botox. It can take up to a month to get the full affect but we should be seeing most of it now. And what do we see??? Still drooling. It dropped maybe 10% less but not nearly enough. He's still getting rashes. They are better, not down to his diaper, just remaining on his chin, neck, and a little on his chest. It's an improvement but not enough. For some reason I knew this was going to happen. Maybe I was being pessimistic about, but everything we had tried hadn't worked. So why would this. We have an appointment with his pediatrician in January, so we'll address this whole issue then.

We also had two appointments in Palo Alto last week. One with his neuro and one with his eye doc. He first was with his neuro, who was shocked at how good Karsen's gait was. She expected him to have more of a limp, and swing his leg around more. We talked about Botox later on down the road for his arm, and also constraint therapy. We went over his EEG again, and what to look out for in seizures since they will most likely return. All in all, it was a good appointment even the that ugly work came in.

We then had his ophthalmology appointment, pretty routine. His last appointment his eyes were doing so good she had mentioned not needing glasses soon. I came to the appointment knowing that wouldn't happen since his right eye seemed to be worse again. This puzzled his doctor. She had asked us if there was any. Recent seizure activity. Odd she asked since we still aren't sure. She's worried something might be happening. So now we are back o patching and wearing the glasses 24/7, which we are use to.

I had been talking to his OT, Mary Beth, about all that was going on and had been trying to figure out what we can do for Karsen for his oral motor delay. Something just isn't right, he shouldn't be struggling as much as he is in this department since everything else is moving along. The fear of seizures pops in even more a this point. So, we are in a wait and see process now. I have a lot to discuss with his pediatrician, and also have an email in to his neurologist (I wish that appointment was second so I could have just talked to her in person about all these problems). Karsen, Karter and I have all been fighting a nasty cold since Thursday, just in time to relax for our Christmas break, ha. All we can do is hope and pray. I know God has a plan through all of this.

Sweetest view from my kitchen the other day. My three favorite people in the whole world. I'm am certainly blessed.

Botox, how it went

For the Botox they had to put Karsen under since it was a very exact, precise procedure not to mention painful. Originally Karsen's appointment was set for 10am. He couldn't eat food 8 hours prior and no water or juice two hours prior. Which meant his last meal was dinner the day before. After some emergencies popped in our time got bumped to 12. 

The morning of, Karsen woke up obviously hungry, but I did everything in my power to keep him busy and distracted. We actually had pt at 8:00 so that killed an hour. When we got down to UC Davis we checked in at 11:00' like they told us to, but was delayed another hour because of another emergency. I really was frustrated or upset, these things happen, my child will live, something else is more urgent. Plus, Karsen was doing amazing. As long as I snuggled him and let him play with the iPad he was fine. When we got taken back to our bed, we got seen by the team of people working on him. Five people in all. I felt very protected and safe. The staff there was amazing, very thorough and explained everything to me. Well, with the exception of the Botox specialist, who had poor bed side manners, and was just awkward (I don't know how else to explain it). When they finally took him back his team made sure he was happy the entire way, they all took their job very seriously, one nurse (make that six people on his team), her sole purpose was to make sure Karsen didn't cry. :-) I was really pleased with everything. 

When the anesthesiologist went to put Karsen under he reminded me to stay strong for him. Wow, didn't know how much I needed to hear that. I was able to pull through with no tears up until I got the ok to cry and kiss Karsen goodbye. Tears were flowing. It was so hard seeing Karsen so lifeless, it took me back to his MRI, which was much more scary than this. 

I was showed to the waiting room where I resumed my tears for a good ten minutes. I called Kuper but could only manage to talk for a few minutes.  I was told ahead of time, that it could take up to four hours. So, I posted up. iPad ready, text my friends, my family, and all my prayer warriors. Just when I was getting settled (about 45 mins), the nurse in charge of no tears came to get me and told me he was ready. What?! Yay! They waited to walk him to recovery until I was present. There we walked, all six of his team and Karsen snuggled up. All I could see of him was his little nose and mouth where they had a breathing mask. 

Once we sat down in recovery the anesthesiologist spoke to me about the procedure and warning signs to keep an eye out for. The whole thing went flawless. He did great, didn't need to incubate him. Praise God. The Botox specialist then talked to me about how his end went. He ended up not using a full dose, and only did two out of the four glands, he didn't want to damage any nerves. I was grateful for his least invasive approach but also hope that we didn't go through this whole procedure for nothing. 

After two hours in recovery, he woke up immediately signing cereal, he was hungry. We got cleared to go home at 4:00. I was thrilled. I scooped up my sweet boy and headed out to our car. He then proceeded to eat enough in that next hour to make up for the rest of the day, one hour later, he puked it up :-( but wasn't bugged by it, not sure if he over ate or if it was the anesthesia. Either way, it was a small hiccup. 

We are four days post injections, today as the first day it seemed maybe ten percent better. It can take up to a month for the full affect to come into play. Please continue to pray for my little man. 

I forgot to mention how at peace I was while in the waiting room. I knew and could feel Gods presence. So, thank you for all the prayers.

Here's some pictures the day of. 

All in all, Karsen has done really wel. He has some slight bruising from the injection site but that's all. Fingers crossed this works!

Two days is the day

Finally the day has come! Today we head out to UC Davis where Karsen will be getting Botox injections into all of his salivary glands. I'm on a roller coaster of emotions right now. I'm anxious, nervous, excited all in one. My hope is his will work. I'm nervous about him being put under again. The last time was when he was 7 months old and it was rough. What should have taken forty five minutes took well over four hours. This time, let's hope it's much different. 

Karsen is extra cranky this morning since he hasn't had any food and in about an hour will be cut off of liquids. :-( I hate having to do this to him. All he keeps doing is crying and signing cereal to me. I'm so sorry sweet boy, hopefully this will all be worth it. 

I plan on writing a post with out whole expirience with it after a couple of days, when the Botox takes affect. Please say a little prayer for Karsen and his team of doctors working on him today.

Finally

After many phones, many weeks, too many months we finally have our appointment for the Botox! Friday! So excited we are getting it done before Christmas. The best gift to give to us is a rsh free Christmas. Fingers crossed it works. In some cases it didn't work at all. Let's hope that's not us. 

So, Friday we have to go through the process that anyone else does for surgery, even though it's not surgery. He will have to be put under, which makes me nervous, but they do it every day to kids much younger. No food eight hours before, no fluids two hours before. Good thing our appointment is at 11:00am. I have no clue the actual procedure will take, we'll find out that day. 

It can take up to a week for the Botox to take full affect. I'm hoping for less than that but I guess I can be a little more patient. 

I'm praying so hard this works. I am SO ready to be done with the piles of laundry from one single day, and the constant rashes that irritate Karsen to the point of bleeding. Please say a little prayer on Friday for us. Kuper can't get work off so I will be flying solo. I already expect to be a mess when they put him under, I was over a year ago, I will be on Friday, and that's ok.so if you have the time, please shoot a quick prayer for us.

Hope you had a fabulous thanksgiving! Oh and Karsen's favorite was the stuffing and the pumkpin pie. :-) I love seeing him enjoy food, it was not that long ago eating was a huge challenge for him.