More food issues

I took Karsen to his pediatrician yesterday to figure out why he's getting sick all the time and taking forever to recover. After an hour and a half appointment and almost two hours at the lab, we've figured some of it out. Karsen's body is working on overdrive to fight off the food in his intestines that he's allergic to, so his immune system is suppressed right now. This is why he's getting sick on stop, his immune system is so weak from fighting non stop it can't even fight off a common cold. Obviously this is a big problem, with all those nasty viruses going around, it could land him in the hospital. We did more blood work to find out what food is causing the issues. We already know he can't have corn or oat, well now we've discovered he no longer can have dairy or gluten. This is not a temporary change until he can handle this food, this is a permanent life change for him. We will ever be able to have corn, oat, gluten, or dairy. Poor guy, right?! We've had to make some major changes in our house. We can't keep any of that stuff around, Karsen will throw a giant fit for cereal, crackers, cheese if he sees it but can't have it. So it's got to go. It will be good for our whole family but it's definetly going to take some getting use to for Kuper and Karter. we went over Karsen's sleep issues, we are going to try to add in a few extra vitamins that he's most likely lacking since his body is having a hard time absorbing the nutrients from most food. Our hope is its a vitamin deficiency and not seizures that's causing the bad sleep. Two day was the first day of making the food switch. Breakfast was easy, eggs and sausage with our green smoothie, lunch was a little interesting but not too far off of what he gets. Dinner is going to be more challenging. Pleasing everyone is going to be a hard task. Pray for me....lol

He's a 3 year old

Karsen has now been in school for two months and LOVES it. I can actually leave after saying good bye to him, something I didn't think he'd ever be able to do. It helps having his nanny work there and the other teachers loving him just as much. They are all amazing. I get pictures weekly from one of his teachers on all the amazing things he is doing. Two handed things, fine motor, gross motor, he's doing amazing. I was telling Kuper the other day, minus the speech delay I feel like he is just like any other three year old out there, tantrums and all. ha.
It makes my heart so happy when I pick him up from school and he's so happy to see me but clearly has had a good time. He's even made a few friends, which let me tell ya, has been a worry of mine. He can't talk, how can he communicate with other kids? How can he ask a friend to play in the sand with him? Well, apparently speech is not needed. When I walk in to drop him off, I hear other kids say "Hi Karsen!", "Look Karsen, look what I'm playing with." These kids just tug at my heart strings. I don't think they realize the impact they are making on our lives. 
Karsen does seem to be having seizures again. They aren't the infantile spasms like before, thank God, and they aren't as frequent as before either. He's only had three of them in the past few months. I believe he's been having absent seizures, we can't be sure until his EEG. They aren't affecting him a ton, he does seem to sleep much longer during his naps when these happen but other wise he's not doing bad. Hopefully after his 8 hour EEG we'll get more answers. I ended up talking to our Neuro about the spells after his Epileptic specialist told me "Well, if he's having seizures and they aren't affecting his daily life there's no need to do anything" (WHAT?!) This was after I told her that he took a four hour nap and his sleep is all over the place. I'm glad I went with my gut and listened to Kuper when he said to just contact his neruo instead. We love her. She's amazing and has always listened to me, in fact even said "you know your kid better than I do, what do you think  is going on?" Isn't that how all doctors should be? 
We've been seeing Karsen's new speech therapist now for over a month. Karsen's finally warming up to him. He's really working on saying the B, M, and P sounds. He's almost got all down. He's talking people! I mean, really talking! He says ya, more, ma, da, bye bye (it actually sounds like bye bye too!!!!!!) and ipad.... not joking. lol He's really starting to come along. I told my friend, his old speech therapist, I feel like I'm finally seeing the light at the end of the tunnel, its small but it's there. We'll get there. It's going to be a LONG road with lots of speech therapy but I have no doubt  that he will be talking. 
I've also noticed a complete change in Karter and Karsen's relationship. They play together! Like real play! Rough, tough, boy, tackling, rough housing play. I still feel like a referee but I think that comes with being a mom in general. It makes me so happy, so overwhelmed with joy to see the two of them play together, something I wasn't sure if I'd ever see. I've worried about Karter hurting Karsen when they rough house but instead Karter is usually the one that catches the up kick on the chin in the midst of rolling around on my bed. Again, never thought Karsen would be able to hang with Karter as rough as they get. Happy mom of boys over here. 
I'm so proud of Karsen, he's so tough, he's endured so much in such a small span of time. He surprises Kuper and I constantly. I'm excited to see what God's plans for our little man is, where he will take us next. We are beyond blessed with such a full life.

Surgery Results

My goodness I have taken way too long to update everyone. Sorry friends. Life got busy. 

Well, surgery has been a huge success. Not for one second do I regret it. For the most part Karsen barely drools. Some days, when he's congested or concentrating really hard, he seems to drool a bit but no where close to what it use to be. No more bibs! I told myself I was going to have a bib burning party but couldn't get myself to throw them out for fear that he would start drooling the minute they would be gone. Silly, I know. So instead, each time I find one, out it goes into the trash. And each time I throw one away, I feel happy for Karsen. So happy he doesn't have to deal with the constant rashes or irritation from drool or the puffy, bothersome bibs that had to be so thick he'd sweat during the summer. So, GOOD BYE bibs, hello big boy Karsen. 

 

Look! He looks like such a big kid!!! 

The surgery itself was a rough bout. Karsen's time slot wasn't until 11:00AM which meant I had to keep him distracted from how hungry and thirsty he was from 5am (when he wakes up) until they take him back into surgery at 12:00PM. He did a lot better than expected. As long as we had planes playing all was well in the world. Just before they put him under, they gave him "happy juice" as they call it. If you've had a kid put under for any reason, I'm sure you've had the pleasure of watching your kids after they have taken the "happy juice". Karsen was hilarious. He kept laughing over nothing. Poking the animals on his hospital gown, and giggling over me touching his nose. It wasn't only good for him to chill and relax, but it helped calm my nerves seeing him happy.

Once he was back and under, I was off to get some much needed food but I really couldn't eat. I had never had that happen to me before. Normally I'm a stress eater, this was a change for me. So I got on my phone and texted a few people, called Kuper and cried of course (even though he said "hey! Look you made it with out crying" and then I cried), and cracked open my bible. For five hours I couldn't take my eyes off the status alert they had with patient numbers accompanied by the status of their surgery. It was comforting and nerve wracking all at the same time. Since they said it would only be about a 2 hour surgery, and five hours had passed I was not sitting easy. But truth be told, I handled it much better than ever expected. I can only give it to one thing, God. I felt at peace, as if He were sitting right next to me say "I got this, don't you worry." When the board finally changed to "in recovery" almost immediately a nurse came out to walk me back. He was just starting to wake up when I walked up to him. He had two nurses, his surgery, and the anesthesiologist by his side. In that same moment of me knowing God was with him and the team surrounding him, Karsen went blue. First his nose, then his lips, then his face. His whole team jumped into action, with in seconds he was back to normal. It was scary but I never worried once. Weird, right?! We waited in recovery for over an hour, waiting to see if he was ok to move to the regular floor or if he would need to be moved to the PICU. After one more time of Karsen turning blue again they decided it was better safe than sorry to move him into PICU. Now let me explain. Karsen was having a hard time breathing, or getting air in is a better way to put it. They gave him morphine for the pain (which can labor breathing), his airway was weak from being in surgery with a tube down his throat for over five hours. The two made for a not so good combination. As soon as the morphine left his system he would be fine. 

Off to the PICU we went, after a quick visit from Kuper and Karter (toys and snacks included). My sister came to visit me, I'm still very grateful for her distraction. She was there to witness yet another one of Karsen's breathing issues. The staff at UC Davis was amazing! They were quick and very nurturing. I would go back there in a heart beat. They got his breathing under control right before Karsen was out for the night. My sister and I talked, laugh, at chocolate and then to bed at went once she left. The next day after all the craziness, we were discharged! The morphine was out of his system, his pain levels seemed fine, his breathing was 100% better and we left, with out a single bib. :-) We haven't looked back since. 

So, yes, the actual surgery was rough but it was SO worth it. And never once did I ever feel like I could lose my little man, God was sitting right next to me, the whole time. Thank you all for all the prayers and support through all of it.