Has it been that long already

Every time someone starts talking about Valentines day I can't help but cringe. Not only do I not like the holiday one bit, but it also marks the two year anniversary that we were brought very tough news about our child. If you haven't followed my blog since the start you can read about that day here. 

A roller coaster of emotions has been going on through my head the past few days. It's interesting, because before I even realized it was almost upon us (just like last year) I started feeling a little off, a little blue. Don't get me wrong, I am beyond blessed, so grateful for how far Karsen has come and where he has brought our family. But in the same breath, it still hurts to think of that day, when we still wanted to believe there wasn't anything wrong and we were over reacting. Oh how I wish that day would have had better news. But it didn't. And that's ok. We are living one day at a time here, sometimes one hour. We have our great days and our bad days just as any other family out there. 

I still have feelings of regret. Wishing I had cherished every moment of Karsen's infancy, every hour of his baby cuteness. It was so hard, so challenging I rarely enjoyed much of it. It was hard to see the light, hard to see when it would get easier. I remember when Karsen was 14 months old and how I was begging for him to just sleep through the night. I was so sick of getting up for 14 months straight, to nurse him every 2 hours. I'm not joking here people, it was literally that way. Imagine having an inconsolable newborn for 14 months. I was DONE, I didn't understand this "connection" that breastfeeding women talked about, I just felt like a dairy cow. But here I am well over a year later, sad. I miss it. I wish I could have embraced it more, but that sad truth is, I didn't. It is what it is. 

Having those feelings of regret aren't necessarily a bad thing for me. Every time I feel that way, it makes me realize how I don't want to feel that way about this stage. Yes, I want Karsen to talk, yes I want things to not be so hard. But now I can see the light. Things are getting easier, or maybe we have just learned to adapt better, whatever the case it comes easier for us. So, while regret may not be a good thing to feel it does remind me to enjoy the moment. 

Yes, it's been two years, and I can't believe it. That means my baby is going to be three this summer, what?! So much has happened. We've lived through the diagnosis, the set up of therapists, the battle of seizures, firing therapist, finding new therapists, referrals, botox injections, AFO fittings, hand splint fittings, this list could just go on and on. We're doing great, we really are. 

However, with Valentines day still comes the feeling of mourning. The sadness that my child will never have full function of his hand, the constant fear that seizures may come back, the pain I feel when things are so much harder for him, the clumsiness that comes with his poor motor skills, his never ending battle with his rash from drool. It is so hard to see your child in pain, and so hard to see them struggle. It hurts deep down. I wish I could make things different for him but I just can't. I've accepted it, we've moved on, and I do my damn best to make sure he is happy and loved. So while we've had some huge accomplishments in these past two years, Valentines day will forever come with a sting of pain for me. Tread lightly around me friends, it's not an easy day.

Life change

We've had a huge change happen in our house, I'm going back to work. As much as I love being home with my boys, financially it isn't an option anymore, especially if we want to be able to send our kids to a private school. I'm excited to start working again, doing one of the things I love most. (I've been doing hair for 10 years) I'm really excited to get some adult time! I've tried throwing around the idea of going back to work before but I had serious anxiety about working again. I would constantly be worrying about Karsen having a seizure while I'm gone, worrying if he isn't being engaged enough, choking on his food, or drink... there's a lot to be worried about. So, I backed out. Decided if I didn't feel right about it then God would provide, and he did. 

Recently we revisited the whole subject. I decided to start looking for a nanny. Someone I would trust with my boys, someone willing to drive them to appointments, someone with experience with special needs kids, and someone willing to work with my schedule.... when I put that list together I did not trust in God, I did not think we would find someone. Well, God put me in my place, why do I not give him all my problems??? We have found a nanny! Here's why she is so perfect for the job: I've had the opportunity to get to know her over the past year and love her. She's one of Karter's preschool teachers, which means when Karsen goes to preschool she will be there (HUGE bonus). She doesn't mind driving my kids everywhere, and also doesn't mind if they are sick. As if that all weren't good enough... she has a 15 month old little brother who has down syndrome, she has lots of experience with special needs kids. I'm so excited to have her watch my boys. (let's just hope they don't like her more than me lol)

To top all of this off, I found a salon closer to home that's adorable, small, and has three amazing women working there, one of which has been a long time friend who's oldest son has the same speech therapist as Karsen. :-) I really couldn't feel any better about the whole situation. 

So enough work talk, Karsen is still struggling with speech. He's doing really well with his new speech therapist. We also had a breakthrough at hydrotherapy. He was actually trying to pull his legs under him to keep him self floating with his special float suit (it's designed to help but not make him float) His OT and I couldn't almost completely let go of him. 

We are dealing with major behavioral stuff. He's constantly screaming and throwing a fit, he's even resorted to hitting himself. Half the time I know why, the other half I have no clue. It breaks my heart he can't just tell me what's going on.

We are waiting for his referral to go through for a swallow study. We are pretty sure he's been aspirating his water and pretty much any juice. His oral motor delay is hands down or biggest struggle. His rash has been getting worse, which makes me the small amount of botox that was working in our favor is already wearing off. :-/ We are back in the squeaky wheel saddle of annoying doctors until we get our appointment. 

We've moved the TV out of the livingroom. Karsen was constantly asking for it, he would watch it all day every day if we let him. Now he just throws a fit when we don't let him in our room.... not sure if that was a good decision. At least when we are playing it's not in his direct view. any suggestions to stop the tantrums because we wont let him watch tv?

What's next

Over a month has gone by since Karsen has received the botox for his drooling. Results? it minimized it maybe 10-15%. It was not enough. I'm actually quite irritated, we went through the whole process, had Karsen put under, and at the end the specialist (whom visited him all of 20 minutes total before the procedure) decided he would just do two out of the four glands. Why would you put a child through this to have minimal results, also needing to do it again. I didn't want to have to do this again but knew in the bank of my mind, when he told me he decided to only do two, that it wasn't going to be enough. Karsen's rash is definitely better, its not cracked or bleeding like it has been before, but that's just the thing, it's just better, it's not gone. He still has a rash on his chin 100% of the time no matter what we put on it. So, what's next? Well, first off we wait. Why? Well, botox is toxic, you can only inject so much in a 6 month window. He didn't inject the full amount in Karsen but we would be putting him under all over again just to do the same thing he already did, knowing now, he wouldn't see much result. We had an appointment at Shriners just to follow up on all of Karsen. We talked a little about the botox and what was next.... well that's just it, we just don't know what's next. Karsen is very young to be having all of these procedures done for the drooling but in his case we aren't trying to stop the drool, we are trying to stop the rash.  So, now we wait and research. When Karsen is a little older there is another medication we can try. Until then, we just switch bibs out every hour (which reminds me that I need to make him more since his old ones are BAD), putting cream on his rash when needed and coconut oil (yes, I'm crunchy) on at night (when I remember). 

We have increased Karsen's speech therapy. He now goes once a week, which is what he needed. We also switched therapists since we couldn't increase with our current one because of her busy schedule. It was really a win-win though. Karsen's new therapist Karsen already knows. It's my dear friend Amy. He knows her place, he knows her and trusts her. His first session with her went much better than I expected. She was also much more hands on with him, which is what I want, I am by no means a speech therapist and all that hands on stuff is more than I do. Kuper and I are 100% sure that he says "yeah". It's very clear. He always says it when you ask him a question and he responds with his yes head shake and "yeah". He even knows what a lion says.... (not a fox, ;-) that might be a bit much for him) "rar!" I was really doubtful that he would talk, I've even talked to a few of my friends about the big possibility of him never talking. I was really down. It's hard to think you may never hear your childs voice. But I now know I will, just in his perfect timing. 

Karsen recently got a set of stairs with a slide made for him by a sweet family that we know. What a blessing! He LOVES it. He's becoming a pro with stairs. He'll even do really small drops (maybe an inch or two) with out hand rails. He's really doing well. I now can enjoy watching BOTH of my boys play at the park.

We've been having a bit of a struggle with sleep at night. He doesn't need us at all but I can hear him getting restless at night numerous times. It makes me nervous. I always jump the seizure gun on weird activity that's out of the norm for him. Because of the bad sleep at night, his naps are well over two hours. Yesterday he slept for 3 hours and 45 minutes. Today was 2 hours and 30 minutes. Let's hope he's just having some sort of growth spurt. I pray that his seizures aren't back.