Moderate, not mild

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. 

Your child doesn't need this

Karsen had a great day today with his OT. I think he's finally warming up to him. It was a huge help that Kuper took Karter to my friends house this morning so I didn't have to. (My friend, Lisa, takes Karter to preschool for me on Tuesdays) So Karsen was able to eat a good breakfast before we headed over to his OT appointment. So maybe he needed the extra boost of food or maybe he's getting more comfortable with his new OT, who knows. It was a huge improvement. We didn't have to leave early, in fact we actually ended up going over our time a bit. We worked a lot on hand play. We also talked about getting him a removable splint for his right arm so we can do some constraint therapy. There was no way I was going to do a cast at this age so we're going to do something removable that way I can work on it x amount of time a day. Karsen also got his new thumb splint. It fits much better than his bulky wrist/thumb splint. 

We went to his usual play group therapy and I'm really starting to love it. I think Karsen does too. There's such a wide range of developmental delay in the group, which I thought would be hard but it's not bad at all. I love the PT's that are there. They have so much knowledge about feeding and motor skills. I could pick their brains all day. I've made it part of our schedule to try to make it to every Tuesday play therapy since Karsen and I both learn so much from it. There are a few people I have seen consistently and know both of their kiddos are at very similar milestones as Karsen. Today there were two other people with kiddos there today that I haven't met. They were both around 12 months. At first I thought they were twins but then I realized the two parents were not together (one dad, one mom) after seeing their kids for 5 minutes I wanted to ask them to leave. Their kids did not need to be there! I was getting mad and irritated that they were there. This is a special needs class and there was nothing special needs about them. Both could crawl, walk, and communicate, and when it came to snack time their were eating as good as you and I. I wanted to scream. Not to mention the dad had asked me if Karsen broke his thumb. Clearly they didn't belong. It was hard to get into this program from the start which is why I refuse to not go. So, this two little ones are taking up spots for kids that really truly need it. Karsen doesn't do well with kids enterning his comfort zone, he defintely has a bubble around him and it's only ok to come into it if you are an adult female that is going comfort him. One of the little boys was a total brute. Running all over and kept trying to grab Karsens face, all while the PT was trying to work on standing on Karsens knees. Karsen kept melting down every time this kid would come near him. I couldn't blame him, I probably was doing the same. Well, lets just hope that they realized the three other kids there really truly needed that therapy session and they decide to not come back. I know I sound harsh but I want Karsen to get every bit out of his therapy sessions. That time where he is alert, happy, and willing to work is hard to come by. 

In other news, today Karsen showed me a glimpse of some serious brain function. He's never gotten the action of putting toys in a box or pushing a car around like it should, that sort of thing. Well, today he put a ball on the track of a toy how it's suppose to, to watch it roll down to the bottom. He did this over and over again. Woo hoo!!!! I was so excited for him, he's really started to get the whole "playing" part of certain toys. I know, weird to worry about how your child plays with toys but with a special needs child nothing is off limits to worry about. Here's a video I took of some of the action. Notice the butt scooting turning action before? I'm so proud of him.

Sleep, how I've missed you

I think it's safe to say Karsen is officially sleeping through the night. It took him 13 months but he's finally doing it! Occasionally he'll wake up a little earlier than Kuper and I would like but all in all we are pretty happy with the fact our sleep is now uninterrupted. Karsen and Karter both go to bed at the same time, 7:00PM and generally wake up around the same time, 6:00AM ish. That's not half bad! I'm not a morning person so the 6AM isn't what I would choose but I'm adjusting. My husband would laugh at that. I'm so spoiled. He wakes up with the boys and takes care of them both in the mornings while he gets ready for work, so I can get an extra hour of sleep. I'm so lucky to have him, but don't you dare tell him I said that, lol. He might stop waking up with the boys. ;-) At some point I really want to get into a morning routine of all of us having breakfast together so now that I'm actually getting sleep I can starting thinking about it.... thinking... lol Karsen is doing so much better eating! He is able to eat pancakes now! It takes him quite a while but he doesn't seem to mind sitting in his high chair for an hour with my full attention. ha. He still doesn't have the pincher grasp yet so he isn't able to feed himself food with the exception of graham crackers or mum mums. We are still struggling with sippys. He hates them. He doesn't get that he has to suck on them to make fluid come out. The best luck we have had is just with a regular cup. But last night I was actually able to get him to drink out of  a sippy but I poked a hole in it to make it come out with out sucking. So, we're taking baby steps. He's doing much better though. Only nurses three times a day now. I'm starting to feel like a mom and not a dairy cow. ha. I'm going to have to start harassing our insurance about the referral for the ophthalmologist. Still haven't heard back. Grrrrr! Darn insurance! So, the squeaky wheel returns.

Waiting, waiting, and waiting

We are still waiting to hear back from the ophthalmologist on our referral for Karsen for his eye. There is a hold up on the insurance approving it. Grrr! Don't understand how it can take so long for them to just read the paper work and check the box that says approve. We are also waiting on Karsen's new thumb splint to come in. He got measured for it last Tuesday so it should be in by our next OT visit on Tuesday. And last but not least, we are waiting to hear back from his neuro to find out his blood work test results, might shed some light as to what the cause of his stroke was but most importantly find out if he needs to be put on blood thinners. I'm hoping and praying he wont need to be. It's a weird feeling though, if he doesn't need to be put on blood thinners than the likely hood of his stroke being cause by a blood clot from the placenta is more possible. It makes me feel like my body failed him. Even though I know I had no control over it and God has a better plan than I could ever imagine, I still wish I could go back and change it all for Karsen. I hate seeing him struggle just to reach a toy that's 12 inches away from him, I don't want to watch him like a hawk to wait for another seizure. Wheather I like it or not, I know deep down Karsen will some day have another seizure. There is a slim to non chance of them never returning. So, I watch.... and watch. Yes, I hover too much but wouldn't you? We all wish we could take away the hurt, the pain, the struggle for our children, but  boy are they so tough and strong because of enduring all of the hurt, pain, and struggles. I know Karsen is going to shine. He's taught me so much. I was talking to one of my good friends the other day about how I felt guilty that Karsen gets so much more attention (all the appointments) than Karter. My sweet friend, bless her heart, pointed out that this time is teaching Karter so much about compassion, and selflessness. How right she is! Numerous times the past few weeks I've caught Karter gently stroking Karsen's hair, giving him a kiss, bringing him a toy. As I write this now it brings tears to my eyes. I want to give myself a pat on the back, and as moms we don't do that enough. I'm doing a damn good job. Moms, you are enough, you're more than enough. God chose you to be your little ones mommy. Believe it. You will ALWAYS be enough! So take the credit for all of the good your children do, they do it because of you.  ;-) 

My and my little at my friends baby shower.

Movin along

Yesterday Karsen started to move oh so slightly on his tummy. He's so close to army crawling! I now ealize I need to watch what is on the ground. It's been so easy just sitting him somewhere and not worrying about whats a good two feet or so away from him. The other day he got himself to our toy shelves and boxes and pulled some of Karters toys (total chocking hazard) down to play with. I was SO proud but also realized I need to start watching my little mover. :-) We have yet another email in to our neuro waiting to hear back from her. Still waiting on insurance to approve the referral for ophthalmology. I've been staying true to my name and been a pretty good squeaky wheel. We are mid way through the week of a adjusting to our crazy busy schedule. Today is one of our more mellow days. We had OT bright and early and in a few we'll be leaving for the boys cousins birthday party at the Lake. It's a nice break from all the therapy. Excited to see all my friends. I don't know if Karter is more excited or if I am. lol. Friday we get a therapy break. Sara can't make it so we are taking the day to head up to Silver lake where my moms side of the family is all camping. We will NOT be camping! ha ha I'm very serious about this. We do a family camping trip every year and the past two years turned into a nightmare. Kuper and I got very little sleep both times, so I learned my lesson, we will not be camping until we are set up with a tent trailer, Tent camping is not for us. I'm not a total camping snob but you try to go camping with two kids, one of which being special needs requiring much equipment to keep him entertained and fed. Ok maybe I am a camping snob but I love my bed, and my bed loves me. ;-) I tried to get Karsen on video of him moving around but my video skills while trying intise him aren't the best, lets just say I'd probably give you motion sickness. Hopefully soon I can get Kuper to help me so I can catch it on camera(I almost said tape.... tape? really? geez! Now I feel old!) Well, off to wrap the presents for the two birthday boys, yes I'm a procrastinator, at least I didn't have to go buy the presents today. lol And off to the lake we go! Happy Hump Day! Oh and if you're wondering, yes the OT still has horrible BO. :-/ Let's hope summer passes soon! ha ha

Wish I had room for a bean bag chair my size! The boys watching Lorax.

Like clockwork

I have been reading on all of my support groups about their hemi kid reaching an age where they would fight through all of their therapy sessions, just for a short period of time. Well, today we must have reached the perfect age for Karsen. Holy smokes! He was so cranky! He was fresh from a nap and fully fed and still was crying over everything. The minute I would pick him up to console him he would stop crying, and immediately after handing him back over he would start crying again. I'm really hoping this will pass soon. It's so not like him. I'm not sure if it's just his age and the phase that he's hitting like every other hemi kid I've read about or if it's because his PT is still new to him. It was really hard to get any progress out of him. We discussed a little bit about constraint therapy... his OT his the one to talk to about it so I'll be talking to him about it more tomorrow. I'm really nervous for constraint therapy. For those of you that don't know what it is, it's when you put the good arm (Karsen's right arm) in a splint or cast so they can't use it at all. It forces them to train their brain to function the other side (Karsen's left). If I hold Karsen's right arm he FREAKS out! He really neglects his affected arm, every PT and OT that sees him always says "he really ignores that arm doesn't he?" Ugh. So yes, we are going to have to do it at some point. There is no way that I will cast his arm. He sucks his thumb and I'm not going to take away his one soother he has for nights. When I mentioned that today his PT said they can do a removable splint. Thank goodness. Let's hope tomorrow's OT session and play group goes better than today. :-/ I hate seeing Karsen all worked up like he was. 

working on knee standing while playing with Karter.

What did I get myself into

Today we met Karsen's new OT, Tom. First impression: very nice, maybe in his 40's, had the worst bo I've smelled in a while. It was very distracting. I hope he wont smell every visit. lol But I can suffer through some stench if it gets my son the help he needs. Looks like Karsen will be getting yet another new thumb splint. He got fitted today at his appointment. He also got bumped up to two visits a week for his new OT. Here's our current schedule:

Mondays:PT @11:00

Tuesdays:OT@8:00AM Play group therapy@11:00

Wednesdays:OT@8:00AM

Thursdays: FREE!

Fridays:OT@11:00

I'm getting tired just looking at it! In the midst of all of this craziness, Karter is starting preschool! He'll be there Tuesdays and Thursdays. So there goes my free Thursdays. ha. I am so excited and nervous for Karter be starting preschool. He SO needs something for himself. Something that is 100% for him. Thanks to two of my amazing friends, since Tuesdays are crazy packed for me, one of my friends will take Karter to school in the morning and my other friend will pick him up and meet me after Karsen's group therapy session. Thank God for friends! At some point I want to be able to pay it forward. Speaking of paying it forward, I decided yesterday I wanted to do something random and nice for a complete stranger since I was taking Karter to one of my friends house while Karsen was at group. So, I did the Starbucks things. I paid for the car behind me. I almost wanted to wait and see the persons reaction but I also didn't want to seem creepy or stalker ish. lol. It felt so good. Such a simple thing to do and it made my day so much brighter. So, I challenge you, pay it forward. Brighten someones day. You never know, they may have been having the worst day until you did some random act of kindness. It doesn't happen enough. 

Here's an old pic I ran across that melts my heart. 

Perspective

One of my best friends and I got together for lunch today after Karsen's first group therapy session. She and I have gotten so close over the years of knowing each other but even more close after I had Karsen. Her first son was just like my first, ahead of the game, super smart, and super easy. Her second son is very similar to Karsen, had a traumatic birth (Karsen didn't but the affect of his stroke is similar), hitting milestones later than should be, a medical stress case. Not to mention her husband is just like my husband, both quiet and reserved, very particular, rolls with the punches easily, and both also tall and skinny and can eat whatever they want. In fact, at Karsen's birthday party someone thought that Kuper and Jimmy were twins.... that didn't surprise me at all. lol Just last night, Brittany and I were texting back and forth. I was having a hormonal day and was just feeling like I wanted to cry about all of Karsen's struggles. She just gets it. She knows exactly how I feel. She's been there. We both constantly go there. It's so amazing to have someone that just gets it. I got up this morning feeling emotionally drained as well as exhausted since I only got 4.5 hours of sleep but I figured "it's a new day". Let's hit this head on. So, off I went to Karsen's first group therapy session, not knowing what to expect. There was three therapists there and three other little ones with their moms. Everyone was SO nice. But I immediately felt like I needed to take a step back. All the other babies there had such major issues. Karsen was the youngest and was also the one doing the best out of all of them. It broke my heart to see these babies with such a rough road ahead of them. I felt stupid. Selfish. Ignorant. Ungrateful. These parents would be over the moon if their child had what Karsen has. I left feeling like God had put me in check. I got to lunch and proceeded to tell Brittany about the session and how I felt stupid for even reacting the way I did. We are only human. There  is always someone that has it worse than us. I know I am still going to have my days I just want to curl up and cry. That's ok, I accept that. It's healthy. (just as long as it's rare and not super often) I am so grateful Karsen is alive. I'm so grateful he's moving forward. He's thriving. He's happy. He's perfect. I guess sometimes everyone needs a little perspective. Ok God, I got it, loud and clear. ;-) 

New PT

Today Karsen had his first session with his new physical therapist, to replace the one I was not happy with at all. It went surprisingly well. She was very nice and willing to push Karsen, which is what he needs. I can see that we made the right decision by firing the old PT and find her. For now, we will be seeing her once a week. She will be having Karsen's new OT call us to set up our first session with him. She even mentioned the possibility of having two OT sessions a week, one for feeding and one to cover all the other stuff. This put me at ease. I've been so stressed about his eating issues. I would love to see some progress in the food department for this. She also mentioned him needing an AFO(ankle foot orthopedic) soon as well as a different hand splint. This kid and his growing is unreal! I have been keeping all of his splints as little keepsakes, weird I know but it doesn't feel right to just throw them away, plus they were so tiny! Tomorrow Karsen has his first play group therapy session. I'm not sure what to expect. I've heard good things but it just sounds weird. There aren't any other kids in the group that have CP, so it's hard to imagine a play group with kids that all have a different diagnosis. We shall see.

The start of crazy

Well, Friday I got a hold of Karsen's new physical therapist. We have our first appointment on Monday. It's only 2 miles away from our house so that should be easy.  Tuesday we are going to our first group therapy session. I'm excited to see what the group session can do for Karsen and for me as well. Wednesday Karsen has his one year check up with his regular doctor. Thursday we are free! Friday we have OT with the fab Mary Beth. This week is turning out to be a busy one. At our appointment on Monday with Karsen's new PT we will be figuring out Karsen's new OT's schedule so we can get him set up weekly on both. Boy! This kid is going to keep me on my toes that's for sure. I'm looking forward to seeing what progress we'll make with this amount of services. In the midst of all of this, I really wanted to get Karter into preschool this year but I'm not sure if we can swing it, especially with my schedule already. We'll see.... praying it will all work it's self out.

Oh, and still NO seizures!!!! Couldn't be more excited about that. Today actually marks 2 months exactly! 

What a pleasant surprise

I started my morning by calling up on Karsen's services to get him in for more physical therapy and occupational therapy. I was dreading this call, especially since I'm essentially firing one of Karsen's physical therapists. Wow! It was a shock at how nice and easy it was to get through to the right person. Really nice people. That's a first! Karsen will be getting a new physical therapist and a new occupational therapist, but of course we aren't getting rid of Mary Beth! I couldn't ever get rid of her. She's not only Karsen's amazing OT but she's my life line! Cheesy, I know. But she truly is amazing. She has been working with kids with CP for over 8 years. Her knowledge and her passion for her job is inspiring. I would actually love to be a OT once the boys are older. Work with special needs babies. Sound like an amazing job. Anyways, tomorrow I will be calling Karsen's new PT to set up his new schedule (she doesn't work today or else we would have had it set up already.) and then hopefully setting up some OT too. I'm really excited to meet this staff of people a second time. The first time I met them they were all so nice and welcoming. Nothing has changed as far as I can tell from the phone call. I guess I'm so use to thing being such an ugly process but I guess all my hard work in the beginning has paid off. All of our ducks seem to be in a row. I do, however, have to be a squeaky wheel with the referral that is waiting for a response from the pediatric ophthalmology, for Karsen's problem with his eyes. Normally I would be hounding every hour, but his eye seems to come and go and hasn't seemed as urgent as everything else in his case. Got a phone call and a message in to them this morning, tomorrow morning I will proceed with the same work. ;-) We'll do anything for our kids.

Small to you, big to me

Karsen's appointment went really well on Wednesday. First time I've ever been able to say that about a neuro appointment. Everything looked good, so we wont need to see his neuro until early December. What?! 4 months? I don't even know what that's like. We even talked about tapering him off of his last and final drug come December. There is a good chance Karsen could be drug free! I feel so blessed to have a neurologist that has the same views as me. She also agreed she would like to try to take Karsen off of the last drug, something I have heard (from my support group) many doctors resist when the parents ask about it. 

Yesterday, Karsen had a very good therapy day. We went over our usual of motor skills, worked on four point, and worked on sitting (chair like sitting). After that we worked on eating, which as you know has been weighing on me and a huge concern. I wanted to jump and scream when Karsen started feeding himself a rice rusk! You have no idea how happy I was about this. He's still using his thumb as a crutch but that will take time. He already made huge strides in just one day. Then, later in the day, Karsen was sitting play with toys and moving them all from his left side (where I always place them, so he has to cross mid line) to behind his back on the right side. Silly boy he loves to do that. Then, when all of the toys were behind him, he turned him self 90 degrees to get to his toy. Again, I was over the moon.  He's starting the get the concept of moving for things. I have the feeling it wont be too long until we have a butt scooter! He's been doing so good. On top of all this, he is now sleeping through the night. I'm one happy mama! I even was able to get up this morning before anyone in my house was up! That hasn't happened since before Karsen was born. I am so excited to see Karsen scoot across the floor. Go, Karsen!

Here's a little pic of Karsen passed out on the way back from his neuro appointment. He's really been a good road tripper since it ended up being over 8 hours total in the car that day due to traffic. Boy am I thankful to leave in the sticks. Traffic to us is one car on the road, ha.

It's about time

Last night Karsen went to bed at his usual time, 7:00PM. No matter what time we have put him to bed he always seems to wake up at 5:30ishAM not to mention him waking up in the middle of the night to nurse.... *sigh* Sleep is hard to come by in this house. Well, I woke up this morning to my oldest getting out of bed, 7:00AM. What?! Karsen is STILL sleeping? I decided I had to peak in at him (paranoid mom moment) and make sure he was still breathing, plus I kind of missed him. He looked so peaceful, and sleeps pretty funny. Every time I've seen him sleep he sleeps with his right foot through the slots on his crib. Silly boy. Well, he finally woke up at 7:40AM. 12.5 hours of uninterupted sleep! He woke up so happy, as well as Kuper and I. I don't anticipate this being a trend but boy was it nice to get a full night of sleep. It was in good in timing, today we have a neuro appointment which always makes for a long day of driving. For the first time I'm really excited to go see the neuro. When we last talked we had discussed the good possibility of Karsen seeing a neuro surgeon. Since he is STILL seizure free!!!!!! he most likely wont need to see the neuro surgeon. I'm pretty sure this appointment will be pretty routine, finally. Lets just hope the drive there and back with our two monsters goes smoothly.