Down to only one

Today marks day one of Karsen being only on one med! He's been completely tapered off of the prednisone. It's hard to say if he's his normal self since it's been months since he wasn't on anything and seizure free. In fact he was quite little and didn't do much. So, I'm getting to know Karsen all over again. Boy does he like the sound of his own voice and he is LOUD! It makes me laugh, I remember telling Kuper when we were pregnant for the first time that I refused to have a child that would scream for fun. Ha! Not much I can do about it now. Plus, I let him do it since he hasn't had a voice for so long it's nice to hear him make noises. Oh yes, I am a sucker. 

Today I received an email from one of my fellow MOPS leadership friends, it talked about putting our info out for new moms to have so they could contact us and any helpful things to add to it as well (ex. I enjoy running, soccer, and knitting... that sort of stuff, to help new moms connect to us easier). Such an awesome idea. For those of you that don't know what MOPS is, it's mothers of preschoolers (not just true preschoolers, it's pregnant to kindergarten). We have meetings once a month (not so much a meeting... it's craft, food, guest speaker and socializing..... it's so much fun) and then play dates and field trips every month. It's a christian international organization. I've been a part of MOPS since Karter, my first, was 6 months. I'm now on my second year in leadership, which I love, it's amazing to see it grow and find many new moms that are searching for friendship, help, or God (obviously he applies to all ;-) This is my second year as play date coordinator. When I first got Karsen's diagnosis I wasn't sure if I was up to the challenge to stay the play date coordinator, but it's been a pleasant distraction and Karter LOVES going to all the play dates. So, when I read that email today and started thinking of ways that I could reach out to new moms, what to put about me.... then one simple title popped into my head; special needs mommy. Am I? Do I fit that title? Every person I have met in my life that is a special needs mom is so amazing and loving and nurturing, patient, and wise, someone I would strive to be like as a mom. Do I fit the description? Loving? ok got that.... Nurturing? I think I am... hopefully.. lol... patient? Ha! not so much! Wise?... does google count for helping on the wise part? ha ha. It's been such a roller coaster of emotions this year. And after having all the doctors appointments, the therapy appointments and all the referrals you think I would have gotten use to the term special needs. I guess it's still a shock.  I've hit the stage of acceptance with Karsen's struggles, I just hope I can meet all of his needs. I pray that I can be a perfect mom to both Karsen and Karter. I pray I spend enough time with each of them. I pray I'm that mom that inspires other moms, the ones I met before I ever knew I would have special needs child. I am so grateful and taken back that God finds me strong enough and mommy enough (woman just doesn't cover it) to take care of these two precious boys. These two miracles. May He guide me endlessly to nurture and care for His children. May He guide me in His foot steps, walk His way. Be that example for my boys. Be that example for strangers. I've already found through this first year of Karsen's life His way is so much better than my way. Why do I always feel like I have to have control of my life. When I've given it to Him... What beauty, what peace, what perfection. So, yes, more info about myself? Special needs mommy and SO proud! 

Look at my lefty grabbin on to the basket. Proud mommy moment!
Oh, and side note: Still no seizures!!!! Woo hoo!!!!

Another referral?!

After talking to our neuro and telling her about the eye doctor appointment she said she still wanted to send Karsen to the pediatric optometrist. I was relieved. I wanted to ask but didn't have to. I could care less about the drive, these people are amazing! So, of course our appointment will be in Palo Alto again. But as I said, I really don't mind. I want to make sure everything is ok with Karsen's eyes. The paperwork has been sent in, we are just waiting for a phone call to set up the appointment. Not sure how long that will take. I have the feeling I'll have to make the drive down twice this next month. Oh well, we'll just have to take Karter to that children's museum that we found the last time. Totally awesome, and it's free! I'm pushing to try to get more therapy for Karsen. I feel he's at a stand still right now, and I need some more guidance on what I can do with him at home, not during therapy. I read about fellow hemi kids around Karsen's age, receiving 5 therapys a week. We only have two. So I have no clue how people are getting that many. I'm trying my hardest to just get one extra every other week. The problem is they wanted Karsen to go to a baby group that meets at the center. It sounds amazing, but we couldn't go because Karsen was on prednisone, which lowered his immune system. Then I also found out you can't bring siblings 3 and up. Well.... Karter will be 3 on September 5th. Karsen finished his taper of the prednisone on Monday. That doesn't really give us much time as far as being able to make it to baby group. In fact, we'll only be able to make it to two of them. Then we can't go anymore. I'm a little nervous about going anyways. Taking Karter with me to Karsen's appointments is hard enough, taking him to therapy at a place that isn't home.... that's going to be interesting. I know I'm going to be totally distracted, making sure Karter is playing nice and not getting in the way of others. I'm actually kind of dreading this. Plus the other babies at the group have an array of different problems. Karsen is the only baby with hemi cp. No clue what to expect. I'm hoping to get chance to talk to one of the ladies there that is some sort of food specialist since Karsen's eating isn't the greatest, which is stressing me out. I don't like that I have to wait so long to meet with her. It will be mid August when I can make it to the baby group and meet the team there. I'm really hoping I can get Karsen more services. He really needs it, he needs to be pushed, as well as I do. Fingers crossed and praying hard as always. 

Oh and still seizure free!!!! I don't think I'll ever feel like I can let go of the constant watching to make sure Karsen isn't having a seizure.

Don't worry, the car was parked. ;-)

Overreacting and over analyzing

Looking back, I think it's safe to say Kuper and I jumped the gun. I thought Karsen had another seizure a little bit ago, I blogged about it. I watched the video over and over again. I have been caught watching it now even. The thing with his seizures is they can be hard to spot sometimes. What may look like nothing is something. Those of you that know what Infantile Spasms are you know. So, when we hit the two week mark of our taper off the prednisone I got paranoid. If his seizures were to come back like we thought he would have had a lot more than just one that day, especially that week. We have seen zero signs of seizures. I think it's safe to say he's been seizure free for over 4 weeks. Today  marks three weeks since we started his taper. I pray they stay away and feel very hopeful they wont return. Only time will tell. Karsen is doing so good! He's got so much drive to play now. He's doing so much better at therapy. I'm still a little worried about his eye. So, his neurologist is going to refer us to a pediatric optometrist, of course in palo alto. But really I can't complain. They have been amazing there! I would drive 6 hours if I had to to insure Karsen got the best care possible. We move mountains for our children, right? Our appointment with the neuro is on the 1st of August. Hopefully we are avoiding meeting a neuro surgeon. Fingers crossed and praying hard.

Happy Birthday little man!

I can't believe it's been one year since my little miracle came flying into this world. Since Karsen was born the day after my hubby and my anniversary, and we always celebrate our anniversary in Tahoe where we got married, Karsen got to celebrate his first birthday in Tahoe. Since I was on crutches and it was dumping (rain in July in Tahoe isn't normal at all) it wasn't the usual trip. We still found ways of having fun. Most of it was in the arcade where Karter had probably the most fun. 

Happy Birthday, my precious perfect gift from God! I'm so blessed to have you. You truly are a miracle and amaze me daily.

 Ignore the mess... we're busy making memories. ;-)

 Hardrock Cafe, where we eat every year during out visit.

 Where we got married 6 years ago. 

 His new favorite thing to do: play with his toys in a basket (look at him side sitting all by himself!)

Happy Birthday Karsen! I love you more than you'll ever know!

Party time

Yesterday we celebrated Karsen's first birthday with friends and family. It was the perfect amount of people. Not too many, although I think at times Karsen may have been over stimulated. Oh, and I forgot to mention that he got bonked with a box by one of his friends and then another one of his friends bit his toe. lol Yep that's right, bit his toe. To Eli's defense I think he thought it was a puff but holy moly did Karsen have a teeth mark on his toe. It took awhile to calm him down. But all in all, it was a successful party. He loved his ice cream cake, although he still doesn't get the concept of putting food in his mouth with his own hand so I was having to scoop it into his mouth myself while he proceeded to play with the frosting. (Made me a little sad he couldn't enjoy the simple pleasure of diving into your birthday cake, maybe next year). So many of Karsen's friends were there, even his hemi pal Olivia who is just two weeks younger than him! I'm so blessed and happy to have Marlisa (Olivia's mom) and Olivia in our lives. It's made this journey easier to handle having a friend that understands exactly what I've been going through. And Geez, Olivia is just so darn cute!

Olivia and Marlisa

 Our perfect little family

 The birthday boy

 Cake time!

These two know how to tug at my heart strings. Love my boys!

A year ago

A year ago today mark Karsen's due date. I was convinced he was going to come early, but low and behold three days late he came into this world. Today Karsen gets to have his OT session at the center. I'm pretty excited about this one. We'll be able to use all of their fun equipment. It's been two weeks since he's seen Mary Beth and I can't wait for her to see the progress he has made. He's still not moving and I wouldn't expect him to anytime soon but he's so much more confident sitting and is starting to play a lot! It makes me so happy to see him actually wanting to play with toys and having so much fun. Yesterday, one of my close friends helped me out a ton! I had to get all of the stuff for Karsen's party for Saturday. Since I couldn't hold Karsen it made it really difficult to get around, I couldn't even figure out how  was going to get Karsen in and out of the car. Thank God for amazing friends. For the first time in a long time I wasn't sad for Karsen. My friends son is 4 months younger than Karsen I believe, and he was army crawling all over the place. So neat to see babies learn how to do things. Normally I would be pouting to myself about how Karsen isn't moving, but he's made so many improvements and he was just so happy to be sitting and playing with Eli's toys. Hard to be sad when he's so happy. I felt that yesterday was a pretty big breakthrough for me emotionally. May sound small and simple to you but huge for me. So, today my mission is to make the cupcakes for Karsen's party and attempt to clean up the house with out over doing it. I don't know how people that have a disability have kids. I'm exhausted! I can't wait for my ankle to be back to normal.

Really?!

For a change of pace I'm going to be talk about me a little rather than Karsen, don't worry he'll be in this story a little. In March I completed my first half marathon. After an extreme runners high, I decided to sign up for a full marathon, it comes up in December. My official training schedule was to start this week. As time carried on I began to think I was quite stupid to sign up for a full marathon. What was I thinking? Really though. What time do I have to train? Yesterday it was gorgeous here! Perfect running weather. My girlfriend that is running the same marathon sent me a text basically saying 'no excuses to not run this weather is perfect, 20 weeks and counting'. Oye! Ok, time to get serious. I was spending sometime with my long time best friend yesterday and her husband. We decided to walk the trail, which is right next to her house. The only thing you have to do is maneuver down a steep hill and through some barbwire. I was doing this all with both boys in the stroller. Any one else thinking this wasn't a smart idea now? Well, we finished our walk and started to head back since Karsen's appointment was in 15 mins. My friend and I lifted the stroller together to start heading down the hill then through the barb wire, and then up. Well, the first hill was all we made. My right foot slipped, all my weight landed on my other foot all sideways and tweaked, and the stroller followed. I knew right off the bat, this was bad, I wasn't going to walk away from this. Thank God (literally) for Jenny and Jarrett. Oh, and I can't forget about how connected my boys are. When they saw me on the ground in pain they both freaked out. It took awhile to calm them down, I held each of them as I sat on the ground watching my ankle swell every second. Jenny hustled and the boys to the car while Jarrett carried me through the barb wire and up the hill. I don't know what I would have done if they weren't there. We were joking saying I would still be on the ground today. Well, in all that hustle we still made it to Karsen's eye appointment, which was really useless because he isn't sure whats going on with Karsen's eye. Was able to take Karter to the park and then head back home. I drive a manual so there was no way I was going to be able to drive myself. Jenny and Jarrett drove me home and started dinner for Karter after taking care of me the rest of the day. They are awesome! My mom also came to the rescue and has switched me cars so I can actually drive places until I get better. FUN Tuesday, huh? So I think it's safe to say I will not be running the marathon in December. I have the sneaky suspicion that God was doing for me what I couldn't do for myself. Ok God, got it. My plate was too full. Did you really have to slap me in the face to get my attention? Don't answer that.

Because I know you're dying to know what it looks like here's my ankle after some of the swelling went down.

 My my new fashionable look. 

99% sure

Over the weekend Karsen's eye problem has seem to get worse. Today during PT I didn't say anything to her to see if she noticed. First thing out of his mouth is "Has Karsen seen an eye doctor yet?" *sigh* Wednesday can't come soon enough. About an hour before PT I'm pretty sure Karsen had a seizure. *Grrrrr* My heart sank when I saw the first spasm. I sent an email and made a phone call to our neurologist. We are waiting to hear back from them. They should be calling today. I'm just not sure if they are going to try to switch something around or if they are going to refer us to a neuro surgeon right away. I so badly want Karsen to had a 1st birthday party like any other kid would have. The two fears that pop into my brain is non stop seizures during the party, or appointment with the neuro surgeon that prevents us from having the party. I feel like I've been able to be pretty up beat and positive about everything with Karsen but he also wasn't having any seizures either. So here I sit, waiting for a phone call. Seems like all I can do is wait, and that's the part that is the hardest for me. I want to be able to dive in and fix things, then hit the problem head on. Move forward. We just can't seem to get past this seizure hump. Lets hope we can get this sorted before the weekend so we can celebrate our little mans birthday along with my hubby and my 6th anniversary!

Here's a pic where you can see what his eyes are doing. They have NEVER done this before.

Bad timing

Why does it seem, whenever your child gets sick, your dog eats chocolate, you hurt your back, ect, your doctors office is closed? Is that a part of murphys law? I don't like it.

Over the past 4 or so days, Kuper and I have noticed Karsen's right eye starting to pull inward. It's been only happening every now and then but today it was really bad. Here's the weird thing, if one of his eyes were to be weaker and pulling off one direction it should be his left, his affected side. Of course Karsen's eye doctors office is closed on Fridays. OF COURSE! So, I emailed our neuro. As always she was very prompt with getting back to me, with in 5 minutes after I sent the email. I will drive 6 hours round trip to her in a heart beat! She's amazing! Our concern was a possibility of side effect from the meds, or another type of seizure development. So, next order of business.... Catch it on video and email it over. I can't tell you how grateful I have that we have the technology we have today. It has saved us so many times. So, here I am waiting for Karsen to wake up from his nap to put my phone straight in his face for a few minutes. Let's hope murphys law doesn't come into play, I want to catch it on film! (Whoa, film? Did I really just say that? Do people say that anymore?) And as far as we know, Karsen is still seizure free! Sunday will be three weeks.

So far so good

Still no seizure action. Woo hoo! And now that we are tapering off the prednisone, Karsen is so much more happy! He's been sleeping a lot better at night. Maybe I can actually start getting out of bed before him so I can start training for my marathon. :-/ We'll see. Mornings and I don't get along but since Karsen has slept through the night 3 out of 4 nights I feel much better and up to getting up easier than usual.

Karsen's birthday is 12 days away! I realized, the other day, when someone asked me how old Karsen was I told them 10 months. Whoops! I can't believe it's almost a year! I have such mixed emotions about it. On one hand I feel so blessed he is alive and doing relatively well. But the other hand I feel like we got robbed of some many months because of all the medical stuff. I wish we could back up just a little bit. I think I felt the same way with Karter when he turned one too, but we didn't have a single hiccup his first year of life, in fact we still haven't. The most tragic thing that happened to Karter was a wasp sting. Such small potatoes compared to Karsen.

I found myself quite irritated at a stranger the other day. I realize she was trying to make small talk but it was still aggravating Karsen was sitting up, nice and straight playing with his friend who is just a little over a month older than him. Of course his friend is crawling all over the place and starting to walk, for once I wasn't sad that Karsen couldn't do any of those yet, I was just so proud he was sitting so strong. This lady comes over and asks how old Karsen is and if he always just sits and plays like that not moving all over the place. I told her Karsen wasn't a mover yet. He had his thumb splint on, his new one that is pretty bulky, I would have thought she would have seen that and not said anymore. Instead, she tells me I'm lucky. WHAT?! Luck?! are you out of your mind? I always hate when people would say that, even when I had Karter. Why would not want your child to thrive and learn to do new things? Lazy people just don't want to chase their kids. But this particular conversation made me flat out mad. Again, I know she was just making small talk but sometimes I want to put a shirt on Karsen that says please don't ask today, my mom is sensitive. Well... that's the truth isn't it? lol My husband would have to agree. I need to start coming up with responses that are the polite way of saying "I don't really want to talk to you". Any suggestions? ;-) Well, enough venting for now. I'll keep you all posted on how Karsen's appointment goes today.

In waiting

I can't stand the waiting game. We are now at a week since we started tapering Karsen's prednisone. So far so good. Still no seizures, though we were told if they come back it will be the two to three week mark after the taper starts. So, we wait. Just like we have with everything else. You'd think by going through everything with Karsen I would be a more patient person.... ha! Not so much! I'm still so impatient. Karsen is doing much better at nights. He sleep through the night two nights in a row. I didn't expect this to be a pattern, which was a good thing, because last night he got up twice. :-/ His mood seems a lot better during the day. He has a little more drive to play with his toys and actually ate a rice rusk on his own this morning. Getting him to feed himself finger foods has been a chore. He still doesn't have the pincher grasp down, not sure when he'll get that. We have an appointment with the physiatrist tomorrow. It's our first one. To my understanding they are just going to make sure Karsen is getting all the services needed to help him perform to his fullest. We'll see how this goes. The one thing that's super nice, it's 2.5 miles away from my house. Closest appointment yet! Let's hope it's an easy appointment. 

Sensory fun

Who knew therapy was fun?! I put together two sensory bins for both boys. It was a huge hit today! Karsen played in it a lot longer than I expected and Karter is STILL in them! lol Life is rough as a kid, huh? Being a mom gives me the excuse to play in it though. ;-)

 Does this baby look sad to you? So happy to start tapering him off some drugs. I think he is too.

Couldn't resist this photo of two hand play. ;-)

Slight light

With rough nights still in the mix, the days have been hard but rewarding. Karsen still isn't sleeping great, wakes up ready to roll at 3:00am. I'm not sure if it's because of the taper of the prednisone or if it's just from the side effects from the prednisone, either way I'm ready for him to be off them. It's going to take us a total of 4 weeks to get him off it completely. Oye! Lets hope the sleep thing wont be the whole 4 weeks. 

Karsen had his usual OT today. Today, he had three people come. A reevaluation of sorts I guess. I'm not quite sure what was going on with Karsen but when everyone got there he had JUST woken up from his nap. He was happy. But when I sat down and he saw everyone he freaked out! Started crying and screaming. No clue why. After some coaxing he calmed down and was able to do some work. Not as much as I would have liked but still some work. Mary Beth, his OT, was shocked at how different he was just in the last week (clearly part of tapering him off the prednisone) he was so much more alert, talkative, and so much better at balance control. I can't wait until 4 weeks from now! The team of people there were talking about Karsen and how much better he was doing today, then said that is shows how hard I work with him when they aren't around because of his progress. I wanted to cry and give them all a big hug. I think as parents we always worry we aren't doing enough, as a parent of a special needs child it goes beyond that. I always thing everyday "should I have side sat him more? or should we have worked on rolling more today?" and at the same time worrying I wasn't playing with Karter enough. Mary Beth had also told me Karter was handling the sessions great! and told me "you're doing an amazing job in making sure each child gets enough, it shows" tears of joy over here! You guys all made my day! Not to mention Sara, his teacher, brought me some yummy smelling soap. 

Ok, so the lack of sleep is not the worst thing ever. I will survive. (hopefully ;-) Hearing that made my day, heck it made my week! I feel so blessed with the team of people supporting my family. It truly does take a village to raise a child. Love you all!

Since Karsen's first birthday is this month, I thought I would post a newborn photo. Check out my sweet little man. Can't believe that was almost a year ago!

Clapping

Thought I would share a quick clip of Karsen doing some two hand action. So proud of my little man. Can you tell I cheer and clap for him a lot? He's pretty much amazing! ;-)

Time to taper

Karsen's appointments went great yesterday! We got the OK to start tapering him off the prednisone. Last night was the first night, and boy could we tell a difference already! He slept SO much better. This morning, he's been wanting to play with his toys more and so much more alert. I can't wait until he's off of it completely. Our hope is once he's off the prednisone, his seizures wont return. 

We have a follow up appointment 4 weeks from now. I love his neurologist but the drive is KILLING me! It wipes out a whole day! I'm so thankful my hubby takes the time off to come down with me so I don't have to tackle two kids in the car for more than 6 hours alone. But I feel awful he has to use his vacation time to have it sucked up by mostly driving and two cranky kids since they've been crammed in the car for so long. It makes for a rough day for all. 

Karsen's PT had to cancel on Monday because she was sick, so I'm going to try to make up for it and do some serious PT today, especially since we lost a whole day yesterday as well. 

Happy 4th of July! Hope you all have a fabulous day! Enjoy your independence! 

Oye

My poor baby! Ever since we have started him on his new med, almost 4 weeks ago, he's been super out of it and progressively getting more cranky at night time. I have started to get really worried about him. Two nights ago, and last night gave us a glimpse reminder of what Karsen's first 5 months of his life was like. Kuper and I are pretty shocked we are still married... no really.... we can both be pretty mean when we don't get enough sleep consistently.  Last night, Kuper and I hit a point with Karsen that I felt something was just not right. Call it mothers intuition or whatever you want to call it I just knew. He was waking up two or so times a night which is awful except we was SCREAMING! Nothing would calm him down. Nothing! I felt bad for Karsen because I wasn't able to figure out what was wrong and help him, and I also felt awful for Karter who, in the past two days, got very little sleep due to his brother screaming his head off about 3-4 hours a night. (they share a room) After a phone call to the on call neuro (so grateful for them) we agreed with what the neuro had thought. He believed Karsen was having a reaction to the meds. He wanted us to wait until Monday to call his regular neuro to see what she wanted to do. There is a good chance, especially after the last week, that we will start tapering him off his meds sooner than planned. It breaks my heart he is so medicated. I wish I could take this away for my baby.  Tuesday, we have an appointment with the urologist and neurologist. It always seems the ugly stuff happens after hours, or on the weekends. Praying my boys both get a good night sleep, along with Kuper and I. Bless my husband for letting me try to get some sleep in the morning and then watching the boys while I took another nap. Feeling a little better. Just ready for tomorrow morning so we can talk to the neuro.