My Sweet Boy

I'm happy to say that not alot has been happening and that's a good thing for us. We haven't been in the hospital since the end of January and I can't tell you how happy that has made us. Once a week we have a nurse come and draw his blood to check his blood levels but he has been doing so good they didn't need it this week. His Hematocrit jumped up 10 points in one week which is a MIRACLE. Today for some reason his O2 has been low and ofcourse I had a freak out episode. When things are going well it's almost like we forget that Karson's sick and so when he get's sick reality hits. I know I have to be ok with him passing away but there are days I'M NOT. I ask myself in those moments how am I going to let this sweet little boy go?

Update

Sorry it's been so long I know people wonder about Karson. I will be updating very soon.

Another Week At Home

I Thought I better update before we go back in the hospital again. We ended up being there for 5 days thank heavens it wasn't longer. I was thinking it was going to be a long stay because of how sick he was. The blood cultures never grew anything so they knew it wasn't from his PIC line. He had some kind of infection that they never found where it was coming from. The thing that scared us was when he was admitted they felt a mass in his belly. It was next to his liver so what do we do keep it in there and let him be miserable or take it out and take a chance of not coming off the vent . The good news was the next day when he had an ultrasound it wasn't there anymore. That was such a relief to us!! They didn't give him any blood because his hematocrit was just high enough that he didn't need one. We actually have been home for two weeks now. He had labs drawn yesterday and his hematocrit is on the low end but not low enough. Anything below 30 we go in his is 30.1 they also look at his hemoglobin they don't want below 10 and he's 10 so he hung in there for another week. Please pray for our sweet little boy .

P.S. Hospital Again

Darren forgot to mention were in the hospital again for infection and stomache and blood. I think Karson is trying to compete with Tabitha English for the most hospital stays.

My Son

Karson loves to talk and "yell" at his movies.

I LOVE, LOVE, LOVE this little boy!

He is so pleasant!

He is so full of JOY!

He is beyond patient!

He is quick to laugh and smile and very slow to whine or complain.

I love it when he gets excited, he starts to breathe really fast and his stomach/diaphragm

moves up and down really fast. He gets so excited that he literally shakes his crib

with his little tummy.

What makes him get so excited? Well, when there is a good part on

one of his movies or when he sees his sister for

the first time that day or when his mom gets him out

of bed to hold him.

He loves to have his hair washed by his Mommy,

His eyes roll back in his head and then he closes them. You can read the "Aaaahhh"

"that feels soooo gooooood" on his face.

I love the way he "yells" at his movies.

The truth is, that he inspires me to be a better person!

Huge Update, tons of pictures & video's

I love this shirt because it say's Big RIG Kid (Riggs is our last name)

Karson, Santa and Hadley the week before christmas

Karson and Cookie sleeping.

Look how amazing this little boy is he was very sick on his way to the hospital

Karson and Daddy snuggling


Karen (Physical Therapist) and Margaret (Eye Therapist) Karson loves when they come and play.

This is how Hadley & Karson hug. We wrap his arms around her neck and she sqeezes tight. If Hadley's sad all she want's is for her brother to give her hugs.


Hadley love's to hold her brother the problem is that he's almost as big as she is.


Our Beautiful Girl

This is a little example of what it's like in the hosp.

Karson talking with Hadley

Sorry that's it's taken so long to get this updated. I know alot of people have been wondering what's going on with Karson so here you go. We went in on Christmas evening and came home Dec. 31 . From the last post I had mentioned Karson went septic from his PIC line so in my mind we were going to have to pull the line which is really bad because that's his main source of nutrition. His veins are really bad so we don't have many places for his lines to go in . They put him on 3 Heavy Duty antiobiotics to try to treat the line instead of pulling it. Thank Heavens the infectious disease docs convinced the other doctor's to not pull it. They said it probably will happen again and we'll just have to do the same thing. The problem with this line is that the bacteria goes throughout his body and the line goes in to the top of his heart. That is why it's NOT good. The last stay Dr Swoboda talked to us about

putting an permanent line in called a Broviac in the chest but they would have to intubate and then came the talk of ( DNR)DO Not Resusitate. No one should ever have to have that talk about their child! If his heart stopped he could get brain damage very quickly so how long do you want us to try to revive him or do you just want chest compressions or do you just want us to let him go? They just don't want him to be a vegetable well either do we. Darren said ofcourse we want what's best for Karson we wouldn't let him suffer like that. So I told them if we happen not to be here you do everything you can to save him until we get here to say enough is enough just keep him alive long enough for us to be there when he goes. The reason I am talking about this is that it help's me to talk about it. During that stay, every time the PICU Dr would walk in, I would cring. She thought she needed to tell me that he wouldn't make it if they have to do anything to him. Well, I told her that not many of you thought he would make it out of here over a year ago and he did . I also told her about his Respiratory Arrest he had at 5 months old and he made it without any brain damage (that was a miracle ) . So, she stopped giving me the doom and gloom talks after that. This last stay, Karson was really puffy from all the fluids (TPN and antiobiotics ). It got so bad his hands were purple. Dr. Moloni, the attending that I've never really been crazy about, told me that they were concerned. He told me that they were going to cut his fluids inhalf and see what happens . Then I said "what if that doesn't work ?" Then he said "He's not going to die now . You've at least got a couple a weeks." Thanks alot JERK! I'm so sick of talking with all these different teams of doctors . I'm sick of 10 million people coming in his room and asking me how I feel? Sometimes it's nice to talk, but most of the time I would rather not. Darren and I feel we get our therapy by talking to each other and talking to other families with SMA kids, that's what truly helps me , knowing that their are others that know exactly how we feel.

Ever since Karson was diagnosed at 7 wks I've dreaded having to tell my little, sweet girl that her brother is going to pass away. Dr. Swoboda mentioned to us that she thought now would be a good time because he could go tomorrow or in a year . Hadley has always said things like " when Karson goes back to Heavenly Father, can he eat chicken nuggets "or " will karson be able to play with toys in heaven.?" For christmas , she wrapped her picture up and said that she wanted karson to have it so when he goes to heaven he will remember how much she loves him . So we've always known she had an idea. Darren and I were talking , I don't know what we said but she just flat out asked if karson was going to die. Darren just explained that Karson's body isn't like ours and he's not going to live as long as we are. We told her we wouldn't be able to see him but he could see us and be with us. We also said he would be her angel . Thank goodness for the gospel!! I don't know what we would do without it. Since then, Hadley and I have talked about him passing and I'm thankful it wasn't as bad as I thought it would be. I am so proud of her, she has had to deal with so much for how little she is.

This last month, with the help of my husband and Heavenly Father I feel like I've been able to come to grips more with our reality. I have to believe that I would be OK. I know that I have to live in the now and so when I hold Karson I hold him tight and I give him a million kisses each day ( Hadley too ofcourse). That's how everyone should treat everyone in their lives because you never know what the future holds.

8th Hospital stay

Yes it's true we are here again Karson spiked a fever on christmas eve so they got blood cultures. His body went septic from his PIC line and he needed more blood. Please pray that they can treat the pic line because we don't have many options. Thanks for all your support I will do more updating later.

Karson

What is it with doctor's other than Dr. Swoboda that come in here and think that they need to tell us that he's not going to make it. It makes me so mad it's not their place they don't even know Karson the way Dr. Swoboda does. I've decided I can't talk to them anymore we know how sick he is but he's not going to die today were not dumb we know he is getting weaker. I told the PICU doc last night all of you doctors can say what you want but We just listen to Dr. Swoboda. When we got here yesterday this doctor told me it could be his bone marrow failing and usually when one fails the rest follow. She said all this crap that upset me then I had Dr. Swoboda come in and talk to me and I felt better . She is a fireball and I love it she's alway's putting them in their places thank heavens. Yesterday they gave Karson a blood transfusion and took some more blood trying to figure out his bone marrow . Dr. Swoboda thinks he's having a hard time keeping his red blood cells up maybe because of low iron and it has something to do with his bone marrow I can't remember everything they said but they gave him two iron transfusions and hopefully that will keep us from coming back every two weeks. They don't know why he's bleeding their just treating symptoms so we could be in the hospital for a day every 4 to 6 weeks for transfusions. ( Sorry my thoughts are all over the place) The new medicine he started on I believe is helping his stomach so their increased his feedings to 10 mls an hour. His blood work is much better today so we are going home later today (today is friday) I'm so happy!!

3 updates in 1 about Karson

I started this post when Karson was still in the hospital so forgive me if I sound a little mad and frustrated. Sunday Karson started to vomit again and after many phone calls to Dr. Swoboda she had him admitted on Monday. We brought him in with his belly looking like he swallowed a basketball so we obviously knew his stomache wasn't working. I think this is a good way to vent so here I go. They had taken an abdominal xray monday and his stomach was full of air so they put a tube the size of a garden hose through his mouth down to his stomach and put it to suction. This helped release the air and pull any thing out that was upsetting his belly. He was able to get relief this way but discovered he has been bleeding in his belly so they got a second abominal xray. The next day the medical attending doctor wakes me up and says in so many words that looking at Karson's x ray there's really nothing they can do he's going to die and then tells me she thinks I should talk to the pallitive care team. I immediately call doctor swoboda crying of course and she is mad that the attending would even say anything like that before talking it over with her or the GI doctor. Karson then went for a PIC line ( a line that goes in the vein to the heart) so they can feed him through his vein and dr. swoboda came and sat with him during the procedure. I can't even tell you how amazing this lady is she is such a wonderful doctor and she truly loves her sma kids . I know she loves Karson you can see tears in her eye's when she talks about him. Later that day the medical attending came in to tell me she was sorry she shouldn't have said those things without talking to dr swoboda and dr wu (GI doc) . I knew that she had come in to because dr. swoboda put her in her place and I loved it! Dr. swoboda came in later with Dr violette from paris so he could look at karson and give some idea's and then Dr. wu I am so overwhelmed with these doctors! Long story short Karson's stomach does NOT work . The smooth muscle in his bowel has become week so the plan is feed him a teaspoon an hour through his G-tube and with TPN through vein and give his gut a rest. We went home the day before Thanksgiving and now today is Dec 6 we've tried to increase his feedings to 7 mls an hour a couple days ago and he threw up (keep in mind he has a nissen) so now were back to 5 mls an hour . Dr Swoboda has decided to put him on a medication that the France doctor suggested that starts tomorrow we'll see what happen's. I truly know she is guided by Heavenly Father! Today is Dec 8th and I just got a call telling me that Karson has to be admitted tomorrow. His hematicrit has dropped down to low and he needs a blood transfusion. He's bleeding in his belly still Dr. Swoboda want's him in PICU before we have a crisis at home so here we go again. They have to find out why he's bleeding and try again to get his belly working. Please keep Karson in your prayers!

Back in the hospital again

To make a long story short we were in primarys for five days went home for 4 days and now were back again. Please keep him in your prayers.

Karson's in Hospital

Well I guess I didn't knock on wood and here we are in the hospital. Like I said before in the last post karson has had problems with vomiting for a while. He was doing better on friday but as the night went on I was feeling really uneasy about the way he looked. I just had a strong feeling we needed to bring him to primary's and thank goodness we did. Karson was a very very sick little boy!! The doctors were very concerned about him . He was so dehydrated that he didn't have any secretions which was VERY uncommon for him. We were just expecting to come home after fluids but his sodium level was dangerously high and his white blood cell count was also really high. They said it was a good thing we brought him in when we did before it was to late. So we're hanging out here until the sodium is normal and he can handle his feedings with no problems. Dr. Swoboda thinks that was the reason he was throwing up along with needing to change his feedings. Thanks everyone that has been praying for him, please keep the prayers coming.

Update on Karson

This is a pic of Karson that we took at Hooper Park a few

weeks ago. He really enjoys being outside.

I'm happy to say that we have been home for almost a year and two months. I don't know when we are going to stop telling time based off of that event, but for us it was momentous and it is almost like at that moment, Karson's life started or at least his and our new "home" life began. Anyway, we have been so blessed !! For the last year we have had some minor issue's that we were able to take care of at home and luckily we have the best pediatrician that helped us through. This last summer we have had some really close calls many turning blue episodes due to a couple of colds. The last couple of months have been a bit stressful for us he has had a hard time burping (his burp is through his G-tube) and the pressure causes him to throw up. He had a procedure done to prevent this from happening due to aspiration so when it happens I stress. This is how it goes pressure in belly, throw-up, Karson turning blue , me freaking out. Anyone that has watched their child turn blue can understand the horrible feelings that come with it . This last week we thought he had the flu there were a couple of days that were hard on him . I don't know why I didn't think of this being the reason but his GI system is getting weaker and he can't digest his formula anymore. We started him on a prescription formula that takes less effort to digest thinking things would get better but he must have a touch of the flu. He has been so sick and I've been on the phone with Abby (Dr. Swoboda's wonderful nurse) trying to figure out what to do. Karson has lost over two pounds and we are on the verge of being sent to primary's. Thank heavens his stomach has calmed down a bit and were still at home. I know for a fact that my son is being watched over by Heavenly Father there is no other way that he has not aspirated or even the fact he still is with us today. I have such a strong testimony that prayers are truly answered.

Hallow's Eve 2009

Hadley wanted to be a Spooky witch this year..

...BOOOOOOO!

She got scared by a few costumes this year and wanted to cut the trick-o-treating a little short. But she still got way to much candy as usual.

P.S. Karson didn't feel good on Halloween night so we are going to dress him in his costume later just for fun.

My Sweet Baby Girl....

Can I just tell you all how much I love this little girl!! She is the cutest, sweetest, smartest, funniest, silliest, kindest, little girl in the whole world. I love that she imitates what I do and say.(Most of the time) I love that she loves all of the things that I love just to be like me. I LOVE that she loves the Cougars and BOOs the Utes. Even though I don't think that she completly understands why. I love the way that she makes her little brother light up, just by hearing her voice. I love that she is my very own "daddy's little girl"

....and I love, love, love that the back of her BYU jersey says, RIGGS!! What can I say???.. I LOVE HER!!!

What Karson thinks about his Big Sister!

Pardon Hadley for going a little too far and being a little loud! However, this little boy LOVES his big sister!!! His little, timid laugh is far beyond music to our ears!

P.S. We just invested in a "flip" video camera, so look forward to many more little videos in the future.

Get ready.....

for many, many posts in the upcoming days. We have been gratefully busy since August. But we are getting ready for a long cold winter of keeping Karson away from possible sick zones and documenting ever moment!

Riggs "Piggs"

Picture Sunday

We went for a Sunday drive with the mission of finding some cool places to take pics of the kids. We found this cool little park in Roy.

I told Hadley to go and sit on this rock, for a split second I look down at my camera and when I look up Hadie is posing like this. Where did she learn to pose?

We are going to take Karson the next time we go to this park. There are a lot of cool places that we can shoot some pics of both of the kiddies. More to come!

Karson's One Year Old Pics

One Year Ago Today

This picture was taken the day before he was diagnosed.

It just so happened to be his blessing day too!

It's been one year ago today since our sweet little boy was diagnosed. I have so many thoughts and feelings that I want to share with everyone or maybe it's that I just need to talk about it. When Karson was born he had to go to NICU for some minor issues that we thought were from being born 3 wks early and even the day we brought him home from the hosp we ended up in the ER due to his breathing. Then at about 5 wks, my dad asked me why he didn't move his arms. I just thought it was because he was early and tired, I just didn't think about it. Darren had been wondering the same thing but never said anything because I am such a worrier . I made a couple of appointments with the Dr. but I ended up canceling them thinking "he's fine". But the day before his blessing, he was sitting in his car seat and Darren was hammering something. I remember looking over at him to see if he would startle and all he did was blink his eyes. I think I knew in my heart something was wrong. The next day, I took both kids in for a checkup and while I was in the bathroom with Hadley Dr Baranko checked Karson . The second I walked in the room she said "I'm so sorry but something is seriously wrong with him. He either has muscular dystrophy, MS, or SMA". I didn't know what SMA was so I asked and she said "we won't talk about it that because that would be the worst." To say that I freaked out would be an understatement! I immediately called Darren and he knew why I was calling. We were sent immediately to Primary's because of Karson's breathing and when we got there they were waiting . Darren and I sat in a room with Karson and my mom waiting to see a doctor. The minute they checked Karson out they were very concerned and told us we would have to wait four weeks to get blood work back to see what it was. At that very moment, one of the neuro doctors walked in and said it just so happens, that Dr. Swaboda, one of the top SMA doctors in the world, was walking by and that she will come in and take a look at him. Dr. Swaboda walked in, pulled on his arms and looked at the involuntary reflex of his tongue and within 30 seconds diagnosed him with SMA. She said I'm going to be straight with you he could die today, in a month, a year or even 4 years, every kid is different. I can't even explain how devastating that was for us. I remember begging Abby (Dr. Swaboda's nurse) to just to tell me that I had a year with my son and she said "you know I can't do that".

Today is one year later and I am sitting here next to my son's crib as he takes his nap and I know that our time is limited with him, but I can't express how grateful I am for this day and that I have with him here with us. I'm thankful for time, because it heals! I'm grateful that I don't wake up everyday shaking from anxiety and feeling afraid every second of everyday. I'm grateful I can sleep at night without waking up and crying. I'm so thankful that I have my husband and my little girl that give me so much strength. Darren and I both agree that as long as Karson is on this earth we will not plan a funeral. Right now, Karson is alive!!! We want to celebrate that fact and cherish every single moment that we have with him. This in no way means that we are naive to our brutal reality. In fact, it is the exact opposite. Because of our reality we are choosing to not waste a single moment of life. If only we would treat all of our relationships this way! Because you never know what the future has in store for us or our loved ones. However, Darren and I have talked casually about cemeteries. To say that we have come a long way in a year is a understatement . I never thought I would be able to talk about that so bluntly! Darren has said on various occasions that although it is so unfair that we, as parents, have to talk about the impending death of our child, that we can do it and can go on with our lives!! What a difference a year makes!!! We're so thankful for his machines that assist him everyday. A year ago, we hated and resented them so much and now we come to love them. We're so thankful to our Heavenly Father for listening to our many prayers and the prayers of hundreds of others and that He has given us a chance get to know our son. Were thankful for the miracle that is Karson!