Things that are taken for granted

The name of this picture is take my hand.

This is one of the days we were able to take him outside. He loves it!

I've always tryed to not take things for granted but after Karson was born I realized that I was. A couple of weeks ago we took Hadley and Karson to toy story (one of his favorite shows) I know that doesn't sound like a big deal but it was HUGE for us , and Karson LOVED it! Ever since Karson was diagnosed we were told it was best for him not to be around people because the more he gets sick the less time we will have with him. Ever since then I have really been PARANOID about germs and being in the hospital 9 times hasn't made it easier . The thing is most of those hospital stays have been because of the progression of the disease not a bug he has caught. There are families that choose to take their kids everywhere but I have never been able to do it . We will take him to places that we will be able to be outside but other than that I can't bring myself to do it. People don't realize how blessed they are to be able to just jump in the car and go at the drop of a hat even if it's just to the grocery store and not think twice about it. Tonight at work this guy that's a new employee happen to mention that his wife was having a baby boy and that it better stay that way. I said" you should just be happy with a healthy baby" then he had the nerve to say" I would take a sick baby boy over a girl" then begins to laugh. Normally, I would have ripped his head off but he didn't know my situation. I was actually proud of myself!

Just a little update.... Karson went septic again from his PIC line I love and hate that thing. Luckily Dr. Swoboda let us stay at home and promise if things were starting to look worse we would go to the hospital . After many sleepless nights and days giving IV antibiotics he is doing better. Can I just say we have practicly the whole ICU in our living room.

The picture at the top comforts me. When I look at it I think of my son walking , holding the Saviors hand.... Please pray for Karson

June 2nd, 2008

This was Karson at his appointment a couple weeks ago with Dr.Swoboda he just got back from getting a new PIC line so he was very tired but thank goodness for the new line.

This was on his Blessing day June 1, 2008 the day before being diagnosed.

Two years ago today we met this amazing woman. This is Dr. Kathryn Swoboda Karson's SMA doctor. I can't say enough how thankful I am for her and that she has never given up on Karson. When she met Karson for the first time in the E.R. she diagnosed him in 30 seconds, no exageration. At that time, she told us we could have a day, a year or 8 years little did we know what she was really thinking. They told us from the beginning that Karson was weaker than most kids, so they didn't expect him to live more than a few months. Well last week we had an appointment with Dr. Swoboda and she was pleased with the way he looked. It's always good to hear that she thinks were doing a good job taking care of him. I have to say that I was suprised that she told us Karson is her only patient with a PIC line and on TPN. I know that he has presented new issues that she hasn't seen before and I'm glad that she has been able to learn from him. She still doesn't know why his body was losing blood but it has fixed itself thank goodness and we are slowly increasing his feedings through his G-Tube.

I am so thankful for these last two years!! Looking back if someone would have told me all that we would be going through I would have said there is NO WAY I can do that. I just remember being told he was going to die and then all these machines and different things we needed to do to give us more time with him. It was so so Overwhelming !!! Anyone who has an SMA child know's what I'm talking about. These kids are full time jobs but you get used to it . I'm so thankful that we have had this time to get to know Karson and we realize the longer we have him the more we love him and more we love him the harder it will be to let him go. We prayed everyday we would be able to get to know our son and have him make milestones .We can honestly say our prayers have been answered.

6 Years??

How is it possible that our little baby girl just turned six years old? I make her promise me all the time that she has to stop growing up. But day after day she keeps on growing. I love it when she says that she wants to be little and live with Mommy and Daddy forever. I make a conscience effort everyday to just enjoy her and Karson and to not take any given moment for granted. Because I know that childhood moments are priceless and sooner than I care to imagine she won't want to live in mommy and daddy's house...........

...........sorry, I have to wipe a tear.............

Anyway, she is a very good little girl and she puts up with a lot. Throughout the past two years, Jody and I have relied on her for strength when we thought that we had none. Going through this trial with Karson would be even more difficult if we didn't have Hadley. WE LOVE YOU!!

My Birthday Present

Karson had not been feeling 100% for awhile and we hadn't heard his voice, his laughter, or his "yelling" for quite some time. We were fearful that his SMA had taken his voice. And then this happened on my birthday, April the 10th.........

and he has continued to talk, "yell", and laugh back to his normal self ever since. I know the clip is a little long but it makes me smile! I LOVE HIM!

My other Birthday Boy

I'm a little late writing this but Darren's birthday was on Aril 10th. I am truly thankful for my sweet husband. I'm thankful that he is mine and I can honestly say he's my best friend.

My Birthday Boy

Today is Karsons Birthday and we couldn't be more Happy!!! He beat the statistics and he has proven that Miracles do Exist!! For those of you that don't know SMA Type 1 is the #1 Genetic Killer of Infants under the age of 2 and 90% oftype one kids die before the age of 2. All of his doctors never thought this day would come and I wasn't to sure it would either. I feel like I've been holding my breath for so long waiting for this day and today I feel a sense of relief. We have worked so so hard to get to this day I just can't believe it. I'm so thankful for Heavenly Father for giving us the chance to get to know our son. There were so many times I pleaded with Him to give us this more chances to take care of him, to love him and spend more time with him and that he would not to have to spend his whole life in the hospital. It definitely has NOT been easy, only the people that are in the same circumstances have an idea of what we have been through. We are so proud of him, for his strength, patience and his will to live.

What Do You Think?

We wanted to get Hadley something that she could keep forever to remind her of her brother so we got her this. It looks a little pink but its silver and it will have their names with the word forever.

The Savior

I just want to say how thankful I am for Jesus Christ. Because of his great sacrifice I can be with my family FOREVER.

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.