Update on Karsten

OK, for those of you who do not know, our little Karsten who jut turned 2 on Jan. 20 was diagnosed last July with a blood disorder called Idiopathic Thrombocytopenia Purpura (ITP). The Dr. said Idiopathic means they are idiots and do not fully know the reason some get it and others don't, Thrombocytopenia means low blood platelets, and Purpura means purple patches or spots. Basically Karsten woke up one morning and I noticed more bruises than usual and some funny purple/red pin point spots on various places on his body. We were in a hurry that morning, running late for a play date at the park so I didn't think too much of it. Just thought him and Kevin had played extra rough the day before. So off to the park we went. The kids had so much fun playing and were more than ready for naps when we got home. When Karsten woke up I brought him down stairs to change his diaper. When I pulled his pants off and lifted his shirt, It felt like my heart just stopped. I was in shock. Karsten was literally covered from head to toe, including the bottoms of his feet and palms of his hands with horrible bruises and those red spots that I learned are called Petechiae. I immediately called his pediatrician and rushed him in. They drew blood for tests and sent us home to wait for the results. The Dr. called late that night and said that the lab had messed up his sample and I needed to go in first thing in the morning and have it redrawn but she was pretty sure about the cause and cautioned us to be EXTREMELY careful that he did not even bump himself on anything. (Yah, try preventing that with 3 boys under 3 years old!) They re-did the blood test and determined his platelet level was at a 2, normal platelet levels are 250 - 450! At the same time I got the results for an ultrasound that Kayden had that morning also and getting the news on both of them at the same time was agonizing. I broke down sobbing in the Dr.'s office. She just put her arms around me and told me that I would get through this, I am a mom and stronger than I think I am. Those words gave me so much strength! They put Karsten on Steroids to bring his platelet levels up. It took longer than usual for them to work and at one point his levels went down to 1. Just to put it in perspective, you can not have any type of surgical procedure if your levels are down to 50, anything under 20 is considered dangerous and anything under 10 is considered critical and at risk for brain hemorrhage and internal bleeding. Life was pretty scary at our house for a while. The poor kid had to wear a helmet at all times unless he was asleep, and it was summer! When I think back to that day at the park, I just cringe. Any number of things at that park could have potentially taken his life. I remember him running on the sidewalk, getting ready to jump off of the playground equipment, even just rolling down a grassy hill. He definitely had an angel with him that day, there is no doubt in my mind. I have talked to several people including friends that are Dr.'s in other places and they cannot believe that they did not have him in the hospital through all this, it was that dangerous.

This picture was taken that day at the park,

had he fallen off of that swing.......

This is Karsten about 2 weeks before being diagnosed

These were taken a few weeks after being diagnosed, while on the steroids and his levels were only at 3. He actually had a perfect hand print wrapped around his ankle, just from us holding his leg up when we changed his diaper.

This is Karsten now. He has been off of the steroids for a little while now and his levels were at the high end of the normal range for several weeks so he went down to just having labs done once a month. This was a huge step for us since he had been having blood drawn every couple days at first then once he got above 20 went to once a week and did that for 5 months! Poor little guy got so good at giving blood, as long as he sat on mommy's lap and held his blanky he did awesome, even laughed sometimes when he would see the blood start to go up the tube! He was a real trooper through it all. His labs came back last week barely in the normal range, the lowest they have been since going off of the steroids. I got a little nervous but the Dr. is still happy with it so I feel a little better. The Dr. also told me that Karsten is in the higher risk category for having a relapse due to the fact that it took so long for him to respond to the steroids and how low his levels kept dropping even while on the steroids. Normally with his levels up to what they have been, she would have stopped the labs and monitoring by now with any other patient but because of his risk factors she wants to continue with the monthly labs for a while and then go to once every 3 months, once every 6 months, then once a year. All in all it was a reassuring visit even though I was a little surprised to find out about him being at a higher risk for a relapse.

We are now back to going about our lives as normal, however I will always have it in the back of my mind. I find myself at every diaper change, checking him and making mental notes about how many bruises he has and where they are. When he gets more than a couple I get that nervous feeling and think "oh no, please no". I know it is just me being paranoid but with everything we have been through, I just can't help it.

Just life!

Johnny took Kevin over to the half price movie in Othello this afternoon so I decided now was as good a time as any to update my blog. We were all supposed to go to the movie but Kevin was the only one who took his nap like a good little boy so he is the only one who got to go. Funny cause he is the only one who would have been o.k. if he had NOT taken a nap.

Last week was a very momentous occasion. Karsten celebrated his 2nd Birthday! Our family tradition is that for every birthday they get to go on a special date with mommy and daddy and then come home and have cake and ice cream as a family and we only throw a party for their 1st birthday's and then again when they turn 8 but after everything this little guy has been through this last year we thought it was important to celebrate his 2nd year of life. Tomorow we head in to town for his monthly blood work. Pretty sure he is over the ITP but they want to continue to monitor him at least monthly for a while just to be on the safe side. Appearently there is still a chance it could come back at some point so it is kind of just a wait and see. Even though his platelet levels have been in the normal range for a good 2 months now, I still cringe and get sooo nervous anytime I see a bruise on him. You can imagine with him being a now 2 year old and having a 3 year old brother, he is pretty much guaranteed a good bruise fairly often so I am on edge a lot with him. Next Tuesday we head back up to Spokane to meet with the Oncologist/hematologist at Sacred Heart Children's for sort of a follow up on all his lab results and what we might expect from here on out.

Kayden now has 2 teeth and is still NOT sleeping through the night. At 8 months old, I'm still waiting for a good night's sleep! He is getting the cutest little personality and tugs at my heart strings every day. He had a check up the other day and is now 26 lbs and 30 inches long! What happened to my baby? I guess he never really was a tiny baby weighing 9lbs. 11 oz. when he was born. He is trying to crawl but I think it is a little harder for him with being such a big baby, he does get up on his hands and knees and rocks himself but that is as far as it goes. He is getting very good at standing up to the couch and thinks something about it is funny cause every time he does it he just stands there and laughs.

Kevin is turning into such a little mommy's helper. I have so much fun with him in the kitchen. He thinks if I am in there he should be too. He even helped Daddy make mommy's birthday cake! However the other day he learned an important lesson. He got my new craft knife down and opened it out of the package and took the cap off of it. Appearently at this point Karsten was trying to get it from him and so he thought a good way to keep Karsten from getting it would be to throw it. He usually has really good aim and if his foot was his target then he hit it right on! Ya, he stabbed his foot pretty bad and to make matters worse, Karsten then picked up the knife by the blade and cut his finger! So where was mommy when all this happened? Well I NEVER take a nap but it just so happens that on this morning I had had a really bad headache and had been up with Kayden for almost 4 hours in the middle of the night so Johnny thought he would help me out and let me take a nap. So much for that idea, not only did Kevin learn a lesson but so did mommy! No more attempts for naps for me!

Well I guess that is enough for now. As of today we are all doing great and every day is full of adventures for us with these 3 sweet miracles that fill up our hearts.

Really need to get better at this!

Wow, I thought I'd be able to keep up on this better! We had a very busy month last month. We did get great news on Christmas Eve regarding Karsten's blood count, he is still holding strong and has now moved down to only having it tested once a month now! What an awsome Christmas present! We will be taking him back up to Sacred Heart on the 4th of Feb. to talk to the Pediatric hematologist/oncoligist about what may happen from here on out but everything is looking like he is out of the woods on this! We had a great Christmas, kids were sooo cute with opening presents. Even Kayden got in on the action, his favorite toy was definately the wrapping paper! Best Christmas ever. December was definately a month of blessings for our family. If there was such a thing as too many blessings, that would be our family. We are truly greatful to our heavenly father for his love and to those he used to deliver our blessings through. John starts back to work today on his new shift still very sick but after two weeks of being off of work, he is looking forward to being back. It will be quite an adjustment for us all now that he will be working swing shift rather than days and lucky me, I now get to struggle with all three little boys at church by myself:) This should be interesting!
Kevin is now a Sunbeam and did suprisingly well on his first day thanks to an awsome primary leader (Thank you Stephanie!) for coming up with a great idea to get him to stay with out crying the whole time. Another HUGE accomplishment for this wonderfully strong willed little guy, he is now officially POTTY TRAINED! We thought this day would never come! All in all we are doing great. Everyone but mom is still pretty sick with some sort of cold but they are hanging in there. We are looking forward to a great new year full of promise and growth. I will post pictures of the boys at christmas as soon as I can get my camera to work and I promise to start doing better with this! :)

It was beginning to feel like this day was never going to come! We were finally able to have our sweet little Kayden blessed on Nov. 15, at almost 6 months old. We have had many difficult things thrown our way these last few years but this last year was by far the toughest. Kayden is officially out of the woods with his health scare and Karsten is on his way. The latest news with Karsten is that he has had a normal blood platelet count for just over a month now and has finally been able to go from weekly blood draws to every other week and has been completely taken of off those horrible steroids! The poor little guy has, up until now, had to have blood taken every week for the past 5 months! He has been such a trooper through it all. As long as he has his blanky and is sitting on mommy's lap, he just sits there, only cries as they put the needle in. He is funny to watch, he likes to see the blood go up the little tube, even laughs at it sometimes! It was so difficult for a while there, not knowing what each day was going to bring to this little guy. He got so used to wearing his helmet that he still brings it to us and wants it on once in a while. It just makes me smile to put it on him and know that it is just for fun now and not to save his life. We have so much to be thankful for this year. I can never begin to express how in debt I am to my Heavenly Father for all he has blessed us with. He has truly allowed us miracles.

This is new to me (but kinda fun!)

It has taken me a little longer than most to get on the whole Facebook, Blog train but I have finally made the leap! It is such a fun way to stay connected and informed of all that is going on in our lives. Now, if I could just convince my husband that this really is a good thing!