Another Jake Update

Well, today Jake had his blood checked and if his platelets were above 100,000 he could go ahead and go to his allergy appointment. Unfortunately, his platelets were low and he will not be going to his appointment that was scheduled for tomorrow. Two weeks ago Jake's platelets were 80,000 and today they were down to 32,000. It's funny though, he was showing us NO signs that his platelets were low this time. Usually in the past we see the patechaei spots and that alerts us that we should get him checked and the results have been they are low and he needs to go to the hospital. Then it started to switch and we would see the spots, get him checked and they would not be crtically low and then it teetered for a few days and then dropped and then he went to the hospital and received treatment. Now, they are low and at a level that is almost critical and not showing any signs. Actually, after we heard the results from his blood test today, I checked him over and there are a few faint spots on him but nothing that looks alarming and one tiny bruise. Yesterday he took a bath and he was absolutely fine with nothing, so I wonder if these spots started to form today when he was at school. The weird thing about ITP is that his platelets can drop so suddenly and his spots can show up out of nowhere and get worse quickly or go away in a few days. It's so crazy I tell ya.

On top of all that today was Jake and Nolan's first day of school, so go figure the first day I am not around Jake for a long period of time, the spots decide to show up then. It all just sort of sucks right now with school starting for him, Nolan and me all at the same time and to have this go on. I was hoping that he could get a good start to school and then have this crap take place later. See, usually he would be showing spots and getting treatment the second week of October, but like I said in the last update his medicine may not be all that strong this time making all of this take place sooner. We'll just have to wait and see though, this could be the chance his body needs to prove itself and try to fight this off on it's own. Either way, I am sure that things can only get better. He has made improvements in my eyes with the way things have changed over the course of all this, so I am hopeful that more positive changes will take place as well. It just sucks that this is taking sooooo long for him to get over, but as long as he gets over it then that is all that matters.

Jake's next blood check is on Sept. 1st, as long as he doesn't start showing more spots or bruising in the meantime, which would more than likely would mean he needs treatment. So, keep your fingers crossed and hope and pray that at the next check up his platelets will be higher.
Thanks for listening
Terri
P.S. I think that is my new sign off phrase for my more serious blogs. Like in Anchorman he says, "Stay Classy San Diego."

Pudding Painting!

It is getting closer to the begining of school and I am running out of ideas to keep the boys entertained until school starts. So, I decided to let them paint with themselves with pudding and they had a blast. At first they were cautious and not sure if they could really get messy. I kept telling them that it was ok and to get messy and have fun. Once they got going there was no stopping them. They wound up having a pudding fight and throwing at each other. As you can tell from the picture our driveway looked like a landmine had gone off. Needless, to say pudding painting was a hit and now they keep asking if they can do it evveryday. I think all of us are ready for school. I am ready for a routine, and as much as they boys love playing together they are also starting to get on each others nevers a bit. They are getting bored with me and the same old stuff we do everyday as well.
So, I thought that if your kids are bored too try pudding painting, they will love it. Jake thought that it would be fun if he could take a bath in pudding, wouldn't we all love that. They probably ate as much pudding as they painted and threw around.

Other than just geting ready for school we haven't been up to much. Jake has another appointment to check his platelets on Mon. his first day of school (Aug.25th) and we are hoping that they are above 100,000 not only because that would be improvement but because he is getting tested for his allergies on Aug. 26th and in order to go ahead and do the appointment his platelets have to be above 100,000 since he will be getting poked and what not. He will absolutley hate it and I don't like having him get more pokes than he needs but this way we will finally be able to best address his allergies that are horrible. It makes me feel bad that his allergies aren't already taken care of. So, hopefully with his allergy appointment we will have his allergies under control and he won't have to suffer anymore. Along with that appointment he will probably be receving a new Ben 10 Omnitrix as a gift for going through all the pokes. Poor baby!

So, that is all for now. I will write another entry once we have Jake's counts and his allergy appointment is done.
Terri

Jake update

We took Jake into the doctors clinic today for his weekly to bi-weekly "finger pokes" as he calls it. We do a CBC count and test his platelet count. Today his count was 80,000. A normal platelet range for people is 150,000-400,000. Right now Jake has his IVIG medicine in him, when he gets the medicine it lasts for 3 weeks. Right now Jake has had the medicine in him for almost two weeks. His counts are usually a lot higher when the medicine is in him, but for some reason this time around his response has been lower. His doctor says that all IVIG medicines are not the same, that one can be more potent (if you will) than the next. So, she said that it could just be that this time around Jake just happened to get a not so potent IVIG. However, in June when he had his last episode of getting the IVIG his response lasted as long as it usually does and the counts were semi-high like usual but being so on top of everything and noting and dating everything that happens and his responses and all that happens with each treatment I noticed that although his range was good his numbers were about 100,000 less than they would typically be. For example, regularly a week after being released from the hospital his counts would be around 430,000 but in June they were only 350,000. It made me wonder if he was starting not to respond to the medicine since that can happen after som many treatments, but I was hopeful that wasn't the case.Then his episode in Aug. was starting to confirm that fear, but then like I said the doctor thought that it could have been just a bunk IVIG, but his results from the "finger pokes" are lower than normal this time. His doctor said that if he holds steady above 25-30,000 for 4 weeks from his last treatment of IVIG then it was the medicine but if his count drops below that before 4 weeks is up then it was him not responding anymore. If that is the case then we move onto Predisone steroids I guess. Jake would like that treatment since there are no needles or hospital stays, but I on the other hand will have to wait and see, since I guess steroids make kids moody, hungry, weight gain and all sorts of other side effects. With the IVIG there were no side effects and it was very quick to get the platelets back up to normal. So, we'll have to wait and see what happens, but his Dr. thought that since he had responded so well in the past that she thought or was leaning more toward it just being bunk medicine. Who knows, but all I know is that I wish this was all over and we didn't have to deal with any of it anymore. In the meantime I hope and pray that what ever treatment new or old, that he responds well.
Wow, that does feel good to let all of that out. Now , I feel like I don't have to think or talk about it as much anymore and the less I have to think or dwell on it the better we all are. Thanks for listening.
Terri

Bathroom Update

We have been slowly trying to get our bathroom updated and we still have a ways to go. However, we have painted the walls, bought new lighting, mirror, fixtures and shower curtain. To go with the new paint job I made some paintings to decorate the bathroom with. So far I only made one because it hurt my back so much that my knees gave out a few times painting it. So, I still have one more painting to go, but it will look the same as the one I already made. I haven't painted anything in a while and I forgot how much fun it was. I also forgot how stress free it makes me feel. Well, that is all for now, just thought I'd share my painting.
Terri

Happy early Birthday to me!

Well, on last Thursday we took Jake to Children's hospital to have a meeting with his dr. (Dr. Thompsen) to discuss some other treatment options if we need to explore those, which hopefully we don't. Anyway, with doing that we had to go to Omaha and my birthday present came early. Ben was going to surprise me with a recliner chair on my b-day with just a picture of it and then we would go and pick one out some time, but since we were going to be in Omaha he took me to Nebraska Furniture Mart and surprised me and I got to pick out a chair then. It was a very nice surprise and fortunately the chair we picked was in stock in the right color and we were able to take it home wtih us that same day, so that was very nice. Now once the baby is born I will have a nice recliner to sit in and rock the baby and a comfy spot to sleep when the pregnancy gets uncomfortable.
The picture of me with my belly showing is of me at 19 weeks along, so almost 5 months. The other pictures is me with the boys on the new recliner.
Well, that is all for now. I thought I would try to get pictures up, so we'll see how this works since this is my first time attaching pictures.
Terri

First Blog

I just set up a blog site and this is my first blog.  I hope this turns out right. I am setting up this blog as a way to keep in touch with everyone and as a means of therapy for me. I find that blogging or as old people call it "journaling" is a great way for me to relax and release any stress that I may be having. On this blog I am not posting anything particular, just things that are going on in my life with my family and what not. I will also post pictures and keep you guys updated that way as well. I am horrible at sending pictures and emailing pictures, so maybe this way you guys will get to see what Jake and Nolan look like since they have been born. I am also not sure how often I will post a blog, as often as I can I guess. Well, that is all for now, just trying this out right now. I will be looking to see if any of you post comments. Thanks

Terri