A good week.

What a week we have had. We didn't even do anything and that's what makes it so good. We have finished our chemo and are playing the waiting game now. Today his ANC was at 0 which is right where we want to be. We also have been able to keep his line intact all week.YEAH!!! We move his line so it now goes over his shoulder and has a lot of tape to hold it in place, this way if it does get pulled on it puts tension on the tape and his shoulder and not the weak points in his line. As we enter this stage of the treatment it is different for us. Last time Critter was really sick when we came in and by the time we had finished our chemo he was much healthier and happier. The difference is that he was healthy and happy when we came in but now he is tired and sick again(they say this is normal). Some other things are happening too. Because his platelets are low he is getting bloody noses we he cries and he is occasionally throwing up, neither of which are really that bad (except now our sink smells like vomit yuck!). All and all we have had a pretty good week.

Walk Run for Critter!

Hey Jason's cousin Lindsay has put together a walk run for Critter! Thank you so much Lindsay! For more info there is a link on the right hand side of our blog. We are so thankful to everyone who has given us so much love and support. We have the best neighbors, friends and family. Unfortunately Critter wont be at the event (due to low counts he can't go out even if he is at home)but the rest of the family will be there(I hope). I have heard of missionaries that have their whole districts praying for us, high school kids who have rallied their football teams for us and countless people who have brought in meals and babysat kids. We are so touched by any and all support we have received. Me and Jason feel very at peace and comforted because of your prayers and support. We can go forward with the faith you have lent us and we are so thankful. We love you all.

DALLIN!

Congradulations Dallin! He has offically graduated from pre-school! Jason's mom came to the hospital so we could both attend the graduation. Mrs. Tammy put on an awesome program! She has done an excellent job with these kids and we are so grateful for the help and support we have recieved from her. True to Dallin form he had a huge wad of gum in his mouth and chewed it like a cow! Half way through the program the gum fell out of his mouth on the floor. At the end of the program he picked it back up and popped it into his mouth! Here are some pics of the day.

Ouch!

Critter is very active and he knows how to use his head! His platelets are low so he bruises easy (I don't think it would matter what his platelets were he would still be covered in bruises!) and he uses his head to fall on. The sink in our room is just low enough that if Critter stands up in his walker he hits his head. So he runs into it a lot. He has also hit his head on the under part of his crib. Also if you look closely you can see a big bruise across the bridge of his nose! He fell. Whoops.

Also...does anyone see what is missing in the last picture? No IV! yeah! He only has to be on his IV at night now. He needs to stay hydrated and isn't quite drinking enough but he is still drinking some so they unhook us during the day and we get fluids at night. It is soooo nice not to constantly untangle, unwind and pull back on IV lines!

Done with Chemo!

Yesterday we had our last dose of chemo! Yeah! It was supposed to be 8 days but it took us 9 days because of line breaks. Now we wait. Critter's counts are still not down. His whites are 2.8 his anc is still 800 so we can still venture out of the room at least until Friday (I bet by then his ANC will be below 500 and we will have to stay in). This round went well except for the 6 line breaks, the chest skin bubbling, the bleeding diaper rash, and a few vomiting episodes. Well looking back it wasn't that great but the good points are he slept much better which makes everything easier to handle! He would wake up while he got his eye drops and diaper changes and go back to sleep I think I only rocked him all night once or twice! Last time it was almost every night so it was way better! Also he is way more active this time. He was so sick last time we just held him the whole time this time we chased him! Try containing a one year old on a blanket for weeks on end! Even when he was sick he would stop...throw up... and crawl away! He seems very happy considering his circumstances. He is such an example of being positive whatever situation you are in.

A Thck Skin.

What a week we have had! If anyone has ever had a one year old they will understand this completely, Critter is a little ball of energy that no one could harness. He has his own agenda, his own time schedule and also his own central line. The line they have place is not very big, it is maybe 3/16" in diameter and has to separate lines inside of it. Needless to say it's not the strongest thing in the world and Critter uses it to get our attention. If he is done playing or wants us to pick him up he grabs and pulls and bites it until we comply. Even if you are not good at math you have probably solved this equation of trouble and figured that the line breaks.

Over the past week we have seen his line repaired six times, that's right six stinking times and they have only been able to repair it twice without removing his line dressing. For all of you who have never seen a dressing change let me walk you through it.
1. Because he is an infant and he wiggles and pulls and rolls etc. we have to hold him down. We have learned a great technique of wrapping his arms in a blanket and pinning it under his body and then we just hold his legs and steady the rest of him.
2. Remove the old dressing, this requires pulling sticky tape off of tender skin.
3.They clean with an alchol swab three times and then another cleaner
4. You then apply a new dressing.

Normally you should only have to change this once a week or as needed, so normally he is pretty good about only a few tears but after 7 times in a week(twice they did it twice in a day) he is not tolerating it well any more. The worst part for him is the cleaning process, his skin is getting so irritated from all of this it must sting something fierce when they do it.

Children really are amazing and I know why Christ always said to become as little children. Kids have the ability to forgive and love unconditionally, I don't know if I could laugh and play with someone who a half hour ago pinned me down and tortured me for a reason I don't know why. He does it though, he really is an amazing kid. He is strong, determined and loving unconditionally, he is such an amazing example to me on how I need to be. Needless to say even though it doesn't look it he really does have a thick skin.

Jason originally wrote this but I had to add that his bum looks much the same. The chemo causes rashes. We didn't want to post a picture because we might get in trouble for running a porn site. But thanks to Stephanie (Odette's mom) we have amazing road tar (that's what it smells like)! This cream is awesome! Once the chemo stops it will cure the rash completely but for now it keeps it bearable.

Monkey Boy

At first I thought Critter would have no problems with this round but by day three he threw up his lunch and was really fussy. Last night I spent most of the night in the rocking chair holding him. But we have given him some Tylenol and he seems to be doing better. And don't feel too bad for me I put him down for a nap at noon and I slept till 2 so I made up for the bad night. I just feel bad because I now know why the other parents hated coming back to the hospital. You take a healthy kid and give them drugs that make them sick. It's no fun especially when he doesn't understand any of it.

Critter has become a monkey though. He is all over the place. He wants to crawl up the rocking chair. Crawl onto the bedside table. He even was stepping on suction canisters hooked to the wall so he could crawl up the wall! And he is standing up now on everything. He is REALLY unsteady (some of his meds may cause dizziness) but he keeps trying. When I set up the blanket on the floor with toys I put the crib on one side so he can't crawl off of it, but instead he decided to crawl onto the crib. There was a big temper tantrum when I got him out of there. We have also been roaming the halls in the walker but he has discovered that there are drawers with papers and files in them and now be lines for the nurses desk to throw papers everywhere. This also ends in a temper tantrum. I think it helps to have siblings around. He doesn't throw as many temper tantrums at home.