Monday, January 5, 2009

Well after twelve days of "I don't know's", we finally have an answer. They tested Elijah for a virus called cytomegalovirus (AKA, CMV) and this morning it came back positive. This is the virus that they check pregnant women for because if you get it while your pregnant it can be harmful to the fetus. This is what I know from the conversation I had this am with Dr. Al-Zien. 85% of the population will get this virus sometime in their lifetime. To any of us this virus would feel like a common cold. Of course in the immuno-compermised person it presents itself very differently, as we have come to find out. Just to get this out of the way, he is not contagious after the three days of antibiotics that he has had for this. We do get to go home today which is great news!! The bad news is that we have to do 6 weeks of IV antibiotics at home and be in to the doctor frequently for the next few months. When Dr. Al-Zien came in this am, he was actually relieved that this CMV came back positive, because he was starting to become concerned that he was maybe relapsing. As weird as it sounds, I am grateful for 6 weeks of antibiotics. I could write more but I am trying to pack up to go home. I will try an update a bit later. Thanks for all the prayers and support. Love you all!!

Friday, January 2, 2009

Hi all,
just a quick update on Elijah. Still having high fevers and impressive hives. In fact yesterday he had his highest fever yet and got the worst hives he has had yet. All of the nurses were very impressed and he was like a show for everyone to come and see. All cultures are still pending and Dr. Woods said yesterday that Elijah won the award for the week for being the most confusing pt to try and diagnose. When Elijah doesn't have a fever he seems to be in pretty good spirits, but it seems in the last couple of days he has been much more irritable. I feel his pain and I think we are all very sick of being in this hospital. Elijah seemed different yesterday in that he acted more like he wasn't feeling well. He did have more frequent fevers yesterday and higher, but even when he was in between he acted more like he didn't feel well. Dr. Lonzarich (our primary pediatrician) stopped to see Elijah yesterday and brought him some presents. He is so great to us and it was so sweet for him to stop by. Last year he drove to Iowa City on Christmas Day to see Elijah. Dr.Lonzarich was the one we went to see last year on Christmas Eve when this all started. Great guy and even better doctor. a huge thanks to him!! I'm posting a picture of one of the gifts he brought, it is a LEGO dump truck. He told Elijah he had 24 hours to put it all together and sure enough we had it done before bed last night. Dr. Woods did a test to see the level of Elijah's immune system (immuno-globulin). The test came back that his count was low which isn't surprising for a child with Leukemia, however they like to see the number over 400 even for immuno suppressed kids and Elijah's was around 300. A normal level for a healthy person would be between 5oo-600. They are going to give him some immuno-globulin through is IV today to try and boost his count and help him to fight whatever his body is suffering from. They get the globulin from blood products (sort of like platelets). They have to watch him close while they do the 6 hour infusion for reactions, most commonly fever and hives, haha!! I'm guessing they won't be able to tell if the fever and hives, he will most likely get, is a reaction from the infusion or from his illness. We will see what happens. They plan to start this any time now (10:30am). I'm also including a picture of the hives Elijah got yesterday after his high fever, the pictures don't really do it justice but you can get an idea. I'll update more when and if we ever know more. Love you all!!

Tuesday, December 30, 2008

Hello everyone,
We wanted to give a quick update on Elijah. Some of you already know that Elijah is in the hospital as of Christmas day. What kind of a Christmas would it be for us if we weren't in the hospital??? We woke up on Christmas day and had a great morning of opening presents and watching the kids be amazed at what Santa brought them. It was great, but right after we got done opening presents Elijah said he was tired and wanted to go and lay down. Levi came back in the other room where we all were and asked me if I wanted to go and feel his head. I said, NO!!! He better not have a fever!" Well he did and so I called the doctor. We were able to give him some Tylenol and not have to take him in right away. His fever broke for awhile but after a few hours it was back and we had to take him in. We went to the ER hoping that his counts would be high enough to just give him some antibiotics and send him home. Dr Al-Zein saw him in the ER and I was a little pushy to have him discharge us. His counts weren't great (ANC was around 800), but Dr agreed to send us home if we would follow up in the clinic the next day. We went home and at about 5am Elijah woke up with a fever of 103 and hives all over his body. I knew that we were headed back to the hospital for admission at that point. We have been in the hospital ever since (which is why I have time to update our blog). Elijah's counts dropped over the first couple of days to around 400 ANC. They had stopped his chemo until his counts recovered. On Monday his counts were back up to 950, but he was still having the fevers and hives. Dr. Woods (new partner to the group) said that she had thought about sending us home since his counts had recovered, but she was baffled as to why he was still having fevers. They have thought all along that he has some virus because none of the cultures have grown bacteria. She told us that she wanted to give him one more day of antibiotics but she would probably let us go the next day. Then, because Elijah is Elijah and he can't be normal in any kind of way, he had two of the highest fevers he has had since he was admitted lat night (Monday night into Tuesday morning). One of them got to 104. She apologised this morning when she came to see him that she had told us that we might be going home, because he was going to be staying. Not only did he have those two really high fevers, but his counts that had recovered have now started falling again. Since Dr. Woods is new to the group I had to inform her of Elijah and his non-normalcy. I told her if she was thinking that he would do something then he would do the exact opposite. She decided to order a CT scan from head to toe to look for a source of infection, and really to start ruling things out. She said when he is on his 5th day of fevers, you have to start running tests to rule things out and not just rely on him having a virus. Elijah has had a couple more fevers throughout the day today and we haven't heard anything back on the CT scan yet. At this point it's hard to know what to think or what to expect as far as going home. Woody and Melissa (Levi's older brother and sister-in-law) have willingly taken the girls once again and we are so grateful to them for doing that. They have four of their own, so adding 3 more isn't an easy task. A HUGE thank-you to them for being so great!!! That's all for now, hope all of you had a great Christmas and have a happy New Year!! I'm starting to think that we will be ringing in the new year the same as we did last year, from our hospital room. Well, I do have to say that we are in much better shape than we were last year at this time and we are defiantly grateful for that. When we were admitted, Dr. Al-Zein told us that he was on his way to sign a DNR (do not resuscitate) order with a family whose little one was not going to make it. As sad as I was about being back in the hospital on Christmas, it put into perspective how lucky we were to just be in the hospital with a fever. We love all of you and hope you all have happy holidays!!
Love, Levi, Amanda, Michelle, Elijah, Alivia and Tysa

Tuesday, December 16, 2008

We're alive

I know you are wondering if we have dropped off the planet or are in witness protection. That is that we are all ok and have been very busy. We will be on in the next couple of days to give you an exciting, detail filled, riveting look at what we have been up to in the last month and a half. Thanks.

Friday, October 24, 2008

OK. The time has come again for me to update the blog. I had a slightly one-sided conversation with Amanda about whose turn it was (you'll find it's kind of the same conversation as when I tell her it's her TURN to change the diaper) to do the update. It went something like this. "Babe, it's your turn to update the blog." Arched eyebrow, no response. Again "Babe, you look great, it's your turn to update the blog." Smirk, no response. Again "Babe, you're the apple of my eye, it's your turn to update the blog." Small smile and BOOOM. "Sweety, why don't we count how many times I have updated, count how many times you've updated, subtract your number from my number, wait until your number actually reaches my number, and then it'll be my turn to update the blog." Ouch. Usually I win our verbal forays which probably explains why all my completely innocent remarks are usually greeted with silence. With that in mind, it looks like you guys are going to have to here from me approximately 39 more times until you here from Amanda. Weeeelllllll, on to the family business. I'll start with me and work our way down by age (feel free to enter a joke about the age difference between amanda and I because I had a couple go through my head). I am still working 7 bagillion hours at work every week. That still remains absolutely great. I recently had a stint of doctor visits because I thought I was having a heart attack. It turns out that I have an irregularity in my EKG that the doctor just want to "have checked out to eliminat any questions." She then proceeded to schedule it two weeks later. I'm thinking to myself, what if I have a heart attack while doing something totally normal? All who know me know what that is really code for, and if that happens, how is Amanda going to get out from under me??? Sorry mom, I know that is tacky but that is what I thought. I don't know the results yet, but I'll keep you posted. On to another topic that mom will love, it turns out I have hemmorhoids. Nice. I can tell you that the doctor owes me dinner after that appointment (and I watched her wash her hands). Other then those two things, life is pretty ok aside from the mild stress about the economy and owning my own business. One thing of note, I have learned a hard lesson on how I should control my temper. I was carrying a basket of clothes upstairs (barefoot) and stepped on a toy in the hallway by our bathroom. I was quite angry that toys had not been put away and promptly punched a hole in the bathroom door. I turned around and saw all the kids with wide eyes and fearful looks. Thats the last time I will let my temper out of control. Amanda is doing well for a person that has 4 kids, a slighty off-kilter husband and 2 dogs. I don't know how she stays sane becasue everytime I hear two kids crying, it is like someone is cutting my brain with glass shards. She has been on a kick of trying to get me healthy for some reason, but I constantly thwart her intentions. Michelle is doing well. I still have a hard time actually having a child that has reasoning of her own that sometimes might actually be right. I still have the trump card though "Becasue I'm the dad and I said so." YEAH. She is doing well and enjoys school. She is also in dance and seems to like that as well. Elijah is doing good. He was able to make a wish with the Make a Wish Foundation and he decided he wanted to go to sea world to see the animals, and kiss a dolphin, and watch some SHARKS. We are really excited to go and I think they are going to spoil him rotten. We still have the pleasure of giving him 3-5 medications every night, but he is getting better taking them. The doctor told Amanda that they want to increase the chemo dosage becasue it is not knocking his counts down far enough, but they have kindly consented to wait until after we get back from Florida. He also is still on steroids once a month, but it is a lower dosage so we don't get the I love you/I shall kill you looks 1/2 second apart anymore which shows something about me that I look back and kind of miss that. Alivia is doing great and gets more firey as the days pass. She is starting to spit out semi-recognizable words like juice (which happens to be jhoooo), Michelle (which happens to be shheeooooowww) and Elijah (which happens to be Yih-yaahh). She is a sweety and manages to smile and laugh while smacking her siblings. I think it's hilarious when I hear SMACK "Stop it Alivia!" Once again my thoughts turn to my own childhood. Tysa is doing excellent. She is sort of chunky, but we don't seam to have kids any other way. I'm convinced that if we had gotten Michelle while she was young, she would have started out chubby. Tysa is smiling alot, she learned how to suck her thumb, and is overall a very contect baby. For all who would like to come, we are having her sealed to us Thanksgiving weekend at the Temple in Omaha, Ne. With us will be a lot of the birth mom's family (my cousin Bridgette), so it will be wonderful for us to have them there to support us as we do this. Thanks to Bridgette for sharing this wonderful girl with us, and thanks to her family for supporting us as we go through this together. That is all the news that I have for now, for a more detailed and, let's be honest, accurate description of any points brought up in the preceding words, it's probably best to talk to Amanda. Thanks for all you love and prayers in our behalf! We truly can't explain how much you all mean to us, and how we are thankful for all the love and support we get. Love you.

Wednesday, October 22, 2008

Sorry for the delay

Just wanted to drop a quick note and let everyone know that we are doing ok. We have been VERY busy and also had to have Isaac re-set the password since they were the ones that set this blog up for us when we were in the hospital. I promise we will get on in the next couple of days and give a detailed and complete update. Thanks for all the love and prayers.

Thursday, August 14, 2008

Just a quick note......We got some family pictures taken and wanted to share some of them with all of you. I was really happy with how they turned out. I thought it would be massive chaos to take them all for pictures, but all of them really did well and were cooperative with the photographers. It's still a little strange to look at our family picture and see how much we have grown in the last three and a half years. I really thought three and a half years ago we would never have kids. This is awesome, even with the chaos, I am having sooooo much fun. I love it and I wouldn't trade it for anything.