11-30-10

I think we're getting our Christmas miracle. Oliver's hemaglobin has been increasing the last 2 weeks, not decreasing!!! At his appointment on 11-19-10 it was 7.6, the next Friday it was 7.7 and today only 4 days after getting it checked it is now 8.3. I don't have words for it, other than it must be a miracle! We don't go back to the hematologist until the 10th so it will be interesting to see what he says about the increase. In a few of the studies I have read on CDA, most of the kids are not blood transfusion dependent but yet they still have to deal with the iron overloading. They will check another iron level on the 10th as well. On the downside, I decided I better take Oliver in to the clinic today to get this congestion figured out. He's been congested the last 3 weeks and been sleeping in his car seat with 2 humidifiers going in his room and nothing has helped. He has a sinus infection and is now on amoxicillin so hopefully I won't have a stuffy baby anymore.



We decorated for Christmas on Saturday at out house and it definitely is more fun when you have kids. Oliver sat in his bouncer and talked to us as we decorated the tree. I bet next year will be a different story in decorating since he will be up and moving and actually able to touch the tree then.

11-22-10

Friday Oliver, my mom and I went to Iowa City again to see the hematologist. Oliver had his blood drawn and that didn't give us great news. His hemaglobin was 7.6 only 11 days after his last blood transfusion. So, that means that either he didn't get enough blood the last time or that his hemaglobin is decreasing faster than previous. The hematologist wants to start Oliver on interferon, a medication that will make the bone marrow produce red blood cell faster so the hope is that he wouldn't need blood transfusions. There are a few down sides to interferon though. It hasn't been used in babies younger than 14 months and Oliver is now only 3 months. It also has some serious side effects like either a high or low heart rate, low blood pressure, fever that could last a few days, vomitting and other flu like symptoms. Because of the risks, side effects, and Oliver's age we would also have to stay in the hospital for at least 24 hours so they can monitor him. They want to start him on the interferon when he is 4 to 4 1/2 months because he already has an extreme amount of iron in his blood that has caused his liver to be enlarged and getting blood transfusions just adds more iron that he doesn't need. In the research I have done, the interferon has also showed improvement in the iron levels in people with Oliver's condition so much so that with long term, low dose therapy, the affected people didn't need blood transfusions or chelation therapy (meds given to get rid of the iron in his blood). Chelation therapy is still an option for Oliver to get rid of the iron but he has to be 6 months for that to happen and that has side effects as well.

So, in the next month Shawn and I need to decide how to procede and what I will do about work and taking care of Oliver. He could be getting the interferon 2-3 time a week to begin with and if we have to stay in the hospital for 24 hours each time, we would need to do something else about work so we can be there for Oliver as he fights this rare disease. We hope to have more answers about interferon and chelation therapy after our next visit to the hematologist. He also did bring up bone marrow transplant or stem cell transplant but that is not the best approach for Oliver since the best match for him would be from a sibling.

This past weekend was my first weekend to work so Shawn and Oliver spent quality time together, with a little help each day from both sets of Oliver's grandparents. I even had supper made for me Saturday night and many chores off the honey-do list done. So I must say that I was very impressed with Shawn. Here's some more pictures of our little cutie.

Big smile wearing one of his Oliver tractor shirts.

Go Hawkeyes!!!

11-14-10

Shawn's cousins had a shower for Oliver, Shawn and I on the Kainz side and we got a lot of great things. Oliver got his first Oliver tractor from his Great Uncle Don which Shawn was more excited about than Oliver at this time but don't worry Shawn, I'm sure Oliver will share once he learns what that means.

Not much else going on this weekend. Oliver had a better couple of days of daycare toward the end of last week. Here's some more pictures of my sweet boy. I finally caught him smiling on camera. Too bad it's not one of his big smiles.

Back to work and off to daycare

Yesterday we went and got blood work done and his hemaglobin was 6.9. Oliver had been getting more and more symptomatic since about Tuesday and I took him in on Thursday to see one of our local doctors and have labs drawn. After talking with our hematologist we decided to wait a bit longer. So when we got it tested Monday (yesterday) I decided that enough was enough and that we should just get it done because we can't send him to daycare so irritable. Oliver was only sleeping maybe an hour in a 12 hour period during the day and was so fussy during that time. He also would cough and scream when he was drinking from his bottle as if it was too much work for him to both suck and breathe. So we went down to Dubuque for a blood transfusion. My father-in-law Chuck went with Oliver and we were there for over 9 hours when it only should have taken around 4-5 hours to complete everything!!! We waited and waited it seemed for everything. We got there at 12:30 and they didn't start the blood until 5:45 so we didn't leave Dubuque until 9:45 making for a very long day and a very short night before I started back to work today and Oliver went to daycare.

So today was my first day back at work and Oliver's first day at daycare. Let's just say that I am so glad that Shawn takes him because I don't think I would have been able to leave him. I only was able to leave the house this morning because I was running behind schedule and had to get my butt moving. Oliver only was there for a shortened day because Shawn had a mandatory meeting to go to and I had to work of course. So, my mom was nice enough to pick him up and watch him until I got home. Oliver didn't have a good first day at daycare. They said he cried a lot and didn't sleep but maybe only 5 minutes. He also had trouble eating. This makes me even more apprehensive about daycare. I'm sure every mom goes through this and it will just take some adjustment on Oliver and my part. Today at work, I did for just a second forget about Oliver as one of my coworkers told me I would. But most of the day I thought about him and how he was doing. Oliver goes again tomorrow and hopefully he will get used to the staff and other kids and do better over time. I know that daycare providers won't spoil him like I do, and spend most his awake time playing with him and holding him, but sometimes I think that they are too busy up there to care for so many little babies. He is in an infant room with kids ages 6 weeks to 18 months and Oliver is the smallest there but not the youngest. I am hopeful that we will work all of this out soon and figure out if this daycare is right for us and for my schedule.

A day of firsts

Happy belated Halloween from my little pumpkin (the cutest pumpkin in the patch.) Oliver celebrated his first Halloween by sleeping through most of the trick or treating. It was also his first time in our church on Sunday besides church in Omaha for Annaliese's baptism. Unlike church in Omaha where he slept through most of it, he did not sleep at all during church this week. Oliver likes to be on the move. Whether that be in the stroller, people walking him around, rocking in the chair, riding in a shopping cart or in the car or even just laying on the floor for a short time to kick; so sitting in church he didn't like. So, Oliver and I walked around the halls of the church listening to the sermon.

Oliver has also started laughing. He only does it when he is really tired and just about ready to fall asleep but it is so cute. He'll give you a big smile, then laugh, and then close his eyes and fall asleep. I'll miss all of this when I go back to work in a week from today so hopefully he only has milestones on my days off... yeah right. I'll be mostly working nights so that I can stay on a regular schedule and Shawn will take Oliver to daycare so I can sleep during the day. Poor Shawn will have to get up with him during the night though, and I will have restfull sleep during the day...hopefully. But we're thinking that Oliver will be sleeping through the night here shortly. He's averaging a span of 5-6 hours initially, we feed him and he goes back to sleep, and then always awakes around 5:30-6:00 am. We're sort of getting a routine down with a bath at night around the same time then feeding him, story time, and rocking to sleep.

Monday I took him into the lab again for his blood draw and it was 7.7 so no transfusion needed this time. He's not looking pale and is acting very normal for him, not irritable or fussy.