Snow in March

I hope you don't mind if I start to include family blurbs on this blog isntead of just keeping it about Ian. I don't have the energy to keep up two sites.

I just about put away all of my kids gear last week when it was in the 70's thinking winter was done. I am glad I didn't. I am sure the snow will probably all be melted by this evening, but it isn't going to stop them from enjoying the last (hopefully) snowfall of this season. I think the look on their faces say it all.

Yet Another Miracle

I have been constantly humbled during this past year at the many miracles that have happened in our life since Ian's diagnosis. While it has been the hardest, most stressful trial that I have ever had to go through, at the same time there have been some of the best moments as well. I have never seen prayers answered so quickly and obviously. I have felt the hand of the Lord in our life more than I ever have to lift and give me the strength that I needed to get through. I have been touched at the many outpourings of love and service on our behalf not only by friends and family, but perfect strangers as well.

The stroke Ian had that caused him to be paralyzed on his left side, has no lasting damage much to the disbelief of the doctors and Physical Therapist.

We have had a fairly sick free winter. Every year it seems that someone has been hit with something every other week. This winter, it has been significantly less and despite Ian's lowered immune system, he amazingly hasn't picked any of it up. That is a huge miracle in and of itself.

The latest miracle has to do with Ian and the new baby. One of Mike's co-workers casually asked if we were going to have the cord blood banked in case Ian needed the stem cells. We hadn't thought of it at that point but I immediately began to look into it. The benefits of stem cells are amazing and I couldn't believe that neither Ian's doctor nor mine had suggested it. It is a pricey thing to do; over $2000 just for the initial costs, and then $125 a year to keep it stored. That may not seem like a lot to some of you, but to us, who already have enough money owed to the hospital that once it's paid off we could own a wing of it, it is.

I really felt that we needed to do it anyway in case Ian relapses. They would use these before attempting a bone marrow transplant which would be so much simpler for everyone. I was casually chatting with a mom that I know from the Hemoc clinic online one night. I don't know why I even mentioned it; I don't think we were even on the subject, but I told her I was going to get the baby's cord blood banked. She told me that if you go through Viacord and you have a sibling that is need of it, they will bank it for free. Of course that is something that they don't advertise anywhere so I never would have known had she not told me.

I called the next day and asked about it, and sure enough, if you have one of the sicknesses on their list (there were lots of cancers, sickle cell anemia, etc) then you qualify. They sent a form to Ian's doctor and I got the kit I need to take to the hospital with us about a week later.

To many of you, it may not seem like that big of a miracle. But to us, it is. It is such an added blessing to have that extra peace of mind. I hope and pray we will never need it, but if we do, I won't be kicking myself for not having done it.

My Sniper

One thing that I don't like about our house is that my bathroom doors do not lock. This is a simple remedy, yet I have never gotten around to changing the knobs. If I had though, I wouldn't have this story for you.

Ian usually sits in my bedroom and watches t.v. while I take a shower because he doesn't like to be downstairs alone. I shut the bathroom doors, and very seldomly does he come in.

On this particular day, I had just gotten out when I heard the door open. I turned around expecting to see Ian but all I saw was the door cracked ever so slightly. I continued on drying off and starting to get dressed when all of a sudden I hear the familiar whoosh sound from his nerf dart gun. Before it could register, I felt a thud on my back followed by a 4 year old who was laughing so hard, he could barely breathe. It was an amazing shot and a hard one to make at that. Those suction cup darts typically do not stick to skin but mine must have stuck because of the water or something. It was completely hilarious. He tried to shoot me repeatedly after that hoping for the same effect, but it was all to no avail. That first shot was one of a kind.

My Swimmer

For nearly a year now, it has been just Ian and me at home. He hasn't gone to preschool, he wasn't signed up for anything extracurricular, and for several months, he was completely quarantined and couldn't have any play dates. Now that his counts are better, I recently signed him up for swimming lessons. I figured it would be a good activity for him since it is in chlorinated water and therefore, hopefully low on germs. He has LOVED it. He woke up first thing this morning and before I even knew he awake, his swimming shorts and rash guard (he won't swim without one) were on as wll as diving torpedos in hand. It is an impossible task to try to explain to a 4 year old that we still have to wait 2 hours until it is time to go but I did my best. The only distraction he had from asking me if it was time to leave yet, was a search for his googles which unfortunately he found in about 3 minutes ( I thought it would take him longer since he hasn't seen them since last summer).

When we arrived, his grin was spread from ear to ear as we placed his shoes and towel in a locker and he waited for his teacher to come and get him.

There is a waiting area where the moms can sit that is on the other side of the pool, but the pool is encased in glass so we are able to see the whole time. Every move, every skill, every jump, was followed by Ian looking out to see if I saw it and an occasional wave or a thumbs up from both myself and him.

It was such a wonderful sight; to see him so full of energy, so full of color, so full of life. No one else there has any idea of what we have been through the last year. He is doing great and looks like a healthy, normal, four year old and I am so grateful.

I had a few bittersweet moments as I sat there thinking about how our lives are going to shortly change in the next 6 weeks. I will no longer be able to give 100% of my attention to him during the day as I have been. I have really bonded with him through this whole experience and enjoyed the time we've had with just the two of us. At the same time, I couldn't help but to be excited about the new baby and how great of a big brother he is going to be. Then I started to realize that I am probably the only person who sits there and gets emotional over a swimming lesson (gotta love the pregnancy hormones.)

Ian's Latest Appointment

Ian's appointment today was pretty much the same as his last few appointments. We showed up at 9:30 where they drew blood and gave him a dose of Vincristine. His counts were high these past few times and if they had been high today, then they would have upped his chemo. Instead, he was pretty low. Not quite low enough to go into quarantine but about 150 points away from it so we are cutting his chemo in half this week to see if it helps. I don't know how it can change so much when we aren't changing his chemo regimen at home. I guess alot has to do with how his body is processing everything.

We had to go up to the new floor again. It is pretty boring up there. The old floor had a big playroom, wii's, crafts, and you could socialize with the other moms and kids while you waited for your medicine and bloodwork results to come back. On the new floor, everyone is isolated in their own rooms and all you have to do is pretty much play with the things you brought with you or watch t.v. Time goes by a lot slower.

Emma came with us this time since it was spring break. Lauryn couldn't come because she has had a high fever for the past 4 days and can't be around the ALL kids with lowered immune systems. She stayed home resting where she pretty much chatted online nonstop with Mike, or on the phone with me. The poor girl has been quarantined up in her room the past few days to try to not pass anything on to Ian so I just took her in to the Doctor and found out she has mono. I was pretty surpised to hear that diagnosis! I didn't know you could get it so young. I told her to quit kissing so many boys but she really didn't like that comment:)

Between Ian just getting chemo and Lauryn being wiped out from mono, we are taking it easy this week. It's Spring Break so it's a bummer we can't do as much as we wanted to, but at least Lauryn won't have to miss school or anything.

The Things Kids Say

Ian has been taking a little speech class once a week. I had him tested because I thought he could improve in a few areas, and the speech therapist has been helping out. I think she is getting used to how he speaks and the substitutions of letters that he makes. That may not be a good thing. She told me on Wednesday when they met, he said, "When my mom and dad got married, my dad kissed my mom on her lipstick." Too funny. I have no idea where that came from. I hope if he says anything else too embarrassing no one will be able to make out what he is saying.

Ian's Appointment this Week

I am far behind! Ian had his appointment on Monday. He had three appointments that day so we were there pretty much all day long. Ian was totally brave as he got his chemo and we were in and out pretty quickly with that part of it. Basically, the routine will be the same for the next 2 years. One appointment with a big dose of chemo a month and oral chemo every day. We are almost a third of the way there. It seems far but it is better than a fourth of the way.

After that, we had about an hour to kill before we had to go up to Radiology. There is a little park right outside the hospital so we had some lunch and then went out to play. Fortunately it was somewhat warm so we could enjoy it more than we would have in the freezing cold. It cracks me up to see how different he has become these past few months. He is still a huge mama's boy but he is much more outgoing. About 6 months ago I took him to a birthday party and it took him about 20 minutes before he would even pick his head up out of my shoulder to look at anyone. I know a lot of it was from everything he'd been through with hospitalizations and being quarantined from the world but still, he seemed like a completely different kid. He was the complete opposite, talking to the kids right away and becoming instant friends with them.

We went up to Radiology to have a follow up ultrasound on his kidney. He was born with a kink in his ureter and it causes his kidney to be enlarged. He has had so many ultrasounds done now that he actually was asking me, "When are they going to call me in?" He wasn't nervous at all. In fact, he kind of likes that they are rubbing it on his back; it's like a free massage. We had to wait nearly an hour and a half so it dragged on but we finished just in time for our next appointment so it worked out.

After the ultrasound, we headed up to see the urologist to get his results. The last time we were there a few months ago, his kidney had enlarged nearly 3 times so they were pretty worried about it and wanting to see if it had improved at all. The doctor came in and said, "He has the weirdest kidney I have ever seen." My heart just dropped and I waited to hear what was next. He then continued, "It looks completely normal. Not only has the swelling gone down, you would never even know that he has had problems with hydronephrosis. Come back in 6 months. I want to follow it still." I was so relieved when he said that! I hope it continues on this way.