We went for our test at St. Jude's yesterday. It was not a day scheduled for factor, so they drew blood from his port and sent us home. However the port site continued to bleed for the next 24 hours. Not pouring blood, just oozing, but still bleeding! Next time I will ask for the test to be done on infusion days, or we will infuse an extra time.
Anyhoo the results are back and they are GREAT! His inhibitor level was 0.45!!! That's a really good number. If it is below 0.6 again next month, then we're close to being considered in remission from the inhibitor! Yea!
Thanks so much for your continued prayers for Ian! Last night we were priviliged to hear a presentation on Christ in the Passover. It was illuminating. Ian and all of us wish you a very happy Easter from our family to yours. He is risen!

We've had another great month! By great I mean emergency free :). Thanks so much for your prayers for his health and safety. Tomorrow is our appointment at St Jude's for Ian' s check up and inhibitor test. Hopefully, it will continue to decline. It has gone down for three months in a row and we are cautiously optomistic that it will continue.

Some recent pictures of Ian:

The inhibitor test this month is down again! It was 0.95. That's a really good number! Ian has had a good month so far with no major problems. He has the usual bumps and bruises that come with being a busy boy.
Since the weather is getting nicer, we have been using his "biker" pads more. Our patio is brick and we have a large climber/slide/playhouse. Ian wears protective pads on his knees and elbows. I would like for him to wear the fingerless gloves to save on scraped hands, but he just pulls them off.
He is having a little language explosion and trying lots of new words. He's a joy and we're loving to watch him grow!

It's been a while since my last post, but that's a good thing. We went the whole month of Febuary without an Emergency!! Yeah!
Ian's dental appointment went well. The dentist just took a look to see if there were any problems emerging, and no there weren't. Yeah again!
He has had mild bruising and bumps this month, but that comes with being an active boy.
We went today for his March inhibitor test. Hopefully it will be down again from last month.

Yesterday morning the hemophilia treatment center called with Ian's inhibitor test results. His level was 3.65 BUs. That's down from 11 last month and a Very Good Report! Thanks for your continued prayers! We're off for his first dental appoitment today. We have to be extra carefull of gum disease and mouth bleeds. So another adventure begins. :)

We're back from the clinic. Ian had blood work done and it will take about a week to get the results. The test is to measure the anitbody count he has built up against his medicine. Two months ago it was .4 BUs and last month it was 11BUs. We are praying for a decrease.

This morning Ian was so proud after putting on his own helmet when he woke up. Here's a pic:

Okay Okay--I give up on trying to catch up this blog with a lot of details. I will just let you know that Ian has had regular bumps and bruises as he grows and gets more mobile. At 5 months he developed an unrelated condition which required a circumcision. YIkes!

We had the circ in the hospital. For most people its an outpatient procedure, but for us it was an 11 day hospital stay. At about 1 year old we had a port placed in his chest. This eliminated having to dig in his arms, legs, hands, and head for veins. His medicine has to be infused, (into a vein), not injected, (into the skin). With a port we can numb the port site and draw blood for labs or give meds with out the trauma of finding and maintaing IV sites. Plus they taught Dad and me how to give the meds as well. It makes things a lot less painful on him and us.

At this time we also learned that Ian had developed an inhibitor. That means that his body sees the factor 8 medicine as a foriegn invader and has developed an antibody against it, rendering the factor 8 meds useless. Untill the inhibitor can be eliminated, he will be treated for bleeds with activated factor 7 which forms temporary one-time clots.

On Halloween Eve (:)) he cut his finger on a dropped teacup. Thankfully, that healed up pretty well with sticky "stitches" and factor 7.

On New Year's Day Ian came down our hall and fell right into the edge of the door. His forehead had a pool of blood or bruise from a pump the week before. He hit his head, nose,and chin. Because his head had the bruise it reacted like a water balloon (instead of an air balloon) when it hit the door and split open with about a 2" gash.
We rushed to the er and he had 5 stitches. We gave him factor 7 every 3 hours, but on Sunday the 4th we were back there because of continued bleeding. They did a ct scan-to check for internal bleeding and we did more factor 7. He seemed to do better after that bleeding some, but not constantly. He finally stoppedon the 19th. It took 2 trips to get all the stitches out but by the end of the month he looked like himself and was pretty much headed.

That catches you up until today Feb. 2-- Ian goes to St Jude's today at 2 for an inhibitor test and other chech up things with his hemotologist. Please pray that his inhibitor therapy is working and that the anitbody is decreasing.

The Honeymoon

Still trying to catch up Ian's blog to current.....Now that we're in toddler years, I see why we were told that infancy for hemophiliacs is the "honeymoon". They were lots less emergencies and ways to get bumps and bruises.

We were mainly consumed with enjoying him and his brothers and learning how to function as a family of five. We would occasionally notice bruises under his arms or around his belly, from being picked up or held. They didn't seem to bother him, but felt like hard knots under his skin to us.

Big brothers Isaac and Israel welcomed him into our lives. Isaac was proud and helpful, (as always), with a "been here before" kind of attitude. Israel was very protective of "his baby" and would call out for Mama to "hold baby--hold baby--hold baby" any time Ian cried.

Our first experience with shots was somewhat scary. We took icepacks and tylenol with us. He cried a little like all babies, then immediately fell asleep. It was easy to keep ice on his thighs while he slept in his carseat. He ended up without a mark on him, even though we had expected large brusises. Yeah prayer!!

Our Sweet Ian was born on July 27th, 2007 at 8:12 in the morning. Coincidentally, he weighed 8lbs, 12 oz. He was about a week early, or he might have been my biggest baby. There were a lot more people in the OR than with my other two boys. Hemotology people, Nicu nurses, and medical students. Apparently, giving birth to a known hemophiliac does not happen that often! Ian was delivered by Dr Sentell. She did a wider than usual incision to limit trauma to his head and he was typed and tested immediately. He was given an infusion of Factor 8 through an IV in his hand as soon as the tests were confirmed. Michael kept going back and forth between me in recovery and Ian in the nursery. He and Nanny told me that lots of medical people came by to see the "little hemophiliac baby".

After just a little while, although it seemed like forever, they brought him to me. He was so sweet and tiny, with brown eyes and lots of black hair. He took to nursing right away, and practically taught me how to do it. He loved to cuddle and be held.

We had lots of visitors, family and friends stopping by to meet Ian. I asked them to remove jewlery and/or nametags before holding him. Newborn skin seems so thin and even if un-necessary this helped everyone remember to be extra careful. Also, Ian can never have asprin products as they act as a blood thinner. So I would ask everytime what he and I were being given. I just needed extra strength Tylenol to deal with the surgery pain--what a miracle!

Once I asked a night nurse what she was giving me, and she replied "We're not going to give you anything that could hurt you or your baby."

"But what is it?" I asked. "Advil." she answered. "Well, since he can't have any asprin, and I'm nursing him, I can't take that." I informed her. Except for this one instance all the nurses and staff were great with him and with all my worries and cautions.

Our only problem occurred when we were headed home and they were removing his ankle security braclet. As the nurse was cutting it off, I started to ask if there was any other way to remove it when Ian began screaming. She had not cut him with the blades, but the screw that holds the scissors together had scraped his heel and HE WAS BLEEDING!!!

We all froze! Michael had gone with the older boys to get the car and I began issuing orders for a pressure bandage and an ice pack. All I could think was "lets get this stopped so we can go home"

The nurse came back with 2x2 gauze and a gallon ziploc bag of ice. We used a bandaid to hold the gauze in place tightly and I held ice on the scrape. None of us really knew what to expect. I still wanted to go home. I told them we would be back if it did not stop, and we were finally headed home.

It did stop, but it was 10 days before the bandaid came off on its own. I didn't want to pull it and re-open the wound or tear more of that papery baby skin. Once we got home and he was asleep, I cried and cried. I don't know if it was exhaustion, relief, or hormones, but I felt like I had tried to anticipate every problem and had let down my guard in an effort to hurry up and get home.