Update #4

We had our appointment with Dr. Torkildson, the hematologist, today. He was very nice and very knowledgeable just like his staff had said he would be. Unfortunately all of the lab results were not in yet so we have to meet with him again next Monday.

At this point we know that Jack has Von Willebrand but we don't know what type yet. This is the part of the lab that is still pending. He probably has Type 1 based on the labs we have so far but his abnormal platelets and low platelet count would not be a part of that. The doctor explained that he may also have what is called ITP (immune thrombocytopenic purpura) in addition to the Von Willebrand. This is an auto immune process that usually goes away in a few weeks or months. This ITP may be why his bruising has gotten worse more recently and why we found out that he has the Von Willebrand in the first place. Usually this is not diagnosed in children until they have a major surgery like a tonsillectomy which causes a large amount of bleeding. Type 1 patients usually do not have clearly impaired clotting and most patients usually end up leading a nearly normal life. Trouble may arise in the form of bleeding following surgery, noticeable easy bruising, or heavy periods (we are hoping this one is not a problem for Jack!).

If it is Type 2 then it would explain the abnormal and low platelets since this is normal for Type 2. There are two different subtypes of Type 2: Type 2A is where the building blocks that make up the factor (called multimers) are smaller than usual or break down too easily. Type 2B is where the factor sticks to the platelets too well. This leads to clumping of the platelets, which can cause a low platelet count. The outcome for these patients is the same as for Type 1 except that there is a bleeding tendency that varies between patients. The doctor said that this can be a problem if Jack was having surgery or in a major accident.

Were not sure yet what he will do if it is either type because there are different courses for each one. We do know that the doctor will be testing both Larry and I for it to see if we have it. If one of us does, they will test Addie when she is one or two years old as she will have a 50-50 chance of having it. Although we don't want there to be something wrong with our little man, both Larry and I are relieved that we have an answer for why his labs were abnormal and why he has had the bruising. It will be nice to know what types and where we are going to go from here. Thank you all for your positive thoughts, prayers, and listening ears. It has been very emotional for us and we are so lucky to have loving family and friends to support us along the way.

Update #3

We now have a little minuscule sliver of a look into the nightmare that it is having to deal with insurance companies, referrals, laboratories and doctors offices. It sucks and I know that we haven't even had to deal with much compared to other people.

First off we have had to deal with the fact that there is only one specialty clinic in town and that clinic is in "the other hospital's" building and is associated with them so we are now trying to get out of paying a so called "facility use fee." It's either pay it, get our insurance to pay it or drive all the way to California. I'm hoping the insurance company just pays it otherwise I'm sure we will just pay it and suck it up. The only problem is when and if we have to go for follow up appointments. I don't mean to sound greedy or that we can't afford it but it just isn't right to do that to people.

The other issue recently has been that they told Larry three times that we would be seeing the doctor that Dr. Althoff recommended and referred us to. Then I get a phone call yesterday saying that their books were wrong and we will actually be seeing Dr. Torkelson. The office staff talked him up and promised that his patients love him...we'll see I guess. I'm sure he is a very good doctor and that what is going on with Jack is small beans compared to what they see everyday. But I'm a Mama Bear and the claws have come out! I just want the best of the best for my little man.

Jackson Update #2

Last night I got a phone call from the lab that drew Jack's blood and they said that their Hematologist wanted Jack to come back in for a redraw for his platelet function. She said it was because the hematologist was not sure of the results and wanted to check again. I was obviously not happy since that means Jack would be poked again and also it made me a little sceptical of all of the lab results. Larry called the doctors office just to let them know that the lab would be getting new results and the nurse said that we should just wait and let Dr. Hastings, the pediatric hematologist, decide whether he needs a redraw and also if she has any other labs she wants drawn so that he doesn't get an unnecessary poke or just gets one poke. I felt good with this decision but it still leaves me wondering if Jack's labs were handled correctly or if something went on in the lab that they aren't telling us about(like they mixed up the sample with someone else's). It just makes me wonder.

Today Larry called and made an appointment with Dr. Hastings for Monday at 3:30pm. I was surprised we could get in to see her so quickly. We could have seen her associate tomorrow but we both work and I would really like Jack to see her since she was the one that our pediatrician recommended. So we will not have anymore news hopefully until Monday. I'm feeling much better about the whole thing and am positive that he is just an easy bruiser who happened to have a viral infection when his labs were drawn. This is how I'm keeping my sanity for now.

I also wanted to share some news on how much of a genius that Jackson is since I have your attention. This morning Jack woke me up to by singing me the whole alphabet, even with the song at the end, and I could almost distinguish every letter. Then we were at the store today and I handed him some of those "magic" markers that only write on "magic" paper (they're a fabulous invention as long as you can find the caps before they dry out). Anyway, I handed him the markers and he counted them up to ten. I have never heard him do that before so I was a bit shocked. He was very proud of himself and I of him so instead of hiding the ball that he had been holding the entire ride while he wasn't looking, I bought it. So now we have about seven of the Target balls from the bin. Word of advice: know where these bins are in the store and avoid them like the plague. Although, $2 worth of ball makes for a happy boy!

Jackson Update

So this morning Jackson had his second H1N1 shot at a clinic that is close to the hospital. I couldn't help myself because we have been worried since we heard Jackson may have a problem, so I ran over to the hospital and got Jack's lab results from yesterday. I was shocked when I saw that Jack's platelet function is abnormal, his platelets are low and his clotting time is prolonged. I then went up to the NICU so that I could talk with the girls and maybe run his results by a neonatologist. Luckily one of the doctors was there who I knew would tell me what they thought, which was that they didn't think it looked like he had any sort of cancer (which is where our brains took us when we had time to stew on what could be wrong), which was nice to hear. The doctor thought that Jack may have had a virus that was asymptomatic, but that messed up his counts. So I left the hospital feeling a little better but still nervous--I really just wanted to hear what Jackson's Pediatrician thought. Finally, the Pediatrician called today at 12:30 and told me the results (I didn't tell him that I already knew). He said that he believes the results are either due to a virus, or it's possible that Jack has an issue with the Von Willebrand factor in his blood, but the results for that test were not back yet. He reiterated about three times that he did not think that Jackson had cancer...I appreciated that..., and he is now referring us on to a pediatric hematologist/oncologist that comes to Reno from the Oakland Children's Hospital a few days a week. I'm not yet sure how long it will take to get in to see her but hopefully not too long. We could barely sleep last night worrying about him, and can't imagine having to wait weeks.

Jackson's Two Year Well Child Check

Jackson had a doctor's appointment today, it was a "well visit," just to make sure that he's meeting all his milestones, developmentally. His last visit was at 18 months. He spent his time in the waiting room playing on the climbing toys that they have in the office, this was his first time really being able to climb all over them. After we got called back, the nurse weighed and measured Jack. He weighed in at 26 lbs. On the standardized growth charts he has moved up from the 10th to the 25th percentile in weight, and is also in the 25th percentile for his height. He is in the 50th percentile for head circumference. After that we met with the doctor. Jack passed all the tests with flying colors, not that he had to do much, just sit there and breath while the doc listened to his heart, lungs, bowels, etc. The doctor asked us if we had any questions and we chatted with him about potty training, or as he likes to call it "potty showing," emphasizing that it's the modeling of the behavior that's key, and validating that every child has their own timeline. He told us that the mean age of potty training for boys is 3 years old.

The doctor then asked if we had any other questions, and we mentioned the bruises that Jack gets on his legs because he has been getting them on his abdomen, sides, head, face, and back as well. He stated that he was curious about those too, and he decided to order a lab draw to check Jack's blood cell count, platelet analysis, clotting factors, and also checking him for what's called Von Willebrand's factor (which is basically what the doctor calls "easy bruiser"). This was a little unnerving to hear, but we were glad that this was getting looked into to.

After the doctor left, the nurse came back into the room and gave Jack his Hepatitis A vaccination, which involved a shot to his thigh. Luckily she came prepared with a sucker, which facilitated Jack's immediate recovery after the stick.

Then it was time for a nap, as the little guy was super tired. Later we went to the hospital where Nat works to get Jack's labs drawn. They pulled us back into the lab and had him lay on a bed with his shirt off. This seemed to scare him a little, especially with the unfamiliar people in the room, but Nat and I held him still and they put a tourniquet on his arm and then placed the needle with ease. They drew five small vials of blood, which they'll send for analysis. Unfortunately there were no suckers this time, but he was still quickly back to his busy little self. The Doctor said we could call him tomorrow to see what results have come back in, and then he will stay in contact with us as the rest of the results come in. We both can't help but worry a little, but figure that everything will be fine--the waiting to find out part is the hardest. We'll post here as soon as we know anything further.

Chatting with Jackson

Everyday, Jack is becoming less and less of a baby and more and more of a big boy. One of his newest things (besides surprising us with all the new words he picks up) is repeating the alphabet back to us as we sing it. He'll also hum the tune of the ABC song as well. Here's a video of his alphabet recitial, as well as him saying "Addie" and "Adelaide" as well. For some reason he likes to whisper the names, but toward the end of the video he really starts belting it out.