Well, I made it past my 2nd Birthday with out getting a joint bleed. I did have many muscle bleeds that were not fun though. I now have a joint bleed in my left shoulder. It all started this past Thursday and I do not know why or what I did. The signs for joint bleeds diffrent then muscle bleeds. With muscle bleeds, you can see it swell and feel the warmth when you touch it. With this joint bleed however, there is no swelling and feels normal. My parents only knew something was wrong because I stopped using my arm. We did 3 doses of factor 7 Thursday night, 3 again on Saturday and 1 on Sunday. Monday I went to see my Doctor and she had an ultra sound done that confirmed it was a joint bleed and still not clotted all the way. So last night we started a more agressive treatment that includes 9 doses. The first 3 are 3 hours apart, then 3 at 4 hours apart, and finaly 3 at 6 hours apart. Thursday I have to go back to the Doctor for them to check my arm again and see if it has stopped. I will keep you posted. Talk to you soon! - Alex
I have been very busy! I found out in July that I have an inhibitor. This is when your body sees your medicine as foreign and rejects it. In August I had a port put in. This is a device under my skin, on my ribs. It has a line attached to it that goes into a vein and to my heart. This is so I can get my medicine and not worry about finding a vein. When I had the surgery to get it placed, it didnt go so well. They had to tie off my jugular vein because it wouldnt stop bleeding. This caused the fluid to not drain from my head, and my face swelled severely. The doctors said they have seen swelling before, but not to the extreme of mine. After a few days everything went back to normal and i could go home. In December I got a flu shot that made my thigh muscle swell up. I was in the hospital for 5 days. In January I was able to start Immune Tolerance Therapy (ITT). This is were they give me my medicine everyday to try and trick my body into thinking that it belongs there and stop fighting it off. This is expected to last about a year. In the mean time I have been growing and trying to play just like every other kid. I also am going to have a new baby brother or sister In August. As much as I like to play in the snow, I can not wait for spring so I can go out side and run around. Talk to you all again soon!
This was my hands Thursday morning. I had a bleed in my left hand from banging on stuff and it swelled up. I went to the emergency room at 1am and did not get home till 5am. During my visit I had to get my factor and they wanted to put in an IV so my home nurse could come out to my house later. The nurses had a hard time putting the IV in. Three different nurses tried and finally on the 6th try they got it in.They then had to wrap my hands from my wrist to the tips of my fingers to keep the IV in. Thursday afternoon my nurse come to my house and gave me my medicine before she removed the IV. Sunday morning the nurse come back to my house because the swelling in my hands was not going down. Monday my parents called the nurse back to our house to look at my left foot. Some how I had gotten a bleed in my foot and it was swollen too. The nurse then had to give me my medicine again. You would think haven a swollen hand and foot would lay me up for a while, but not this kid. In fact it didn't slow me down at all. I'm still walking all over the house making my parents get exercise chasing me. :-)
Wow, I have not added to my blog in almost 5 months. Do you miss me yet? I have been very busy, you know, learning how to walk and talk. I went to Florida for the first time and got to go to Disney. All in All I have had a blast doing new things. I had a few muslce bleeds and needed to get my medicine. That was not too much fun but I'm a tough boy and I'm doing great, so don't worry about me. :) . I will get back to my blog soon. It is summer time and I'm sure I can find all kinds of fun things to tell you about and lots of pictures to show you! Talk to you soon!
I know I have not posted in a while, but I am still here! I have been very busy learning how to crawl, stand up and of course Christmas! So far I have not had any serious injurys (Thank God!). I have had a ton a bruises but nothing that I could'nt handle. My elbows and knees keep getting them from crawling around but i keep moving. My Nana put 2 inch foam all around the inside of my crib and covered it with fleece and attached it to the crib so I will not get hurt inside. So I can jump all around and fall down and don't have to worry about banging my head. I will try to get my blogging done more often but now that I'm on the move, we will see. lol :)
This is my first suspicious bruise. I really like to bite on my finger since my teeth have been hurting. I do not have any teeth yet but can bite down pretty hard. Mom and Dad thought we were going to have to leave vacation early and bring me to get my first infusion, but we ended up being able to stay and we got it to go away all on its own. We contacted my Hematologist and they told us that the thing they were worried about was if there would be too much blood in such a small area. In this situation, the blood wouldn't have anywhere to go and my finger would swell up and cut off the circulation to my finger tip. Luckily it never got that bad. It still hurt alot and I had a hard time bending it, but with lots of help from my mom, everything worked out ok. Every time I would fall asleep, my mom would put ice on it for a while. When I was awake she would wrap it all with gauze padding and bandaids so if I put it in my mouth I could not bite down on it. It was a full time job for my parents to keep my finger out of my mouth. I kept trying to trick them and sneak it in, but they were way ahead of me, After a few days the bruise went away. I put some pics on here of my finger so you can all see it, let me know what you think!
Today we came back from my first vacation to Attitash Mountain Village in Bartlett New Hampshire. My mom's family has been going up there for over 20 years. We have 3 time shares and this year we had 22 people come up. It was alot of fun. I got to go swimming, shopping, and saw a train for the first time up close. I took a bath with my dad and my rubber ducks, all 207 of them! Half way through the week I got a bruise on my finger, but I will post about that in my next blog. The week flew by and before I knew it, we were packing up to go home. :( I can not wait for next year so I can go up again.
I am starting to teeth. All I have to say on this matter is..... AAAAAAAAAAHHHHHHHHHH!!!!!!!!!! :*(
On July 3rd 2012 I went to the Methuen High School football field to watch the fireworks. There were a lot of people here and we had a blast. Everyone thought I would cry, but I LOVED THEM!!!! Even when the fireworks were over, I was looking all around to see if I could find more. It was great, all the colors, loud noises, and fun with my family. Of course we went in a pack (23 people sitting in our group, and another 22 family members that we could not find in the crowd.). I told you before, we roll deep. lol. I had a great time and can not wait for next year. Happy Independence Day everyone!!
This weekend was an adventure full of firsts. On Thursday I got to meet my Auntie Andrea and her boyfriend Nick for the first time. On Friday (after Tae kwon do) we left to go on my first road trip. We went on a 3 hour drive to Burlington Vermont. This was my first time going to Vermont and I slept the whole 3 hour drive up. The next day most of the group went for a bicycle ride down the bike trail, but my mom, grandma, and me walked around Lake Champlain and checked out the board walk. When everyone got back from the bike ride, we went and took a tour of the Magic Hat Brewery. Again this was a first for me, my first Brewery (my Dad liked that!). Later in the night we went back to the board walk and I got to watch my first sunset. On Sunday we went to a blown glass studio and for the first time I got to watch someone make a figurine. Then we went to the Ben & Jerry's Ice Cream Factory for a tour and.... yes you guessed it, another first for me. I got to try some ice cream for the first time. The ice cream they gave us on the tour was Strawberry Bliss, an ice cream that they have not yet released to the public. It was strawberry flavored with chocolate fudge swirls and white chocolate chunks. I didnt know what to think when my mom put some on my lips. It was good but cold and I was not sure what to do, but I did like it and continued to lick my lips and hand for a while after. The weekend was full of excitement and I had a blast! I posted some pictures below of my journey. Check them out and leave me a message. Tell me what you think of my weekend!!