Darn joints...

Why do we need them? They are pesky little suckers! We thought Ezra was early for a joint bleed at a year old... I think there must have been a friendly competition between brothers for the earliest... well Evan wins. Yesterday we were eating dinner at mom's house after a busy day and I was holding Evan in my lap and when I moved him a little he started to scream so bad!! I thought weird... and that was the end of that. Then Ian had him and it was obvious something was wrong he was screaming in pain. So we did the joint check and when we attempted to straighten his right knee he screamed and screamed and screamed. It kinda explained this crazy bear walk he had been doing all afternoon. I had commented on how silly of a crawl it was not even thinking he was having a joint bleed.
Luckily we were at mom's so instead of just one of us going in or having to take time out to figure out what to do with our other kidlets mom just took care of them.
Let me tell you I don't know what the difference was this time with the emergency room but it was so much better. I think part of it is that it seems so much more serious when your kid won't stop screaming in pain. He would stop and then if he even moved that knee a little bit he would start right back up. The staff acted so much more informed about hemophilia this time and man were they serious about holding down our little guy while they poked him. It took 3 pokes... not too shabby. The nurse said she felt so sorry about that but we were geared up to be there all night so 3 pokes felt like such a relief.
So where now? I don't know. We will see what the plan is from here. We know that once the joint bleeds start we go straight to prophy. I anticipate a call from my favorite hemophilia nurse tomorrow talking about the possibility of a port; but we will see what everyone decides is best for Evan.

8 Months

Man time is flying by with this little trouble maker!! He is crawling like crazy now. He started with the carpet butterfly stroke... it was a relief when he started true crawling. He does do this funny crawl with one leg up which makes us check for a joint bleed but it doesn't appear to be a joint problem... just how he likes to crawl. That is what is so crazy about kids... sometimes they just do things like that and it doesn't mean anything and sometimes that is the first sign of a serious problem. He loves pulling up on stuff... of course and now cries because he hasn't figured out how to get down.

We have been exhausted for months because he hasn't been sleeping well. I think we are finally seeing some progress in the sleep department. I am so relieved!! It is so hard to have the energy needed to keep up with 3 kids on no sleep.

Hating the ER

Yesterday morning Evan crawled right off of the bed. He didn't have a big bump on his head but he cried for 5-10 minutes before he calmed down. So we called our trusty hemophilia nurse and after she consulted with the hematologist she recommended that we bring him into the emergency room and administer factor just to be safe. Well... easier said than done is all I can say. There was a real emergency that came in just after we arrived so we waited for a few hours... then they attempted to poke him 5 times with no luck. After that the ER doctor told me to just go on home. WHAT?? I said I would leave if the hematologist gave me the clear but big warning lights were flashing in my head because the hemophilia nurse has drilled in my head that once they start poking they can't stop until they are successful. Well Evan ended up with a CT scan. Luckily it was clear. Now we are just icing his poor little spots where they attempted to access his veins hoping that they don't swell... worrying that they might and then we might need factor again.
Sometimes it is just so discouraging. What is the point of taking him in when no one is going to help us? They did more damage than good. I hope that the continual icing works... the hemophilia nurse talked to me about compartment syndrome. Scary stuff that we just shouldn't have to deal with. I am not a medical professional. I am just a mom and I want someone to take care of my kid. I don't have a problem holding him down for... lets see Ezra was 12 attempts the worst time but I really hate this attitude that there is nothing they can do for my child. So hopefully we don't have to take him in for a long while... and if we do... well I think I would rather hop on the next plane to Seattle than go into our emergency room again.

I'm so glad you're my family...

So Eve's preschool teacher emailed us letting us know they are learning about families next week and they need a family picture for each student. Well imagine my surprise to find out that we did not have a single picture just our family of five. So we took care of that today... here we are. 

I had to add in these pictures of these boys wrestling. You would never believe who instigated it and who won... that is right... what a crazy baby brother.

Bruising

I took Evan to the pediatrician's office because he had nasty sores in his mouth... poor boy! There was a new medical assistant there and you should have seen her face after I took off his clothes so that we could weigh him. It totally cracked me up!! The whole time she was in the room she was just staring at all his bruises; I don't think she could believe I was bringing in a baby so bruised up. Sometimes I forget... this is just normal for our crawling little boy.

Cute kids

Here are our kids on a normal day just hanging...

First day of school!!

Eve started Point Higgins Preschool on Thursday. She was so excited to ride the school bus. She was up and dressed before I knew it (can't you tell?). I think preschool didn't live up to her huge expectations on the first day she kept on comparing it to Clover Pass Preschool and didn't like the things that were different. Today she came home much happier about preschool. 

Ezra is doing fine having her gone... he does get on his backpack when she does and is sad when he can't get on the school bus. The best thing was when she was at school he was playing with her Barbies and putting on her lipstick... hahaha. Walk Barbie along the floor, put her down, reapply lipstick, repeat. 

After school she had fun in with her brothers and the water table... maybe we should just put out the kiddy pool huh?

Seattle

We flew to Seattle on Thursday night, went to appointments at Seattle Children's on Friday, then flew home Saturday. Man it was exhausting!! Ezra crashed on the ride home and slept a few hours on the couch... how cute is he?

What happened at the appointments... sounds like we suck as parents of hemophiliacs. Okay not really but they really don't want Ezra to have all these joint bleeds... so we should contact them if he has more so they can adjust his dose of factor. So now we are upping his dose of factor and increasing the frequency. We also need to do a better job of keeping track of his infusions... what am I going to do when I have two boys with different infusion logs?? I need to get myself organized I guess which is a whole lot easier said than done.

Evan looks good... no problems with his hemophilia yet so what else did we expect? Ezra is a little bit trickier... but now we have a plan of action and a better idea of what to expect. So maybe next time we will have a much better report card... my guess is next appointment we will look awesome for Ezra and Evan will be the troublemaker... maybe I am too realistic.