Myrtle Beach

It's was time for the annual Hemophilia of South Carolina's Christmas party. I went alone with the kids this year. Not too bad but kind of hectic crazy as well. Here are some pictures of the kids on our balcony at the hotel. These were right before the crazy pigeons flew in to eat a stale oreo from a prior hotel patron!! Then I got the bright idea to open the door and toss them a piece of donut that Kyan didn't eat. Talk about a scene from The Birds!!!!!!

No news yet

about the carrier testing. I will try to update when I hear some. Not much else going on here. I am joining Weight Watchers on Thursday. I just can't seem to lose anymore weight. :( Wish me luck!

Carrier Testing

Hopefully this week we find out how Kyan got Hemophilia. We are going in for carrier testing to see if I am a carrier or if it was spontaneous mutation when I was pregnant with him. I think this is a good test to have since there are so many girls in the family that might be affected, if I am a carrier.

Thoughts

Recently I have been inspired by others to write about my thoughts and fears of my son's diagnosis of hemophilia. I have always wanted to write about it but never felt like I was in that place to write anything good about it, just the negatives. So here it goes.

I feel truely blessed to have a son with hemophilia. I can't imagine life without him or without hemophilia. Of course I always didn't feel that way.

I DID IT!!!!!!!!!!!!!

I infused Kyan for the first time by myself!!!!!!!!!! YEAH!! And I didn't screw it up. Of course this wasn't the face he was making while I did it. It was more like screaming and tears streaming down his face. This picture just represents my feelings after it was over. LOL!!!

Update

Kyan had his port surgery. It went really well. In fact the insision is already healed up. Yesterday I tried to stick the needle in his port for the first time. "Tried" being the key word. I didn't anticipate that it was going to be that hard to push thru. So I freaked out and passed the needle off to the nurse that was helping me. She explained that not only does the needle need to pass thru the skin, it also needs to pass thru the rubber of the port. I didn't realize that, so sticking a needle in a port is going to be a lot different then just sticking it thru skin. Plus it isn't a regular needle, its a huber needle (its angled). Hopefully next time I won't freak out and be able to do it. We are having home infusion nurse start coming to the house twice a week to help me. Which hopefully will work out wonderfully, so that I don't have to make that trip to Palmetto Richland anymore. Not that I don't just love the nurses at the Blood Disorder Clinic. I have bonded with them so well of the last couple of months. It will be strange not seeing or talking to them as much as I did before. Well I better run. Kyan is awake from his nap and I am off to the post office. I will write more later.

Ok so it's

February now and I never post anything anymore. Well I have a pretty good reason. Things have been really crazy here lately. Kyan has been in and out of the hospital a lot lately. He was admitted last weekend for a tongue bleed. It was really SCARY!!! He lost so much blood that he was pale and lethargic etc. He ended up getting stuck 15 times while being in the hospital. I am not sure what has brought on his poor vein access lately. Maybe the frequency of his bleeds. His hematologist finally said it was time for a port. So we go back to the hospital this Friday the 9th for port surgery. I am nervous and excited at the same time. The port should allow us to have some much needed normalcy! But at the same time I am apprehensive of having him cut open to have it put in his chest. Plus now I get to be the bad guy and have to stick him now. It was nice to have the nurses get that bad reputation of being the one who sticks and mommy be the one who just cuddles him afterward!!

My sister and mom are coming down to help w/ Nevaeh. Trey gets another group of soldiers on Thursday, so he won't be around much. Well I will try to post more another day.

Christmas Party in Myrtle Beach

We went this weekend to Myrtle Beach for the annual Hemophilia of South Carolina Christmas Party. It was a blast. We stayed at the Landmark Resort. Nevaeh loved all the pools. She even sat on Santa's lap. Here is proof.

Lights at the Zoo

Here is some pictures from The Holiday Lights at the Zoo. It was this years Christmas party for the Children's Blood Disorder Center. Nevaeh had fun but I am not sure if Kyan had too much fun. He was tired and ready for bed.












Sleepy Kyan!!!!

WOW!!

Is anyone else wondering where this year went??? I can't believe that it is December. And I also can't believe that Nevaeh is going to be 4 tomorrow!!!! Where does time go?? When Trey was in Iraq time seemed to take FOREVER to pass but now I can't get it to stop. I was even wrapping some Christmas presents last night. That is a first for me. We are so far ahead this year in Christmas shopping etc. Kind of scary!!

Kyan has his hemophilia clinic next week on Wednesday. I am going to see the physical therapist with him. He is going to be 16 months on the 15th and still not walking. He is still in the "normal" range but since he was diagnosed with "weak trunk muscles" he will probably have to see the physical therapist more often to get over this hurdle. He still isn't showing much interest in walking. He tries occasionally but he is really wobbly and he gives up. It is very hard for me to watch. Well I post more tomorrow with pictures from tonight's Christmas Party at the Zoo.

Another dinner out!

This time it was with Baxter. Same restaurant as last time, Terra. We got to try out the new Baxject II. I liked it but am thinking the BioSet from Kogenate still works for us. While we were there we got to meet a new "hemo" family. We are no longer the newbies on the block. They have a 13 month old daughter with Severe Hemophilia A, who was just diagnosed in August. A little unusual because they have no family history like us and its a girl with the disorder.

Anyway, the next couple of weeks are going to be busy. We have a battalion Christmas party on Friday night, the HTC's (Hemophilia Treatment Center) Christmas party on Saturday at the Zoo and Nevaeh's 4th birthday party on Sunday. Then the following weekend, it's Myrtle Beach for the SC Hemophilia Chapter's Christmas Party weekend. I am so looking forward to that one. We had so much fun last year!! I will write more later!

Can I Get Off the Merry Go Round?? PLEASE??

So I haven't blogged in a while. I am feeling like my life is like a merry go round. Constantly moving and going too fast without my consent of course. We went back to the treatment center today for another head bonk. UGH!!! Of course the use of a helmet for Kyan was brought up again. Ok am I a bad hemophiliac mother by not wanting my child to have to wear a helmet??? I don't want him to feel different then everyone else. Maybe I should just relent and get one. Gosh all these trips to the doctor could be avoided. Right?? This time a toy truck fell off a shelf and hit him in the head. He started to get a bruise with this one, were last week he didn't get a bruise.

Oh well, He got factored and we are back home. He is passed out in bed!!! Poor little guy! The treatment center is trying to find a Home Infusion Nurse for me. That would be wonderful. I hope it doesn't take too long to find one!!! I will post more later.

Fun Fun

We went yesterday to a free dinner/training class on inhibitors by Novo Nordisk . We end up going to a lot of this types of meetings. The more knowledge the better in my opinion. Inhibitors scare me!! Kyan and Nevaeh came with us. They were so good. The restaurant (which seems to be a favorite for Factor companies) is a nice one with table clothes etc. Kyan kept trying his hardest to pull the table cloth straight off the table. And pretty much ate the entire time we were there. Everyone always get a kick out of his appetite.

On a side note, the head bonk from Thursday is much, much better. Kyan did however decide to test his factor 8 response and fall out of the bathtub after his bath. And like magic, the bump from the fall was gone the next moring. WOW!!! I am loving factor. If only it would last longer than 12 hours!!!

Thought I would post this picture of Nevaeh. I love this outfit and thought she looks adorable.

I had to take Kyan to the treatment center today for an infusion. He fell and hit his head on the wood entertainment center. It was just a pre-cautionary infusion. He doesn't have any signs of a brain bleed, so that is good. It was pretty scary! Poor little guy! He screamed when he saw the nurse. He knows what is going to happen as soon as he sees her.

Back Home

The kids and I are back home from Virginia. We went to take care of my nieces while my sister and brother in law went to Atlantic City. It was hectic of course, taking care of 5 kids is. Kyan had a bleed while we were there. He is doing better but appears to be getting more teeth now. I took all the kids to a pumpkin patch while I was there. Here is one of the pictures.