Bleeder Baby

The Sweet Spot

2011-11-01T14:53:00.000-07:00

A few weeks ago I had trouble accessing my son's port. He's had it for 2 years now and we've had relatively little problems. The first day I hit metal and gave it another try. By then Will was nervous and crying so we let it go. The next prophy day came around and the same thing happened. I hit metal. I couldn't find the sweet spot. Those of you with port experience know this spot. It's the bulls eye soft center you pierce with the needle that tells you you're in. After day 2 with no luck I was not about to throw the factor away again and I could see a nice hematoma growing under Will's skin so off to Childrens' Hospital we went. We pretty much spent the day there trying to trouble shoot. The first nurse seemed to hit the sweet spot but could not get a blood return. At this point Nurse Barb showed up. She's one of our "peeps." We decided to get an x-ray. In and out of radiology Will, my husband and I went, holding onto Will the whole time. The results? Everything seemed normal. With the port still accessed we tried again but no blood return. In fact whenever someone tried pushing the saline through Will cried and said it hurt. This started making him nervous. We'd been at the hospital a few hours and we were all getting a little antsy and hungry. The friendly charge nurse, who is now in my circle of hospital "peeps", thought maybe it needed a flush, so we tried flushing with a little TPA. It hurt when anything went in so we could only hope it was enough. In the back of my head I kept thinking port replacement surgery. This is the last thing I wanted. 2 years ago Will was only 18months. There wasn't a whole lot to explain then or any prior experience so for Will it was an easy in and out sort of thing. I was a wreck but all was well. Now the thought of surgery on my almost 4 year old seemed to make me panic. My perfect little boy already had one scar, did we really have to contemplate another? Could I really find it in my mom bag of strength to explain the procedure to him in a way that wasn't scary? That he'd be going off to a strange looking room with strange doctors who would be responsible for my child's life? I just wanted to get through lunch and back to trouble shooting so we could go home.

An hour later we were back up in the exam room with a plan. The next step was a contrast dye test. Was there a leak or a crack or had the port simple come apart? Hopefully this would give us the answer. All I could do was take a deep breath. I wished out loud for Will's nurse practitioner to be back from vacation. She was my sanity. My solid rock. My voice of reason. She would tell me when to breathe and when to freak out. The air came out of my chest just as the door open. It was her! I looked around the room and all my medical peeps were here! It felt like being in the safe hads of other moms and friends. Others who all wanted the best for my little lovey. We could brainstorm together to keep him safe. Out loud someone mentioned port replacement. It was now out in the universe and I had to accept this option. Keep your friends close but your enemies closer. I had to stay one step ahead of hemophilia. I had my peeps around me and Will was counting on all of us. We headed back to radiology. This time with out my husband. He had to get home in time for the school bus dropping off my other son. Then he had to get all my and Will's stuff packed for a night's stay at Childrens'. Radiology brought Will's nervousness back. Pushing the contrast through hurt. They could barely get any in but it was enough to see that nothing was getting into the tube. It was just pooling around underneath. What the hell was going on? No one knew and the only real way to find out was surgery. Ugh! I questioned whether the port could be fixed or if a new one could go in the same place. No one knew. I just couldn't bear the thought of another scar on my baby's perfect skin! It is an irrational feeling but it is there. As the day continued we sat in the exam room waiting for the prep cart to come for blood work. The charge nurse and I looked at each other and sighed. She could see the concern in my face. I was sure of it. She looked at Will. He was being so brave. Asking questions, being polite, going willingly and trusting all of it. "Let's try one more time." She said. I could only nod as I gave Will a big squeeze. No magic cream this time but we had to do it. This was our last try. Will laid back and I held his hand. He patiently let the nurse prep the area. The poke caused him to cry but as he did he asked, "did she get the sweet spot, mom?" We all watched as the red snake flashed in the tube. We did it! It worked! We got the sweet spot Will. As my bleeder baby and I walked out of the hospital that day I held his hand tight. He smiled and made a funny little wink at me. Such a brave little guy. He's the true sweet spot. Inside and out.

Hemophilia Camp

2011-07-23T21:40:00.000-07:00

I recently spent 3 days at Camp I-Vy. We have been making this journey for the last four years. Our first experience was when Will was six months old and had only been diagnosed 2 months prior. Everything about hemophilia for us at the time was new, scary, unknown and unexpected. The nurse told us about Camp I-Vy and it was the best thing we ever did! We had been living in a dark place before camp thinking our son would be stuck in a bubble. We were in fear of injuries and the thought of him ever playing sports seemed impossible. Then came camp. We saw kids of all ages running and jumping and playing. A person off the street would have thought it was your regular everyday sort of summer camp. No one was sad or quiet or still. Everyone was smiling and laughing. We felt awkward in our feelings of doom and gloom. We looked around feeling out of place in this outdoor world of happiness. Fast forward four years. I have been the parent program counselor for the last 2 years. Welcoming and calming new parents greeting and getting reacquainted with past families and spending 3 days in a supportive group environment. The boys LOVE camp. Jack has friends and loves the day hikes, arts and crafts, health hut and camp fire. Will plays with other kiddos in the daycare enjoying art projects, nature projects, bubbles and movies. We have fun and are relaxed and feel right at home at camp among other kids and parents who get what we go through. I've spent quite a bit of time reflecting on camp this year. I noticed how Jack was very into the hemophilia side of camp this year. As a young sibling without hemophilia he has such compassion for his brother and the other little ones. Very alert and protective. At the same time I noticed some sympathetic injuries coming from him as well. Any scrape or drop of blood meant a trip to the health hut for a band aid. Even near the end of camp a mysterious hurt arm meant I was pulled out of a session to take him down to the health hut for ice. He's an unaffected kid who is looking to fit in at hemophilia camp. He's figured out how to do it! Go to the health hut! Now my most memorable event this year DID happen at the health hut and it was the opposite of our experience 2 years ago when Will got an award for courage. In fact, I don't even want to remember THAT time. No, this year the health hut left us with a sweet and magical memory for our family and one other. Our good friends have a little boy a half year younger than William. He recently got a port to deal with his inhibitor. It's been a hard road and still continues to be difficult for this little boy. At camp in the health hut he and Will took their shirts off together. We pointed out how they both had a matching port! He looked at Will's port and back at his own trying to let it sink in. We all cheered as his mom accessed his port and he got infused hoping this too might ease his fears. He sat on his dad's lap to watch Will do the same procedure. At first he fussed maybe thinking it was for him, then he just sat quiet realizing his friend with the same port was having his mom access and infuse him too! Done in a matter of minutes we all cheered and the boys swapped favorite band-aids. We all hiked up to the top of camp together to let the boys play on the grass and nothing prepared us to see our little friend Nikos run over and give Will a loving hug. A best port hemo buddies hug. I can't think about this moment without crying. If I had to tell someone why I love Camp I-Vy, this moment is the reason. It just doesn't get any better.

Just A Regular Boy

2011-06-14T09:59:00.000-07:00

With two more days of preschool left, my little hemo baby has reached another milestone. Surviving his first year of preschool and ending it with a party at a roller skating rink. Now, I know the old timers might laugh about these last two statements but as a mom raising a little one with hemophilia, every milestone can sometimes feel like climbing a mountain. Last summer I was ready for my little guy to start preschool. We had mastered the port and prophy so we were juiced up and ready to go. I sat down to fill out the preschool paperwork and looking at the medical and emergency contact information suddenly made my heart race and my hand shake. Could I really put my bleeder baby's condition in someone else's hands? Would they still treat him like any other kid? Would they call me if he got hurt or they had questions? Would they follow the directions on the medical file? There were so many unknowns and for a person who has a need to be in control and who does NOT like surprises, it just all seemed overwhelming? I took the boys to the park that day and thought about the hemophilia hurdles we'd already been through. The bumps, the bruises, the ER trips, the hospital stays. Each birthday and each developmental milestone got an extra high-five for keeping the kid alive. This is just another one of those times. All I could do was take a deep breath, face the fear and jump in. Like diving into a cold pool, right? The worst that can happen is he could get hurt, right? The school would call and I could assess the situation. Just like I would do at home. I can do this. You know what? We did it! And didn't once use that emergency factor at school either. Another hurdle accomplished. It wasn't the first and it won't be the last. In fact a week before school got out there was a roller skating party. When I told my husband I was taking both boys, he looked at me like I was crazy. William too? he asked. William too, I said. All we can do is prepare the best we can and see what happens. He's 3, how bad could it be? We juiced up, slapped on a helmet and away he went. You know what happened? He had fun and I had fun and I even felt a little silly for being so nervous about it. I can't make my bleeder baby's hemophilia go away, but I can control it. I can take all the little steps needed to keep him as safe as possible. It doesn't mean he won't get hurt sometimes and it doesn't mean I won't be nervous again when he starts YMCA soccer camp this summer. In fact a little piece of me is already freaking out about leaving him for 3 hours with strangers to play sports, but I want him to do what he loves to do and that is being a regular boy who skins his knees sometimes and does regular boy things. I hope he never knows how nervous I get. I hope all he sees is his mom smiling and waving and giving him a thumbs up as he runs off to kick that ball into the goal.

Today Is World Hemophilia Day

2011-04-16T23:12:00.000-07:00

My Son William, age 3, has Severe Hemophilia. Today I celebrate his life.

I want to share a website called www.MyGirlsBlood.org. If you go to anthology you can read stories written by women from all over the world with bleeding disorders. Some of these stories really put things into perspective for me. I don't ever want to fall into a victim role. We are extremely fortunate to live in the US where our children can live normal lives. Some of these women and others like them are just lucky to survive. They don't have SSDI or Make a Wish. In many cases they don't even have Factor. The goal of some of these women are to just stop bleeding long enough to finish school so they can provide for their brothers and sisters, mother and fathers. For me, World Hemophilia Day not only means awareness, but also means celebration. In a few hours I will be celebrating my little boy's life by watching him ride his big boy bike at the park. I don't need Make a Wish. My wish has already been granted.

Log books, birthdays and other advocating factors...

2011-02-02T21:04:00.000-08:00

I don't need to state the obvious, but having a child with hemophilia makes life much more interesting. It sometimes feels as if I'm in a weird human experiment in resilience or, at the very least, a wacky japanese game show I was never told about. This blog is about what I learned in the last two weeks and how I'm pretty sure by the time my bleeder baby is grown we should both be honorary eagle scouts for our trials and tribulations. Let's start with the black eye. Of course this was inevitable to happen. Five days before Will's birthday party. The very first birthday party with friends, he accidentally launches himself, catapult style over the new sectional and into a window ledge. Catching himself with his nose, eye and forehead. Somehow the universe knew this would happen since I had just infused a prophy dose and headed upstairs to throw out the trash. The big bang theory means nothing to the hemo mom when from feet away she hears the big bonk and knows exactly, without seeing, what that sound means. Will's forehead swelling before me and his eye worthy of a KO in the third round, I zip him upstairs for ice and another dose of factor all while dialing our hemo nurse. I am again counting my kharma points, glad we are able to treat at home. A week later it's well check day at the pediatricians and it's our lucky day, only one vaccine needs to be given! Unfortunately that lucky shot turned into cellulitis, a serious bacterial infection. Sunday morning we are shocked when his arm is almost twice it's size, red, and hot. Since we had been infusing heavily it seemed very unlikely to be a bleed, plus he didn't seem to be in pain. Off to childrens hospital we go and it's confirmed. Cellulitis. Let me stop here and tell you this. Sunday was the DAY OF THE PARTY! I had less than 4 hours to get in and out of the childrens ER on a bloody SUNDAY! I was annoyed and angry at this evil bacteria invading my child's body. I had enough to deal with. I did not need this! I soldiered through as a mother does and with 20 minutes before the party I tracked down the attending, asked for the meds and promised to give the first dose, but I needed to get my kid to his birthday party. We made it within minutes. Hooray! You cheer. All is well! Yes, and no. The first couple of antibiotic doses went okay. Then Will flat out refused to take it no matter how I tried. With milk, with juice, in a smoothie. By the 4th day I felt like Sybil's mom and I didn't think I could force it on him any more. Then by the fifth day he had rashy cheeks and ended up with a high fever. Back to the ER. Blood work was done, fever was gone and we were home by 3am. This is where my realization occured. So much had gone on in the last 2 weeks that I was trying to keep up with it all. I had to repeat everything to several nurses and doctors. Although we were only in to check the fever, they still wanted to know about his arm and his bruised face. So this is what I want to share. For every child, hemo kid or not, keep a small notebook in your child medicine basket. Like a vaccine log, or an infusion log, this log will help you keep track of medicine doses and injuries. Did someone wake up with a fever at 1am and you gave 2 tylenol meltaways? Did someone need ice or a bandaid and neosporin? This is what any good nurse does anyway. The second thing I concluded, and I can never say this enough and HAVE said it other times before. You must advocate for your child. You know them best! Your mom superpowers will tell you if something is not right. I knew the couch incident was not an issue. he had his factor and acted fine and improvement was being made. I knew his arm was not fine on day 2 but waited until day three b/c mdecial professionals would have chalked it off to "normal" vaccine reaction. I knew he was not fine when, on day 4 of meds I had to sit on him and force him to drink the stuff. I looked up adverse reactions and knew this is what was happening. HIs red face and fever finally proved it. I also know my child's limits. I knew I could go those extra days before heading to the doc. I also knew that Sunday we were going to make that party. The important thing to remember is to speak up! Do your research, get your facts. Anyone can do this. The internet has made that possible. None of the doctors we saw wanted to pinpoint an allergic reaction, in fact the last one we saw wanted to discredit the cellulitis! I know the facts. I know that I will take it a step further and have him allergy tested to be certain. Medicine is not an exact science. In many cases it is a doctor's best guess. (sorry my doctor buddies!) while they are the professionals of medicine, you are the professional of your child. Take notes, get facts, speak up, and ask questions. Advocate.

Goodbye 2010 Hello 2011

2011-01-04T22:09:00.000-08:00

What a year!! Ups and downs and everything in between. Kids are growing physically on the outside and I'm growing emotionally on the inside. Having a baby/child with hemophilia can really test your internal emotional limits! And just when you think you've got hemophilia by the horns, it bucks you off and lands you in the dirt! This year was the Year of The Port. For 11 months we had relatively little problems. A couple of random trips to the hospital for fevers but that was about it! We cruised along our prophylactic little way. Infusing 2-3 times a week. I could access that sucker in under 8 minutes from set up to clean in semi darkness with no problem. I'm awesome. Then September came along and I realized my little baby with a severe bleeding disorder was on his way to preschool. I put on a happy face but was freaking out on the inside. Would they know what to do? What if he got hurt and no one told me? What if they wouldn't let him play at recess? This was another hurdle in 2010 that we climbed over and got through. A couple of school highlights included questions about papercuts. (he needs a bandaid like any one else.) How they handled the first time he wanted to do cutting work. (montessori-speak for using scissors) When he came home and said the teacher wouldn't let him go up the ladder. (it was wet and slippery and too big. He'd already slipped that day.) And the day he didn't want to go to recess. (the teacher and I brainstormed. Had he gotten hurt, had something happened?) No, he didn't like the green jacket I brought for him to wear! Whew! Then just as the year was coming to a close, William decided he did not want to infuse. I started having to fight him and even bribe him. I hated this! I changed our infusion schedule to evenings so I could get help from my husband. Even then it was challenging. On Christmas day the port itself decided not to work. Merry Christmas! The only good I can say about this is we are forever grateful to everyone at Seattle Childrens Hospital who worked that day. Not only were they happy to help but they let us use our already mixed and in a syringe Factor. Who else would do that? "Hi, I need to inject my kid with this syringe filled with clear liquid that is in a ziplock bag I pulled out of my purse." My emotional armor was not up that day but everyone was quick to get us in and out of there. William left with 2 new presents.
So that leaves New Year's. After missing a nap and being a little wound up, William fell and a bruise almost as big as his thigh started forming. It was my chance at a clean slate with that Port. New attitude, new technique. Got it accessed with no problem. Take that hemophilia! Bring it on 2011!

Still, A Merry Christmas

2010-12-25T20:53:00.000-08:00

After a year and a half of infusing Will 2x's a week or more every week, today his port refused to work. Not sure what happened really. Lately though, Will has been less cooperative to infuse. We've had to adjust schedule times since he just would not lie still. Today I had plenty of help but after giving it 5 tries it was time to go to plan B. The hospital. The very LAST place I want to be on Christmas. If it wasn't for factor already being mixed and a day of craziness and sugar highs I may have let it slide, but there was that little syringe of "gold" sitting there. It's clock ticking down the viability. And there was that angry little hematoma sitting on top of the port's "sweet spot." Red and squishy under the skin. We decided to bite the bullet on this one. Funny how all those anxious ER feelings come back after coasting for 18 months. Even Will knew what he was in for. That part just sucks. The IV start only took one try. One crying, screaming, bleeding, hurting little 2 year old arm poke. It's really he saddest thing on the planet. Thank God for ONE try. My tough emotional callus was out of practice. I don't think I could have handled more than one. We had his port x-rayed and all looked good. Not sure why the port wouldn't work. We are good until Wed. and I will try again. Crossing all my fingers and toe that it was a fluke event. Hopefully that little port will be healed and ready to go. This time I'm pretty sure Will is gonna just say, "screw you mom." I'm gonna need reinforcements for awhile. ER visit=3 hours, Christmas=21 hours. Merry Christmas Hemophilia.

The Trouble with Bleeders

2010-12-07T17:01:00.000-08:00

The thing about hemophilia and children is that the experience is ever changing. Just when you think, "I can handle this!" Some new challenges come along. This year Will started preschool. I was excited for him and started filling out the paperwork. Half way through I got to the Emergency Contact sheet. Suddenly my hand started trembling and I burst into tears. I was overwhelmed by the information I had to give. The responsibility I had of handing my little bleeder and his disease over to complete strangers who knew nothing about it. What happens when he wants to use scissors or climb the slide? I took a deep breath and with help from our nurse, other hemo moms and a good support team (and starting a new mantra: "what could happen in two hours at preschool?") We got through it without a band-aid or a bag of ice! Now, near the end of the year and another challenge under my belt, I realize Will is going to be three soon which means SPORTS. I've been talks with people at the YMCA. I feel like I'm headed into some NATO contracts or something. I feel them out for understanding but I'm not sure they really get it yet. I still have another month to work that out but in the mean time Will decides to start acting three. "I don't want to infuse!" he tells me one morning. I'd already set up the sterile field, prepped his port site and mixed the factor. As I came at him with the needle, he started waving his arms around. Covering his port site with his hand he finally got up off the floor. Several hours later and multiple tries (which meant port kits opened, I stood over the garbage can and let an unused syringe of factor fall in. Sickening! New challenge. How long will this last and how do I get through it with as little bribing as possible? Today I had got it all put in to perspective for me. I got a message from a pen pal mom in Europe. Her son has been dealing with an inhibitor now for about a year. They do daily infusions of factor. Now they are starting immuno-tolerance therapy treatment and it's not working. She's living in foreign country, her husband travels, she has 2 boys under 5, and one has hemophilia with an inhibitor whose ITT meds don't seem to be working! Now that's a challenge.

The Factor Train

2010-09-25T10:24:00.000-07:00

Will is 2 1/2 and has a port, which anyone who has read this blog knows. He wears his medic alert bracelet without problems and can tell you all about why he wears it. "It's for hemophilia. To give factor. From my port. We infuse. Right here." He'll lift up his shirt and point to his port. We infuse twice a week. More if needed and Will likes to help. Once his port is accessed, he looks at the spread of supplies and calls it his "Factor Train." With each syringe, he pushes the medicine through and calls out the type of "train." "Woo Woo! Here comes the saline train. The people are going!" "The last train is the caboose. It's the heparin train. All done!" He chooses a band aid from his "collection" and away we go. Hooray fro the factor train. Whatever it takes for him to feel empowered. His bravery makes me brave and vice versa. Now let's go to the jumpy place!

1 year anniversary

2010-07-31T22:07:00.000-07:00

Today was William's 1 year anniversary with his port-a-cath. The day was like any other Saturday. Wake up and have breakfast. Put on a sticker with the magic cream and infuse before getting dressed. We went to Costco and after coming home, took bikes to the park for an hour to ride around. Funny enough, today William graduated to a "big boy" bike. A 2 wheeler with training wheels.
I really didn't reflect on the day because everything was "normal." Then I thought back to a year ago. Before The Port. We spent hours at Seattle Childrens hemo/onc infusion clinic and ER. Sometimes we'd go back several days in a row. It meant lots of pokes and tears. It was a traumatic and stressful time when the fear of injuries was always on the forefront of our minds. Will wore a helmet and padded kneed pants in hopes that a trip to the ER could be averted. A year ago today our lives changed. Hemophilia no longer controlled us. We controlled it. William got a port and started prophy. He's starting preschool in September and on the 1 year anniversary of controlling his hemophilia he is riding a big boy bike. I could never comfortably put him on that bike if it wasn't for that port and prophy. The Port is not the perfect answer. If we could have done peripheral pokes instead, I would have done it. For us having The Port was our saving grace. Having my baby go into surgery was one of the hardest things I ever had to do but it was his future that kept us on the best path. We've had very few issues with The Port. William spent 2-3 days in the hospital a month after The Port was placed. His body was really fighting it but it all worked out. Whenever he gets a fever we have to head out to Childrens for blood work to rule out infection. This has happened a handful of times and is slightly inconvenient. Nothing like the painful trips pre-port. My hope is that we will be able to celebrate another year, with another handful of milestones, where hemophilia is really only an afterthought. It is truly a heartwarming sight to see my little bleeder baby grinning and waving on his little Thomas the Tank Engine 2 wheeler with training wheels. His cheeks rosy under his reptile bike helmet. Possible because I used his port to give him Factor.

Music Makes it Easier to Bear.

2009-08-15T08:36:00.000-07:00

I occasionally post on Studio3Music's blog and I wanted to share this with my hemophilia friends. After monthly and multiple trip to the ER and hospital we decided that the torturous visits must stop. There had to be another way than fishing for a vein each time. 4-6 pokes every visit was getting to be too much. If I could have a voided a port I would have, but after a recent vacation to CA and an ER visit that was just the worse. (I stopped counting after 6 pokes.) I knew we had no other choice. So far all has smoothly and getting factor has gone so well that I was able to infuse without help after about the 4th time. We are now on prophy and it has given me a peace of mind I didn't know existed! Anyway, read on and I'll try to update later!

We’ve been diligent Kindermusik goers for over 3 years now. From Village to Our Time to Imagine That. We laughed, we’ve cried, we’ve loved, we’ve hugged with Miss Allison the whole way. We’ve rarely missed a class and even 4 days after my second son was born, I wasn’t going to miss keeping up with my first son’s Monday Kindermusik routine.

From intentional touch, which my 3 1/2 still loves at night, to snuggle time, to listening to Farmer Jason going on 3 years with the same CD - (one year I think we listened to it in the car for 6 months straight) the songs and sounds of Kindermusik fill my family’s lives on a daily basis. It keeps us connected. It keeps us dancing and singing. It grows my little ones brains and strengthens their developments. It reminds me to have a moment of fun every day. No matter what craziness is going on.

And while I have always thought of Kindermusik as being important, I didn’t realize the extent of it until last week. My younger son was to undergo surgery with an overnight stay at Seattle Children’s Hospital. William is 18 months old and has severe hemophilia, a rare bleeding disorder he will have his whole life. It has meant a year and a half of many visits each month to receive medication through IV.

This is a difficult task on a healthy, chunky monkey like Will. Each visit means 4-6 “pokes” from a skilled nurse trying to find a vein. It means having to hold my baby swaddled snug while he cries and struggles in hopes the nurse can get a vein in 1 or 2 pokes instead of several.

Last week Will had surgery to place an access port in his chest so he won’t have to endure this experience any longer. Up until now, our exhuasting visits also consisted of much singing. Anything to take everyone’s mind off of the chore at hand. The usual Twinkle, Twinkle mixed in with Ally Bally, The Elephant Song and other favorite tunes have been heard in the hem/onc infusion clinic. I do not have the beautiful voice of Miss Allison or Miss Stacey, but I can carry a tune and if helps shed one less tear from mom or baby, I’m gonna do that!

The hospital visit for surgery was the most trying (as all you mommies can imagine) leaving your baby with the care of strangers to perform surgery….well, we’ll leave it there. It was the longest day ever! In the end, what I remember most are the comforting Kindermusik songs I could sing to Will as he recovered. His most favorite and comforting song is Ally Bally. I must have sang it a hundred times, over and over until we were both falling asleep…ally bally, ally bally bee, sitting on your momma’s/dada’s/brother’s knee…greetin’ for a wee penny…to buy some Coulter’s candy….Intentional touch and snuggle time seemed like it was meant to last forever. Nurses and doctors came and went but we snuggled and rocked to beloved Kindermusik songs until we could go home.

Not One of "Those" Moms.

2009-06-06T20:04:00.000-07:00

Okay, so I am not one of "those" moms that freaks out over every runny nose or cough. I'm not afraid of blood (good thing huh?) and for the first 2 almost 3 years of my first son's life he only saw the pediatrician for his well visits. I'm not a germaphobe and we just don't really get sick or injured around here. (I am so gonna knock on wood now that I've said this out loud!) Since hemophilia popped into our lives I'm usually the parent that handles the episodes. Taking Will to Childrens', being there to hold him and comfort him during his infusions, etc. This is all fine and good until the hemophilia child gets sick. Then I somehow morph into the mom you just don't want to be. Last week Will didn't feel well. It was Sunday night and it was hot and he just looked and felt crummy. I took his temp and it was 103. He didn't have any other symptoms but was just crying and wanted to be held. He slept bad and wasn't wanting to eat or drink anything. If he was "normal" I would have just done the normal things. Drink water, eat popcicles, cool washcloth, etc. wait for said fever to go down. But somehow this is when I put him into a "not normal" catagory. For some reason if he's not acting his normal self then it must be the hemophilia. There's something wrong. Even after doing a body check, moving limbs and joints around, checking every fleshy chubby part there is and find nothing, I still just can't act normal. Hemophilia turns me into one of those hysterical moms. A hypochondriac mom. There has to be something. I need answers. We go to the ER on a Sunday evening. The worse day and time you could ever think to go. I just couldn't wait until Monday. I had to go. I had to clear my mind. Still nothing. Yup! It's a fever. Monday comes around, morning is better but as luck would have it, the child decides to fall and cut his frenulum. (The piece of skin under your top lip, the one evey kid cuts at some point.) So back to Childrens' for infusion. This time I felt like "whew! at least he's getting a treatment." I don't know what's wrong but factor must be the magic potion to what ails him! No such luck. By the late afternoon, still battling a high fever. Hemophilia was making me crazy. Now I was crazy mom. Tues. back to Childrens' for a few blood tests, more factor and a urine test. I just had to know if hemophilia was getting the better of me. Well, it wasn't. I was getting the better of me. Wed. afternoon roseola showed up and the fever was gone. It was a virus. An everday stupid virus. Something "normal" kids get. So where do you find the happy medium in it all? On one side I am glad I followed my own internal checklist. Infuse first. Get it out of the way. Then act normal. On the other side I still couldn't act normal even though my bruiser "was" acting normal. He was a normal sick kid. Hmmm, I'll just file it all away in the brain and try to be less crazy the next time around.

World Hemophilia Day April 17

2009-04-17T08:16:00.000-07:00

This post is dedicated to my hemophilia friends new and newer. I am thankful to be a mom living in a country where in this day and age hemophilia can be treated in a way that is safe and predictable. WE are in control of this disorder. It does not control us. Our children are able to live long full lives where they are not ostracized for being different or looked at as sickly. Although treatment is expensive we are fortunate to have measures in place that let all children with hemophilia get treatement. No hemophilia child will have to suffer or become infected with other life threatening diseases. As families dealing with hemophilia, we have good days and bad days but in the end we will not be given more than we can handle. World Hemophilia Day should not only be about awareness, but also be about celebrating how lucky we are that we CAN manage this! Cheers!

What is normal?

2009-04-15T20:42:00.000-07:00

William is our second son. Our first son is unaffected but also quite unique. When the time came for him to go head down in the womb, I felt him do a complete sommersault. While pregnant I always said that if he is as active out of the womb as in I was going to be in trouble! I am. He did everything ahead of schedule. I never worried if he was "normal" or on track in his development. In fact I couldn't keep up with the "baby's first year" books because he'd already done it by the time the month came around. He crawled and pulled to standing at 6 months and walked at 9. He talked at 12 months and was negotiating at 18 months. I always thought he was different than the other babies his age but never wondered if he was "abnormal." I was just trying to keep up. His personality matches his development. He is now 3. He never had stranger anxiety and is pretty much an ambassador for Friendly. He talks to anyone who will listen and will question, argue, or negotiate any chance he gets. People who meet Jack rarely forget him. You can't help liking him. (Unless your his mom and are tired.) He is challenging, spirited, precocious, and "active-alert." You get the picture. When I was pregnant with our second baby (cause we weren't busy enough with the first!) we really, in all honesty, wanted a girl but not for the usual reasons. Jack is such a big personality we thought being his little brother was just going to suck! Who could keep up with him? And we couldn't imagine having another one like him! So when the doctor told us it's another boy we were a little worried. Well, who knew we'd have to boys unique in their own ways. It will be 1 year in May when we found out our little one, Will, (who was 5 months old at the time) had severe Hemophilia A factor viii deficient. This means his blood can't clot. It also means he looks like an abuse victim lots of time because, as we tell our 3 year old, "Will has hemophilia and bruises easily." Will is now 15 months old and is cute as a button. His little personality is sweet, silly, and snuggly. He's also curious and ALL boy. He loves to climb, explore, throw balls, run. You name it, he'll do it! So what is normal? In our house normal means having an overactive brainiac and a physical, athletic, risk taking hemophliac in the house. Normal is what we make it. With Jack normal means explaining why it's not okay to unscrew the hinges on the bedroom door. With Will normal is heading to childrens hospital to be infused with factor after getting a head bonk. This might not be normal for other families but it's just a usual everday at our house!

to helmet or not to helmet

2009-03-19T20:50:00.000-07:00

I go back and forth over this dilema daily. Our HTC does not advocate helmet wearing as in having to wear a helemt from morning to night. The idea that the helmet is more hindering to a child's ddevelopment than helpful. I do agree with this. I know this is probably controversial for folks in the community. To me wearing a helmet all the time would be a crutch and eventually keep Will singled out from other kids. I don't want either of these things. On the other hand, now that he his walking around and toddling here and there and pretty much looking to bug his brother and find trouble (ie climbing on things) I do wonder if there are times during our day that this might not be a bad idea. When I'm in the shower he has, until lately, been just fine sitting in an exersaucer, but he is getting too big and just doesn't want to be contained. When his brother was his age, I would just let him play in the bathroom while I kept an eye out from the open shower door. Everything is child proof so no big deal. With Will, I just don't want him falling and banging his head on the toilet, the tub, the floor, etc. maybe he could just pop on the helmet during this time. The other worrisome time is when we play outside. On cement. We love to play with outdoor ride on toys in the driveway, but there is going to come a time when I can't have my hand on him at all times. His brother is eventually going to do some daredevil trick that I will have to rush over to and leave Will managing on his own. Maybe this is where a little bike helmet will come in handy. His brother likes wearing his helmet. Sometimes in the car and around the house. For no reason. I am thakful that we've made it through Will's first year without any joint bleeds. I would love to do this one more year. (Crossing fingers) Can I do this without a helmet or will my sanity just go to pieces? I knwo we can get him treated at anytime for anything, but since we don't treat at home, it's kind of an ordeal. Maybe weraing a helmet on a few occasions will save us an un necessary trip. Hmmm.....think I'll sleep on it.

where did I leave off??

2009-03-13T20:23:00.001-07:00

I haven't been very good about blogging lately and last week pretty much wore me out for awhile. We spent a week in CA near the end of Feb and all went well. My mom has a lot of hardwood floors but Will didn't get anymore banged up than usual. The trouble started after we got home. That weekend Will woke up with a swollen forehead and eyes. He looked like the weird guy out of the movie "Goonies." I called the nurse who was some random hematologist that I haven't had the best luck with but we headed over to childrens hospital ER. UGH!!! almost 4 hours later and pretty much our Sat. shot we were done. Somehow they didn't get the message that we were coming and we got triaged as if we were just some random people. The doc was asking me questions like "how was he delivered, etc." I gave answers but kept asking when we could get treated. They wanted to do a CT and we questioned that. I still was asking when my son would get treated. I had factor with me and just wanted to get it mixed and an iv going. It was frustrating!! Finally I asked to speak to the hematologist. I was not going to have anything done until he came down! He was furious as well. Long story but we finally got treated and were on our way. The nurse did a hep-loc and we had set up an appt for Sun. unfortunately Will pulled his IV out during nap time. His crib looked like a murder scene! Blood on his face, his crib, etc. We ended up treating him for most of the week. Driving to childrens hospital everyday. It about ba 1/2 hour drive so it's not terrible. Tues. we thoguht we'd try the hep-lock again. I even had the nurse shave his head a little since the scalp veins are pretty much the onlyplace we poke these days. He slpwt through the night and didn't seem to be bothered by it. Our nurse practitioner showed me how to mix his factor and away we went. Well Wed morning after flushing his IV and waiting for a phone call, the kid pulled out the darn IV! Back to the hospital for a couple more days...Somewhere in there I was in a car accident with the kids, although minor, still another stress to the system. This week so far so good. Will still has a black eye but pretty much back to normal for now! What I learned? Stand your ground and advocate in the ER. Ask for the IV team if the the other nurses can't get the job done, they are the most awsome people on the planet. Last but not least, a drink after the kids go to bed somehow helps get through another day!

a hard week

2009-02-04T19:32:00.000-08:00

I probably will say this over and over again. I feel really lucky. But even my strength weakens now and then and that's okay. Last week was a hard one. Let me go back a awhile...

Will turned 1 year! Hooray! We made it to his first birthday without a major bleed. He even took his first steps. Such a cutie! He also ended up with a nasty cold and ear infection. Well a week later he was on the mend and then last Tues afternoon he got really clingy and fussy. He had a low grade fever and just seemed uncomfortable. I thought maybe his ear infection was flaring up and I knew he was teething. I figured thoses were the answers. I have taken the stance that although he has hemophilia that we need to go through a sort of checklist. What "normal" things would I do first. By Tues night he still wasn't feeling better and I was giving him tylenol. So I checked all his joints, moved his limbs and did a once over. Nothing seemed out of the ordinary. It was a pretty rough night. He was cryiing about every hour and a half. I'd go in and he was running a fever albeit low, but just seemed miserable. In the morning we went to the pediatrician. His ear was clear and she chalked it up to a nasty cold. Took his brother to preschool and went home for his nap. He slept decently but was still so uncomfortable to the point of almost shivering and very stiff. He didn't want to be in his car seat, high chair, or on the floor. He just wanted to be held. Well after nap as I was changing his diaper and saw IT. Or rather felt IT. A palm sized knot on his bum. It wasn't discolored. No bruise. Just a lump. Poor baby! It was a sort of muscle bleed deep in his bottom. Called the nurse, picked up big brother and headed off to childrens. I wasn't so much stressed about what was coming, but rather the fact that my husband was out of town and I couldn't find anyone to watch Jack. I really hated having to take him along to see his little brother getting poked. We got to Childrens too late in the day for the sibling room to be available to I was pretty anxious about having my spirited 3 year old bouncing around the clinic. We got lucky. The nurse got a vein fast and we were done within an hour. The sweetest part was that Jack laid next to his baby brother and held his hand while singing twinkle twinkle and patting his head. Thr crummy part was Will was not better the next day. We ended up treating him for 4 days altogether. Each day he was better but it took 4 doses to get back to 100%. The second day was the hardest. For me and him. As soon as we went in to get vitals he started crying. He knew! Every nurse that walked by made him cry. It got worse! The nurse took forever to just find a freakin' vein! He was screaming the whole time and she hadn't even poked him. We were tryin to do a hep-lock since we knew we'd be having multiple treatments. When the nurse finally "tried" a poke she didn't get it. We decided to take a break. Another hour later the IV team nurse came in. She couldn't get it either. I finally told her to use a butterfly and get it over with. Three hours and about 5 pokes later we left. I was in tears before we were through. I could only be strong for so long. I hated hearing him cry like that. I know how it feels when they can't get a vein and they're fishing around. I just hated this day. The next two days were better. We both got some better sleep and by the third and fourth day I was ready and had a plan. First, I had them call the IV team right away. I was NOT messing around. He'd had 5 pokes and couldn't even look at a nurse without crying. Today as soon as we walked down the hall he was crying! Second, when the nurse saw all the little holes, we discussed other options. Although his hair is growing in, it's still pretty thin, so I asked if she could try a vein in his head. This freaks out a lot of people, including some of the younger nurses, but I knew this was our best option. There no baby chub, you can see the vein, and it's shallow. It's no problem with a butterfly. She agreed and in 1 poke we were good! Same with day 4. 2 pokes was all it took! Whew! By the last day I was exhausted with this routine and having to be strong, but by the last day Will was calm as he sat on my lap. I brought snacks and juice and cookies. He didn't even cry during the vitals. I always remember that the bad parts get us to whats good. Factor. And now he's good as new!

2008

2009-01-04T22:54:00.000-08:00

So we made it through 2008 without a major bleed. Without a port or home therapy. We were lucky ones. At least that's how I see it. Being a mom of two kids naturally lead me to my daily mantras. Get through one day at a time and celebrate the small wins. Don't sweat the small stuff. And most importantly, when the going gets tough, always remember that you will never be given more than you can handle. No matter what your beliefs. Being a mom of a baby with severe hemophilia on his way to toddlerhood causes me to say this more than once a day. Oh and that baby having a 3 year old "spirited" big brother pretty much puts me on the fast track to heart attack city many days. Here's what I am also dealing with: The pressure of outside family and friends wondering if Will should wear a helmet. We aren't to the prophylaxis stage yet so some days I am thinking it's a good idea, but most days I think he needs to be as normal as possible. Current situation: Had a mouth bleed over the weekend, got crummy weekend on call help. Used Amicar for 24 hours and stopped. Mouth bleed started again on Tues. also got a nasty bruise on Monday. Ended up getting a treatment Tues afternoon. Just finished 48 hours of Amicar. I'm tired! I almost wish for a bleed to we can start home therapy. The not knowing when it could happen makes me crazy. But overall, I am thankful that we got through 2008 withOUT a bleed. And hey, going to the hemo/onc clinic at Childrens (and the ER for that matter) makes me still realize that we are the LUCKY ones. We can treat this. We can manage this. We can survive this.

A couple of incidents

2008-12-29T20:27:00.000-08:00

Here are a couple of links to my other blog posts about Will's ER visits for the year. May 2008. July 2008. Camp.Oct 2008. Nov 2008. Luckily this month, so far so good. Will is nice and healthy which also means he's big. He loves taking baths and to help unecessary bonks and bruises, we purchased a couple of items from One Step Ahead. A blow up tub cushion that surrounds the inside of the tub. A tub mat to help with slips and a cooshee tub guard which comes in two parts. One that acts as a kneeler for me and the second goes over the tub track to protect my arms, head bonks and any injuries getting in or out of the tub. Way more comfy than using towels! I also found this genius of a woman who has a line of padded kneed pants called Bruzwear. These are perfect now that Will is crawling and cruising.

First few months

2008-12-14T20:25:00.000-08:00

The first few months were tough. I was emotional. I tried to read everything I could on Hemophilia. I read the good and the bad.
I would scan Will everyday for bruises. I would be on pins and needles everytime he would cry. I just didn't feel prepared. I didn't know what to expect. Every bruise was just so unatural. I don't think I will ever get used to seeing those big, ugly hemophilia bruises. Then our family did 2 of the best things we could. We volunteered at the Puget Sounds Blood Center's "Golf Gets In Your Blood" golf tournament and auction and we went to Camp Ivy. A weeklong family camp for families with hemophilia. We met people and we learned. A lot. I learned not to be afraid of it. I learned from moms and kids and adult men AND women with hemophilia. NOW I felt more prepared. Summer became Autumn. I had a DNA test done and although it was basically inconclusive, my clotting levels showed that I too, had a mild form of hemophilia. My clotting level was at 34%. This sure explained a lot. It didn't explain how wickedly hidden this gene had been up until now. I have a brother who is unaffected and my mom found out she has a 32% clotting level. Three years ago she had a heart attack and had 2 blood transfusions. All before knowing how hemophilia was affecting us. Today we just take each day at a time and try to make things normal and safe. Some days are more challenging than others but we can only continue to learn.

getting up to date

2008-12-07T22:27:00.000-08:00

So let me catch you all up to date. May 2008 found a huge bruise on Will's chest. Realized it was not normal and got in to the pediatrian asap. Luky for us our's was available. Cause it would not have been pretty if we would have gotten any ol' doc. I explained that the bruise was new, and didn't know how it got there. Also told her about a couple of other incidents. At 8 days old I took Will to the ER for a pku prick that wouldn't stop bleeding. I also called the nurse after his first set of vaccines when I noticed the area was very red and swollen. In both cases I was given a basic brush off. Like "oh, yeah, that happens some times."
So the day of the bruise our doc called another associate in. She took one look and said, "it's a bruise" and walked out. Then I heard them quietly talking outside the door. I know that other doc thought the worse. Child abuse. And being that I have a son 2 years older I don't even want to speculate. But our doc was great. She told us to get testing right away. I just love her!! We did this and spent the next 48 hours at 2 hospitals trying to get blood from a healthy fat baby, then waiting to be given factor, to speaking to a hemaphilia nurse about what it all means. The first hospital was the one nearest our house. Clearly not prepared for drawing blood in a fat baby arm. After 6 pokes, blood and tears from mom and baby, we headed to Seattle Childrens. A few hours later, success. Now the waiting. Then sitting in the ER, Will given a full exam. 2 hours later, we are admitted to hemo/oncology ward. This is NOT a fun place to be. We are the lucky few. This is the floor for VERY sick kids. Cancer kids. My husband's sister died here. It was a lonely and frightening night. Will didn't receive his first factr treatment until 3am. Then we were able to get a little rest. By 10 am we had confirmed with everyone the severe A hemophilia diagnosis. We spoke to a hemo nurse and our journey began. Our first thought was...how do we keep him safe? Bubble wrap??

The world of Hemophilia

2008-12-06T23:08:00.000-08:00

About 7 months ago we entered the world of Hemophilia. Our yougest son, Will was diagnosed when he was just 4 months old. This blog was created to tell our story and to share our experiences with others. Hemophilia is a rare, inherited bleeding disorder that is passed down, most commonly, from mother (the carrier) to son. In our case it was "hidden" and Will is the first living male to have it. Since then, I have been in the process of DNA testing and have found out that I also have low clotting levels (34%) my mother has 32%. I have a younger brother who is unaffected and an uncle who is unaffected. We had no knowledge of being carriers until now. In all other ways, Will is normal and healthy. Hemophilia is just a bump in the road of our journey....