Bleeder Baby

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....