As you all know Anthony has a clotting disorder called hemophilia. Don’t be sucked into the myths though, each paper cut does not look like Texas Chainsaw Massacre, he just bleeds longer than your norm. I treat him like a normal little boy; he came with no bubble wrap for the random spurts of jumping off his bed to see if he can land on the dresser. >.< Recently he’s started thinking about what he wants to be when he grows up. For the most part these interests include becoming inanimate objects, such as; a train (a steamy not a diesel), a monster truck, a motor cycle..you get the picture. He also thinks he might enjoy being a firefighter. My response to this? Go for it! Would I prefer he were a doctor? Yes! But how could I ever tell someone they can’t follow their dreams ‘just because.’ Who am I to say he can’t be a firefighter? I figure this is all pretty simple, instead of stressing I’m just going to let him keep dreaming as long as he can and when he gets older either he’ll know his limits enough to stay away from something too dangerous for him or there will be a cure by then. And between now and then if he decides he’s going to play football in highschool I’ll go buy a foam finger and hope like any other mom he doesn’t break his arm.
I am entirely certain that we won’t be seeing our nurse again. Yesterday I sat around waiting to hear from her about what time she would be arriving to do Anthony’s infusion, when she didn’t show I could only assume she would be showing up at the same time as the previous week, 6:30am. Of course that wasn’t the case and at around 9:30 I got a phone call from her saying, “We changed your time to Thursday, didn’t anyone tell you?” WTH?! That’s not how home care works, we are supposed to agree on a time not they change it and don’t tell me. What would have happened if I had plans to, you know, not be home! on Thursday? Then again this is the same woman who wanted to sedate my son before his infusions with Benedryl so what’s done is done I suppose. Today we had infusions done in the clinic and while he wasn’t happy about being there his natural fight or flight instincts didn’t kick in to quite the magnitude that they have been. He cried, he kicked a little, he did not however wrench his arm from my grasp causing the needle to dislodge and blood to pool up on him. The emla cream did help to numb him and he really didn’t feel a thing. He was just upset, which to me is entirely understandable given his last 2 experiences with prophylaxis. Here’s to hoping my little trooper has a better week next week. I am so happy that we are figuring this all out together and that I have the wonderful Miss Leslie to help me through it all. By the by the big boy we all know and love had his first day of “school”!!! He adores it and cannot wait to go back. Don’t know when it was that my guy got so grown up but I guess it’s time I got used to it.
3 years ago tonight I got myself all loaded into my mom’s SUV to go to the hospital and have my labor induced. Little did I know at the same time my dad was hit by a truck and killed. I like to think that their souls met in passing. Jeff Dodson was my dad. He wasn’t perfect but he was quick to laugh and was loved by everyone. He made me want to be a better person and simply didn’t allow the idea that I could dislike someone, especially a relative. I think of him often and all the things that he hasn’t gotten to experience with me and I wonder how things might have turned out different had he decided to stay home that night. Daddy would have loved Anthony, he loved any child really, but he would have
been crazy for Anthony. Tears mean that someone is worth missing and so I cry. Tomorrow is Anthony’s birthday. After a 21 hour labor I gave birth to an 8lb, 11oz baby. And as they gave him to me to hold in my arms for the very first time he gave me a smile that told me I
would be wrapped around his finger forever. He’s 3 now and still gives me that same smile, a smile so like my dad’s that I can’t help but to see a little bit of him in my son. 3 years and I still wish he was here. I wish he couldhold his grandchildren. I wish he could have walked me down the isle and met my husband and given his blessing. I wish he could be strong for me when I feel like I can’t anymore. Just to be alive one last time to tell me that he’s proud of who I have become and the family I’ve made for myself. To hold
me in his arms so I can tell him that I love him and I haven’t forgot him or anyone that has passed. Another year has come and gone and changed us and helped us to grow. Another year I’ve gotten to spend with my baby. Nothing will ever be more amazing to me than him, that I made such a complete person, my greatest accomplishment.
This week has been a rough one. Anthony had his second ever joint bleed. The first time was nearly 2 years ago and he bled into his ankle, no big deal 8 hour ER stay on Halloween and he was all fixed up. Sunday I picked him up from a cousin’s house and he was fine, playing, begging to stay. After the 2 hour drive however he was in tears and unable to move his arm completely. Forget about letting me touch it to measure or even check for bruising. After a lot of crying from him and some frustration from me I was able to get a look and see nothing. No bruises and it didn’t look swollen to me, but you can’t really tell these things without measuring. I spoke with a oncall hematologist about his arm and was told to ice it, give him acetaminophen and if he was still hurting in an hour and a half call back on my way to the ER. We were fine for the rest of the night after his pain reliever kicked in and I didn’t worry about it. The next morning however he was distraught again over his arm and unwilling to even bend it to get dressed. This time I spoke to a nurse on the phone, explained the situation and took measurements. Turned out that one elbow was a full inch and a half bigger than the other. definitely a joint bleed. And so began the phone calls. Do we take him to the doctor? Can we get a home health nurse to our house to infuse him? Do we need to go to the ER? From 9am until 3pm I waited while my health care professionals called each other, made arrangements and finally decided they couldn’t help me and that it was time to go to the ER. This was our 15th ER visit since Anthony was born for a factor infusion. I can’t believe that the numbers have gotten so high in just 3 years but there it is 15 infusions in the ER and probably more than that done in a clinic. Tuesday morning the phone calls began again. The measuring began again. The searching for a solution began again. ER? Home health nurse? Clinic? His elbows still had an inch and a half difference in size and he couldn’t bend his right arm and so he still needed factor again. At nearly 6pm on Tuesday night Anthony had his first infusion done in the home by a nurse. I haven’t seen him scream like that in a long time and I have certainly never earned that look of betrayal from him before. We came on to his home turf and violated his safe place with needles and medicine. He wanted nothing to do with me when we were done. I came to him, sat him on my lap, told him how proud I was to have such a strong and brave boy and he told me to “Leave me alone right now.” In those moments he looked a bit older. His seriousness, not the words he spoke, but the look of someone who is just tired of their lot in life was like a knife to the heart for me. And the nurse said to me, “Some homes I cry when I leave. This is not one. I won’t cry when I leave here today.” I cried though.
This morning we all loaded up and made the hour ride to our Hemophilia Treatment Center (HTC) to further discuss a plan of action for Anthony. Our doctor had clearly been back and forth with her superiors about our case because what we are requesting is not the ‘standard of care’. It is only with the knowledge we were able to show her that she completely agreed that our family is ready for prophylaxis before Anthony reaches the place in his life where a joint bleed is the norm. Here in Florida before a hemophiliac receives prophylaxis, which is basically treating hemophilia before a bleed occurs, they must be having joint bleeds somewhat regularly. Joint bleeds are exactly what they sound like, a bleed that occurs inside a joint causing the build up of scar tissue. You can imagine the incredible difficulty one would have maintaining mobility after something like that begins to happen. I decided a little while ago that any joint bleeding would later add to the normal issues that people with no disorders face and so I began the process of getting him put on prophylaxis before any issues. After 2 medical opinions and finally just switching HTCs altogether I found a doctor who is willing to hear me out and start him on prophylaxis once a week maybe more depending on blood work. We will be holding off on putting a port in his chest until we can be sure that A. He will be on prophylaxis for more than a couple of years or B. That his veins really can’t take the medicine and it isn’t just a lack of factor in his system causing them to blow. I am so happy that we are making these steps toward bettering his quality of life. Hopefully it will be a long time until we spend another holiday in the ER if ever again, though I must say Arnold Palmer gives our pretty good costumes on Halloween. =] It’s been a good week; first my birthday, now finding out that he is getting prophy and next week I’ll be celebrating my greatest accomplishment, Anthony’s birthday.
Today Anthony left his trike behind and moved on to a big boy bike. It was a little rough at first but with a little help from Dad he was soon pedalling like a pro. I love listening to him work things out “Up and down, push up and down, up and down.” as he learns a new skill. There was a time when I didn’t think he would ever be able to ride a bike because of hemophilia and now I am so gracious that we have made the medical advances that we have. Anthony also has asked me to let him share a room with his baby brother, Michael. This being the second time he has requested it I took Michael’s crib and made the big move with him acrossed the hall so that it is no longer Anthony’s Room but Anthony & Michael’s Room.
Motherhood is 18 years of learning to let go.