Back in February Maddox鈥檚 provider suggested we try a new medicine. This medicine would allow him to be poked subcutaneously once a week, and with no need of factor replacement unless there is an emergency.

After about six months on the new medication, we went in for Maddox鈥檚 yearly appointment, and removing his port was brought up 鈥 since he鈥檚 been responding to the new treatment so well, the doctor suggested we take his port out. We don鈥檛 use the port much more than to just flush it once a month. It was decided that the port should come out in October.聽But Maddox鈥檚 port is my safety net! I鈥檓 PETRIFIED to let it go. I鈥檓 so scared for him to be poked with an IV if there鈥檚 an emergency verses his port.

Maddox had his port placed when he was 9 months old, and we have had a sense of security in place since then. He became accustomed to the everyday port pokes and he didn鈥檛 mind any part of the process. He has been amazing.

Since starting on the new medicine, Maddox has become more vocal about injections. Instead of just sitting still like he did with infusions in his port, he now will squirm, and say, 鈥淚 don鈥檛 want my hemophilia.鈥 For me, it鈥檚 hard enough emotionally to give an almost 3-year-old a shot when he is squirming, but to add the constant crying for 鈥渘o philia鈥 breaks my heart.

Our response is always the same: 鈥淲e wish you didn鈥檛 have to do this Maddox, but you need to.鈥 I think when Maddox wasn鈥檛 so vocal it was different. Now that he鈥檚 getting older, I want to make sure that he understands why he鈥檚 getting the medicine, and how far he鈥檚 come since he was a baby. 聽I think I keep Maddox in a 鈥渘on-hemophiliac bubble鈥- meaning that at times I play it off that he鈥檚 completely fine and doesn鈥檛 have hemophilia. Since he鈥檚 gotten older and he can verbalize his feelings now I have to rethink my conversations with him. I want him to know that he needs this medicine to be the typical 鈥淢addog鈥 that he鈥檚 always been. In my eyes nothing is going to hold him back. He鈥檚 quite remarkable.

As Maddox gets older, I want him to realize that he needs his medicine and to practice safety when he鈥檚 out and about. I think I have a few years to work on that with him though.Maddox is one tough cookie, and continues to amaze us by his strength, ability to try new things, and his daring personality. Over time I think Maddox will become more adjusted to his new routine. For now, we will continue with our little words that hopefully are helping him to understand little by little with each poke.

Heather lives in Massachusetts with her husband, Shane, and her young sons, Logan and Maddox.

*Note: 鈥淚nfusing Love: A Mom鈥檚 View,鈥 is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.


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