Waiting for his knock out medicine.
Michael had a minor operation on Monday. Basically his testicles didn’t descend into the sac and they moved them into the proper position. No big deal. In fact, I hear lots of boys have one or both testicles ectopic at birth. In the past 4 days he has been a joy. That is, until he caught a head cold. Colds are something I can also handle, I mean it’s not like this is my first time handing out baby Tylenol and giving snuggles but Anthony has a cold also and my husband, Sam, has pretty serious tooth pain…at the same time. What does that mean for me? Load up on the coffee and plan my mommy day for about 2 weeks from now when everyone is back to normal. Don’t get me wrong Sam is helpful, in fact he stayed up with Michael until about 3am last night so I could get some sleep. Once he finally did get to bed though Anthony was up and wanting attention. Enter 4:14am grumpy mama. Oh you want juice? I’d like a full nights rest!! But I get him his juice, send him to the bathroom, check the fever and tuck him back in hoping everyone sleeps until 2pm the following day. Wishful thinking and it didn’t come true. Michael woke up in a very needy mood. I can only snuggle one of you at a time guys!
So I’ve decided that I’m going to do a bit of pre-planning in the future.
Mama’s need to be a little selfish sometimes. I have joined a virtual book club, nothing serious, just a book a month and I’m going to set aside at least 2 days a month to do something for me-alone. No cooking dinner, no giving baths, no driving anyone to anything, no working, no studying, just mama’s day to be Sarah. I don’t know what exactly I’ll do on those days; maybe sit in the library and read or go catch a movie. As important as our date nights are and as much as I love having a family day out somewhere everyone needs a moment to be alone. Taking care of myself makes me able to take care of my family and unless I really try to schedule that time I end up spending the day on the couch watching Thomas the Tank Engine between loads of laundry.
I’ve also been toying around with the idea of planning a meetup for us hemo moms. Outside of the events relating to our community. Maybe a halfway point where we can get the kids together and get to know each other besides over the internet. Now since I don’t have money for a serious vacation except once in a blue moon this will have to be limited to people in the Central/North Florida regions. Let me know what you guys think! As always you can reach me via email; firstname.lastname@example.org on facebook or on here.
My mother has linked me to a hemophilia B support group on Facebook. It’s lovely to see all these women sharing their experiences and really guiding one another through the journey we have all found ourselves on.
Anthony's bouncer. FAVORITE toy of 08-09
I’ve been feeling my way alone up to this point but I am really enjoying the fact that I can ask questions and get real answers from real people who have been there. And because I have been actively communicating there my previous thoughts about hemophilia are being changed. I have always loved our clinic and the people there. I have been immensely happy with how we have been treated until recently. This no prophylaxis thing has been bothering me I’m not going to lie. I think he needs it before he has a target joint. Any bleeding that occurs in a joint damages it, ANY. Once that damage is done there is no
His 1st 4 wheeler =D
repairing it, that’s it, sorry about your bad luck hope it doesn’t give you too much trouble when you are older. I’d like to prevent Anthony having issues if at all possible. And it IS possible. However our very own Dr. J doesn’t feel as though treatment is warranted until he is already having issues. He says that historically prophylaxis is used to stop joint bleeds from worsening. I happen to know that the meaning of prophylaxis is preventative medicine. Seriously, look it up. That being said should a diabetic wait until he/she goes into shock to receive insulin? No. They get insulin every single day to prevent diabetic shock. This would be the only example of common prophylaxis I can think of at the moment but I feel as though my point is made. Severe hemophilia is what it is. We can’t change his DNA to include something that was left out generations ago. We can, however, add what he needs to make him somewhat safer. I am reading stories from these women about how their children are able to play not just any sports but contact sports. We were told that would never be possible. It saddens my heart that my HTC is not as progressive as others. It saddens me even more that because of their lack of modern thinking we will probably have to find somewhere new to go. Good people and doctors that we are comfortable with is important but what is more important is that Anthony receive the sort of health care he deserves. I am bothered mostly that I didn’t feel like I needed to look into the things they told me at clinic until now. Generally when I’m told anything health related I’m at home researching it, asking questions, looking at other medical point of views. When I walked into the office at clinic for the first time and they explained to me how there would be no sports allowed in his life I accepted that as law. That’s it. Pack it up now everyone, no bleachers for us cheering him on, don’t buy him a baseball glove or teach him to play football. Part of accepting the things that happen to you in life is knowing where you can test the limits. I don’t know that they will ever find a cure but I’ll be damned if I ever again think that he can’t do something because of hemophilia again. We are going to pay attention, do the research and try something new all the time. And if he happens to have a bleed at least I’ll know how to infuse him at home.
Today was a super hot day and so our summer fun has yet again been limited to watching the Disney Channel and playing with cars. This takes a bit more explaining that the usual it’s too hot and I don’t want to play outside. Anthony simply can’t take the heat. It’s bad for him to be in an enviroment that is too hot because he would bleed easier. I hate that I have to keep him indoors during the summer months that were my favorite as a child and I am certainly not looking forward to when he’s older and wants to play outside with his friends. But some good news has come today! The a/c in our car is going to be fixed cheaper than we expected. AND I found a preschool in New Smyrna he may be able to attend. It’s called Meadowwood and they have an RN on staff. I haven’t called yet asking about information but from what I can tell the parents seem to love it. On the downside they do have a waiting list and it may be too pricey for us to afford. I am of course hoping that it won’t be too bad because him interacting with children his own age is something that he has been missing sorely. He can even begin attending at the age of 3. I am hoping that when we move we can find a way to send him there or somewhere similar so if anyone has any information on a good preschool in the New Smyrna Beach area please let me know about it.
We have reached over 80 likes on our facebook page so thanks to everyone who has shared our story and made it travel so far. I cannot express how grateful I am to be connected with so many amazing people. Special thanks to Mariah for the beautiful pictures she took of my boys yesterday. She always does a wonderful job but it catches me by surprise each time.
I would also like to report that one of my long lost aunts lives near New Smyrna, hopefully I can get a phone number and meet her. It blows my mind that I actually have some blood relatives left in the world. [Not that my extended family isn’t great. Love you Kirsten, Russell, and the rest of the Browns]
Going to attempt to begin planning Anthony’s birthday here pretty soon. I know he will be super excited! He finally knows what a birthday is and keeps asking me when his will be. I love how smart my baby is. For those of you that are interested we are planning to participate in the Holiday Walk this year. It will take place at Lake Eola on December 10th. I will let you all know when we register so you can make donations in Anthony’s name and maybe some of you will even come out and walk with us for a cure.
Love from us down here in Kissimmee, Fl.
Today has been extra super awesome. I wasn’t expecting to recieve so much support so quickly, then I again I’ve never really asked for any before. Thanks to everyone for sharing our story and getting the message out there. I know that one day when Anthony is older and I tell him how much everyone cared for him he will be blown away the same way that I am. Special thanks to my grandmother Bess. I’ve never met her before but today she gave me soemthing I wasn’t able to give myself. Hope that maybe I can finally trace the disease backwards in a family I’ve never met. Maybe I can find out where we came from and be connected with other families we were at one time related to. This is of course a wishful thought but she’s given me hope and I could never ask for more than that.
On another note Anthony got his first mohawk today!!! And he looks so b.a with it. We spiked it up and he’s been running around for the last few hours looking punk rock.
As an ode to my fading childhood we are making butterbeer. I’m so excited…and feeling slightly nerdy but all the same I’m a happy mommy. We also finished up our newborn photos of baby Michael, Anthony was a great big brother and did all that we asked him to do to make the pictures truly special.