This is the letter Nemours sent me to let me know that the doctor we have come to adore is moving away and will not be in charge of my son’s care any longer. This generic thing is supposed to reassure me that Anthony will still receive the same care from them he always has. Forgive me if I am not reassured. I can’t even pronounce the new doc’s name! So once again we are making a change. I have located a pediatric hemo doc that practices 15 minutes from my home. 15 minutes!! Now as long as he isn’t rude, distant and can manage to remember my son’s name I will be satisfied. I must say I won’t miss the hour drive to Orlando but I will miss the team at Nemours. Sometimes the grass just isn’t green enough on the other side =[
With so many dangers in the world today I try my hardest to make sure Anthony is aware of himself. He doesn’t run off into parking lots because he knows a car could hit him. He doesn’t leave my side because he knows a stranger could take him. Call me crazy but the best person at keeping Anthony in check every second of every day is Anthony. He isn’t frightened of those around him but aware that they could cause him harm. Do you guys teach your kids these thing when they are young? Do you think 3 is too young to be learning about kidnappers and car accidents? I’ve even taught him my whole name so if something happens he can tell someone who his mommy is. When I think he’s ready I’ll go ahead and drill in my phone number. Why shouldn’t I?
Check out our facebook page for some awesome new photos of the kids!
Recently in my internet explorations I came acrossed a little boy named Eli who has suffered a brain bleed (my own personal worst nightmare). He received surgery and is now recovering. The most warming part of this story has been seeing the photo of his mama finally being able to hold him. Since reading about Eli I realized that brain bleeding isn’t something that I was really told about. Of course its been mentioned in passing and I’ve known that it could happen to my own little boy but I’ve never before taken the time to read about the signs and possible outcomes of a brain bleed.
- swelling of the head
- irregular breathing
- a headache suddenly followed by vomiting
- a lack of response.
I’m sure there are more symptoms but I didn’t happen to come acrossed them. Sometimes it takes a few days to see the signs of a brain bleed because there isn’t enough pressure on the brain to cause a noticeable problem. Your HTC can give you their procedure for a situation such as this but personally I would notify Anthony’s doctor while en route to our children’s hospital. Brain bleeding can be caused by a vaginal delivery during birthing, a fall, a traumatic head injury, and of course it can be spontaneous.
Most importantly, and I can’t stress this enough, if you want to know all the information on this do some research or ask someone who has a degree that qualifies them to talk about a medical condition…like your doctor.
Children should be wearing a helmet during activities such as but not limited to skateboarding, bike riding, roller blading, horseback riding. You get the point! Often times your local hemophilia foundation will help you get a helmet and pads for children who are still toddling to wear around the house during playtime. Should definitely get into contact with local chapter and ask about safety options for children.
We are families with children. We should be aware enough to make life safe for them. Theres a lot to learn but luckily we live in a time that has made the world smaller and information a whole lot easier to come by. Take advantage of the resources out there and let’s make these kids have the best childhood possible.
Get your girls tested! When I was little we all thought hemophilia hadn’t continued in the family, that is until a cousin was born with it. Still my mother felt like we were safe. Then I had a son with it. They tested Anthony TWICE before they were certain that he was severe factor 9 deficiency and yet they let Michael off the hook with only one test (which they weren’t able to get enough blood for as the prescription required) Be fierce! YOU are the parent, YOU are the customer. Within reason of course! You need to make sure that all the needs you have for you child are met. Have a question? Ask it. Have a concern? Voice it! You don’t have the luxury of being a quiet soul when it comes to medical care. My last bit of advice is to build a support system. EVEN IF YOU DON’T HAVE FAMILY! Get out there and bring people close to you. Sometimes you just need someone to help pick up that extra slack that a child, any child, brings.
Of course there can be complications of a brain bleed both long-term and short-term. I won’t pretend to know all of them. I do know that my own cousin suffered bleeding to the brain after a car accident (this led to us discovering his hemophilia) he now has limited short-term memory. I hear that after a brain bleed you are more likely to have more brain bleeds. I’m sure this varies per case but any questions should be directed to your HTC.
We’ve been feeling better around here but it’s of course raining outside. Indoor fun! We did something today most mothers would cringe at. Something I, myself, have gotten in trouble
for doing. We painted on the walls. Ok, the pantry doors, but my Dad would have had me scrubbing them clean all the same. Our dining room is a place for family, we talk about our
day there, spend a meal there, I hang up all Anthony’s artwork there. It just seemed off that with a family as colorful as ours the dining room could be so bland.
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.