Thursday, January 1, 2009

Boys and Their Toys

I was sitting this afternoon enjoying the fact that we had successfully made it through not only Christmas but New Years without a trip to the ER. Those thoughts were interupted by the sound of my 12 year olds excited voice anouncing the fact that his oldest brother just pulled in the driveway with a new snowmobile in tow! Now don't get me wrong......I am all for my three sons with severe hemophilia to be boys first! However how much grey hair do they think their mother needs! I love to go and see my hairstylist but after finding out she and her husband were building a new house I began to wonder how much of that house my grey hair was financing!

It is hard sometimes to let your kids go and be boys. Trust me I know! After the family went outside and did the proper oohhhs and aahhhs he says he is going out snowmobiling with his friends. Now mind you he is 24 years old stands about 6 foot ~ 250 pounds and I find myself saying....."Did you do factor? Do you have factor with you? Are you sure this is a good idea?" With a smile and a laugh and a side hug to me he says...."Yes Mom! I'll be fine! Don't worry so much! I'll try to keep it under 100mph" Great! So I will spend the next several hours of daylight waiting for the phone to ring.....hopefully hearing how much fun he had! After all boys will be boys!

10 comments:

joanne said...

I just wanted to know if you ever took your boys to disney world and how it went?My husband and I are looking to take our daughter who will be 3 years old and our son who will be 8 months old in may to florida to disney world. Our son has sever hemophilia A<1% clotting factor i want to know what you guys did to keep him safe? My husband and I have never givein him factor yet {right now he is only 3 months old} but by the time May comes i am sure he will need it. Do you know if the NHF will give us a nurse to come to the hotel? If we have a problem in a park will there be a nurse who can help? What happens like this? Or should we just stay home where his hemophilia clinic is? I am scared to go with out making sure he will be ok and i wanna give our daughter a fun time its her birthday gift. Help! Thanks

Mom of 4 said...

Hi Joanne,
I took my son with severe hemophilia A to Disney world when he was about two years old. As a matter of fact we were attending the NHF conference in Orlando that year (2002). My son (who also has inhibitors) already had a port by then and I was trained in infusions. So I was not as nervous as you probably are. If you decide that you do want to venture out it is always a good idea to check with your HTC and have them advice you what to do in case you need to infuse. It may be a good idea to locate the HTC that is closest to Disney as well as the closest ER to the park. Bring a map so if by chance you need to use their services you will at least know where to go.

I think any nursing services requests need to be checked out with your insurance company. I don't know if NHF provides for that or not. You would have to contact their office.

It sounds like such a wonderful family trip! Choosing to go will be a personal choice for you and what is best for your family. I know that in the beginning we were so fearful as well and felt so helpless in the care of our son. It does take time, education and experience to get comfortable with infusing. Wishing you all the best!

Laurie said...

Hi Joanne, I also went to Disney in Orlando when Tommy was 2. The NHF does not help out individuals in a case like this. You should let your HTC know you are going, then contact the Orlando HTC, and have your HTC write a letter addresses to it, relating all the medical info they need to know. Make sure you get a map (from Google or even AAA) outlining exactly how to get to the Orlando center. when I went Leslie Oygar was the nurse; might still be! Keep an ice pack with you (ice is the first defense). Take some clotting factor with you and store in the lockers at the theme park, when you enter. That way, in case there is a bleed, you don't have to waste time going all the way back to the hotel before you go to the HTC. Most HTCs that are not your own will not allow you to bring your own factor into the HTC for liability reasons. They would order their own, which may or may not be your brand. So just bring your own , and hope that they might allow you to use it. Call ahead to check what their policy is on that.

Most of all: don't worry. Tommy had a bleed on a later trip, when he was 15, at Animal Kingdom after we had raced to be first in line on safari. We infused him while waiting in line! He had to be in a wheelchair for the rest of the day, but guess what? He got the speed lane! Wheelchairs go first on all rides. We made the best of it. If your son gets a bleed, be calm, go to the HTC, keep a smile. It will help him be calm, truly. Your goal is not to prevent every bleed, but rather to weather it calmly and to model to your son everything will be ok. Have a great time!

joanne said...

Thank you so much for your advice.When i go Peyton will be 8 months old so i am gonna try to keep him in the stroller as much as we can to keep him safe. I think that he is too little to go on rides.Did any rides give your boys bleeds?

KitKat4385 said...
This comment has been removed by the author.
KitKat4385 said...

Do both of your boys have hemophilia A? If so I applaud you. My son is now 15 months old and Has severe hemophilia A with inhibitors. We learned something was wrong about 2 days after he was born. I chose to circumsize him and before I knew it I had a doctor telling me that there was a definite blood abnormality and that my son would need a blood transfusion asap. Since then, we've been in the hospital practically every month. He's had many bleeds which for the most part were all spontaneous bleeds. He's had a port placed and removed in only 7 months. He now has a broviac. I've infused myself since he was about 7 months old. Although I feel a little more comfortable with managing the blood disorder, I'm afraid of the future years to come when he'll be acting like "a boy" and I'll be a nervous wreck. It's so comforting to hear that your son is 24 and doing stuff that everyone else is doing at his age. One thing that I'm thankful for is that this blood disorder is manageable. Thanks so much for sharing your stories. Until now I've felt so alone and had no one to relate to.

Lori said...

Hi KitKat4385! I have 3 sons and yes they all have severe hemophilia a. We are fortunate in that this disorder is something that is treatable! We continue to learn as our children grow!

Thanks for stopping by the site!

lwilson said...

I'm so glad to hear storys like yours my son is 9mons and has severe hemophilia. I don't really know what to expect for the years ahead. THANK YOU

momsie said...

hello

Anonymous said...

I feel for you with the snowmobile.. the hardest thing for me is to let go a little. I had a similar situation when I went on a business trip and returned home to find the boys of the house (including my husband - he is the biggest boy) had purchased a go-kart. I asked is this safe? I was reassured over and over. But I kept pointing out that it did not seem safe to me. Within 24 hours we had a rolled go-kart and a broken arm.. but thank god for the roll cage or it would have been worse. Although I hate to remember that day... I do believe it is not all bad.. because my son (the driver) who broke his brothers arm(the passenger holding the roll bar with his left hand as they did a doughnut on a hill) will always respect a moving vehicle. Both boys have severe Hemophilia. Last year it was stitches and this year the arm. One year it was a black eye for all the Christmas photos, anoterh in a stroller for trick or treating.. With all this we make it through and chock all these experiences up to learning curves.. But we learn from them all and are very thankful to have 2 wonderful and happy boys.