Sad Day Today (long-sorry)

[mousefansmom]

Today started out with just minor disappointment, in that I couldn't get an illuminations cruise for NYE. I could get an MK cruise, but then they told me it would be $600. That disappointment was nothing compared to the rest of my day.

A few hours later (at this time I had been up since 4:30 am in order to make the phone call for illuminations) I was on the way to the Children's Hospital with my 6yo ds, a 2 hour drive, for a hematology consult. A few weeks ago he had stitches and bled for five days. They have been doing blood tests since then. I was told that he is highly suspicious for VonWildebronds (sp?) Disease AND Hemophilia. Based on his history, our family history of easy bruising, nose bleeds etc., the doctor felt comfortable enough to say that he is certain that this is the diagnosis, and the remaining tests are just a formality. He also felt that it was probably a mild case, but still a real concern. We were cautioned about ever letting him participating in contact sports (Football is already his favorite- he loves Brett Favre) and were told that there is medication to help in emergencies.

I spent the hour drive home trying to think about the positive side. Afterall, the hematology unit is combined with the oncology unit, and I saw some pretty sick kids today. It's just that, our son has had enough poking, prodding to last a lifetime. When he was six months old he was violently shaken by a trusted caregiver, and our life crumbled. He has made a beautiful, and unexpected recovery from his earlier injuries, although he is still followed medically. Now this.

I consider myself a stable person-- college educated, happily married. Today I am finding myself online, confiding in strangers, and I am so sad. We do have an upcoming trip to Disney (obviously as I was looking for a IC), we can look forward to that. Can you all send prayers our way, please? We have been through so much already, I am not sure that even a Disney trip will cure this sadness. . .

Thanks for listening.

Mousefansmom

 

[jamsmom]

I am so sorry that you are having a rough day. It seems there are many on and off the boards that I have been in contact with who are having it rough today.


{{{HUGS}}}

 

[mousefansmom]

Originally posted by jamsmom
I am so sorry that you are having a rough day. It seems there are moany on and off the boards thagt I have been in contact with who are having it rough today.


{{{HUGS}}}

Thanks for the hugs, I think that's exactly what I need.

 

[JDH]

wonders for all of you. Just leave your cares at home and enjoy. Have a wonderful time and you're in my thoughts.

 

[ahutton]

Here's some pixie dust to throw on top - and prayers for your family.

 

[Dan Murphy]

Yep, sounds like a tough one, Mousefansmom, for sure. My very best wishes for your little Mousefan, what a trooper he must be. When I read about his being shaken, I physically winced here, reading that. A big, yet gentle [hug] for your little guy. And one for you too, mom.

He, you and your family are in my prayers. They help, they work. A big hug. And look on this caring little group here on the DIS CB as your extended family, not strangers. Strangers, yes, in a sense, but really caring ones, sort of like family.

Work on that cruise again tomorrow, and check the cruise thread at the top of the Theme Park board, you may be able to catch a shared one. Those are fun, I've done them. Also, as it gets closer, even while you are at WDW, check, as people do cancel, not like a PS. No show, you still pay. I bet you get your cruise somehow, mom, keep trying, God bless. And again, my very best to your little Mousefan.

Dan

 

[perdidobay]

((HUGS))

 

[DoeWDW]

{{ Hugs }} to you and your precious family. I'm sorry to hear of your sad news. I agree that a Disney trip may truly help you focus on having fun as a family and take some of the worries off your mind for a time.

You and your family will be in my prayers. I wish you much strength and much hope for the days ahead.

 

[dtuleya]

{{{HUGS}}}

 

[Piglet]

Hugs and prayers for you and your family. I know exactly how you are feeling. My DD has had health problems and has been poked and prodded ever since birth. It is tough to see our kids have to go through so much.

Once you get the definete diagnosis and get your son the care and meds that he needs you can then look forward to your trip. Things will work out, it just takes time.

PM me if you need to talk.

Melinda

 

[CRB#33]

My prayers for the best for your son. A lousy disease, but they have made such strides. Take care. {{hugs}}

 

[FreshTressa]

Aww, poor guy. I started crying when I read this. After all you have been through with him already. The whole shaking thing has me shaking in anger. How could someone do that to a baby??

Well, sounds like he is receiving excellent care and my thoughts are with you.

 

[mousefansmom]

Thanks to all of you. Thanks for the thoughts and prayers! Your support is helping already.

Mousefansmom

 

[helenabear]

Awww, the poor little guy I wish him and you all, all the best as you go through this. {{hugs}}

 

[Boots]

{{{{{{HUGS}}}}}} I am sorry you and he are having to go through all of this. I will be keeping him in my prayers. We are here for you anytime you need us. You will be surprised how soon you will be thinking of some of us as friends before you know it!

 

[SeaSpray]

I am so sorry to hear about your day and all that your little boy has been through already You sound like a strong, capable person who will do all she can to ensure that her son has every possible advantage to overcome any obstacles in his life. I hope tomorrow looks brighter for you and your family and I hope you have the most wonderful trip to Disney World!!

 

[nativetxn]

{{{HUGS}}} my friend. You've had a very tough day. I hope the physician is wrong about the diagnosis and your son is not hemophiliac.

Never hesitate to come here and vent. That's what the DIS community is all about. We're always here for you and we care.

Katholyn

 

[ohanafamily]

My Thoughts and Prayers are with you. I want you to know something, WE ARE NOT STRANGERS HERE. We talk about a lot of things that we can't face with the people who know the names we were given at birth. In this community, we share our passions with people who have similar feelings. We have avatars and names. We are offered a bit of anonimity by virtue of the media, but you know me as OhanaFamily. That is who I am and a description of something I cherish. Just because you don't know my address and my family history (quite boring) doesn't mean you don't know ME. This is a place where our inner selves can be free. I will admit that some people on this board know me a lot better than a lot of people in the real world.

Sorry, I drifted off topic, where was I... Oh, Just because you don't know who I am outside the boards doesn't mean I don't care any less, so here is a great big {{{{{HUG}}}}} for you and your family...

{{{HUG!!!}}}

 

[Mishetta]

I'm so sorry for all you went through today. Please know that I will keep your son in my thoughts.

I'd also like you to know that when my Mother was dying, I found more comfort here than with family or friends because I was able to openly express myself. It's not as easy in person to expose your heart like that.

 

[Minniespal]

{{{{Hugs}}}} and Pixie Dust for you and your family.

God Bless ~ I hope everything works out well for you.