Really Bad Mom Alert!

Do you see the braids in Honey's hair in the pictures from Camp - in July.... some of them are still in and I don't know how to get them out.  They've grown and are becoming a mess in the back of her head....I have NO IDEA how to get the braids out.... I'm almost in a crisis mode here... except I don't really have time for crisis mode - takes too much time.... until then I'm just conditioning and conditioning and conditioning (washing too, and spritzing with vinegar water solution...and conditioning!)

The only solution that has surfaced for me to be able to share recent photos is for me to delete my earlier posts.... from back in 2008....?
can't do it.
We've gotten a new computer so the old pics are on the old computer - and then in the blog, and on fb.... can't delete

I'm thinking that maybe I'll start a new blog and link over... that's a thought.

So until I make up my mind on this little bump, I'll give you a little snippet of a conversation between Honey and myself earlier today.....

We were getting a couple of birthday presents ready for her to take to a double party this afternoon.
We were making homemade tags for the gift bags....
I picked up a flower paper punch and punched a hole in the corner of the card/tag and proceeded to cut ribbon to put in the hole before Honey was going to go off and decorate, color, stamp, whatever, decorate the cards

She softly said she "hopes the f word is covered up"
ME: "F WORD?!"
Honey: "Yea,"
ME:  "WHAT F WORD?!?"
Honey: "The one on the card."

ME: "Show me where it's on the card."
She points to the corner where I used the flower paper punch.....
{I'm still confused}
Honey:  "the flower, I don't like that flower there....I'm glad the ribbon covers it up."

Phew.... I thought she was talking about a different word...... yea, she isn't a pink, fluffy, girly-girl..... she didn't want the small flower paper punch to take over her cards..... She's keeping me on my toes!

Say it ain't so!
It's been over 4 months since my last confess..... ahem, post.
I do apologize.
The summer was rough
adjustments, rough
gaining new medical knowledge, rough
being a family with a new member, yup, rough
it's all good, and it was good then, while it was rough, we recognized that we needed to get through the rough patch and onto our yet again, new normal.

I won't go into too many details, but he's a joy, he's brilliant, he's misunderstood ( a lot)
but he's in school 3 hours a day
and loving it!
and daddy (or "da" as Short Stuff says) is loving it too!

I love seeing their relationship blossom as I'm back to work and they're bonding.
(I do love my greetings when I get home - borderline abuse with the excitement he has spilling out on me!)

A few pics
pics will have to wait.... our free 1gb of photo space is full.... need to think of a solution b/c we all know how cheap I am (not going to pay for space when I can get it for free....) solutions? suggestions? anyone?

You want to see these pics, you need to see these pics, he's adorable, fun and feisty.... you can see it in the pictures

WOW!  We're home from camp and our minds are spinning!!!

A long, long time ago (almost a week) we were in the big circle of introductions and many families welcomed the new families (19 of us) and told us many things - much of which I can't remember.... but some of it is as simple as, "this camp saved my life!" and "this camp saved my child's life!"  Although that seems a little dramatic - I see what they mean.  There was so much critical information that we need to take to our clinic for the sake of our child's life.  We were taking for granted that medical doctors in the medical field know everything there is to know about every medical condition.  We're remiss.  Diamond Blackfan Anemia, (Pure Red Cell Aplasia) has such a small population that many doctors have never had a patient with DBA, and have only read about it in books, and assume that it's like other bone marrow failure syndromes - thalassemai and sickle cell anemia.  Unfortunately it's not.  Although some of the treatments are the same, transfusions with chelation (ridding the body of iron that has bypassed the iron door), the side effects are different.  So when doctors lump all of their anemia patients together they're not totally accurate in understanding that the numbers may be the same but they might not exactly mean the same thing....

ANYHOW, we have lots of information spinning around in our heads.  Lots of new words and feelings.  One parent said that DBA (Diamond Blackfan Anemia) is the best bad thing that ever happened to them..... It's the worst thing that ever happened to them, but it's the best thing too.  They're raising money for research, their marriage is stronger than ever, they feel love, passion, and have energy they never knew they'd have to fight for their children's lives.

Many parents are raising their DBA children without another parent - sadly the marriage couldn't handle the stress and unknowns of DBA.

One thing we noticed about Camp was that many people seemed to rely on God, have some sort of faith, yet there weren't any breakout sessions addressing this.  We see a need.... and maybe that's something we can help build at Camp  - any camp, all camp or just during our Camp session.... which we hope we can get invited back too!

We have a new protocol for Short Stuff's care..... our doctor doesn't know yet though, so shhhh, don't tell.  We want to present it respectfully with journal articles.  We're going to be a team fighting for our child's life.

We were sent home with a directory of the families who attended so that we can continue dialogue, support one another and get together.  We were also given a CD with over 2500 pictures on it.... I haven't finished looking through each and every photo.... but here are a few....

Day 2 or 3 or something like that at camp sunshine!

The big talks are coming tomorrow the topic: iron overload.

The importance of getting rid of iron that the body doesn't process. When patience receive red cells they are also receiving iron and their body doesn't naturally take care of the iron. Our livers process iron as our red blood cells die out (after 120 days). Transfusion kiddos (and adults too) receive more iron than they can process.  A child, like ours, receives monthly transfusions where  the body doesn't have a chance to get rid of the iron. It's interesting that Diamond Blackfan Anemia has the word anemia in it and anemia is associated with low iron and how ironic that these kiddos actually have too much iron and need help ridding their bodies.

Oh lots of information.... and there will be more on chelation tomorrow. The news about chelation is that kids don't want to do it subcutaneously, or orally, or intravenously - and the sad part is that once kids become tired of chelating then they quit or give their parents a tough time. So here's the thing - if they miss treatment for any amount of time - 5, 10 years, they don't feel bad. If they miss a blood transfusion they feel low. Missing chelation has no immediate negative feelings ..... 10 years later though, the body has toxic levels of iron pooling around internal organs and well, it's sad, unnecessarily sad. (it doesn't take 10 years for toxic levels of iron to crowd the organs) And it happens b/c young adults or even teens or even stubborn children are tires of shots, IVs, and daily meds that are controlling their lives and they just rebel. this is something we did t even think about when our feisty impulsive 4 year old turns ..... 8, or 12, or whatever the age is that he plans on rebelling - I'm not looking forward to that!

Today honey participated in a talent show and did somersaults and cart wheels until she was dizzy! Now we're all dizzy!

 We visited with famous doctors to discuss out son's protocol and get into the DBAR, (registry) nothing like the registries we're used to in our small town lives. Tomorrow, looking forward to quiet time in the afternoon so someone can get a nap - he hasn't had one since we've been here - he's really much better with a mid day rest! He's been loving playing all day in the sand box and on the slide!

 We've found some great families from all over North America to connect with! So excited for that! Gotta go- my eyes are falling out of my head I'm exhausted! Again please excuse major silly typos! Auto spellcheck can be quite obnoxious.

Positives:
Jack made friends
Danced in stage with these new friends
Hung with friends during lunch
Held his little brother so I could get our meals
Offered to get our meals
 Selam dances in front of others
And enjoyed it
Had a smile on her face all day
Her face is stuck in the smile mode
Almost ate fish sticks.....

Can't wait for more tomorrow. Both kids had lots of questions about what we are doing when they are in activities. They started asking questions about short stuff's medical condition... They are showing interest. Some of their new friends might also be DBA patients and might be taking about their iron numbers, method of chelation, steroid therapy, number of transfusions, ports..... It all means so much to everyone here and this week these kids and adults who are burdened with a different kind of life: this week they are
dancing to the Macarena,
eating too much ice cream,
making beautiful beaded arts and crafts,
working on talent show acts and
just forgetting that they are different than their peers back home.

And us parents? The ones who are on a different kind of overload?
We are laughing,
crying,
hugging, and
eating our way through the week as we
attend sessions given by the world renown experts, the ones our local doctors use as a reference b/c as I said they know as much as is known about Diamond Blackfan Anemia

This morning we had introductions and met the families who
are from all sorts of backgrounds
with all sorts of histories
with all sorts of reactions
with one thing in common...
They are either a parent of a child with DBA or an adult with DBA... Yup, a couple of 50 somethings with DBA are here to tell their story, as well as some you adults who are in remission and even some very sick young adults who are in dangerous zone of iron overload.

Lots to process. A week isn't enough. I know I'm better for being here, but it's HARD to hear everyone's story and resist asking how they do it b/c no one wants a pity party, no one wants to gloss over it, they want answers and medical advancement so that they can know their child will survive. Learned something about blood donors today- when we receive blood from a volunteer as blood drive the blood could be almost at the expiration date... If we have a designated donor we would receive their blood 3-5 days after they donate - its fresh blood. One parent advocates going this route b/c their child's hemoglobin stays higher since participating in the directed donor route to transfusion. So..... Any A+ blood out there? Again, please excuse the typos- I'm blogging from the phone and it's choppy ....

Diamond Blackfan anemia over load

I'm not going to lie. I thought I was going to camp to be a camper. Or at least for my kids to enjoy that true camp experience- archery, arts and crafts, game room, cafeteria line wih as much yum-yummy food as you want, bug juice, etc you get the picture.. Camp Sunshine is prestine! Clean, shiny, more people in yellow tee-shirts than not, (volunteers) HOWEVER, about a week ago the organizer phones me to tell me That indeed its not an opportunity for respite, it's an opportunity to network, get support, and meet others with the same diagnosis as Short Stuff and even more importantly, an opportunity to listen and ask questions about medical protocols, what's out there for trials and information. Did I mention that there are only 700 registered cases in Noerth America? Yes, that's countin the 2 in Canada. There is a foundation which I researched last night..... I wish I didn't. I like "ignorance is bliss" too much information, too many sad stories, too much weight on my heart for my own kiddo as well as those I haven't met. And they want to gather us together to help us make decisions for our children, or introduce our doctors to possible treatment plans. Did I mention we are the only case at our sons hospital? Get this: there are only 4 cases at CHOP (children's hosp of ?(some place in PA). So yea, I'm gatMhering info, stats, bu hard is the faces that accompany these numbers. Each person is required to wear a name tag and there's a certain code on the tag. A sunshine icon is "first time family" that's us. People are extra helpful to the sunshine wearers. An asterisk = person with DBA diagnosis, again with the faces associated to stats. There are 56 families here = at least 56 people here who know their hemoglobin and feritian numbers (iron level). The word MRI and Exjade roll off moms and dads going like they are medical professionals thenselves. The tidbits of information keeps coming as kids toast marshmellows, play volleyball and volunteers serve blueberry cobbler- as if this is all natural ...... My head is spinning, heart is aching, eyes are leaking, and it's just the first day. I have no idea how I'm going to handle the introductions tomorrow- I want to opt out and go hang with Max the therapy dog. Sorry if there are any crazy errors - I'm on my phone and it's hard to go back and spell/grammar check.