Words Mean Everything

I was sent an e-mail from a dear old friend of mine and wanted to share her words.

Most of the time I don't feel strong and don't always have the courage I portray --- her words mean so much and I'd like them here to read when I'm feeling lost from myself....

Heroes are mostly undefined

With an intense inner-strength and truth

Hold on to your center and keep your faith

For the Hero I see is You

~DLA

Dane - Thank you! Even after all these years you are still the amazing girl who moved next door, a friend I will always cheerish!!!

Zoe: Mini Update

I spoke with Zoe’s rheumatologist today about her recent blood tests.....

She too is worried about her low WBC count. She told me she would like to see her retested in 2 weeks. I let her know I was taking her in on Monday and she said "even better!" She agreed with Zoe’s pediatrician and said once a week blood draws if levels are still low and a trip to the infectious disease doctor as well.

I asked about her JRA causing any of this and she said "absolutely not" I asked if her Methotrexate would cause this and she said "in April she wasn't on it, the chance one dose would do this in May isn't probable and the probability of this being just coincidence is highly unlikely" in fact she told me the dose Zoe is on would not do this regardless.

So, still no answers as to why this is happening to Zoe, but I'm glad to know I have two wonderful doctors on top of her situation.

All About Zoe

I'm in shock right now

For the past 2+ years my main focus has been on Zach - don't get me wrong I've focused on Zoe too, but until now her health issues seemed to be resolving themselves and she has been doing really well regards to everything else.

The past month or so she had been getting flares from her JRA....last week we had such bad weather her flare got much worse. I called her rheumatologist and she suggested we put her back on her methotrexate.

Because we put her back on a weekly shot of the methotrexate, she needed to have a baseline blood test ran, because of this test we found her WBC count is low.................backing up a little, in April for her 6th birthday she had to have some routine blood work drawn back then it also showed low WBC - at that point her pediatrician said "we just need to watch her and make sure she doesn't get sick" Zoe never got sick! Fast forward to one and a half months later her count is still low (in fact lower then it was in April).....now we have no clue if it went back up in the mean time.

I will be taking Zoe on Monday to have another blood test ran. If her levels stay the same or get lower she needs to be seen by an infectious disease doctor ASAP. Until she can get into the doctor she will also be having weekly blood tests drawn.

I am extremely worried and over paranoid about the whole thing. My Grandfather died of Leukemia. Right now the pediatrician said the other blood levels are not showing signs that it could be leukemia...but that isn't to say it couldn't show up. OR it could be something else all together a simple cold lowers your WBC count --- the only thing that worries me is she has not been sick. It could also be a sing of something wrong with her bone marrow. If it were from a flare of her JRA her WBC would be high not low.

Off to being worried as it seems that is what I do best......OH and waiting, I'm really good at waiting too...........................

Poem

A friend of mine recently checked in on Zach and I and sent this poem, I wanted to share it with all of you....

I have hurt a thousand times but have smiled away the pain

I am courage

I have faced impossible odds and won

I am determination

When no one listened I trusted in God

I am faith

I have put my life in others' hands

I am trust

I have shared my story to help others

I am inspiration

I have fallen many times but I always get up

I am strength

I know that a day will come when all will be well

I am hope

I am courage

I am determination

I am faith

I am trust

I am inspiration

I am strength

I am hope

I am your child

~Author unknown

Isn't It The Truth

To get through the hardest journey we need only take one step at a time,

but we must keep on stepping.

~Chinese Proverb

The Lists

These are just rough drafts of the lists...I'm sure I will have more to add the more time I can come up with to sit and think about it. Doug and I sat the other night and started them and I've been going over them with his therapists as well.

Type of assistance he will need.....

• needs a nurse for his g-tube (feeds and emergencies)
• needs an SLP and OT
• needs AAC for communication breakdowns - signs or PECS
• need someone to help redirect when motor planning issues arise
• needs physical help for movement
• needs accommodations for his size
• needs sensory diet for school

Needs to learn.....

• his colors
• his numbers
• his ABC's
• how to point to objects in books
• sit and read books with someone
• how to socially interact with children and adults
• eye contact
• self care: dress/undress, potty, eating: feeding, swallowing, chewing
• how to adapt to change/transitions
• how to control frustrations: repairing communication breakdowns w/ verbal or AAC methods
• how to self regulate
• start working on articulation

The sad thing is it has been hardest on me coming up with things Zach likes to do and things he can do........

Likes to do.....

• Likes to play with trains and cars
• Likes to play his version of peek-a-boo
• Likes to repeat things over and over ---- still working on wording of this - he can watch the same movie back to back 15 times - or he can run to a spot back and forth a million times
• Likes to mimic -- if he hears something he likes to repeat it over and over
• Likes to pretend play

Can do.....

• Climb (although motor planning hinders this from time to time)
• Kick a ball (although motor planning hinders this from time to time)
• Throw (although motor planning hinders this from time to time)
• Run (although motor planning hinders this from time to time - with lots of falling)
• Talk in 2, 3, 4 words (although motor planning hinders most of the time)

Want Them to Go Away

All I'd like these days are for my nerves to go away.

I'm a wreck thinking about what is to come the next couple of months.....

First and foremost on my mind has been Zach's Summer Clinic, which is all set for July 27th I've been told we will be there for 3-4 hours.

Zach will be evaluated by a school psychologist, speech therapist, and an education specialist....threw play, observations and interviews with Doug and I. After the evaluation there is a staffing meeting to discuss Zach's results with us and we will find out if he is eligible for Pre-K Exceptional Student Education Program and/or other early intervention services. If he is we will be writing his IEP that day as well.

I don't know why I'm so nervous about this............partly I'm worried what if they say no - then what - what do we do? The other part is heck they aren't going to say no - he clearly isn't finished with his EI services - between his medical issues, his delays, his dyspraxia, and his SPD. Then that turns into OMG my baby will be in school 5 days a week from 8am-2pm.

I'm nervous about what to do, what to say, should we bring anyone - if so, who. I'm worried I'll ask and people won't be able to attend with us. I've already started making my lists (a book I'm reading told me to do so) so far we have........

List of types of assistance he will need...
List of what he needs to learn...
List of what he can do...
List of what he likes to do....

Then I'm worried about his appointment June 1st -- I hate putting him threw tests but these biopsies need to be ran again. I'm wondering when they will happen and how he will tolerate being put under again -- last time (during his surgery) he had a very hard time coming threw and could not hold his oxygen levels. I'm worried about what the tests show -- will the show nothing like what always seems to happen OR will the finally show what is wrong. From all of this comes the process of working to get him in out of state for help and where to go -- yep you've guessed it more nerves on my part.

Last comes the nerves about today.......Today will be a button change. I'd like to say it is his first but technically he had one 6 days post-op because of an accident where it got pulled out. He hasn't liked anyone near his button since it was placed almost 8 months ago but lately he has been even more protective over it. So I can only imagine how today is going to work.

I'm a bundle of nerves and I just wish for 24 hours I could get rid of them.

Quiet Place

Yet again I haven't been so good about getting on here with updates - Note to self: write, it makes me feel better.

I'm in a quiet place right now. There is a lot going on not just with Zach but some health issues are also happening with my beautiful daughter Zoe.

Zoe is having some incontinence issues. We have learned that her bladder is not sending information to her brain letting her know when she needs to go. On top of that she is suffering from major constipation. I can't help but wonder if all of this stems from her spina bifida occulta (the docs swear it doesn't but I'm not too sure about that) http://www.spinabifidaassociation.org/site/c.liKWL7PLLrF/b.2700275/k.5F64/Spina_Bifida_Occulta.htm Zoe is now back on a medication for the constipation and also wearing a watch that alarms every 2 hours to let her know she must use the bathroom. The hope is to re-train her to realize she must go potty. She is going to the hospital on June 1st for some tests to be run. I will know more about everything then.

Zoe is also having some major issues with her JRA flaring up.....poor kid has been in a ton of pain. She has issues with her hips, knees, and ankles....I've been noticing a slow down in her walking and some limping here and there. She doesn't want to go back on her methotrexate shots but I'm thinking she is going to need to.

Zach, well since his allergy test we've been staying away from his known allergens. Yet when he eats orally he is still getting very sick. Just yesterday he ate one strawberry and complained of pain. I'm about to say forget food....his g-tube is his life support and he is doing amazing on that alone! My fear is he will lose the ability to eat altogether...he is already delayed in this area.


Since my last update Zach went to the ENT...we found out his tube in his left ear is on its way out, the right tube is still in place. I'm to keep a very close eye on his hearing because of his past with glue ear and hearing loss. We go back in 5 months at that time they will also do another hearing test on him.

Zach has an appointment on June 1st and then we will find out when the GI is running more biopsies. After the biopsies are complete we will be working on going out of state for further help with Zach's situation. I'm hoping he will qualify to get into the NIH. IF not we will be looking at other programs around the country for the best help.

I got a call this past Friday and Zach is all set for his Summer Clinic on July 27th -- this is where it will be decided if Zach is going to our states ESE Pre-K program and his IEP will be written.

Still the same old same old with therapy.

Reminds Me of Zachary

If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.

~Henry David

How Long Can a Test Be? 72 hours, That is How Long.....

55 hours after the test (no so good of a pic) but his back is still reacting.

The last day of his test

First day of the test

About 40 minutes and some cream after the test was done: all red = reactions

Last week started with a bang on Monday when I took Zach to the allergist to begin what seems to be the longest 72 hours I've ever been threw in my life.

On Zach's back the doctor placed 14 patches that each had a paste made of different foods. This could not get wet and needed to stay on for a full 72 hours. He was checking for delayed reactions. Zach was in a ton of pain over the next couple of days, he itched threw the tape at one point. He cried most of the week and wouldn't walk; he wanted carried so his back wouldn't be bothered. The only thing we found that calmed him was for him to take some Children’s Motrin. We had many fights with the tape because Zach sweats so much that he had to be re-taped 5 times.

By the time Thursday rolled around everyone in the house was ready for Zach to get back to normal and stop fussing. I even left to get to the doctor early because he was in such pain. Good thing the doctor took him early too.

We found out that Zach is allergic to Milk and Soy (we've known this since he was an infant), Wheat, Egg, Barley, Rye, and tape. A couple others came back with a small amount of red so I'm going to be cautious of many things.
The allergist is very concerned because Zach is presenting like a case of EGID http://www.apfed.org/ He has tried many times to get in contact with Zach's GI with no avail. EGID is diagnosed between both the allergist and the GI - so we really need them working together on this. Because of the lack of contact....Zach's allergist has decided to take things into his own hands and will be sending us out of state to hopefully one of the countries top hospitals that specialize in EGID.

The positive news out of all of this is we are getting somewhere. IF EGID is what is wrong it will make sense why Zach's special formula has been the only thing that has made him healthy his whole life.

Maybe, just maybe because of this test and after 2 1/2 years of searching we may have a real name for what is happening to our son.