Ruth Griffith's Page

Hi Ruth, just trying to connect with some of the other Washington families out there as there are many of us.  We need to have an event to get us all together.  I think FACES is supposed to do that but we never hear anything about it. 

Yes, Brayden is older then Micah.  My boys are adopted so there is no bio connection between then, thus why Bryaden does not have DMD.  Micah is also cognitively delayed and we have faced many challenges in this area!  he is in third grade but at about kindergarten level for all work (except language--talking that is)  lol  the kids can talk. 

We are  not able to go to the Muscle Walk this year but our good friends the Zenobios are (Addison is their son) you need to see if you can find them, they are wonderful!!

 

well, hoping we can all get together sometime in the near future!

Janelle

That sounds right to me, Ruth!

Hi Ruth,

I would love to meet you and talk.  I can not meet during the week either, Mark and I work.  You seem so together and I still cry every moment alone.  My e-mail is hartwig701@comcast.net and my phone number is 425-265-9939.  Jacob does not know anything so when they answer the phone just ask for me and give me a second to get outside or upstairs to be alone.  Mark is in denial and I cry all the time.  How can that be good for Jacob!

Hi Ruth, My little boy is 7 years old and has deletion 45.  He has been on deflazacort for 6 months.  Jacob was just diagnossed in January.  Are there any support group or any kind of help out there for us?  I have left Jennifer at the MDA office two phone messages and some emails but have never even talked to her.  I feel so uninformed and when I look stuff up online it brings me to a place of deep depression.  Thank you for replying, I thought Jacob was the only one with this horrible illness out there.  Oh, how does this website work?  I want to be friends with Char but tried and failed.

Prayers and Love,

Cheryl

I'm back.

I actually drew blood on Mia soon after she arrived from Vietnam, as she was hospitalized for pneumonia in the ICU where I worked at the Children's. She kept repeating this word that the poor new, french speaking parents had absolutely now clue what it meant. She appeared very calm, but kept saying ki, ki (hard i, sounding like high).  Then a few weeks later when she was better and discharged, the dad brought her back to the clinic for the "international adoption" blood work that we do to check for HIV, hepatitis, rubella, etc., and the dad was relieved that it was me again going to draw the blood because he found I was very gentle and she didn't cry (adoptive parents are usually more anxious and worried about everything than biological parents). And I remember them that day, and discussing her repeating that word. So the dad is very touched that almost 2 years later now, I remember them from all the kids I see each year, and his proof is that I mentioned that she was repeating that word.

Some people just  "stick with you", there's a connection. And you are one of those people Ruth. Thank you.

Andrea (I will shut up now before PPMD kicks me out again!)

Hi Ruth (of the "looks like a kiss, sounds like a fart" moniker), I'm still hanging around. Staying out of trouble for the most part (NOT!)  Sent the boys to and from school today for the first time by bus. It's only a 10 or 12 seater, very modern and rather low-rise, so only 2 stairs and they are only about 4 inches high, so very doable for Simon compared to the big, old buses with stairs 2 feet high! I was always scared he would fall and break his teeth when he went on a field trip. Simon is in grade 6 (off to high school next year, i can't believe it!) and Will in grade 3, already "forgetting" his homework.

I would like to share my new blog with you if you are interested. "Off the LIst" and "On the Eve of Simon's 11th Birthday" are already on there. My therapist just convinced me to "share" it with my husband, who of course became fixated on the first one about him "Spooning Leads to Forking". I guess calling him a "moron" was a tad harsh, but I explained that I needed a word to rhyme with "lawn". You're a poet, you understand!!!

Dry Drowning  (www.drydrowning.blogspot.com)

The neighbors across the street (she's a neurology resident trained by Simon's neurologist, but we didn't know that when we moved last November,  I just knew she looked really, really familiar) have 2 adopted Vietnemese children. Samuel (5 and just started kidergarten like Jason) and Mia (just turned 3). They are very sweet, and I think of your little guy when I see them.

My message is too long (as usual), so I will continue on another. See ya soon.

 hi ruth i am so sorry that i have not gotten back to you, how are you. i am great . finlay feeling well enough bounce back form the sinus infection. my mom   rase  or still  rase me even thought am   going to be 41 on 20 of july. my mom is a single mom, i  have many phycial challenge but i do let that get me down, i have  muscle that were weak, and it took 14 operation to get them strong again, plus i have l earn challenge a, anixty dessprisson. a   father who could not cope  with a child with phyciall chalenge. that made me what i am . i am gift just  like jason is a gift which made me decide that i will be doing the seattle rock and rool half marathon on june 25 plus i will rase close to  onte thoussand dollars. kimmy watters

 hi ruth  my name is kimmy watters how are you doing ,  pl let me know if i can do anything to help you. kimmy

Hi Ruth - We live in Seattle, WA and we have a son 8 years old. We are older parents like you all and just wanted to let you know that this is a great organization for knowledge and support. Do you go to Children's Seattle? We go to Children's Cincinnati and Seattle. Here is my email charlatte2@comcast.net if you have any questions, etc. So sorry about the diagnosis - it is one of the worst things to go through but there is alot of research going on. Be sure to get your son on the registeries and know his mutation. Char Burke