Perlita & Gordy Hains's Comments

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At 1:20am on March 28, 2009, Jill Castle said…
I'm so sorry, this must be killing you. It took us three labs 6 weeks each to find the results. Hang in there and let me know as soon as you find out ok?
At 2:21pm on March 26, 2009, Paul Johnson said…
Be patient (easy to say - tough to do...) - but I know what you're going through. Now - are they saying the don't have the results because they didn't find any deletions in teh first test and were then sending in for another series of tests to be run to look for other mutations? Or thave hey just haven't gotten anything back yet from the first test still?
At 1:50pm on March 18, 2009, Paul Johnson said…
Hello Perlita,
We've had our checkups - things have gone well so far. He's been on the drug almost 10 weeks now... Hope things are going well for you and I'll be thinking of you next Friday....
At 4:19pm on March 12, 2009, Dana Edwards said…
You can call me anytime at night after 9 is usually best. Most of the kids are in bed and I can hear. Just to let you know Tanner has been on deflazacort for 3 weeks now and for the past 2 days he is getting up of the floor w/in 2 seconds. Call me I will share our journey since the diagnose. 732-255-2347. I think we might have the same doctors if you go to CHOP.
At 7:12pm on March 9, 2009, Dana Edwards said…
Hi Perlita, My heart breaks for you. I was where you were last year and the pain is so incredible. I stayed on the couch for at least 2 weeks before I would talk to anyone. All I want to say is that it doesn't go away but it gets easier. My son is 4yrs. and like you I had the greatest life. We have 6 kids. this doesn't run in our family. Then this just hit us. I can't stand when people say God only gives you what you can handle. Tell me where did we sign up for this?? Instead I look at it now as God only gives his most wonderful parents this challenge to show the rest what real love and family is. I just want you to feel better. We have some good things coming our way hopefully really soon. For my son it is utrophin. Pray we slip out of this nightmare.

God Bless, Dana Edwards
At 6:34am on March 9, 2009, Niccole Papp said…
Hey, just checking in to see how you are doing? oh, and your pics so cute. Your boys are adorable.
At 11:13am on March 7, 2009, Jill Castle said…
That's frustrating. Hang in there.
At 9:36am on March 4, 2009, Paul Johnson said…
I'm so sorry... I can believe it though as we went back 10 weeks after the initial blood draw only to be told that the second round of genetic tests had never been sent out for due to insurance issues! But did anyone bother to call us? No. And despite our constant phone follow-ups asking if the results were in where they just told us they hadn't gotten the results back yet - I guess no one ever bother to check if the reason they weren't back, was because they weren't actually sent for. Oh well... I can relate to the anguish of your wait. CHoP has great doctors, but some of the admin stuff is absolutley mind-boggle-ingly (is that a word?) frustrating. We'll be there on April 1st & 2nd for some PTC124 study appts, so just in case they push you back another week - we'll have an opportunity to meet ;-).
At 10:31am on March 3, 2009, Paul Johnson said…
Hello Perlita,
Some great pics of your sons. I'll be keeping you in my thoughts this Friday.
Regards,
~Paul
At 8:11pm on March 1, 2009, Niccole Papp said…
Hey, anytime. That talk was my therapy too!! Will chat with you soon. In the meantime just take one day at a time and enjoy it.
At 3:25pm on February 27, 2009, Erin said…
Hi Perlita, I am so sorry. It will be 2 years tomorrow since Nicholas' diagnosis. It is very overwhelming. I just try not to think of the future and just enjoy today. I really believe there will be some breakthrough out there. I am very happy about th news today. I have been looking for Jill's # and I have lost it. Please call if you want to talk 281-213-3199
At 3:08pm on February 27, 2009, Jacobs Mommom said…
Will you be seeind Dr. Finkel? That is who Jacob sees but we also take Jacob to see Dr. Wong in Cinn. Children's once a year and I would highly recommend that you do the same thing at least once. The care that they give is top rate and she will take the time to answer any questions and explain alot of things to you plus when you go there it is usually for 3 or four days at a time and you get to see all the specialists at once. They do tests that CHOP has never done. They will also talk more freely to you about the use of supplements. You are lucky in that you do have time on your side so just keep that in mind till you learn more.
Here's my number in case you ever want to talk. 215-345-7421
At 1:43pm on February 26, 2009, Niccole Papp said…
Hey, email me your number @ niccolep@comcast.net
At 10:44am on February 26, 2009, Jacobs Mommom said…
It has been two years for us on February 21st. and we are still in a state of shock most of the time. But, there are drugs in the pipeline that the scientists are working on and we just have to have hope that they come in time. Can I ask what your son's mutation is? Jacob has deletions of 42 and 43 which unfortunately will affect the heart more so we are very interested in getting him in the trial for Losartan as soon as possible.

I will let you know when we will be coming up your way this summer and we can get together.
At 8:08am on February 26, 2009, Niccole Papp said…
Hi, Alisia did mention it. I was just waiting for you to contact us. Well, unfortunately I am welcoming you to a whole new world. I have to be honest. Michael our almost 3 yr. old was diagnosed in May. I believe I am now just getting our of my denial stage and finally realizing that our world has been forever changed. We have been to CHOP started the nightime strectches, night splints and aquatic therapy. I am starting to learn to take one day at a time instead of wondering what the future will hold for him. It becomes very overwhelming. This site is great because they is alot of supportive people on here who are going through the very same thiing. For now our son is doing well so I am starting to savour these moments. You can call me anytime. We will be in Hershey April 18th for the Disney on Ice show. Maybe we can meet up if you are up for it.
At 10:11pm on February 25, 2009, Jill Castle said…
Call anytime. I remember those feelings like it was yesterday. But nothing that the docoters described back then as being our life, has been true. Remember they are describing what has been in the past.....they have no way of knowing what lies ahead for your son. None of us do. It will be a different life than you planned....that is true.... but it just may be okay. Hang in there. We will speak after this weekend. We have a big fundraiser and Pat Furlong is here so I'm entertaining.
At 10:13am on February 25, 2009, Jacobs Mommom said…
Hi Perlita:

I am the MomMom of Jacob, 8 1/2 who has DMD. My daughter and her family live in Lansdale, PA and I live in Doylestown, PA. I am up your area alot as we go camping and I have friends up that way.

Please go to the "Groups" board at the top of the page and find the PA Families group and join. This way we can plan to get together and meet everyone.

Donna
At 3:53pm on February 24, 2009, Jill Castle said…
I hate to welcome you, but know that you are truly in a family that will love and embrace you and your family now for all the years to come!

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