Hi Veronica, it is so good to hear from you again!! I am out here fairly often and have been thinking about you, Max and your family from time to time and hoping you were doing well. What a precious memory of Max. Anthony loved going to the Rennaissance Festival. Loved it! He always had a painting on his face or a tattoo of some sort on his arm, festival or not. He never grew out of it.
My name is Shawn Arndt. I am so very sorry for your loss. I too lost my son, Joshua at the age of 4. He passed away suddenly in front of me and my wife. Joshua was adopted from Russia and we were not told that he had Duchenne Muscular Dystrophy. We adopted Joshua at 10 months. He was diagnosed at 2 years. I have not been on the PPMD Web site since his death and decided to look at the grief and loss section and noticed your blog. We have been without Joshua since November 2009 and I want you to know that it does get better. You will never forget him as I will never forget Joshua. I guess all I wanted to say was that If you or your husband ever want to talk. you can let me know on the PPMD Page. I hope for only the best for you and your family and know that you will cope with your loss better day by day. Take Care. Shawn
I can even imagine how much you miss Max and how hard all of this is on you and your family. I will keep your words with me about wanting to hold your baby just one more time and hear him. My heart hurts for you and honestly I can even imagine. I want you to know that I am here for you if you need some support. I know it's hard sometimes to count on others and sometimes it seems like friends can disappear when a tragedy happens. I know that's true with just the diaganosis of Duchenne in iteself and let alone the loss of Max. It does seem very strange that Max seemed so active, just the minor flu like symptoms, then for this to happen. I hope that you get some answers to this, but it seems so odd that this happened with flu like symptoms. It sounds like he didn't have other issues besides Duchenne.
Yes, we did PGD. It didn't work the first time with us, but did the second. We have Anthem Blue Cross. We had to pay upfront costs of everything, but then got reimbursed from the clinic once insurance paid them. Our doctor was in-network, but their lab was out so we had to pay a bit more because of that. So if you decided to pursue this, definately check to see if not only the doctor is in-network, but that their lab is. Now with PGD you won't find an insurance company that has a lab that does the PGD in-network. So we had to pay for it again upfront, our insurance then paid us what an out of network lab would be. It was about $4500 at the time and we got back about $1200 from insurance. This didn't work for me, so I did in fact fight that ruling and the insurance paid the full amount both time we did PGD. So it's definately possible to make this not be too much of a financial burden. Our clinic did make us pay for the parts of IVF as well so it is several thousand, but again keep in mind that insurance will most likely cover some of these costs. I'm happy to talk about this more in detail if you would like, I'll give you my email and then I'll send you my phone number if you would like.
I started my first round at 36, but didn't have our now 2 year old until I was 38. So sometimes it can take time, for us we would start and then get a cyst or something, that I never knew I had and had to start again. Now I have to tell you that Giuliana my 2 year old had a twin, fraternal. We lost her at about 5 months along, long story, but we had an issue. My pregnancy was very high risk, but we ended up with our beautiful Giuliana and it was all worth everything we had to go through. Not easy, but somehow we made it. Honestly, if you are thinking of doing it, I would start soon, those clinics have all these stats they tell you about and everything and the younger you are the better. Now I'm pretty sure you know a very close friend on mine Melissa, Wyatt's Mom. I met her when Giuliana was a baby and we talked with her and her husband and they too did PGD, and now have our God son Carter, who will be 1 next month. This worked for her the first time, no issues what so ever. I have other friends too that have done PGD and works right away for them. I had to use the highest dosing of drugs to get my body to work correctly. Seems like if there is something odd or something challenging it will happen to me. Please feel free to email me at email@example.com and maybe we can talk on the phone sometime.
Thanks for getting back to me, I just needed to check on you!!!! Tonya :)
I've just been thinking about you today. I just wanted you to know that you and Max have really touched me and every night we pray for you and your family. Just wanted to reach out to you and know that I've been thinking about you a lot. Tonya
Veronica, How is Max. It's been quite a while since we talked. He's getting so big. How are steriods going for Max? Wyatt has come along way since my last post to you. He is totally running like crazy now, jumps both feet at the same time and is now FINALLY walking down stairs instead of slidding on his butt. I think the steriods are making a difference. He's happy and says "I want to do it myself" I think the biggest change is he's potty trained completely, at night during the day, goes on his own even. Take care I think about Max often, I hope he's doing well. Enjoy your weekend.
He can't jump with both feet off the floor at the same time, it's more like a bunny, hop, gallop thing. But as far as running, he can definately run. He's slower than most kids his age, but he has boundless energy. Back to the jumping thing, my niece is about 7 months younger than Wyatt and I asked her to jump and she can't either. At this age, I don't really know if they can physcially figure out what to do, so it's hard to say if he can't jump. He really can't do stairs well at all, but he's really short and has stubby legs. And you are totally right the steriods do make it real. I still "forget" sometimes and then it hits me like a slap in the face, it really sucks. I'm sure steriods will help. My friends son has been on steriods for a year and he jumps, karate chops, does stairs no problem. I think it's the right move for Wyatt and Max to do them, just to give them that extra little boost. Take care Melissa
Hi Veronica. How is Max? He's cute as ever I see. Yeah I leave actually this Sunday, visiting my sister-in-law in Milwaukee for a few days, then Wyatt, my sister-in-law, my new baby and I are driving to Cincy. When we were there in September we talked about Steriods then. And Dr. Wong thinks he will start soon. I think starting younger is better, because from what I hear the boys generally can start on a lower dose, which means less side effects and weight gain. Wyatt is very short and a little chubby right now. All his brothers before him we chunky at this age too then slim out so I hope he will do that too. Weight gain does scare me, but a friend of mine, her little boy has been on steriods for a while (almost a year I think) and he hasn't had any weight issues. Send me a message anytime. I like talking to you too. Our boys are so close in age that we're facing the same things at about the same time. Have a great rest of the week
Hi Veronica this is Tabby, Michaels girlfreind, we are in the middle of a remodeling on our house right now and Mike has been very busy so I have kind of taken over his page in hopes of meeting other families that have gone through or may be going through some of the same things we are encountering since Mason's diagnosis in May 2009. Mike, Mason and I are really looking forward to getting to know you guys . Your kids are beautiful!! Loved your photos !! Hope to hear from you again soon!!
Veronica, Aubrey is north Texas near Denton. It is a hike from College Station but we are always traveling around Texas. You have beautiful children! I was wondering how you cope everyday with heartache that your son might suffer one day?
Veronica. It is so nice to hear from you. Max is so cute. And your daughter is gorgous. They look like they are a total joy!
Oh my gosh, don't be nevous about going to Cincinnati. For Wyatt's care, it was the best decision we could have made. We were scared too, but they are incredible. Each and every person that we have ever dealt with at CCHMC have been amazing. You can feel it the minute you walk in the door. I pray that your experience is as positive as both of our visits have been.
They give you so much information that I made sure I brought pen and paper to take notes. Please let me know how it goes.
Her husband might be a distant cousin but we have no idea. I am not on this site much so here is my email firstname.lastname@example.org. I don't have any of Jacobs art work scanned on to the computer as its too big and i have no clue how to do it. If you get to DC he has apintings in several house and senate offices and the staff would be happy to show them to you, just let me know and I can arrange it. I love the photos of your kids.
Send me you address and I could send you a few small prints I had made to make cards with.
You have a beautiful family.
I was always clumsy too. Yes the opposite of athletic is a great way to put it. I do have the big calves but not all manisfesting carriers do. But I did always feel I was different so it made a lot of sense.
I also had the pleasure of knowing some of my family members with Duchene. I had 2 first cousins and they had wonderful lives. They were very smart and full of life. I also had an uncle who had it and my mother tells me the most wonderful stories about them. They all lived to 40+. My 2 Aunts are still around too so I have a great support network. I feel lucky in alot of ways because I knew so much more about DMD than many parents when my boys were diagnosed. It still really stinks but my boys are so great!
We also see Dr.Wong. I love her and here team so much.
My kid (5.6 years old) was recently ( In AUG this yera) was diagnosed with DMD ( exon 46 to 50 deletion).My mail is email@example.com. I am in touch with certain members of MDEX (http://www.mdex.org.uk/) to understand what exactly is required in our kid's case.
I thought that I read May, (I assumed 2009). They are incredible. And they don't miss anything. They cover all the bases, is so nice. What I honestly liked the most, was that each doctor no matter who it was, knew why we were there. I've gone to doctors that say "So why are you here today." Then I think, "Okay I filled out all your forms and explained everything, and you didn't even read it." It's not like that in Cincinnati at all. They actually read your child's file before you come in. (What an idea?)
We are scheduled to be back in May 2010 also, but I think I'm going to try to make it after school gets out in June 2010, so we can take our other kids too. We will do a roadtrip too. (we have 4 other kids). Let me know what sites you hit and maybe some will be along our route too.
Wyatt and I took Mommy and Me swimming all summer, it was fun. My 4 year old started too, he's not as thrilled about it as Wyatt is.
We are doing great. Wyatt finally about 2 weeks ago got his first tooth and he hit the 20 pound mark! (I didn't think we would ever get there). I want to wait on steriods too, but I would also be interested in seeing when Dr. Wong will recommend them.
How did your trip to Cincinnati go? You went in May right? When are you going back? We are going back in December. Wyatt's growth hormones levels are off, so Dr. Wong wants to run some more tests.
Wyatt loves veggies, but since his Vitamin-D is soooo low, he's taking D and a multi. I was wondering about all that other stuff too, I think our boys are still too little.
We did have a great summer. It seemed long actually. It was pretty warm (unseasonably warm for Washington) a few days, The upside, I didn't have any laundry. My older kids lived in bathing suits and Wyatt just wore diapers. hahahaha
Hi Veronica, How are you and Max? I keep seeing on Dr. Wong's site that people are giving their kids steriods (our boys are too young, right?) and supplements, Wyatt is only taking a multi-vitamin and Vitamin-D, what is max taking? If you don't mind me asking.
Your children are beautiful! Thanks so much for watching Nicholas's video - he was very excited about getting his wheelchair, so we tried to make it fun for him when it finally came. All the best to you, and Max is lucky to have such a great mom!!! Take care,