Sad story, but I need your help please! **UPDATE page 3!** - Page 3

[Delta]

[sarahloughmiller]

Jackson is beautiful! I also have a Jackson that was born 3/1/04. I can not imagine what you are going through. Hugs to your family and I hope you get through this OK. I vote for a wrap also, or maybe you could have a sling specially made for you with extra support?

[Quaniliaz]

I just thought of another idea that hasn't been brought up - how about a fleece sling?? I really like how well they distribute the weight over your whole shoulder!!!

I think you just need one of each... Post in the Random Acts of Kindness Swap Thread and we'll send you what you need.

[campingmumma]

D'Anne,
Your son is beautiful and many hugs to you and your family

If you son was diagnosed with SMA, I may be able to link you some resources. Our former neighbors are very involved with Families of SMA.

[morgainesmama]

We wree recently talkign at thebabywearer about how Mexican women wear their little ones up to age 9 or so in 1 shoulder carries in rebozos while at market. Your son is so lucky to have a mama like you who cares so much for him!!!

I second and third the suggestion of a wrap carrier. I wore my son on my back at a week old, with almost no muscle control. The piggyback position of teh back WCC would be comfortablr for a larger child ... I still carry my 40+ pound 4yo this way. You can spread the fabric to cover his arms and back up to his neck to support him.

Normally I would heartily recommend gauze to you; I love gauze wraps beyond all else, and think they're great. But the fabric of most gauzes is thin; I would recommend either a heavy gauze *they;re out there; I have a few lovely thick ones) or a heavier fabric. I wouldn't think a Didymos would be what youwant; they're 22" wide and that wouldn't be enough to tuck in an older child well in a back wrap cross carry. A guatemalan hand-woven would be lovely, though expensive. They usually come in 30" wodths, and at our local fabri cstore they're $15-#25 a yard. You could eaily hem of fringe the edges yourself. I think EllaRoos are about 30" and cost about the same, and have no sewing either, just fringed and knotted ends. And since there are no seaams in a wrap carrying heasvier childern is less of a concern then in carriers w/seams.

I hope this helps ...

Kristi

[Treasuremapper]

{{{hugs}}} You are one brave mama.

I have a very large baby (22 pounds at five months, now at least 26 pounds at 11 months). It was especially challenging to carry Rosie when she was still floppy but heavy.

I love zolowear slings, and they work really well for us. But when wearing a big baby for a long period of time, the general recommendation is to use a carrier that goes over both shoulders to help distribute the weight. I borrowed a friend's ergo the other day and I really liked it a lot. It seems like it would offer more support as your baby loses some of the control in his head, but that you could still hold him close to you.

[jackson's mama]

Mamas, thank you again so much for your continued support and lovin'. These past few weeks have been so confusing and heartwrenching for us, and we are in a state of limbo regarding our son's actual diagnosis. In some ways this is good, because we can continue to hope for the best possible outcome. But the fact remains that our sweet boy is losing his muscle tone and lack of a diagnosis doesn't change that. *sigh* We continue to persevere, and the good wishes and prayers of mamas like you all carry us through.

I have tried an ABC-type sling a few times, and Jackson doesn't seem to care for it even in the front position. Really bums me out, because I spent so much time toiling over the thing and its so pretty . I think the problem is that his legs are beginning to get a bit stiff in the hips and the position isn't comfortable for him. I think an Ergo would have the same problem for us.

I'm not familiar with a wrap at all. For a larger child, do you carry them on your back? Or can you do a front carry facing out?

Thanks again for all the help and support .

Peace and blessings,
D'Anne

[Mama2Xander]

Sorry I don't have any advice to offer, just wanted to send hugs and best wishes to you and your family. Jackson is very lucky to have you as his mama.

[morgainesmama]

A back carry is comfortable and ideal, IMO, bet a front carry in a wrap is equally comfortable. At http://mamatoto.org there are photos and videos.

Kristi

[SMPH]

D~~I just bought 6 yards of fabric yesterday to play with. It's 45 inches wide and a woven so no stretch. I carried Mister Aiden on my back and then front while I cleaned parts of my carpet (stupid cats). It was comfortable and cheap. Even cheaper if you use a 40% off coupon from Joann's (sign up online nad you'll get an email). It's not pretty (unbleached muslin type) but it works for around the house. I know you don't have time to sew but really all you'd need to do is the ends so they don't fray (frey?).

It may take a few times to learn how to do the different carries but that was part of the fun! I don't see the carry I used for the front but I could have A take some pics next week if you'd like. Actually...I might know where there are some pics on-line. I'll get back to ya.

xoxox,
Shannon

[FillingMyQuiver]

Oh mama, and : for your family in this trying time. May you have a watchful hand on your family and may you find peace in your situation. I agree with pp about the wrap, but make sure you get a woven fabric (like an Ellaroo), not a real stretchy one. The woven fabric wil have minimal stretch, but as your son gets bigger, it will give you more support. Your family is in my daily prayers.

[jackson's mama]

Thank you so much for all the support, mamas. I thought I'd give you all an update on Jackson's progress since you have been so loving and helpful to us, and it is due in part to your prayers that I have hopeful news to share.

We received Jackson's confirmed diagnosis yesterday. He has a disease called Krabbe's Leukodystrophy. This disease is normally terminal. The only treatment option is a stem cell transplant, which can stop the progression of the disease if obtained early enough. We will be flying to Duke in North Carolina for an evaluation to see if Jackson is a good candidate for this therapy. If he is a candidate, we will be there for 4 to 6 months while he undergoes this scary but potentially life-saving treatment.

Please keep Jackson in your prayers. I may not need special carriers if all goes well, he may be able to walk like a normal little boy The link in my sig is to his website, feel free to keep up with us there as I am keeping a journal of events on the site.

Peace and blessings to you all,
D'Anne

[veganmamma]

D'Anne, I would love to get together this week to play slings and hang out. I need a day or two to wash my slings up nice for you. My heart has been so heavy today, I'm glad there is some treatment to look forward to. With your permission I will tel our friends and family his story so that they may all pray for him/ send positive energy etc., in their own way. It is all I feel like I can do. I hope to see you soon and give you a big hug.

[CrunchyMamaToBe]

[josiesutcliffe]

Originally Posted by jackson's mama

We will be flying to Duke in North Carolina for an evaluation to see if Jackson is a good candidate for this therapy. If he is a candidate, we will be there for 4 to 6 months while he undergoes this scary but potentially life-saving treatment.

Hi, I know I haven't replied to this thread before but I noticed your mention of Duke. Duke Children's Hospital is great. I have a friend who works in administration there and she's heard so many success stories. I live in Durham, so if there's any help you need while you're there, please PM me.

Joanna

[liam's mom]

[beanma]

D'Anne, i'm in chapel hill just a hop skip and a jump away from duke. please PM me if you need anything. duke's children's hospital is very nice. hope the stem cell transplant is your miracle. keeping you in my thoughts.

p.s. we did donate our dd's cord blood.