In limbo

Hi, all -

Not much to report.  We are in a holding pattern til lil monkey turns one.  Her harness was removed at 6 months, and her left hip was still one degree off.  If it doesn't improve to "normal" by her one year mark, she will have to go into a brace at night for a while.

We are trying to not worry too much about it, but it is hard not to do so.

When September hits and we have more news, we will let you know!

The beginning of the end?

Our little monkey had a check up two weeks ago, and after 11 weeks in the harness her hips remained in "normal" position.  Over 60% of each femoral head is in the socket, and that is within "normal" ranges.  We were told that Monkey could go out of the harness and only needed to be in it nights and naps.  We were even told that if she got super fussy when she had it on, she didn't even need to do those times.  We take her back in two months, once she hits six months old, for an xray to see if everything is still stable.  If things still look good, she will go in for an xray at one year, then annually until her late teens.  Unfortunately this is something we will have to keep an eye on for a long time.  Our fingers are crossed that we are done with the hard part.  The harness, while it worked, was tough to deal with emotionally if not physically.  Monkey never really acted like it bothered her that much, but once we released her from its constraints, she beamed with joy.

She continues to kick kick kick all the time, and as she gets more mobile, her natural leg movements will hopefully continue to deepen the sockets.  I will always worry about my baby girl's hips, but I am so glad to hopefully be at the beginning of the end of her treatment for DDH.  To be continued in 7 weeks!

Nerves!

So, life is still carrying on with our normal.  Monkey has now almost been in the harness longer than she hasn't been in the harness. That seems very strange to me.  I'm so used to the harness now, it's second nature.  While I look forward (and so want!) my little girl out of this damn contraption, her jelliness will probably come as a shock to me once she is out of it.  The harness almost provides a "carrying strap" and adds some rigidity to what I believe may actually be a baby that is half octopus.

On Tuesday of this week, we head back to Nationwide Children's for an ultrasound and an ortho check up.  Our last appointment was almost five weeks ago, so we are hoping to see some real progress.  At our last appointment, her right hip was already in the normal range with a measurement of 60 (not sure if that's degrees or percent - I think percent?)  Anyway, 60 is the magic number.  Her left hip was at 47 five weeks ago.  The ortho said we can expect an average change of 8 per month.  If Monkey fits the average, we should hopefully see a number of 57.  That would hopefully mean only about another 2-3 weeks in the harness full time before we can start weaning out.

While I am terribly nervous about the appointment, I am also filled with a high level of hope.  As i sit and feed her every day, I rest my right hand under her left hip and try to spill every bit of good energy into her.  It may be silly, but I just try to will any healing feelings I have into that little bundle of awesome.

She is just so amazing, and I would love to be able to give her a big hug without clunky fabric in between us.  And what I would give to kiss those little feet!!!  If you have any good vibes to share, please send them our way!!!

Keeping up with the Joneses

This Thursday will mark four full weeks in the harness.  Miss Monkey is doing wonderfully in it acceptance wise - she really is.  Most days, I'm doing fine with it, too.  There are still times though when I curse the damn harness.  For example, each year we are invited by a group of friends to head out to a lovely little cabin out in western Maryland.  We have gone the past two or three years, and we always have a great time.  Hiking, hanging out, relaxing.  This year we passed on the invitation.

In hopes that we are doing everything we can to make sure the harness works, we are concerned about a few things.  First off, the car ride out there.  We were told to minimize the time Monkey spends with her knees pushed together.  That means long stints in the car seat are not a wise idea.  The drive out is four hours +, and doing that the way out AND the way back just seems like TOO long to me.

We also usually do a fair amount of outdoor exploring and hiking at the cabin, but I, too, worry about Monkey getting too cold in the Moby (that's the only carrier we have to use right now) and her hips getting too much strain being in the Moby that long.

All of my worries may not even cause damage, but as a Mom going through this battle with DDH, I can't help but be concerned.  So while our friends all head out for a long weekend of fellowship, we will stay behind and battle DDH.

We are two weeks out from our next ultrasound, and I so hope that she has continued to show improvement.

Life is "normal"

Tomorrow marks two full weeks in the harness.  We had an appointment last Friday morning with our ortho, and she actually showed us the ultrasound pics this time around.  We got to see the first round pics and the second round pics  - the second round being the pics of one week in the harness.  Amazingly enough, you could already see a difference!  Monkey's socket is getting deeper, and the angles we are looking for are improving.  We go back in in one month to re-evaluate.  Ultrasound at the hospital, then we head to the doc's office for evaluation.  We *may* have to make a stop by the doc's office in a week or two though just based on how fast Monkey is growing.

When the doc walked into the room last week she declared "WOW!  Is that the same baby??"  We had to get a fairly decent size adjustment on the harness in only a week - I assume we will have to do it again by the three week point.

Fingers are crossed that we will end full time wear of the harness by the end of the year.  After that, we will start to wean her out of it - out for 4 hours a day, then 8, then 12, then only naps.  We will do that til we get the phrase every DDH family longs to hear - "You've got perfect hips!"

I'm so proud of her though - she is just doing amazing and her strength inspires me.  The girl is tied up in a damn harness and still starts every day with a smile. She then pees and farts, but hey - she does start with a smile!

Moving forward

Yesterday afternoon I cleaned out the dresser in monkey's nursery. She not only started to outgrow several of the newborn and smaller 0 to 3 month onesies, but it was also time to put away things we just can't use. Mainly anything with pants. I think the hardest part of the whole thing was putting away all of her little zippered footie pajamas.  I always enjoyed putting her in a new one each evening before bed. They're all just so cute and snuggly. I took a few that she's outgrown and some that are her current size, folded them up, and put them in a drawer for me to save. Part of me hopes that we may just go to the doctor on Thursday and they say congratulations her hips are now perfect. I know that won't be the case at all. At minimum we have 6 to 10 weeks with this harness. Realistically we are looking at 12 to 20 and even maybe even longer. By then All the little footie pajamas are going to be too small.

Again it's just mourning the little things. In the meantime I'm getting more confident in handling her, and we've made some big strides. She spent a good chunk of the day in the Moby wrap and even managed to figure out breast-feeding while she's in the wrap. We also got in the mail today a Boppy newborn lounger. While she doesn't love it she doesn't hate it. I'm hoping she'll warm up to it and be able to hang out in it all around the house.  Overall though she is still a mama's girl and would prefer to be held by me. I'm more than okay with that. 

Baby wearing with a pavlik harness!

Propped up in the newborn lounger

Day 2

It's amazing the difference a day makes. Now that I'm over the initial shock and sadness, we are adjusting okay! The harness sucks - no doubt about that. Monkey seems unphased by it and she is sleeping awesome. Part of me actually wonders if that hip was bothering her in some way, and now with the harness's support she feels a bit better. That may just be something I'm making up to deal with everything, but it's working! Day 2 and we are doing okay!!