It's been a long year

[ldeverna]

Well, it's been almost a year since Harper had primary surgery and I'm starting to lose hope that she will make the recovery that we were hoping she'd make. She has regained alot of shoulder function but still has little to no bicep. She's not even close to hand to mouth. The biggest area of improvement would have to be how much she incorporates her arm in everything she does without prompting. That amazes me. She's 17 months now and still is not pulling up, cruising or walking. She'll stand if you put her at the table and there is something of interest there that she wants but for the most part she wants nothing to do with it. I'm starting to worry. We go back to see Dr. Kozin on 4/9 so I guess we'll see what he says.
I'm sorry to be such a downer. I just feel so sad. Trying to stay upbeat and optimistic has taken a toll on me, I guess. I'm tired.
Next week is our deposition so that is just adding to my stress.
If you've gotten this far, thanks for listening. I know I haven't been around in awhile but it's nice to know there is a place to come where people will understand what you are going thru.

~Lisa
Mom to Harper, LOBPI, 17 months

[brookepoague]

I know how you feel and there are alot of people on here who do as well. My son is 10 months and we are frustrated to. It's been 7 months since his surgery. Just hang in there and keep up the therapy. Good luck with your appointment in a few weeks. Maybe that will answer some questions.

Depositions can be stressful as well. I'm an attorney and I've never been deposed but I suspect we will have them as well. Just remember that they are trying to push your buttons and don't let them.

[claudia]

I wish I could say WHEN Juliana started gain movement in her arm. But I can't. Honestly, much of the first 3 years of Juliana's life are a blur. Surgeries, therapies, depos...handling the three big sibs...I don't remember a whole lot. I do know that somewhere along the way she seemed to gain function. Maybe she just learned how to compensate "better." She still doesn't have "hand to mouth"...but, she gets the food there! Her biceps are still so weak, but she does what she wants to.

What I guess I'm trying to say is, stop looking. We look so closely at those trees, that we really miss the beauty of the forest. I never stopped working with Juliana. Everything we did was therapy--every toy, every trip to a playground...EVERYTHING. I don't think it was healthy!

This is a tough time. GIVE YOURSELF A BREAK!! Get a massage, see if you can take a day off and do something really different (go to a museum, have a great lunch...)

Eight years later, I still worry. But I worry about all of my kids (heck, one of them is 15!!--talk about worry!) and I want only the best for them. I am learning to back off a little. I wish I had learned that sooner.

Last spring, Dr. Gilbert spoke at a conference in Cinci. One of the things he noted was how long the function seems to take to come back. That he was seeing improvements in elbow and hand function years after surgery. So don't give up the ship! Juliana started to play piano (with big sis Izzy as her teacher) and it has helped her hand function. Some days are good and some are still really bad.

Really, take some time for you.

good luck,
claudia

[Jeannette Curran]

I know it has to be so painful to watch her struggle. She will walk in her own time. She will find a way to overcome the obstacles. If you haven't had a PT eval maybe that could help. I've heard it is good to do that every 3 months or so.

It is hard too that you have to keep bringing up all those painful memories for the depostion. Good luck and I hope for the best for your daughter. Maybe you can get away for the nite and destress at a spa or whatever you can do to get a break. The most relaxing thing I have done this year was to get a facial. We are going to take a trip because it has been a long and stressful year as well and just need to unwind . Jill is 13 months and between bpi and asthma it has been a long year.

Best of luck. Hang in there.

[cassidysmom]

Hi Lisa,

I guess that I just wanted to reply to you in hopes of maybe offering some encouragement....Cassidy is a year post primary and it sounds as if her and Harper are about parallel as far as recovery....I was definatly hoping that Cassidy would regain more bicep....
As far as walking Cassidy didn't walk until she was 18 months and it was all of a sudden..she wasn't pulling up or cruising really and just one day she was standing at the coffee table and just walked across the room....I also posted here asking if any other parent shad children that walked late and it seemed to be fairly common. I know how discouraging it can be though...especially when it comes to strangers who put their two cents in and don't know the history...I had people constantly asking me why Cass wasn't walking yet....but they do it in their own time...One thing that Cassidy's PT suggested I do with her to strengthen her quads was to have her sit on my legs and say "123 up" "123 down" and guide her up and down accordingly...at first I was doing most of the work but eventually it became a game and Cass knew what to do and didn't realize she was doing therapy...it helped her a lot as her quads were quite under developed due to bum scooting....she had wicked hamstrings though
anyway I hope that this helps you even a little...hang in there....
Dawn, Mom to Cassidy 23 months ROBPI

[ldeverna]

Thank you all for your encouraging words. It really did help to hear them.
Dawn, thank you for you story. That gives me a lot of hope.
Harper pulled up (several times) in her crib for the first time yesterday. I think I almost gave her a heart attack the first time because I started screaming and jumping around

[Mica]

Aria started walking in much the same manner as Cassidy - one day she wasn't even trying to take steps, then the next day she was walking across the room. I really thought I must be hallucinating!

She was 18 months old when she first started walking.