Friday, June 28, 2013

Taking Zoë to Primary Children's



I recently alluded to the fact that we made a visit to Primary Children's Hospital in Salt Lake City with Zoë.

And it's true...we did. It wasn't easy to go back there. We've popped in several times over the last five years to drop donations off at the front desk. There was one Christmas we took pizza and salad to the NICU and PICU for all the doctors, nurses, and families.

But to go back there again with your daughter, your living daughter you never thought you'd have after losing your first, it was a bitter pill to swallow.

Luckily, this time it wasn't because of an emergency. Vic and I held hands and walked in with our heads held high and our chests out, as if we were preparing to bravely face our doom. Walk into a wall of fire without shame and come out the other side alive.

I won't lie, I saw Vic shed a tear or two. There was a volunteer in the lobby playing beautiful music on her violin. The women at the front desk were so helpful and kind. It is such a sacred place for us. I would be fooling you if I didn't tell you that I expected every other doctor or nurse whom we passed in the hallway to stop and say, "Oh my goodness. It's Lucy's mom and dad." Because that is where our world ended. It is where our angel took her last breath. And it feels strange to walk into that place and not be recognized as an "angel mom". It's like veteran soldiers visiting a war monument and no one knowing or acknowledging them.

But regardless, the reason we were there was to have Zoë's hips x-rayed. I mentioned to the doc at her one year appointment that she isn't crawling. She isn't standing. She isn't cruising. She has never pulled herself to standing position. But she does scoot! She is a scooting machine. Vic calls her a little carpet monkey.

Early intervention came and did an assessment on her a few weeks ago. She is off the charts on her verbal, emotional, social, and fine motor skills. But its her gross motor where the problem lies. She favors her left side and doesn't bear her own weight. Thus, the x-ray to determine what is going on before we start physical therapy next week. (Finally! I've been waiting for July 3 for almost 3 weeks.)

So what did they find in the xray? No hip displacia. Which is good. But the doctor was concerned about her right hip. They told me something about spacicity and casually threw out the chance that she could have mild CP.

"CP? What is CP?" I say.

"Cerebral Palsy," they say.

"WHAT?"

I tried to keep it together over the phone when they told me this. My head started spinning. What about dance? Gymnastics? Running? How will she keep up with her brother on his bike?

And then the doctor says, "BUT, it could also just be the way she was positioned on the table when they took the xray. It might be nothing."

Ummm....ok.

So the bottom line is this. We will know more next week when the PT comes. In the meantime, I've been working with her on standing and crawling. (I'm having more success with standing than I am with crawling.)

A close family friend, who happens to be a radiologist, is giving me a second opinion TODAY..so I'm awaiting that call.

Deep in my gut I truly feel that everything is going to be fine. She might not walk until she is 2, but I think she is going to be fine. That is what my gut is telling me. She is mobile, she is bright, she is beautiful.

I think we will see a lot of progress with the physical therapy over the next year.

And you know what? After having the worst thing possible happen to you, (your child dying in your arms), the thought of Zoë having a limp her whole life, or never being able to run fast or jump high is something I can deal with. And boy, does it give me a greater admiration for mothers of special needs children--CP, muscular dystrophy, limb differences, you name it.

I will let you know what how the second opinion goes and our first visit with the physical therapist.

Sweet little, Zoë. I love you so!


15 comments:

  1. Hey Molly-- I have a son with CP. He's 3 and of course he's delightful. But we knew shortly after his birth that he would have it. Both his legs and right arm are affected. But not his intelligence. I'd love to talk more about it if you want any info. You can message me on facebook whenever you want.

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    1. Hi Jodi! Thank you. I feel deep down that she is going to be fine. She uses both her arms and hands very well and you'd never be able to tell from looking at her that she favors one leg over the other. But at this point it is a waiting game! I will for sure want to talk to you if we get a firm diagnosis. God bless your beautiful boy!

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  2. Hello dear. First, wow...what a shocker to suddenly hear those words CP out the blue. As you may or may not know CP is one of those huge umbrella terms that cover a WIDE range of people and their varying abilities/disabilities. So it would seem to me (a non-Doctor) that IF there was some sort of CP it is very, very, very mild. I have to say I'm a bit surprised that Dr. threw that out so casually in the first place when, as he said, it could be nothing. My advice to Mr. Doctor is "don't throw out freaky medical diagnosis when you don't KNOW FOR SURE if that's what's going on...because you just gave mommy a heart attack for no good reason." Honestly, that was a bone-headed move on his part.

    Second, as someone who knows a little about kids who don't yet walk I think your gut here is spot on. We have always been told Lamp will walk. This is a girl with 2 extremely short femurs, 2 different lengths of legs, a missing fibula AND (this is the important part for you) NO hip joints. You know like a ball and socket? She doesn't have them. I didn't know that until she was 19 months old and I remember the Dr. throwing that out like it was NBD because she didn't know that I didn't know that. I was stunned to learn something new about her anatomy at 19 months. So I thought for sure she wouldn't walk after that. But turns out you don't need hip joints and sockets to walk. Who knew? So yes, I do expect our little Lamp to walk one day (lately she's made some great strides) but I've learned to also let go of any time frame for when this will happen.

    Again, I'm no Dr. but I think Zoe will walk. If Lamp can walk, Zoe can walk. Let me know if you want to talk over any more details, etc. Love to you!

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    1. Miggs--

      I was so hoping you'd comment on this. I feel the same as you--not cool to throw that term around and then hit me with a "it might not be anything."

      So amazing about Lamp! I mean...wow. The whole thing.

      My sister has a friend in St. Louis who was also told her son may have some CP, and he is now fine after therapy. Supposedly, doctors are pretty guilty of throwing this term around too freely.

      I have two four year old crawling on me as I type this. Better go. You and Lamp are the meaning in my life...you're the inspiration.

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  3. Hoping those mama instincts are right. But either way, she is perfect!

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  4. Molly--- I am Mollie-- great name!

    Anyway. I have to tell you I know a little bit about what that feels like. My son is now 15 and we found out that he had juvenile rheumatiod arthritis at age 13, after YEARS of seeing every specialist under the sun. His first symptom--- limping when he was running the bases playing t-ball at around age 3.

    My point is- so many different specialists woudl non-chalantly say things that just struck me through the heart, "oh, this looks like muscular dystrophy," "oh, this looks like CP," "oh this looks like hip dysplasia." All depending on what specialty we were seeing that day. I wanted to say, this is MY precious baby that you are talking about like it is nothing.

    OK that was rambling. But I just want you to know that I know that shock feeling when something is said about YOUR child. And our son is also a child that came after a loss.

    Your babies are all beautiful, but Zoe's smile is just stunning!

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  5. My sister's son has a touch of CP but you wouldn't know it. He leads a very normal life--he just doesn't like to participate in a lot of sporting activities because it is hard for him. However, my sister has him involved in sporting activities, and he does just fine! I hope that brings you some peace! PS--Please tell Vic thank you for his kind response to my Lucy birthday email. When I read it I was overcome with emotion and couldn't respond at that moment and then forgot. Still praying for you guys and love you!! Jennifer

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  6. Molly... you described our Mya to a tee. At 15 months she still wasn't crawling, standing... just scooting on her rear EVERYWHERE and fast! We would change her diaper and she would just lay on her back till you took her hands to sit her up. She would be in the same position in her crib every morning, her back, the way she was put into bed. She rolled over at the normal time but at about 8 months we noticed she stopped and would just lay there waiting for us to pick her up. Doctors dropped same bomb~ CP but once she was evaluated they said she had a fear of movement disorder, Kinesiophobia, which she could, with therapy, recover from. She started therapy and relearned to roll, then crawl, and eventually walk. She is 21 months now and perfectly fine! Well... almost. We call her Mya the Crya, cause she does a lot of that!! Hopefully you will find Zoe having the same... scooting on rear is a classic symptom for Kinesiophopia. I will pray for your little Zoe!

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  7. Molly, I grew up in the ward you reside in now and when my mom told me about your Lucy, I started reading your blog. With that said, my second daughter was also a bum scooter. At 18 months dr's were throwing words like autistic and Down's syndrome at me. I just felt they were too quick to diagnois, so we went for second opinions. We went to specialists who finally determined she had hypotonia (lack of leg muscle). My husband is a PT but couldn't get her to crawl or walk. Finally, after 3 months on pediatric PT, she mastered crawling and walking and has had no problem with development. She is a very active and healthy 4 year old. I feel practitioners are too focused on making sure the child meets certain milestones at exact points without taking in to account each child is so different in their development. I'm sure your little one will be fine. Good luck. And trust you mommy instincts.

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  8. I have followed this and the "a good grief" for some time and this post just hit home.. we lost our 3rd son to a heart defect that was not diagnosed in utero and when we returned to the childrens hospital about 2 years later for a minor injury for my 2nd son I found myself in the exact spot where I called my mother to tell her we were now speaking in terms of days and hours he would be with us..(the bank of pay phones off of the er, I hadn't realized it was by the er back when I was using them) I knew it would be hard going back there, but I rationalized it the er had a different entrance it was sort of an annex and the main hosp (where we always went in and out of) was on the other side of the building.. when the adrenaline of getting my son in and settled and the stitches started it all came to me where I was and I broke down a bit.. so I get it!!! thank you for being so brave and your strength and willingness to share your journey.. it has been 13 years for me and we are good, happy and living our lives to the fullest BUT there are still things that "get to me" and probably ALWAYS will... thank you and I pray Zoe will be just fine, thanks again!

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  9. Don't you love how doctors do that..."It could be some horrible. Or it could be nothing. We'll let you know." Thanks. Thanks a lot. Why can't they just say, "You know. We just aren't sure now. But when we know more we will let you know." Sigh. I hope it was just the way she was positioned.

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  10. I have 5 kids and two didn't walk or stand or bear weight until later, one at 19 months and one at 21 months. They were tested for CP and other things and came out just fine! I pray it's the same for you!

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  11. I work with preschoolers, many who have CP. Some can walk, some cant, some can talk, some can't. Some can run and feed themselves but have a hard time learning while others (like the AMAZING little guy I provide respite for)can't walk, feed himself, sit up, brush his teeth or do anything himself BUT he attends a regular school and is in a regular 2nd grade class with "normal" children (he goes to school in his power chair and has an aide that helps him with physical activities and writing). He can read beautifully and he is on par or above all of the kids in his class in all subjects. My point is that CP is a VERY broad term that seems to be used to describe many types of differences when the DRs don't have a specific answer. It sounds like your Zoe is a smartie, maybe she is just not ready to walk yet. I will pray for good news

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  12. My grandson (he and his parents live with me) did not walk until he was 14 months old (he's 3 now). He was content to sit and play and only learned to crawl at about one year old. He was just a late bloomer I guess. It was worrisome for my kids because my son walked at 9 months and his wife walked at 8 months. But Braxton is just fine and did things on his own timeframe (like getting his first tooth at one, instead of 6 months). I pray for your Zoe that things go well in PT and all is well with her. Sometimes doctors give us the worst case senario but then things turn out much better than they had hoped. Take care...sending good thoughts your way.

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  13. Wow. As wonderful as Primary Children's is, that picture made me cringe a little. To see your beautiful, red-haired daughter up on that table... :(
    She sure seemed to get around great when I saw her last. I believe and I'm praying that her crawling/walking delay is nothing to do with CP (can't believe he just threw it out there like that!)
    She is bright. She is gorgeous.
    Love you guys.

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