13 things I’ve learned during the great shoe hunt

LEAPING RIGHT IN:
Children with cerebral palsy usually have what’s called a foot drop, where the ankles are tight and the toes/feet point downwards like a ballerina. It’s one of the first signs of a neurological disorder — and Anna’s had it since she was born.

An ankle-foot orthosis, or AFO, is a brace support with the purpose of controlling position and motion of the ankle, compensate for weakness or correct deformities. AFOs can be used to support weak limbs, or to position a limb with contracted muscles into a more normal position. You normally have to buy shoes that fit over the AFOs, although sometimes they’ll put soles directly on the braces so you don’t have to bother hunting. Because, it really is a hunt.

HERE ARE 13 THINGS I’VE LEARNED ON THE GREAT SHOE HUNT

  1. Don’t buy shoes just because they’re pretty and glittery. On the other hand, you ARE going to be looking at them a lot, so it’s be a bonus if they’re not hideous.
  2. Get rid of the insole layer that comes in the shoe. Just throw them away, or keep them if they’re fancy and made out of memory foam (like ours).
  3. Those great brands like Nike, ASICS, Skechers? Nada. Go for the cheapo ones from K-Mart or Walmart – I’ve found way better luck there, and also cheaper is sometimes better because you’ll be doing stuff to them. Like…

  4. Try snipping a few threads that hold the toe box closed, around the attached end of the tongue. If the material stretches at certain points, you can make a minor cut to provide more room.
  5. This worked for us, but try leaving the top velcro strap loose so that your child has more range of motion.
  6. LOOK FOR A WIDE TOE BOX. THE WIDER THE TOE, THE BETTER THE FIT.
  7. Also, when picking from all those cute custom designs, remember sometimes cute little faces get stretched out. Lol:20170823_132454
  8. Velcro straps are good. We ended up with ties, but velcro straps would be way easier to put on. Also, AFOs tend to be clunky to wear, so find shoes that are as light as possible.
  9. Bring your child’s AFOs with you on your Great Shoe Hunt. And if you’re bringing your child, bring lots of snacks and toys.
  10. AFOs usually come with little paddings that the therapists and I like to call potato chips. Sometimes your child won’t need them, but they seem to provide endless entertainment and are good distractions as hats.
  11. Consider putting them on your baby while she’s hanging out in the stroller, carseat, high chair, etc, so she gets used to having them on.
  12. MENTALLY PREPARE YOURSELF. I bought six different shoes to find the right one. Save all your receipts, and be prepared to return most of those shoes. It tends to be a long quest, but trust me, it’s a relief finding the right pair in the end!
  13. Best of all, I have learned how fast babies get adjusted to new things. Anna is now nearly 80% used to them, and can now furniture cruise (Kruse, get it, aha…) and cross vast bridges from coffee table to walker/chair/sofa with ease. As soon as she starts walking, they’ll be on whenever she is awake, so hoping that they’ll last us a couple years.

 

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the blame game

When I was 7 months pregnant, we moved from our rental home close to Roosevelt High School to our new condo in Salt Lake. I was packing for the move, in an uncomfortably warm home that didn’t allow any kind of AC, during the already-hot month of May. Cardboard boxes were crowding up the living room, and I had nowhere to walk, so I was stupid, bent down and tried to carry this insanely heavy box full of dishes and pots and pans. I managed to lift and move it across two feet to the door, and then put it down. I immediately got hefty round of Braxton Hicks (pseudo contractions), so I sat down and breathed through it. Then, I was fine and I kept packing.

MY BRAIN:

Maybe Anna had a stroke when I lifted that box and strained all those internal womb muscles, or whatever they’re called.

Remember when I tried all those weird things to get Anna un-breeched? Like, putting that ice pack against my stomach, since apparently babies run away from the cold and they flip over to the right position? Maybe that did it.

Or, maybe it was because I finished Insanity Asylum during the first 4 weeks of pregnancy. I didn’t know I was pregnant then, but maybe I worked out too much when she was still like, embryo-ing.

Oh, and then when she stopped moving during the last trimester. Maybe I should have called the doctor sooner, like that morning, instead of waiting until the afternoon. 

The blame game is strong in me. It’s always been, honestly – if anything bad happens, I always look at myself first to see whether it was my own fault or not, and I know it’s kind of a paranoid, pathetic, self-absorbed thing to do. I’m trying to get better about it.

But, when Anna was first diagnosed, the blame game really took over. It took steroids and turned into Blame Hulk. I pretended that it didn’t exist, that I wouldn’t have such a typical response of self-hate and guilt, but honestly, Blame Hulk kicked my butt.

Last month, one of our physical therapists casually told me, “Maybe Anna had a stroke because you didn’t take the right vitamins or didn’t have enough nutrients. Sometimes you know, it’s the environment that the baby was in.”

?!?!?!?!

That really got to me, because yes, there were a couple days I forgot to take my prenatals.  Did THAT do it?! I was an angry weeping mess, and snot-bubbled my way into an emotional brain dump to Kev. He told me not to blame myself, of course. My immediate response was: “But there’s nobody else to blame.” 

I’m not too sure where I’m going with this, except to say that I think guilt is a pretty natural response to these situations, but that doesn’t mean it’s right. It was actually one of the first things that I’d been warned about, and so I was sure I’d be exempt, since I was prepared for it. I wasn’t. When you find there’s nothing and nobody else to blame, you end up turning on yourself. (That’s actually something my mom used to say. “Don’t point your finger at people, because all the other fingers in your hand are actually pointing at yourself.” LOL, ok.)

As humans, we crave to know. We want answers, especially when we don’t understand the why’s, and the doctors tell us: “We don’t know what caused it. It could have been anything. It could be genetics.” We end up blaming ourselves, blaming someone else, or God. The point is, there’s always plenty of blame to go around, especially when you’re unhappy about something.

I can’t say that I’m 100% no longer playing the blame game, but I’m doing better. Each time that guilty thought comes into my head, it’s becoming easier to snap out of it. I tell myself, “Yeah, OK, let’s get out of here” and turn away. I force myself to do other things. I pray, work, read the Bible, play with Anna or go get Starbucks. I remind myself of all the miracles that got us here, like how every single appointment we’ve had to make for Anna, there was a cancellation and we didn’t have to wait months like everyone else. God’s sending the right people our way and we’re getting the Best Help Possible.

Going down that road of “who’s fault is it?” is a guaranteed way to be miserable, and we decided in the beginning of all this that we’re not going to raise Anna in a miserable home. For her sake, I’m learning to fight it off, and we’re both getting stronger.

Genetic testing, here we go

Anna Lily had an MRI back in February and she was diagnosed with mild cerebral palsy, caused by periventricular leukomalacia (basically, brain scarring). Although she’s making great progress through weekly therapy, we’ve just started the process of genetic testing under our doctors’ recommendations because she continues to have hypotonia (very low muscle tone) and is very “loose” when picked up. I feel it’s our responsibility as Anna’s parents to find out what we can for her, for her future. We’re taking it one step at a time, and she is such a tough and happy trooper throughout it all. 

6:25 a.m.: The day begins. Our room and Anna’s room are right next to each other, so I can hear Anna giggling by herself to start the morning. She’s started pulling herself up to stand, and her new thing is batting at the owl mobile above her head, which she finds hilarious. Her goal is to eventually pull it down and cause ultimate destruction.

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6:45 a.m.:  Kev goes into the nursery, and then to the kitchen to prep breakfast for all of us. (He is da best.) Anna’s Breakfast: Slices of organic raisin bread, peach yogurt and oatmeal, boiled egg and some turkey meat, along with prune juice to her milk to help things get going. We adults: two slices of butter-slathered raisin bread and cups of very, very strong coffee.

7:50 a.m.: Kev goes to work, Anna and I head to doctor’s. We’re starting Anna’s genetic testing today with a urine sample. I have no clue what to expect, except that there’s a bag involved.

7:52 a.m.: Two minutes on the unusually packed road. An ambulance zoom by on the freeway, and there’s a daring, law-breaking SUV that chases after the ambulance on the cleared road. People honk at him, I’m a little bit in awe. Anna’s going “GOGOGOGOGOGO!” in the car seat, while simultaneously pointing outside the window going, “WHOSDAT?!”

8:30 a.m.: We park at Queen’s, and there’s no wait at the doctor’s office, hurrah! Our PCP shows us this. It sticks to Anna, and the diaper goes over it:

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9 a.m. – 9:40 a.m. : NO PEE IN SIGHT. Chug, chug, chug! (BTW, other moms, this Munchkin straw cup is the best thing. It has a little weight inside, which lets your baby drink from any angle.)

9:40 a.m.: STILL NO PEE IN SIGHT. We walk around the hospital in the stroller, and I buy a giant brownie corner piece and a lifeless latte. 😦

9:47 a.m.: PEE IN SIGHT! Joel very gently peels the bag off Anna while she makes how-dare-you faces. We get orders for a blood draw that we can head into the lab “anytime,” and I make the gut decision to go right now, while Anna is in a surprisingly awake and good mood.

9:50 a.m.: Anna falls asleep in the car. We drive to Kapi’olani Medical Center, which is 6 minutes away. We head to the basement of the main hospital, where the clinical labs are, and as soon as we step off the elevator onto the floor, there is crying and screaming! Babies, children, everywhere, unhappy!

10:15 a.m.: We’re called in. Lab Lady is so stressed out, and I’m nervous, and blather on: “You guys are busy! Is it like this every day?” (“Yes!”) “So many crying babies, it must be so stressful.” (“Yup, I gotta remember to take my vitamins.”) “Yes, take care of yourself! Your name is Maria? Mine too!” She dons a mask, eye goggles (in case of blood spray?!), gloves and needle to poke Anna’s finger. Just at that moment, Anna’s eyes fly open and she is staring up at Lab Lady, who squeezes drops of blood from Anna’s finger, enough to fill up two vials. Gross. But Anna’s still sleepy, so she doesn’t cry until the very end. And, it’s all done.

10:30 a.m.: GUYS, Lab Lady gives us extra validation parking tickets! #freeparkingftw #itsthelittlethings

11 a.m.: We get home. Anna lunches and crashes out for a 2 hour nap. I devour brownie, crust and all, and save just a little bit for Kevin.

Next up: It’s a busy week, guys. Tomorrow is her eye exam and an initial chiropractor appointment. Thursday is her kidney ultrasound. Sending over of good thoughts, greatly appreciated. 🙂

this article!

Exactly what I needed to read today!

“Don’t neglect discipline. Understand that your disabled child needs discipline just as much as healthy children do. Set clear rules and boundaries that your child can realistically be expected to follow, and follow up with praise for good behavior and consequences for bad behavior. Intervene whenever your child has a tantrum. Remember that, while your child is limited in some ways by disability, he or she can still grow and mature in many other ways.

See abilities instead of disabilities. Shift your focus from what your child can’t do to all that he or she can do. Assess your child’s unique gifts and offer him or her appropriate enrichment activities. Express some progress in various areas as your child matures, and celebrate whenever your child masters new skills. Give your child opportunities to act as a positive role model for younger children who suffer from the same or a similar disability.

Let go of what you had planned so you can embrace what God has planned. Face the fact that your life hasn’t worked out the way you’d hoped, and be willing to let go of unrealistic plans for your future. But know that God will bring good out of even the worst situations if you trust Him. Ask Him to reveal His plans to you. Accept your child for who he or she is – rather than who you expected him to be – and ask God to help you discover all that’s good about your child.

Go ahead and grieve. Don’t be afraid to grieve for the dreams that have died in your life because of your child’s disability. Ask God to help you be aware of His presence with you as you go through the stages of grief – denial, anxiety, depression, anger and guilt. Pray about your concerns often. Get regular physical exercise to reduce your stress. Seek help from a therapist and medications to deal with depression if necessary. Surround yourself with friends who will listen to and support you. Ask God to show you how to transform your anger into constructive action. Remember that God’s grace is always available to you, in every circumstance.”

Source: http://www.crosswalk.com/family/parenting/find-joy-while-parenting-a-child-with-disabilities-1407557.html

our pediatrician is awesome

“Don’t leave it up to [the insurance company] to do their job. I’m not saying they’re the bad guys here, but remember, it’s actually NOT in their best services for you to get services like physical, occupational or speech therapy. There are many cases where the orders for therapy get lost in the mix or get denied, and parents just don’t hear back for months. YOU as the parent end up having to do the legwork. Call, follow up, check back with us if you don’t hear back, and I’ll fight for you to get the best care for Anna, whatever it takes, even if it means talking to the president of your [insurance company]!”