14.8.13

I DIDN'T KNOW LAUREN PLAYS BASEBALL

There are some days where I get so frustrated. Not with Lauren, but with the medical microscope that she seems to be under. I appreciate each and every doctor's visits. I love the group of medical specialists who work so well with her. But I hate the testing.

Having been on ECMO, Lauren will be tested for long-term issues that may be attributed to the life saving machine that she relied on for three and a half frightening days. While this machine certainly saved her life, it also posed a huge risk to her health, her brain, her physical and mental ability, and today we found out that it continues to pose a threat to her. When Lauren was put onto ECMO, we had a basic understanding of some of the complications that could some with it such as seizures, stroke, embolism, or mental and/or physical impairment. We breathed a huge sigh of relief when they removed her from the machine because, as much as we relied on it, it repulsed me for the things that it could be doing to our little girl. Today I found out that there are still issues that may arise from her time on ECMO.

Lauren went through a three hour assessment. The first portion was with a nurse and a pediatrician. They had read much of her chart (an impressive feat in and of itself) and she got to play in a room filled with toys and people who were focused on her while we chatted about how she has been doing. She has her "toddler-doms" that showed such as her picky eating (which is similar to many other tiny people) or her fascination with anything and everything that she can get her hands on. Otherwise, they were quite happy with how she is doing for all that she has been through. It was generally encouraging and confirmed my feelings about Lauren's recovery. Lauren had a blast and was even completely still while the doctor looked in her ears and eyes. Normally that takes a full body tackle from mom to achieve.

One concern that I have with Lauren is her speech. At 18 months she says hi (at appropriate times and waves), no (also at frustratingly appropriate times), wow (usually at butterflies or some other new or exciting thing, usually accompanied by pointing) and mom (when she's sobbing on my shoulder). Other than that, she doesn't talk. I know that Lauren is aware of conversation as she is constantly babbling, using intonation, dramatic hand gestures and different volumes. She responds to simple commands and spends much of her time looking at books, "helping" me in the kitchen, playing outside or in the living room or walking with us outside. That is her world and those are the things she knows. Apparently 15% of children who have been on ECMO having future hearing loss  so she will be tested for that in the next while as that might impact her speech development.

The second part of the tests was a physical assessment with fine motor and gross motor skills and a speech assessment. This is where I lost it... because she did. On Monday night, Lauren was up most of the night with a rough cold. It is her first cold ever and she her nose was totally plugged, impeding her ability to suck her fingers (which she does to fall asleep or comfort herself) and she was losing it. I ended up sleeping in the guest bedroom with her and, as precious as it was going to be in my mind, reality was not like that. Moms know what the night was really like. Anyways, so today she is still tired and a little sick and this 90 minute assessment was scheduled to start at noon... right around the same time as Lauren's nap. That was strike one.

Those people who have seen Lauren in her natural habitat have used words like "feisty," "determined" and "non-stop" to describe her behaviour. She is delightful, yes, but she is also ridiculously active. She doesn't sit. She's 18 months old and curious about everything in her world. Strike two was that this whole test had to be done with Lauren sitting on my lap. Lauren doesn't do laps. If she is tired, yes, if she is not tired, forget it. Much of Lauren's focus was on trying to wriggle and flail and scream herself out of my grasp, rather than focusing on the "test." I understand standardization in tests, but is working on the floor really such a bad thing? Lauren would have been much more agreeable and focused on what she was supposed to be doing.

And stop taking everything away from her! Strike three. After enticing her to look at an object and interact with it in some way, suddenly it was taken away. I'm not 18 months and I would have been mad too.

Anyway, so here is how the test went. Really great at first. Lauren was rocking the show and then she got mad. Mad that she was on a lap and couldn't get down. Mad that she was tired and wasn't in bed. Mad that everything was being taken away. Mad, mad, mad. And as her stress went up, so did mine. I don't care if she can't do everything, I don't expect her to, I just want the test to be a fair reflection of what she is able to do. It made me mad because I've worked so hard with her, going to all these appointments, listening to all of the ways that I can help her, doing every one of them with her and then not actually giving her the opportunity to show what she can do. ARGH!


When the speech and language part came around, Lauren was done. D-O-N-E. Done. There was a book and Lauren had to point to certain pictures. "Lauren, where's the ball?" Oh, you mean the basketball that looks nothing like any ball she's ever seen? "Lauren, where's the cookie?" I think Lauren has had three cookies in her entire life and they were never full cookies so they never looked like a circle. "Lauren, where's the clock?" Seriously. We don't even own a clock! I don't know if she's ever seen a clock in her entire life! It amazed me how situationally inappropriate much of the testing was in this area. What are the words that I expect Lauren to know... juice, water, cracker, food, bath, toy, duck, dog, shovel, spoon, fork, phone, bed, blanket, and people's names. Things that she actually comes into contact with. For instance, the fan that we have in the living room is tall, narrow and white. She knows that it blows air and she likes to give it hugs (which is weird but endearing). I wouldn't expect her to see a picture of an old circular fan and know what it is. It is nothing like anything she has ever experienced. She definitely wouldn't think she should hug it (which is probably a good thing as that type of fan isn't as friendly). So Lauren bombed the speech and language part.

And then at the end, as she was heading out of the door she waved goodbye. That's the kicker for me. No, she doesn't say much, and she uses her gestures to communicate while she babbles away but she knows to wave at anyone she hears say "goodbye" or "see you later" or "talk to you later" or "I'll be back" because she understands the language that means something in her life. So, whatever the paper says when we get the results of this testing, I know that Lauren is rocking the show. She might not point out which one of four items is a ball because she just wants to pick them all up and play. But when the pediatrician told her to sit down on the exam table, Lauren plopped her little butt right down and smiled at her. That's my girl.

I was so upset after Lauren's testing because it momentarily changed my perspective. My day to day perspective is one of her healing and the miracles that God has given to us. Today made me focus on possible areas of deficiency, as opposed to areas of success. And that is not a place I want to live in. That place is filled with uncertainty, fear, doubt, worry and anxiety. My depression lives there too. To focus on the miracles, big ones and the little things to be thankful for day by day, helps me to live in a place where I embrace God's promise of healing and life. He promised healing for Lauren and his promises don't change, nor are there conditions. She will continue to be healed and she will be special because of the abilities that she does have, not the ones that she has yet to develop. And give the girl some time. Wait until she's had a whole year of a healthy heart instead of just a few months. Watch out, world!



4 comments:

  1. Hi Amanda.

    You don't know me, but I go to your parents' church. Two of my daughters have gone/are going through speech and I share your frustration! I remember the SLP showing my 4 year old a playground picture and asking her "what can you serve". Or asking her to ID an iron - something she had definitely never seen.

    You and sweet Lauren will be ok! Hang on.

    Phyllis Schouten

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  2. Hi, it's Jacqueline Donkersloot, remember when we met that one time? I was just ranting to my friends about how ridiculous the charts are for language development. I know almost no kids who hit those landmarks, and I've been paying attention. I give you permission to compare Lauren to my kids instead. My 17-month-old daughter can say "uh-oh" when she purposely throws something onto the floor, "thank-you" (taytoo), and she can follow me around screaming "Mama" all day long. But that's it. I'm very glad we don't have to get her tested; it would be embarrassing. I'm confident that she'll get there eventually, though, because she makes all the right sounds, just in the wrong order, and she gestures angrily and wildly until we guess what she wants. Argh.

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  3. Oh Amanda - I'm angry with you about the kind of testing Lauren went through. I think it's time they update things and make it more true to the lives of 18 month year olds. I hope you quickly found the ability to focus on the miracles and are doing better. You know what the paper will say when you get it, so I hope it doesn't through you for another loop. Having followed Lauren's journey from the beginning, I think she is rocking the show too. I'm sure things will be different in another year. You go Lauren!

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  4. Hi, I'm Shirley-Anne :) We've never met, but I've been following your blog since a friend of mine linked to it on Facebook 5 months ago. I went back and read the whole thing - lots of ugly crying... You and your husband are amazing and strong and I'm so glad that Lauren's story is one of triumph!

    This post really resonated with me. I totally understand. My eldest daughter was delayed in gross motor skills. She didn't walk until right before her second birthday. We started with assessment and then physio when she was 17 months (and not really even crawling yet). I still remember how panicked I was after that first assessment. Looking back now it seems silly, but then I'm a lot wiser now. One of the questions they asked me was if she could use a tool to reach an object out of reach. I remember asking for an example and the lady said, "Can she use a stick to get a toy out from under the couch?" No! "Can she upend a empty waterbottle to retrieve a cheerio inside?" No! I panicked. She was behind! Really, though. Why on earth would I give my daughter a stick to play with? When would she have even encountered an empty waterbottle with a cheerio in it?! In the end she walked just fine and now she runs, jumps and gets down with her bad self when she hears music.

    This is getting super long, but I just wanted to let you know that some of these tests seem to be old and outdated or not built for an 18 month old. I'm glad you aren't focussed on the negative. What Lauren has accomplished is amazing!

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