Today's Topic:
Show how tube feeders can do what they love to do. Share what obstacles you or your child have overcome!
Jillian can do ANYTHING she wants to... well except eat orally safely, but anything else she puts her mind to she does.
She is a very determined little girl. She is a fighter. Imagine a little who did not have enough energy to eat but would still try anyhow. Imagine how strong you must be for food to make you sick but you are still willing to try it. Imagine going from the 0.00 percentile to the 85th on the weight for height chart. She is an overcomer!
One obstacle that she has been challenged with so far is not having a label. In the medical community labels are key. When you have a label you fit into a track of treatment (most of the time). Jillian's labels are vague. Her main diagnoses is still reflux. I have had reflux in my life. I puked most of my pregnancy. I have never seen reflux that looks like Jillian and I work in a daycare. There are still a lot of questions with exactly what is going on. She will be admitted again in March for more testing. The biggest fear of tests is that a result will come out contrary to what we see everyday and thus doctors don't treat her for what we see but what a short snip-it of time showed. We are praying for the tests to come back and confirm the gastric motility disorder. That would make life with medical professionals easier, it would make getting insurance to pay for things easier, it would fill in a part to the puzzle. Please join us in praying that this test comes back to confirm the gastric motility problem. The trouble with the test is that it is used as the gold standard however I know of kids who have the test come back "within normal limits" but, like Jilli, clinically they show all the symptoms.
We say that we are raising a fighter. We are raising a strong willed little girl. I would not stand it her way. She is getting to be a very independent girl, and while some days right now that can be a challenge, she is not going to let the norm hold her back. She may only by 13 months old but that girl is going places and is going to do big things. You don't fight so hard for your life for nothing. She is an amazing little girl. I am so proud of her. I am blessed that God chose me to be her mom.
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| This is her, "you are not doing what I want" look |
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| Look how tiny she was. She was in 3 month cloths until 6 months old |
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| Ohm I puked... again |
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| Look how nicely the feeding tube is secured to her face.... |
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| Well she woke up and decided she no longer wanted it in her nose. She was so proud of herself |
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| She likes to help put things together... even if they are bigger then her |
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| She could blast off to space |
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| Yea... she knows she is not suppose to stick her arm under the TV stand and pull out wires, but it is what she really wanted to do that day. New wires were run that she can't get out. |
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| She gets into parts of our house I would not imagine because she loves to explore, we just have to set limits for safe exploring |
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| This is the "I'm MAD" face |
Today we dressed in our Briggs and Al's Run and Walk shirts from 2013. We were privileged to get to run and walk for Children's Hospital of Wisconsin. We will be participating in the run/walk again this year in September. We would love to have you join our team. Contact us for more info. We are so privileged to be a part of Team Jilli.
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