We have to have faith that the "robot" Medicaid just supplied for you is going to support you in going to school and having a better experience.
Lil often misses school even though she loves it. One of our frustrations is that people often think that she is trying to get out of school- I could see that for some kids but my kids actually love school. In reality, she pushes herself too hard to go to school and some days we have to deal with the after school meltdown because she is in so much pain when she gets home. Her teachers know this, her immediate family knows this, her Nanny knows this.... The robot will help by allowing her to engage in school even on those days that she cannot go. Her teachers tell us that she is so far ahead academically that they are more concerned about her social interactions. First of all, being ahead when you have only had about a half a year of school in your whole life is pretty phenomenal. Her school is out of this world. (See below for the name.) However, with the robot she will be able to engage in lessons and social situations like lunch and circle.
We have to have faith that Medicaid is going to come through.
My frustration with Medicaid goes on however. Lil falls into a grey area. She does not qualify for nursing care so we do not get nursing at home. However, she often needs at home care so that I can work. This means we need someone to come to the house and take care of her. She cannot attend a day care due to germs and her compromised immune system. Also, the days she does not go to school, she is in pain. Daycare would not be appropriate. The other frustration is that no one can explain the pain but I digress. So we have Julie, the best Nanny on the planet. When I asked Medicaid (after thanking them profusely for the robot) who was supposed to stay home with her when she uses it they did not have an answer. That is my problem. We are still paying out so much money it is almost not worth it for me to work. It just simply costs so much money to care for a complex kid. There are costs you do not even think about. Last year a very good friend of mine raised money and bought us a case of the special band-aids we need for Lil. Last Christmas, a friend sent us a "gift" to help out with the holiday. Accepting these things is never easy. Someday, I will give back in a real way to this community. I would love to say 'when this is all over' but the reality is that this will never be all over. I do have to say... the robot is so cool! And we are so grateful.
We have to have faith that hippo therapy is going to be beneficial for Lil and so far it has been.
You may remember that when we were evaluated for physical therapy at AI, it did not exactly go well. Julie and I were pretty frustrated. We were frustrated that they did not see her pain and her needs, that they did not tell us their goals and that they said she met her goals after just one session but our goals for her were not met. This is just our experience. However, after being on the wait list for awhile, we got the call that Lil had the chance for hippo therapy. This is Occupational Therapy done on a horse. The evaluation was so thorough, the therapist far exceeds our expectations and Lil is just simply in love. Today she was counting the days until she goes back. The therapist set goals for Lil that make sense for her physically and emotionally. As with Lil, even this amazing experience comes with its downfalls. Every time she comes home from her sessions, she is in severe pain. I spoke to the therapist and of course they had no idea she was struggling because she "looks so normal". Man, this kid needs to learn poker. But she is going to make some adjustments so fingers crossed for the future.
We have to have faith that the NIH is going to come through with some answers.
If you remember from my last post, they told us they found a gene variant in Lil that could show she has a brand new, undiscovered disease. To find out, they needed to test the twins. We were supposed to hear from them in January or February and did not. I reached out yesterday and am hoping to hear back. With them, you just never know when or what you will hear. I have to say though, they make that clear from the beginning.
Lil experienced her favorite holiday recently... Easter. What makes this her favorite? I have no idea! This kid blows my mind every day. We also celebrated the wedding of two of our favorite people. My little girl is growing up so quickly. She is becoming her own person and I see new, beautiful facets of her inner personality every single day. It is such a gift as a mother to watch a girl grow into a woman. My son is transforming before my eyes into this little man who who is a voracious learner, a very good friend and a leader in our family. I have to fight the twins to stop reading at night. I would say those things and many more make me a blessed person.
Most people say, "At least I have my health." Well, we cannot say that but we do have each other. There are even more changes on the horizon for us as a family. We are ready to embrace them! Stay tuned for details. One thing you can say for this life, it is always full of excitement.
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