Physical therapy when she got home was not her favorite but she recognized the value in it. She had an amazing therapist that kept her going even when it was hard. She was released from therapy before Christmas because we had reached the limit of therapy the insurance would cover. She has come such a long way since this summer and we are so proud of her. The extreme pain she was experiencing from the tumors by her heart and lung is pretty much gone. She still has occasional days that she gets some sharp pains but the doctors said that would be a normal thing for her because of the nerves that were involved in the surgery.
Another challenge Ricki has faced after surgery is the adjustment to her medications. She was on a great deal before the surgery and they had been trying different things to manage her pain and then after the surgery it has been a challenge to find the right balance for her.
With the surgery we got off our schedule of Botox treatments that seemed to be helping Ricki's migraines. They seemed to be getting worse with each month and we were finally able to get her in again for a treatment the end of January. It took almost 3 treatments before we saw the improvements so I anticipate it will take a couple more to get her back on top of the migraines again.
In the meantime we try to manage them at home. She had a really tough week not only with migraines but pain in her back and legs. We knew we could at least get a migraine cocktail to break this cycle of migraines. We normally go into the ER but decided we would try insta-care instead. Instead of doing it through an IV they give shots. They gave Ricki 2 of the 3 shots. They had her leaning up against the bed. She passed out and I was across the room and the nurse had a needle in her hand so Ricki face planted on the hard floor. We have been through a lot over the years but it doesn't make it any easier seeing your daughter fall then start twitching on the floor with blood running down the side of her face... She is going to be ok. The migraine isn't so bad but she has a huge goose egg on her eyebrow and will have a good shiner for awhile.
Some days my heart just aches for my sweet girl. It is a moms job to take care of their children and help them when they need it. Unfortunately with this rare disease there are just not a lot of solutions and not a lot of answers. There are a lot of days that I feel helpless when she asks for some help and I look in her eyes and see the pain and there isn't anything I can do but sit by her.
But, I always come back to how incredibly blessed we are. Yes, life stinks sometimes but you have to taste the bitter to know the sweet. You have to trust that God has a plan. We have seen his hand in our lives. We have been strengthened and know we will continue to be strengthened. We continue to have hope that someday there will be solutions and answers to the challenges that come with NF2.
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