Update

This past week has not been an easy one. We are really struggling with one more BIG thing added to our list of woes.

Kelsey’s mood has been pretty dismal until some relief yesterday afternoon.  Coincidently the cold she’s been fighting seems better today, so the terrible mood could be related to her cold symptoms. I’m hoping so, and that she will start feeling better and willing to be put down, play, and smile a little more.

The spasms have decreased dramatically. We thought this was great. We have been tracking them very scientifically.

Not. But it does show that the spasms have decreased from our estimated 10-20 before beginning the prednisolone. Which we never, to my dismay, tracked like this. It seems like a ton when they are happening, but when you write them down they don’t add up to quite as many.

Yesterday she only had one spasm. So we emailed the neurologist, thinking this was a cause to celebrate. Instead, she was hoping they were gone completely already. This was not the impression we were given at our appointment last week. Yesterday she told us if she had another one yesterday or today, we’d up the drugs and be on a new timeline. We were pretty depressed. We thought we had two weeks for them to be gone. Guess not.

Unfortunately today she had two spasms. One while I was snuggling her in her nursery this morning. Another while we were out to lunch with MomMom. Two would have been unheard of a week ago, but today it was two too many.

So, tomorrow we will add a fourth dose of prednisolone. I reeeeeeeeeeeaaalllllllllly hope this doesn’t make her mood any worse. It is hard enough to care for a toddler with developmental delays and vision problems. The bad mood. Well, it does NOT make life fun.

Thanks for the calls and texts and the outpouring of love last week on Facebook and the blog. It really means a lot. We feel like we’ve overextended our sympathy needs from our family and friends in the sick kids department.  But each and every diagnosis and hurdle is just as hard as the first. We may have thicker skin, but that’s it. We are hurting just as much, since our baby is hurting…again.

6 thoughts on “Update

  1. I know you’re support system is huge, Kim but I’d love to help. Let me know anytime you need something. Especially babysitting. I’ll even spring for a pedicure to get you out and watch the little lady (and Ben too of course). Hugs and prayers.

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  2. Thinking and praying for you. I know it’s not easy Kim. You are doing a fantastic job of persevering even when you don’t feel like it. I pray that this fourth dose will help and her mood will improve. You are so strong and know that there are lots and lots of prayers being said for your whole family. Wish I lived closer so I could help out too!

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  3. Oh you poor darling….it really sucks but we have to think that there is some hope that the medicine is on the right path…and maybe more will do it. UGH. I just can’t imagine what else there is to track, except maybe the number of breaths you still take on a daily basis. I mean more breaths is good, right? We HAVE to think we are one day closer to resolution. The real deal is that raising healthy kids is hard so add in the delays and medicine induced,or fever induced, or whatever induced moods…good grief. With just the common tantrums of a 2 year old parents are willing to feel sorry for themselves. You are allowed as well. It’s HARD.

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  4. Oh Kim, I hate to read this – we are sending lots of love & prayers your way! Both of your kids are so fortunate to have you both as parents, but I can’t imagine the heartache you face every day. Don’t lose faith – you all have overcome so much and you will overcome this as well. Your family will be in our thoughts and praying for some good news!

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