Saturday, January 14, 2012

Busy Week for Baby Girl,

Paisley has a lot to do, and I will do my best to update this with everything going on. Monday we register for her therapy at the rehab center at Springbrook and go to orientation for her speech/feeding therapy. Tuesday we go the eye doctor to check up on her cataracts and vibrating eyes. Thursday we go to orientation for her physical and occupational therapy, and then we're going to her her pediatrician for an examination and possible referral to see a second opinion. I like our neurologist, but I feel like he's not agressive enough, mostly bc of the condition of Paisley's brain (like she's too broken to even try). The 75mg of Topiramate she's on seems too be helping some, mostly her awareness, but she still has multiple clusters of infantile spasms a day and I want them stopped completely.

For those just now catching on, infantile spasms are a type of seizure that are very dangerous to Paisley's ability to develop more motor skills, and could make her lose the very few she has right now. My concerns with regression became real when Paisley seemed to have trouble breast feeding. She takes a bottle fine, which is a lot easier than a breast, but she does leak milk from her mouth with both forms of feeding (she is in speech therapy to help with her bottle and spoon feeding). Sometimes I try to think that maybe she is just to the point where she is no longer interested in breast feeding, because from what I read at eight months that can be very likely. But I feel like I know my baby well enough to know that's not the case; I believe it's getting harder for her since her seizures started and she resorts to the easier alternative. I won't be able to handle my baby losing her ability to eat. They have to stop now.

4 comments:

  1. Paige, why don't you let me take a look at her breastfeeding skills? There may be some things we can do to help her to nurse better. There are many advantages to continuing breastfeeding for both of you - keeping your supply up! and because aspirating breastmilk is much less irritating to the lungs than aspirating other fluids. (less likely to lead to pneumonia) Let's talk, k? Love you both!!

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  2. Sherri, I think that would be a great idea! I want to keep on for as long as I can, but with her not feeding well, my milk is dwindling. I'm ready for a consultation haha.

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  3. Paige, I met you at Sherri's on the 4th of July and got to hold Paisley and love on her. So sorry to hear this. I will be praying for you and Paisley. She is precious!

    Jama Holt

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  4. Paisley is a beautiful child. Your dedication to her is admirable.


    Lee
    Have you heard about the A to Z Video Challenge?
    Blogging from A to Z

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