Tuesday, December 14, 2010

18 month check up

Emily had her 18 month check up today.
She is almost 21 lbs now! Her head, height and weight are all small, on the charts though and proportionate.

We were very frustrated this time because we had to wait 1 1/2 hours for a scheduled well baby check up. She is not getting vaccines right now so all the doctor needed to do is check most orifices-all were clear. I don't think she even looked at Joe or myself once. She never once asked how Emily was doing or if she was doing anything new since her 12 month check up. She never asked if Joe and I were doing ok or if we needed anything.

She was rude and angry that her nurse was not there to write her prescriptions and notes.
The reason we have stayed as long as we have is because of the awesome nurse case manager. Thankfully we don't see the pediatrician often.

It just makes me so sad to see a doctor who is doing their job because she has to do it, not because she loves to do it. You know a doctor who does it because he loves to do it when you see one.

Emily has had much better head control lately. She still has far to come but her PT thinks we may have her setting up within the next 6 months! I can't wait to see my baby setting!!!
She has two teeth on the bottom and one on top is getting ready to break through.
We know that teething is a seizure trigger for her and because we keep a daily journal on all of her seizure activity we can see trends.

Teeth!

The good thing is 3 months ago when Emily would have bad days she would have over 200+ seizures on top of her spasms. The past month or so during her bad days she is only having 20-30 seizures! That is a huge improvement! The only change we have made is wean her topamax.
Every time we decrease a med we see improvement. She gets her last dose of topamax on New Years Eve. We will be bringing in the new year one less med!!!

She loves the computer!
Another good thing is we finally got speech therapy approved and found a ST in our area to take her case! I am told she is the best and is very hard to get.
We have dropped her occupational therapist for now. The therapist told us that we over-medicate Emily and that every blink of the eye we see seizures (prob because we do!!) we spoil Emily, the list goes on and on. This was a fight I did not have the energy to fight and in our little country town there are not any other OTs right now. So she is getting PT twice per week, Speech once per week, and vision once per month.
Really into something!
Oh I almost forgot! I don't want to say this very loud but she has been sleeping 6-7 hours at night! Normal people sleeping time!! WOO HOO!!


8 comments:

  1. So glad things seem to be improving... but wow, I hate that you had such a bad experience at the doctor's! That's horrible when they don't even act like they care!

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  2. It sure is good to hear positive things about Emily. What a relief it must be when your therapists gives you encouraging words about Her future.You all have been so patient and loving. How would anyone think Emily is spoiled? That is absurd. Really.I'd like to see what that lady considers an unspoiled child??? Can she explain that to me?? Oh well it takes all kinds. We will have to pray that she gets over her bitterness and has more respect for her patients. Likewise for the doctor.Having no bedside manner is difficult to understand? Anyway. Kisses and hugs to every one tonight. Merry Christmas Rollins family. Sweet dreams and may God continue to give you strength and abundant blessings. = >

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  3. I am loving the smile in the last picture! I cannot believe your OT ... I hate people who think like that. When they have a child who really does seize all day, THEN they can talk about seeing seizures where they (maybe) aren't. Until then, they can stuff it. And she's spoiled? That's crazy talk.

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  4. See?? God is healing her. I ask Him Every day to please help Emmy to get well. He is answering our prayers. Faith will bring her through! PTL! God knows what's best for her and for all of us.
    I can't wait to hold her again and see her new teeth! She is such an angel!
    Grandma Mary and Grandpa Jeff loves you SOOO much!!!

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  5. I love baby teeth!!!!

    I know doctors have to get frustrated in their job, but hello!!! They need to suck it up when they talk with patients... its not like its your fault that she's having a bad day.

    Love seeing all the good progress your little fighter is making! I can wait to see her sitting up too - that's going to be the BEST!! & its coming!!!!! :)

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  6. She looks wonderful! I'm so sorry to hear about your pedi and the OT. Some people just plain suck! Can't wait to see more great things from sweet Emily.

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  7. Yay for sleeping!!!! I'm shocked at the pediatrician. Just because Emily isn't typical doesn't mean she/you guys don't deserve the same treatment. I'm sorry to read about your OT...how can she pass judgment when she doesn't live it. I liked reading this update!!

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  8. WOO HOOOO!

    Goodbye and good riddance, Topamax!

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