Hello all! Just wanted to share a quick update of Elsa at age 2.5.

– Right now, she is just shy of 23 pounds and 34 inches long. Her hair is really growing now. Most of her teeth came in at about 27 months.

– Feeding hasn’t been going great since her last seizure, in April 2014. (That makes three bigger seizures for her.) A feeding clinic just advised us to take a step back on feeding efforts (just don’t think she has the motor skills to do it, and it’s stressful for us all) and advised us to work on oral stim and food play at mealtime. A luxury afforded by the G-tube, which keeps her growing well, despite reflux related spit up bouts that still happen from time to time. More on that later…

– In July (this month), we learned that she is having mini “absence” seizures every 5 minutes all day long. Not sure how long that’s been going on. VERY scary. She lost some function after her last seizure. Feeding fell off and she lost a few words. But with a new med in place (Depakene, as we ween off Keppra), she’s started to recover words: notably “more” and “mom” — thank goodness!! :o)

– We tried to switch to Omeprazole for reflux control, since it’s a liquid, but it was a no-go. Just didn’t do the trick. So we’re back to Prevacid. Saw an IMMEDIATE benefit upon returning to it. So even though it’s a pain to split the pill, dissolve it, keep it in solution while administering it, keep clumps out of the tube, etc., it’s still worth it. We’re also about to try Peptamen Jr. for her bolus feeds, which Elsa’s dietician thinks could be helpful. We do feeds of 6.5 oz four times a day of Pediasure, at the moment.

– Sister Cece (age 1) is a big motivation for her. Elsa has gotten “nosy” trying to see what she’s up to. This has been great for encouraging her to transition from laying to sitting, and for walking. She loves taking steps. In fact, we’re working with Early Intervention to get her a gait trainer for school, which will start in January. Eeek!!

Sisters

The kiss

Any tips for a good transition to preschool would be much appreciated!!

Anitra

 

 

 

 

3 Responses to Elsa: Summer at 2 1/2

  1. Shirley Bidnick says:

    Is Elsa’s disposition as sweet as she is? Her baby sister certainly appears to love her. At about the same age Rochelle’s EEG showed continuous seizure activity. She couldn’t keep her head up at the time and balance was a problem. She wore a little helmut. She grew out of the continuous seizures or her medication brought things under control. Clonazepam was the drug that turned things around for her. She is also on phenobarbital.

    Age 3 seems so early for preschool. Rochelle went to preschool at age 5 and that seemed too soon. She was still so much a baby. I have no tips, just compassion for you. It was difficult to send Rochelle out into the world and trust others to care for her. I imagine it will be the same for you. I understand your anxiety. School is a mixed blessing. It is an opportunity to grow and develop, but not all of the opportunities are positive. Our children are unique and no one knows them like we do. Stay as involved in the school as much as possible. That helps.

    Keep up the good work. Elsa appears to be thriving.

  2. Anitra says:

    Hi Shirley!

    Elsa is one sweet baby, that’s for sure. We all share a sizable infatuation with her gentle and loving nature. Thank you for sharing about Rochelle’s EEG. SO glad to hear that she was able to pull away from the continuous seizures. Gives me hope! We have a follow up EEG and sleep study for Elsa in a few weeks and hope to see good results then. So Rochelle has never gotten off seizure meds? Have been hoping that someday we will be able to do that. They seem to make her so sleepy sometimes.

    I have been honestly delighted by the preschool folks we’ve met, and I feel the transition maybe harder on “mom” than anyone else! I’m so used to daily in-home visits from therapists, and really crave their constant support and feedback on Elsa’s progress. I hope to convey that to the preschool director when I meet with her in late August for the transition.

    Thanks for the GREAT advice!! Excited to learn more about Rochelle as well!

  3. Shirley Bidnick says:

    Clonazepam actually made Rochelle more alert and less sleepy. It was titrated according to her level of alertness. Too much and she couldn’t sleep. Some children do grow out of their seizures and need for medication. I am pleased with good control with medication.

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