Hello! I myself love reading the progress and experiences that your kids are making at different stages so I told myself that I would try try try to make more of an effort in sharing ours. So here it goes!!

Seizures Smeizures…
Since being put on Epilum and Clobazan Isabellas seizures have been nearly non existent….beside the febrile ones though. Boo…Unfortunately whenever she has a fever she will most likey have a febrile seizure (80% of the time) and for Izzy, febrile seizures have always been status elipticus seizures. The underlying cause was mostly due to uti’s that would bring upon the fever because she had grade 3(l) and 5(r) kidney relfux then. The most recent seizure was 2 weeks ago when we finally went in for our 6 month vaccines that brought upon a fever 3 days after!! I figured we were safe after the first 48 hours, but guess not. We were giving her around the clock panadol for the first 2 days, but I have learned from my mistake…I will in the future give it to her for 200 days after….heehee…just joking, I mean like 4 days after. 🙂 But besides the fever trigger incidents, she doing really well!

Kidney Reflux…
Isabella was dx with grade 3(l) and 5(r) kidney reflux when she was around 5 months old. She has had multiple Utis that have led to her right kidney slightly scarred. But the worst reaction to the reflux was the utis that gave her fevers that led to the yucky seizures. But we are delighted to say that we have had the Deflux non-invasive surgery done on Dec 15th and we just did our MCUG scan today and now there’s no reflux on her left side and her right kidney has downgraded to grade 3!!! She will most likey get the Deflux injection again for her right side, but don’t know till we see our surgeon and urologist in April. Will let you guys know what happens!

Eating…
She is a milk monster!! Isabella has been eating very well, taking in around 180ml-260ml per feed (4-5x) She also eats puréed meats and veggies, pancakes moistened with agave, cheeses of all sorts, biscotti biscuits and were still experimenting (1-2x)! She only has two teeth on the bottom that just started coming out a few weeks ago, so still can’t cut anything yet with her teeth. Our OT and ST are quite happy with her oral moter skills, but we still do a lot of chewing exercises (therapy chew toys, teething rusks, fingers) 😉
A key thing to this (or at least I think it is) is that Isabella has always been on the appetite stimulant Periactin. It’s worked wonders for her since starting around age 3-4 months. We (under the guidance of of ped) have slowly weaned her off from 3x a day to once a day every other day. Hopefully being fully weaned soon!

Development…
-She can sit independently but still working on the protective mechanisns of putting her hands down on her sides and back to save herself from toppling over.
-She’s able to hold herself on hands and knees but doesn’t know what to do after besides pushing forward with her hips and falling on her face 🙂 hahaha..(I’m such a mean mom) but now she just stays in the position till her lil arms get tired and then gently puts her face down always closing her eyes first though…such a smart girl!
-She giggles much more now! But It does take a lot of throwing up on the air and superwoman flying…but oh so worth it x

All in all she progressing and that’s all that matters!!

Weight and length…
Isabella is now 10.2 kg and 73cm long. Her head is still a bit on the smaller side though at 42.5cm. We were thinking microcephaly but our ped said not to worry too much as sometimes it’ll catch up. Experiences?

That’s about it for now… I will post some pictures next time, i just don’t know how to do it from the iPad so ill use my home computer next time. Much love and health to you and your families!

Isabella N’s Mama

 

2 Responses to Isabella N @ 14 Months ^.^

  1. JillH says:

    Sounds like Isabella is doing great! My son is the same age and he also has the same kidney reflux as her and so far no intervention but it will come at least with the stage 5. He is on a medication to prevent UTI’s so far we have not experienced that. My son is the opposite of Isabella and has a very large head so he struggles with sitting because his head is much larger in proportion to his size. I can’t wait to see pictures of her!

  2. lee-ann Hunger says:

    Isabella is doing well. Our little Renee has been having seizures as well since she had her 5 month vaccines a month ago. Just in the last week we have started her on Epilum they started her on a low dose rate which was not working after having 2 really long seizures on wednesday they have put her dose rate up and so far she has been good.

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