Dora is still not feeling up to par, so her energy level and patience with new activities have been a bit low. We’re not really sure what is wrong with her. It is beginning to look like she may have some sort of congenital defect of the urinary tract/kidneys. She has always had these off and on periods of running fevers and never really getting sick, but I thought she was just fighting off viruses. I even took her to the doctor a couple of times, but every time I got her there, she’d perk up and her fever would break, so I kind of just got used to it over time. She has always been what I have called, “high maintenance”, never seeming to be comfortable in her own skin. Now it appears, that she may have been fighting off kidney infections all her life. In early December, she had a fairly obvious bladder infection, so I took her to urgent care and she’s not been well since. At this point in time, she has had three documented bladder infections in the last eight weeks, all different bacterial strains. She has been on antibiotics almost non-stop for the entire period of time. Then in late December, she had a seizure, so we spent weeks trying to determine if she had a seizure disorder. At this point, it does not appear that she has one, but that she had a seizure as the result of another bladder infection that we did not know about at the time. The photo above is of her getting an EEG, which she did not enjoy. We just got the latest culture results back today and have an appointment in two weeks, where we will be figuring out with her pediatrician what steps to take now as far as further testing and seeing specialists goes.
She is not really laying around and still has periods of bouncing off the walls, but she also has periods when she sort of shuts down. In addition, she has started losing her patience with challenging things and will throw the offending work across the room. Also, as I mentioned last week, she just wants to stay home all day, every day. I am really trying to honor that wish. Being out and about is clearly not comfortable for her. She is needing to be at home with a lot of snuggle time and not stressed by the various sounds, sights, and smells of the outside world.
At home, she does stay fairly active, though with more sedate activities most of the time. She has really gotten interested with bead stringing all of a sudden.
She even went so far as to take some beads that we have for shape sorting and started stringing them on the leaf sticks from her Honey Bee Tree game. So I gave her some pipe cleaners and she really loved putting the beads on those.
She has also been working with scissors a lot. I made her some cutting strips and put stickers in between the lines. She enjoyed cutting those for one day, but has not expressed any interest since. She seems to prefer just exploring using the scissors in a variety of cutting patterns. She also has started cutting all of the cheapy beaded necklaces that we have into individual beads (the necklaces are like the ones people throw at Mardi Gras). It is no fun cleaning them up, but she is clearly building up some great fine motor skills doing it. We have several pairs of children’s scissors available to her at all times and she uses them all at different times. She started with My First Scissors, which are easier to hold for toddlers, as they do not use finger holes. She then progressed to Maped Koopy Spring Scissors. You can turn the spring off if you want, but the spring is nice at first, so the child only has to close, but not open the scissors. She has more recently started using Fiskars Kids Classic 5-Inch Blunt Tip Scissors, but did cut herself (no blood) once and has been a bit scissor-shy of them since.
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I hope Dora feels better soon. I'll be praying for her. That has to be so frustrating for everyone. It's wonderful that you're observing her needs and interests and making her as comfortable with her life right now as possible.
ReplyDeleteThat's a lot for a little one to go through. No one likes to be poked and prodded. I hope they get to the bottom of it and with an effective treatment. Wishing sweet Dora wellness.
ReplyDeleteI'm sorry to hear about Dora not feeling well! Charger had a couple seizures as a baby, and his EEG was inconclusive. They went away, thankfully. We've had liver issues, but not kidney issues so I cant give thoughts on your specific situation, but I know the frequent doctor visits and no answers are frustrating. Praying she feels better soon!
ReplyDeleteAnna-Marie, did you actually deal with the kidney/bladder infections or just health worries? If you dealt with the same kidney/bladder issues, could you e-mail me privately about how things worked out? I'm glad #2 is healthy now!
ReplyDeleteOh Dear She does not look happy in that first picture. What a stressful time your are going thru trying to find out what is wrong. We had that situation when my youngest was a baby. I still remember the stress and anxiety it caused. I hope you get some answers soon. YOu are in my thoughts
ReplyDeleteI'm late in the game and only a very occasional reader but this description of your daughter's symptoms sounded familiar to me. Our Little Tongginator is primarily an adoption blog but they had been struggling with trying to figure out the strange collection of symptoms their second (toddler) daughter was experiencing. It turned out she probably has Celiac disease or a severe gluten intolerance.
ReplyDeleteThis post, on a different adoption blog, gives a summary of the symptoms:
http://www.nohandsbutours.com/2012/03/19/non-special-needs-but-not/
And this is a link to the post where they felt they had a diagnosis:
http://ourlittletongginator.blogspot.ca/2012/04/okay-so-maybe-we-might-possibly-have.html
Sorry if this is more hinderance than help but I guess you never know. :)
Anonymous, Thanks for the suggestion! It is great that you did mention as so few people know about celiac. Our family is also of the racial background that is most frequently associated with celiac. Dora has been tested for celiac via blood test and that came back negative. At this point in time, we are not pursuing a biopsy, though it could come to that one day.
ReplyDelete