My Smart Girl

So, Analeigh had vision therapy on Monday. The nurse, Mary, set her up in her Kid Kart so we could use the tray for the toys the therapist, DeDe, brought with her. First, DeDe tried various toys that were attached to the lid of a Rubbermaid container... she didn't really seem very enthused by that. Next, they introduced some black & white patterns printed on paper which apparently was very popular with her because she got extremely upset when DeDe took them away. Next on the agenda was this thing with about 8 squares attached by velcro. Each square had a different texture... one had large bumps on it and was red, another was a mirror and still another, something very soft. DeDe put Analeigh's hands on the squares at either end (the red bumpy one and the soft one) with the mirror square in the middle. Analeigh was reclined back in her Kid Kart (because she rarely tolerates sitting straight up) but she brought her head all the way down to the tray in front of her and started making a strange sucking noise with her head turned to the side. I corrected her posture a couple of times but she kept on putting her head down very close to the tray.

We finally decided that she was trying to put the red bumpy square in her mouth and it appeared she was looking at herself in the mirror. So, we decided to stop correcting her posture but rather watch what she did for a while. She kept her head very close to the tray, making that sucking sound with her head turned to the side. I thought maybe, just maybe, she was doing this because she wanted to see the toys. After a little while, she took both hands and put them on her tray, pushed her weight up until she was all the way back in the Kid Kart that was still in a reclined position. I was impressed!! Then after a minute or so, she put her head back down close to the tray and did the same things all over again... and then pushed all her weight back up on her own AGAIN.

I don't know what any of this means but she impressed me, Mary AND DeDe. DeDe says she believes Analeigh has some vision... we don't know how clear or how far she can see, but she seems to react to certain things. When DeDe took the toy with the squares away, Analeigh got very upset until she turned her head and saw the shiny purple pom pom they had hung up next to her... after a while she would turn her head the other way and when she looked back at the pom pom she appeared to have a look on her face like, "Oh, there it is!" Mary says she thinks Analeigh is going to surprise us all one day with what she can do! I hope and pray that she does! Just thought I would share because I really was impressed by her! :)

EEG Results are in!!

The results of Analeigh's EEG are in. The last EEG she had showed little to no brain activity (shortly after the initial injury on 1.21.11), but now there is "quite a bit of brain activity". She is at a great risk for seizures judging by this EEG but they only registered one 8 second "abnormality"... usually the abnormality has to last at least 10 seconds to be considered a seizure but she said if she is clinically (visually) doing something (what we've been seeing her do), then it is probably a seizure and to err on the side of caution, they're going to call it that. There is something that regulates activity in the back of her brain that didn't have a lot of activity (can't remember what she called it) but it is common in kids with brain injuries that are blind (she has cortical blindness) so we are not shocked with that result. She will be staying on her current dose of Keppra for the time being. I'm fairly pleased with the results because a) it means she is not having big, scary seizures and b) she has more brain activity than she did a year ago!!

I like to think this means she has some awareness of her surroundings though I do not know to what degree. The doctor did not say this, it's just what I hope. She did sound positive though (which is a nice change coming from a neurologist) so I'm going to consider this to be GOOD NEWS overall!

 

Analeigh's Latest News

Well, where do I start? I know it's been a while so here we go...

Analeigh has managed to stay out of the hospital since the end of October when her GJ was accidentally dislodged. We've not had any bouts of pneumonia and she's pretty much only been to the doctor for routine maintenance. We fired the old neurologist and hired a new one (a woman this time who seems much more interested in Analeigh and what I have to say about her). She's been weaning off of the Phenobarbital (anti-seizure medication that is also a narcotic) and has been put on Keppra (a different anti-seizure medication that is non-narcotic) for the time being. We had an EEG done on January 5th and will be getting the results on January 17th. We thought she might be having seizures but I'm not sure now that she really is. I guess we'll find out soon enough though (this coming Tuesday).

Analeigh also saw Physical Medicine for the first time at the end of December. They increased her Diazepam to help with spasticity and ordered a pelvic x-ray that we just had done this past Thursday. Results from that are in and apparently her right hip is dislocated and she has some weak bones. This is a "common issue" in "these types of patients" and there's really nothing they can do about it. I was told by the doctor that if she begins experiencing excruciating pain from it, they might consider surgery but not until after she turns 2. For now, I think her pain level is minimal and can be treated with the Diazepam and Ibuprofen. She said later on there is the option of a Baclofen pump but I've already researched that and made up my mind that the risk of infection far outweighs any benefit she might get from it.

We also just saw her Gastro doctor who wants her to go on a diet... yep, her first diet at 21 months old lol. Apparently her weight is not proportionate with her height so they cut her feedings by 50ml per day (which means she gets to spend 1.5 hours per day off of the feeding pump.. yay!). I asked about the possibility of ever working her back to G-tube feedings rather than GJ and she said at some point in the future we might try it. She will want to repeat the swallow study and upper GI first and it will be later on but that was enough to satisfy me. I just can't stand the thought of knowing there's nothing in her stomach and worry often whether or not she ever feels hungry.

Last on the list of new things... I fired her regular day nurse and gave the spot to a nurse who covered our night shifts while our regular night nurse was out having surgery. This particular nurse (the one I fired) had been with us for over a year (almost since the beginning) but had apparently forgotten her place somewhere along the way. She was saying all kinds of mean, hurtful things about me behind my back, openly refusing to do things I asked her to do (such as opening Analeigh's curtain, changing her linen 3 times per week and doing various exercises/positioning with her). Anyway, I won't go into further detail but things are much more relaxed with the new day nurse and I'm much happier!

Well folks, that should do it for now. If I think of anything else, I'll be sure to post again. :)