Last Thursday we had parent-teacher conferences for both Mykaya and Laney. I am a fan of how Northridge does this (maybe all schools do, but it was quite convenient); they schedule them back to back so you can just sign a paper saying "yeah that day/time works for us" and be done with it. Working-mom-and-dad-friendly? Check. Anyway, we started with Laney's teacher, Mrs. Just, who is every bit as awesome as Mrs. Jahner, we just don't talk to her as often. I talked to her about my guilt about that, and she reassured me saying, "You can only do what you can do, and Mykaya needs the help. Laney doesn't." Well, Miss Laney came from a 2 day a week Kindergarten in Washington to Northridge, which is full-time. She was pretty far behind when she got to Northridge in December, but has already almost caught up to her peers. Mrs. Just has absolutely no concerns with her, she said she is a joy to have in class and is confident she will be completely caught up with her classmates by the end of the year. She said occasionally she gets in trouble for being "too chatty" and I laughed and said, "That's Laney-she's definitely my daughter!" After we left there, I couldn't help but remember my first conference with Mykaya's kindergarten teacher. There were already so many concerns. It was so upsetting to go and hear how scared she was, how she would hide in the bathroom during class, how she wouldn't really interact with anyone, and how hard of a time she was having academically. At that time, I was reassured by the teacher, who told me she would get used to school and things would get better with time. I believed her. Here we are 2 years later having pretty much the same issues.
Next we sat down with Mrs. Jahner. Oh how I loved this time to spend with her, just one-on-one! She is so positive, it's very encouraging to see her. She started out by showing me how she has posted visual charts on Mykaya's desk to help with classroom tasks, downtime, etc. She asked what I thought, and I told her it was perfect. How awesome of her to take what Kaya's responding well to in therapy and implement it in her classroom without even being asked. She then showed me a project that Mykaya and another girl in her class had chosen to work on together. Mrs. Jahner said she was excited to see them work together because it was an art project and they are both her artsy girls! It turned out really nice and I was glad to hear she had worked with someone without being asked.
Then we sat down with the scores. We had already been prepared at the IEP meeting we had last month so it wasn't a shock. But comparing her MAP scores with Laney's was a bit of a surprise. Some history on the MAP assessments. They are done three times a year starting in kindergarten and are shown on a graph during conferences to show progress over the year. The scores start at a certain level in kindergarten and continue up through 6th grade until they are (hopefully) the highest they've ever been. It's not a percentile score, its a numerical score. Hopefully that makes sense, how I've explained it. Anyway, Laney's scores are already higher than Kaya's. That means Mykaya is scoring at a low Kindergarten level in math and reading. I hadn't looked at it that way. A bit of a shock. But you can't go forward if you don't know where you are!
I try not to compare my girls; I feel very guilty when I do. Looking at it a different way though, if I didn't compare them, I probably wouldn't even know anything was wrong or to what degree. As long as I don't turn it into a contest I think we're good. :)
With love,
The Schulz's
Wednesday, March 9, 2011
Wednesday, March 2, 2011
Dr. Seibel
We now have a pediatrician on our team. Yay! Her name is Dr. Melissa Seibel and she totally rocks. She has a super sweet, quiet, almost shy personality, which is in stark contrast to me so it should work out great!
Our first visit with her consisted of me going through my notebook. I don't think I have referenced "the notebook" yet in any of my posts. It's basically chock full of EVERYTHING that has ever been done on Mykaya. Test results, assessment forms, doctor reports, etc. It makes appointments like these very easy; you should see the look on people's faces when I open the book and they see what's in there. Dr. Seibel's reaction was "oh wow, you have everything!" I've learned that nobody else is going to keep track of it all in one place. It was great that I have it because even though I had requested records from several places at the beginning of February in anticipation of this appointment, not much of it had arrived. Pretty disappointing.
The first thing we did was go over the MRI results from November. The day of the MRI, we were met in recovery by a neurologist, who told us that they had found nothing concerning. We were sent on our way with a copy of the images on a CD (which I requested). I later called and got the report of the MRI and was stunned to see that it said there was a problem with her pituitary gland. It said "possible pituitary hypoplasia" due to a smaller than normal pituitary gland. I did some research on that and there isn't much out there. Your pituitary is the master gland in your brain which communicates with the endocrine system. The main thing it regulates is the hormones in your body, including growth.
Over the last year or so we have noticed that Mykaya seems to be growing "out" rather than "up". When they measured her at Dr. Seibel's office she measured 48.5" tall and weighed 66.6 lbs. She is at the 38th percentile for height and 88th percentile for weight. That was concerning to me because she has always been right at the 50th percentile for both height and weight. I talked to Dr. Seibel about that and she said she will not be worried until she goes below the 25th percentile for height. I (reluctantly) agreed. But she does want me to take her in for some bloodwork to check her thyroid function because of her rapid unexplained weight gain. We will be doing that today after OT/ST.
We are going to try out a new tactic for preparing her for the blood draw, which is no preparation. She has no idea and she won't until we get in there. I'm not sure if it's a good idea or not, but we are at a loss. Last time, she was fully prepared and still freaked out because of the anticipation. We're hoping it will happen so fast that she won't have time to really think about it too much. I didn't want it to be looming over her all day today. We will be taking her up to Dr. Seibel's office to get numbing cream put on, then heading down to the lab. The worst thing about this is that when we were preparing for the shot last month, she kept asking "are they gonna take my blood out?" and I kept reassuring her that they weren't. So what now? I'm thinking about having us both get poked at the same time so we can go through it together. I will let you guys know how things go, and the results should be back tomorrow.
The other thing we went over was the abnormal EEG. She would like to set us up with a neurologist to order another EEG and see if we get the same results again. We can then go from there as far as whether a diagnosis of a seizure disorder is appropriate, or if we can get some more information. I was very agreeable to this as we did not get a lot of information the first time. We are scheduled to meet with Dr. Siruwan (the neurologist) on April 22. The EEG will be sometime after that.
Cross your fingers for us for the blood draw today!
With love,
The Schulz's
Our first visit with her consisted of me going through my notebook. I don't think I have referenced "the notebook" yet in any of my posts. It's basically chock full of EVERYTHING that has ever been done on Mykaya. Test results, assessment forms, doctor reports, etc. It makes appointments like these very easy; you should see the look on people's faces when I open the book and they see what's in there. Dr. Seibel's reaction was "oh wow, you have everything!" I've learned that nobody else is going to keep track of it all in one place. It was great that I have it because even though I had requested records from several places at the beginning of February in anticipation of this appointment, not much of it had arrived. Pretty disappointing.
The first thing we did was go over the MRI results from November. The day of the MRI, we were met in recovery by a neurologist, who told us that they had found nothing concerning. We were sent on our way with a copy of the images on a CD (which I requested). I later called and got the report of the MRI and was stunned to see that it said there was a problem with her pituitary gland. It said "possible pituitary hypoplasia" due to a smaller than normal pituitary gland. I did some research on that and there isn't much out there. Your pituitary is the master gland in your brain which communicates with the endocrine system. The main thing it regulates is the hormones in your body, including growth.
Over the last year or so we have noticed that Mykaya seems to be growing "out" rather than "up". When they measured her at Dr. Seibel's office she measured 48.5" tall and weighed 66.6 lbs. She is at the 38th percentile for height and 88th percentile for weight. That was concerning to me because she has always been right at the 50th percentile for both height and weight. I talked to Dr. Seibel about that and she said she will not be worried until she goes below the 25th percentile for height. I (reluctantly) agreed. But she does want me to take her in for some bloodwork to check her thyroid function because of her rapid unexplained weight gain. We will be doing that today after OT/ST.
We are going to try out a new tactic for preparing her for the blood draw, which is no preparation. She has no idea and she won't until we get in there. I'm not sure if it's a good idea or not, but we are at a loss. Last time, she was fully prepared and still freaked out because of the anticipation. We're hoping it will happen so fast that she won't have time to really think about it too much. I didn't want it to be looming over her all day today. We will be taking her up to Dr. Seibel's office to get numbing cream put on, then heading down to the lab. The worst thing about this is that when we were preparing for the shot last month, she kept asking "are they gonna take my blood out?" and I kept reassuring her that they weren't. So what now? I'm thinking about having us both get poked at the same time so we can go through it together. I will let you guys know how things go, and the results should be back tomorrow.
The other thing we went over was the abnormal EEG. She would like to set us up with a neurologist to order another EEG and see if we get the same results again. We can then go from there as far as whether a diagnosis of a seizure disorder is appropriate, or if we can get some more information. I was very agreeable to this as we did not get a lot of information the first time. We are scheduled to meet with Dr. Siruwan (the neurologist) on April 22. The EEG will be sometime after that.
Cross your fingers for us for the blood draw today!
With love,
The Schulz's
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