Nephrology summary

A few weeks ago we went to see Dr. Najera about Gavin's kidney ultrasound and bloodwork. She said based on his ultrasound, his kidneys are small for his height, possibly indicating Renal Dysplasia. She said based on the creatinine level from his bloodwork, she thought he probably had about 50% function in his kidneys, although she didn't know if it was one or both kidneys, and what caused it. She ordered a VCUG to test for possible kidney reflux, or see if there were structural abnormalities. The VCUG was done last Tuesday, and the radiologist was able to tell me at the time that he didn't see any reflux or structural problems. We haven't heard from Dr. Najera with the results though. So we aren't really sure if she's officially diagnosed him with Renal Dysplasia or not, and what, if any treatment she wants to do.
She assumed he was born with his kidneys not fully developed, but wasn't sure. It sounds to me that it's a bad sign if that's the case. If it was a structural problem, they could probably do surgery. But anyway, we still have to wait to hear from the doctor to see what she has decided. Hope it doesn't involve any special diet, since it's hard to get the kid to eat a lot anyway.

Gavin really wants a popsicle!

Gavin's been sick for a week now, but does at least have an appetite now. So Terry was on the phone to his mother tonight when I saw Gavin grab the handle of the fridge, and start walking his feet up. So Terry put the phone next to Gavin's head and said "Tell Grandma what you're doing." Gavin replied "I'm climbing up the fridge." Quite true! So Terry took the phone back to go in the other room for a minute, at which time Gavin said "I know where the freezer pop is!" very insistently, because he was using the handle of the fridge to climb up to get to the freezer, apparently to get a freezer pop.
He sure is starting to sound like a typical kid sometimes!

E.I. visit yesterday- need more therapy???

Yesterday, the new O.T. (from North Branch), Mona, and Gavin's regular E.I. teacher, Emily came to see him together. Mona brought a large piece of construction paper with 2 smaller pieces of paper cut out to make a flower stem and leaf. She also had a cupcake liner to make the flower. This liner had been cut a couple of times to let it lay down flat. Emily started by asking what this was, what could Gavin make out of it? She finally switched gears and asked him what this was, and pointed to the leaf. Gavin responded "a football." We all agreed that yes, it did look like a football. Emily kept going back to the same question, asking it pretty much the same way every time--"what is this? What can you make with it?" Gavin even had the pieces in the right order to make a flower, but didn't respond. I don't think he knew that it was supposed to be a flower. So I asked him if the cupcake liner was the sun. He didn't answer, but did pick it up and look at it, and try to fold it back together. Mona helped him fold it back together and said that it had cuts in it to let it lay flat, and they could make a couple more cuts even. I saw her give him some scissors, which he picked up and started to try to use 2 handed. Mona showed him the correct way to hold them, with his thumb in the little hole, and other fingers in the bigger hole. I left the room to make a phone call. I returned to find that the flower was done, which means they had cut a couple more slits in the cupcake liner (flower petals), and pasted or glued the pieces onto the larger piece of paper. They also had written his name in crayon on the paper, but I think they probably had him hold the crayon, while they helped him write. Anytime Emily asked Gavin a question, he wouldn't respond, but would repeat exactly what she said. Even at times when he needed help, he wouldn't ask for it (which is typical of him right now), but even when she asked him if he needed help, he wouldn't reply. The only verbal interaction I saw him do, was to repeat everything that Emily said or asked over the course of the 45-50 minutes they were here. The last thing they did with him, was had a lunch tray which they sprayed shaving cream on (which Gavin hates, but is good therapy for him), and had 2 cars to play with. One for Gavin, and one for Emily I guess. I know he did start playing with the car, although I think they had to coax him into driving the car through the shaving cream (which would be typical at this time since he doesn't like that activity.) I wasn't really paying attention, but all of a sudden heard Emily say to Gavin "excuse me." When he didn't respond, she said "Gavin, excuse me." I guess he still didn't respond either verbally or to whatever she was wanting him to do (I think she was saying it to have him move his car so her car could get through someplace in the shaving cream.) He didn't do whatever or verbally respond, so I kept hearing her say "Gavin, I said excuse me" and that type of comment. I never heard her tell him what it was she wanted him to do. She just kept repeating "excuse me." Now, the only time Gavin ever hears us say that phrase, is if we burp, and we have taught him to say excuse me when he burps (although we have to remind him most of the time.) I'm aware that we should teach him that "excuse me" can mean different things and be used at other times besides just burping, but we normally tell him what it is we expect of him. The reason that Gavin is in speech therapy, isn't anything to do with his pronounciation, it's because he doesn't seem to know what we're saying sometimes. He doesn't always know what we're asking, so we have to model the correct answer for him if he doesn't answer us. Instead of giving an incorrect answer, normally what he does if he doesn't know what we're asking, is just repeat the question. I've decided that maybe that's how he copes with stress sometimes, is repeating what people say. Lonnie agreed with that idea today. In fact, she's the one who brought it up today. Anyway, the point is that he never spoke to Emily yesterday except to repeat everything she said. When he wasn't doing what she wanted when she said "excuse me" to him so many times, she should have explained what she wanted from him. She also had asked him different times to use his words, to let her know what he needed or wanted, and asked him if he needed help. He never responded when asked if he needed help, and he certainly didn't ask for it himself. So at the end of the session, she asked me "He's in speech therapy twice a week, right?" I responded yes. Then she asked "And feeding once a week?" I said no, twice a week, same as speech. And she asked if he was getting any O.T. So I said "just as part of feeding therapy. They take the first 20 minutes to do climbing, running, jumping, etc." So Mona interjected that of course that would be to get the body warmed up to eat. Emily didn't tell me why she asked those questions, and they didn't have any Home Visit Logs with them to write up what they did on the visit and what they want him/us to work on so I don't know what she was getting at. I'm assuming she thinks he needs more therapy, but if that's the case, that should be the school's responsibility. They've been seeing him for 3 years now, Emily has been working with him for 2 years now. Just before last summer, she did increase her visits from twice monthly, to once a week (an hour each time.) The O.T. is scheduled to come out once every 2 months. If they think he's so far behind, then they should increase his scheduled appointments. I would object if they think we should have our insurance cover more therapy instead of the school picking up the extra therapy. Especially when his current independent speech therapist hasn't indicated a need for more therapy than he's currently getting. Normally I would be upset about Emily questioning how much therapy he gets, with the implication that he needs more. But considering how much they've been wanting him to go to preschool, I think it was good that he didn't respond to her questions and didn't ask for help, etc. They certainly can't expect him to go to school on his own (preschool), without someone there to help him. As Kasarah says "he needs someone to be there to facilitate communication with others." Emily had said last fall when they did his evaluation and IEP, that there would be a special ed aide in his classroom, but no individual aide for him, because they don't think he needs one. She then at another time said that the special ed aide may not actually be in his classroom, but there would be an aide that may be shared between his classroom and the other preschool classroom, so that the aide may be across the hall from him, but would be accessible to him. Now, for a kid who doesn't respond to people when they ask him questions, and won't ask if he needs something (bathroom, food, water, help, etc.), I would think he'd need an aide in the room WITH him, specifically paying attention to him for the most part. The aide would need to be trained to recognize when he needed something, instead of just assuming that he'll ask if he needs something. Of course, the school doesn't know about his autism diagnosis, but even if they don't know that, they are aware he has problems with speech, which is why they're providing therapy for him in the first place. And that's why he still qualifies for special ed. So maybe Gavin not responding to Emily is a good thing. Because then in a few months when I go to the preschool director and talk to them about not sending him off to school without me, I can at least refer back to yesterday's visit and say "See, you could see that he didn't respond, he didn't ask for help when he needed it, etc. You can't send a kid like that off to school without someone who knows him, to help him." So maybe it was a blessing in disguise.

My smart little man!

I've been horrible about keeping up this blog, but wanted to write a couple of things. The other day, Kasarah told me that she was watching Gavin play with his toy triceratops dinosaur, and she heard him say "Triceratops, triceratops." I didn't know he knew what kind of dinosaur it was, but was glad he knew it. But then she said she heard him say "Kasarahtops", and repeated it a couple of times, so said "Triceratops, Kasarahtops." She just thought it was cute, so wanted to make sure I knew it. I thought it was great because he was playing with words, rhyming!
We took him to the Mall of America yesterday, and picked up Kasarah on the way there. They had a pretty good time, and she even went on the Wonder Pets flyboat ride with him. She told Terry that she thought he did really well there, as most of the kids she worked with wouldn't even have been able to go inside the mall because of it being so loud, and there being so many people, etc. She told Terry that she thought Gavin was really smart, which, of course, we love hearing!
Btw, Gavin said to me the other day, "Zebra starts with 'Z." So I asked him what "monkey" started with, and made the appropriate sound, and he said "M." We asked him another couple of words today, what letter they started with, and he was able to tell us the correct answer. I can't remember what words, but he got them!
A couple of weeks ago he impressed me by being able to count up to 100 with minimal help (I just told him the 10s, and let him count the numbers between.)
On a funnier note, today he saw a picture of a boy throwing a football. He said "throwing." So I said "what do you throw?" Gavin responded "eggs." Great! My kid's starting early!
Yesterday, he pinched Terry, so Terry said "No pinching", and Gavin repeated it. Then Terry said "So why did you?" Gavin replied "Because Gavin pinched Daddy." So he doesn't really understand the concept of why you do something, but he did seem to know that when someone asks "why", the answer starts with "because." That's getting there!

best compliment about our kid

I got the best compliment possible the other day from Gavin's ABA therapist (Kasarah.) She said "He just makes me so happy." She absolutely loves working with him and loves hearing him laugh, and has mentioned how easily motivated he is. I just thought hearing that your child makes someone that happy was one of the best compliments you could ever get concerning your child. His feeding therapist told me that Gavin and the other kid (Travis) just make her day. I'm glad our son is such a positive light for people!
I haven't written anything for a really long time, and haven't even mentioned who Kasarah is, so will do that later.

I got a call from the school's occupational therapist today, to set up an appointment. After talking, she asked me if I was working on getting the letter that E needed for the school (his Early Intervention teacher.) I told her that yes, I was working on it. Thing is, I don't think I should NEED to get the letter. This is the deal--in September the school did their 3 year assessment testing. The results indicated that Gavin qualifies for special education services (from the school) for the next 3 years. Up until the age of 3, services are provided in the home. After 3 years old, they are provided in school. EXCEPT, that I wasn't planning on putting him in school at this time. Yes, we did attend Early Childhood classes this fall, but the school said for him to receive services through them, he needs to attend preschool when he turns 3 in a few weeks (UNLESS we have a letter from his doctor specifying that he is not to attend school at this time.)
I wasn't going to put him in preschool at this time, for several reasons. One of which is his health--no way in hell was I going to start him going to school in the middle of the winter, when he got sick last fall, and it laid him up for 3 months straight. Every time he gets sick (cold/flu, whatever), it's really rough on him. It scars the lungs every time, and considering he already has scarring of his lungs, it makes it even harder for him to recover. So the thing you do with kids with lung disease, is avoid them getting sick for as long as possible, to allow their lungs to develop enough so that the illness doesn't really do them in, and make their lungs worse.
So anyway, I wasn't going to put him in preschool at this time, and only one of the reasons is his health. Another, is that I just don't think he's ready for school at this time. And what I'm ticked off at right now, is that the school will not provide services if I choose not to enroll Gavin in preschool in the spring semester. And yet, I shouldn't HAVE to. So we're pretty much being forced into putting him in preschool when we don't want to. Well, if we want him to get services through the school anyway. We're being backed into a corner--not get services that the school thinks he needs, or risk him getting sick and all that entails. So far, he hasn't been hospitalized when he got sick, but that's because we already have all the stuff like oxygen, nebulizer and sat monitor at home anyway. Next time, we may not be so lucky.

It just feels like I'm always having to justify what we're doing with OUR child. So why aren't we allowed to just do what we think is right for our son?

My little parrot

I'm feeling irritated today. It was a dreary, cold day, which then also gave me a migraine. So it wasn't great. Although, I did get rid of my migraine with medicine, so things were better. But then Gavin really was doing a lot of "parroting" today. I asked him "do you have to pee? Yes or no." So he said "have to pee." So I thought, Good, then go ahead (since I had him on the toilet already.) But then he added "yes or no" instead of answering the question (So he repeated "have to pee, yes or no." I thought maybe he was just tired or stressed or something. Although the speech therapist (L) said he did a good job there today.
Tonight, he was in the laundry room and knocked over our bowl of coins (that we take from the laundry.) He tried several times to pick them up and put the bowl back up on the dryer, but kept spilling the bowl when he'd try to put the bowl back. So Terry went in to check on him. He said Gavin was sitting on the floor saying "Problem. Problem. If you have a problem, tell me." Great, I've got my own little Rainman. (That phrase is one I say to him OFTEN, since he doesn't tell me what's the matter most of the time. I tell him if there's a problem, or if something is wrong, to tell me. He does sometimes now tell me when he wants a bottle, or if he has an ouchie. So we've made progress, but not apparently as much as I thought. He tends to repeat what we tell him when he doesn't understand what we're asking of him (not the only times that he parrots, but that's a common trigger for him.) So I'm guessing he doesn't really get what I mean, when I ask if something is wrong, or if he has a problem. I thought I had broken it down enough for him to understand what I meant, but I guess we need to work on that idea/concept some more.

If you haven't had to deal with the parroting yourself, you have no idea how frustrating it is. Just remember that repeating game you played as kids, where you repeat every word that someone says "WHAT DID YOU SAY?" (and they respond) "what did you say?" "ARE YOU REPEATING ME?"- (they respond) "are you repeating me?" "STOP THAT"- "Stop that" "NO REALLY, I MEAN IT."- "No really, I mean it." (and so forth)

AAAAARRRRRGGGGGHHHHH! That game gets old, really quick. Except with Gavin, it's not a game. He's just trying to figure out how to talk, and figure out what people are saying to him, etc. But it's INCREDIBLY frustrating and mentally taxing/exhausting!