Saturday, December 12, 2009

The good, the bad, and the ugly.

Time to fill everyone in on how she's doing. I have mixed feelings on this, it's hard to give just one answer. There are several areas where she is doing great and others that aren't so hot right now. The good-she is still excelling in school. I recently met with her principal and others that work with Emma at her school for another IEP. It was a really great meeting, except that not everyone could make it so I have to go back to meet with the speech therapist and physical therapist. I felt more confident in the process this time. It's been really overwhelming to me to understand the IEP process. I have a hard time trying to figure out what goals to set for her and where I want her to be. I don't want to put limitations on her growth, but she is developmentally delayed so I have to be realistic. OVERWHELMING. I thought a lot about what I wanted for her right now and went into the meeting with some things to discuss. Naturally, I have a hard time making decisions and standing up to people. For some reason, the whole advocating-wanting what is best for her really came to me this time. We spent the majority of the time trying to figure out where to place her for next year. It's a big decision and I'm very grateful that I have the support of her teacher and the principal. When she was first moved to the Dan Peterson school, we knew it would be only temporary. Technically, she doesn't qualify to be there from a development stand point. Medically, she does though. Going from early childhood intervention into the school system was a nightmare. She was the first one to make that transition with juvenile diabetes from kids on the move, so I don't think anyone knew what she needed. The diabetes is difficult with her since her communication is delayed. She never tells me if she is sick or that she feels hungry. I really had to learn her behavior associated with high and low blood sugars. So to place her in a full classroom where there is only 1 teacher and 1 aid, neither with any diabetes training did not work. Although her teacher at her last school tried really hard, bless her heart. She even told me, I don't know how to be her teacher and her nurse. Most kids in school with juvenile diabetes can manage it by themselves. Obviously, Emma can't so this is tough to figure out. Dan Peterson is staffed with a lot of nurses so moving her there just worked. Her teacher could focus on being her teacher and the nurses took on the diabetes. The plan was to give her a couple of years at Dan Peterson and then maybe by then she would be a little more help in managing the diabetes. There is a little communication there, but very little. It's more like I can bribe her to eat for me now, instead of me pinning her down and forcing her to drink sugar gel. She doesn't tell me she is sick and I can't tell her to eat an orange and expect her to cooperate. At one of Emma's A1c appointments, she had a low blood sugar. One of the other moms had an orange in her purse(her daughter with diabetes was a teenager) and offered it to me. If only it was that easy-here Emma eat this orange. Ya right! They have had a few problems at school this year managing her diabetes. Mostly, because Emma is being more stubborn with them about eating. This is something I deal with on a regular basis. It really does take a lot of effort to get her to eat sometimes. It makes me worry about transitioning her for the next school year. I don't know how it will work. The principle was really good about processing the new developments with her. We talked about all of the options and she even suggested putting transition off another year on the back burner. We have a lot to think about in making this decision. She didn't meet a ton of goals, but a few. I think she is pretty smart with all that's on her plate, so I'm not worried. They aren't either. Her behavior is kind of all over the place depending on who she is with. She seems to react positively to strangers and new settings, but can have extreme behavior with those she is most comfortable with( I guess that's me). The good news there is that it is improving. Other good news to report-Emma has learned to spell her name. She can't write it, easily forgets and needs prompting a lot, but still it is such a huge milestone for her. She is also talking more and more everyday. There are quite a few moments that leave me asking her to repeat what she said because I can't understand her still. Abby has become a good tool in translating for me, I don't how she can figure it out. Emma is really starting to want independence, it's awesome and frustrating at the same time. She likes to say "all by myself" with everything. She tries so hard to get the words out, it's adorable. She has to scrunch up her face and gets stuck on the transition from all to by myself. She will repeat "all by" at least 3 times before she can make it to myself. It's barely understandable, but we can understand it, so it needs acknowledged. Emma is having less problems with her skin infections this year, thank goodness. She was constantly getting bacterial infections that led to boils, some had to be lanced. I was doing around the clock care to keep it a minor problem. It's nice to be less obsessed with wiping everything down with cleaning wipes. I recently took her in for a yearly exam. Her doctor agrees that she is showing some age appropriate skills, but is closer to Abby's than her own. It doesn't bother me like I thought it would, maybe because I see improvement and not regression in her. That's all that really matters.

The bad news. Emma is getting sick a lot right now(no hospital at least), it makes living with Diabetes hard on her. I hate that. As a result, her latest A1c came in high at 9 something. I knew it would because of the blood sugars I have been battling. It's still really hard to accept. It was one of the harder diabetes management appointments. Emma's behavior is the same when she has diabetes problems or meltdowns. With the communication barrier I can't ask, so I rule out the most problematic scenario first. I check her blood sugar, if that's ok, I can move on and keep digging to find the source. Technically, if you understand how insulin works you shouldn't need to check within at least a 3 hour period. Emma's management is different, I guess. When I do check her blood sugar within the 3 hour period, more times than not a problem has evolved with her diabetes. Not only that, but she is sick all the time and pulls out her pump site a lot. It makes her blood sugar really high and forces me to check her more than normal. It leaves me feeling anxious all the time because I never really know what I'm dealing with, checking her often is my only link to sanity. Her endo kind of gave me a hard time about the number of times her blood sugar is checked this time, actually he kind of made fun of me. I wanted to explain to him our real life side of living with diabetes. I simply just said that she was really hard. I cried on the way home. He really has no clue what I go through with her, so it definitely struck a nerve. I'm still trying to decide if I'm going to find a new Endocrinologist. Emma is having problems with her ears again and isn't sleeping very well. Since before Thanksgiving she is up more than half the night. It's wearing us down for sure. She started getting back to back ear infections so I knew she needed to be seen by her ear, nose doctor. We met with him on Dec. 23rd and found out that she has a retracted eardrum. She's getting tubes put in for the 4th time on Jan 14th. This should help with her eardrum as well. He thinks that the eardrum is why she's not sleeping. The plan is to fix her ears first and if she doesn't start sleeping, then we'll keep digging to figure out what is going on. I'm starting to worry about her hearing, especially in her right ear. He said her eustachian tube is dysfunctional, which is causing the problems. I worry that we'll never get it under control and she will develop permanent hearing loss. Emma is not eating all that great right now either. She is gagging a lot on foods that she used to eat just fine. I'm trying to figure out if we're dealing with oral sensory issues again or if she is just being stubborn. Her weight isn't being affected yet. Her carb intake is pretty sad, so I need to keep an eye on it. All in all-nothing too bad, Emma's everyday stuff is just causing a few bumps in the road right now.

The ugly-This has to do more with my protective side of her. Lately, I have reached a breaking point in hearing the "r" word. If you stopped to notice, you would be surprised at how many times people used the word retarded. It makes me upset when I hear it. I've actually had people call others "retarded" in conversations with me. It's mind boggling to me that people don't realize that they are slamming people like Emma every time they say it. I'm just doing my part to help spread the word to stop the word. Please be aware of the words you use. You can check out the campaign here .


Godfrey Family said...

I am sorry life can be so hard sometimes, but you have a lot of faith and wisdom in doing the right thing for your daughter. I admire your diligence and perseverance. You're a good mom. You're a GREAT mom!

Rich family said...

I haven't checked Em's blog in awile. Love u Emma. Jill Bean is waving to ur pictures! I think she misses u.

Melanie said...

you're a warrior! If you get a chance read the house of howe's blog that connects off of mine last june she wrote a post called 'suit of steel' (i think) it's a good read. About the word retarded, I decided a long time ago I'm retarded and everyone EVERYONE has something they are retarded in. If you really look at the definition of the word in my opinion it applies to everyone. I guess I get more bugged by friend's school calls them the 'handicaps' ok whatever just call him Remy. I've noticed the kids at his school are really good at saying, "hi Remy" I'm sure they are with Em as well she is such a doll! Just remember you have a suit of steel or sometimes mine is made of teflon and I just make stuff bounce off me... AND it's ok to have a time out. Sometiems Rems is more than I can handle and I make sure he is safe and then I have to walk away for a bit. Some may judge that but ohwell.