2 Updates in a row!

Today was Sarah's Kindergarden Transition IEP. It went really well. It was at Vowles, since that's where she'll be going next year, so we had her preschool team meeting up with her elementary school team. Her PT will stay the same, since she services both the school system and the Gratiot-Isabella RESD. Her Special Ed. teacher was there, as well.

First, we went through all of Sarah's strengths, and how she was doing on her goals since we last met. We only met 6 months ago, but she's made a lot of progress since then, which I was really excited to hear. Then each of the therapists went over their goals for her for the next year. They all sound really good to me, nothing too far fetched, but not too easy either. She'll be getting a lot of extra OT, since her Special Ed. teacher focuses a lot of fine motor. She'll be getting 20-30 minutes of ST, 4-6x a month. As for PT, I think it was around 30 minutes, 2x a week. But, she'll also be having 2 recesses a day, not to mention P.E., which she'll probably have with her special ed class, as she's still really small. It was suggested that I bring her to the playground at the school sometime during the summer to allow her to get used to it, as it's a bit bigger and not quite as contained as the one @ her current school.

Speaking of containment, I also warned everyone about her tendency to run off. That's still my biggest concern with her, as she's ninja-like in her stealthness. She almost seems to wait until you're NOT looking and then go the opposite direction. I told them we're still planning on getting some sort of device to keep track of her. I'm hoping to have that in place by the time school starts.

I also told them that she's not potty trained yet, but I hope to have her well on her way by the time school starts. Katie's already doing really well, and I know that Sarah won't want to let her be better at something. :D

All in all, it was a really good meeting. I'm fortunate that her team really gets Sarah and I haven't had to fight for much in regards to therapies or accommodations. We also put transportation on the IEP, even though I'm not 100% sure she'll be riding the bus. But, it's easier to put it on there and not have to use it rather than having to schedule a meeting to put it on there later. The OT seemed really excited to work with Sarah, and the PT already knows her, but the ST seemed a little daunted by the fact that she's so small and is a runner, haha. I know Sarah will have them all wrapped around her little finger by the end of the first week of school.

This has been a week

You know, there are times during your life when you wonder if the universe isn't playing some cosmic, karmic joke on you. This would be one of those times for me.

For those that follow me on Twitter or Facebook, probably already know about this, but for those that don't, Sarah got seriously injured this week. I like the way Jeff put it: Sarah picked a fight with a 15 lb. TV and lost. She & Katie had a TV in their room that was up on a TV stand on the wall. It was pretty secure. Apparently not secure enough for Sarah. She, Emma & Katie were playing in their room earlier this week while I was puttering around doing housework. All of a sudden, I hear this huge crash from their room. I rushed in there, to find the TV on the floor (it had been up about 6 feet) and Sarah just starting to realize she'd been hurt and screaming. I saw that she had blood on her mouth, so I rushed her into the bathroom to rinse out her mouth. The blood didn't stop. I saw that she had a huge laceration on her lip that would need stitches. I grabbed a washcloth and put some pressure on it, while yelling at Emma to get my phone. I looked into her mouth while I was calling Jeff, and I noticed that one of her bottom teeth was missing.

I got ahold of Jeff and told him what happened, and he said he'd meet us at the ER. But, it took me a bit to get the girls in the car, with Emma & Katie at least having shoes, so he actually just met us at home and rode with us, holding the washcloth to Sarah's mouth the whole way. By this time, Sarah was completely calm, just a bit perturbed at the fact that she had a piece of cloth pressed on her face.

I rushed her in, and they got us into a room fairly quickly, but then the waiting started. The ER wasn't that busy, but apparently everyone was taking their sweet time. We didn't really think about it until later, but the fact that Sarah pulled a TV onto her face and was still bleeding 25 minutes later, didn't seem to phase anyone that maybe she needed some pain meds or perhaps they should hurry their butts up. I think that was my fault though, I didn't push, because I know Sarah has a high pain tolerance, and while she might not have been complaining, I KNOW she was in some sort of pain. While we were waiting for someone to make a decision, Jeff pointed out to me that the top part of her mouth was also injured. I looked and saw that she was missing one of her top front teeth, and that one of the other ones was loose. I don't know why this revelation hit closer to home, but I immediately started crying. I just kept thinking, this kid has enough problems, and is most likely going to Kindergarden next year, and will be missing at least 3 teeth, possibly more. Maybe I should paint a sign that says "MAKE FUN OF ME" and send her to school with it. I know that's petty, and we've been fortunate that we haven't had any instances of prejudice when it comes to Sarah, but I know that window of innocence is slowly shrinking.

The doctor finally came in and said they wanted to do a cat scan to make sure she hadn't fractured any facial bones. I told them that they were probably going to have to sedate her for that, since I knew she wouldn't lay still. The on-call doc said that she was fairly certain everything would be fine. Because there was a Dora sticker on the outside of the machine and kids usually focused on that and didn't mind the loud noises and being strapped down. Right. As soon as they tried to move her bed to take her to the x-ray room, she started freaking out. I had to carry her, and once we got in the room, she become "Koala Sarah" and was crawling up my head. We attempted to hold her down and even used the large velcro straps they have, but the radiologist couldn't get a decent picture without her moving. So, back to the ER room we went, and waited some more. Finally, someone else came in with the radiologist and said that they were going to attempt the cat scan again, without sedation, but with an extra set of hands. I asked why they didn't just sedate her and they said something to the effect of that they didn't want to have to sedate her more than once. That gave me the impression that they were anticipating doing some sort of procedure that required sedation later on. I was ok with that. We all went into the x-ray room again, and a nurse wrapped Sarah up like a burrito and between her, Jeff & I managed to somewhat hold her still. Poor baby was freaking out. The radiologist thought he was able to get some decent pictures, and so back we went to the room.

Thankfully, during this time, a co-worker of Jeff's had come and volunteered to watch Emma & Katie out in the waiting room. I will forever be grateful to Kevin for that. :D We also noticed that one of Emma's friends from school was in another room, so I went over to talk with her family. Turns out she had been vomiting and was showing signs of dehydration, so she was just in to get an IV of fluids. Emma went in after awhile to say hi and visit. After the debacle of the cat scan, Jeff volunteered to stay with Sarah, so I could take Katie home for awhile. Emma decided to stay and visit with her friend. Jeff said he'd call when they decided anything.

After about 2 hours, he called and said that they'd decided to just put a few stitches in her lip, and gave us a referral to an oral surgeon to see the following day. I couldn't believe that's all they were going to do for her. I came up right about the time they were putting in the stitches, which they only did a few, and said they were leaving the end open to allow it to drain. Shortly after we were discharged. We went home and, no joke, within 30 minutes, Sarah had pulled out the stitches. Of course. I called the ER and the nurse said that should be fine, it would just take the lip a little longer to heal.

She seemed to do fine that night, and we gave her some Tylenol to help her sleep. We went to the oral surgeon the next afternoon, and he took a quick x-ray of her top jaw, to make sure the top front tooth hadn't been jammed in there, because we couldn't find it. We found her bottom tooth that had been knocked clean out, but weren't able to find any other. He said there didn't seem to be anything jammed in her gums, which was good. He also said that, because her permanent teeth were so high up in her jaw, there didn't look like there was any damage to those either.

So now it's a waiting game. She seems to be doing ok; we have her on a soft food diet for a few days, but now she's able to eat almost everything. I asked the oral surgeon if the loose tooth would firm up or fall out, and he said the odds were pretty even for either. Her gums seem to be healing well and she's taking it all in stride. Needless to say, there is no more TV in their room.

After all that, you'd think that karma would have let us be for a bit. But no. Today we decided, since the weather wasn't rainy or snowy, that we'd take a drive over to Midland and hang out at the mall. About a month ago, we had gone to the Novi mall, and had a small emergency: Sarah ran off. She has a tendency to do this and if we don't deadbolt the sliding glass door, she will go out back. Not normally a problem, but our backyard isn't completely fenced in. So, there we were, having gotten to the mall not 20 minutes before, and the girls wanted to play in the little jungle gym they have. It's not huge, with only one entrance, and both Jeff & I were watching all the kids. Still, sneaky, silent, ninja Sarah, was able to get past us. I noticed within seconds that she wasn't there, but I went into the enclosure to make sure she wasn't hiding. An older gentleman noticed me and asked if I was missing a little girl. I said yes, and he said his wife had her, and she'd been running down the mall. So, I took off, but couldn't find her. I saw a woman pointing me down the mall, but I still couldn't see anyone with her. She said Sarah had gone into a shoe store. I ran in there and grabbed her, my heart racing, and slowly walked back to the play area. Jeff met me about halfway there, she'd gone about 10 stores down. We decided to leave immediately. We just couldn't believe that, even with both of us being very diligent, she could have slipped past us. She could get a job as a spy, she's that good. And quick, too.

So, now I will be looking into getting some sort of electronic monitoring device. Sarah has a problem with impulse control. She doesn't think about things before she does it. I'm hoping that she'll grow out of this, but I'm not betting that will happen before Jeff or I have a heart attack, or something bad happens. She has enough things happen as it is, we don't need to be tempting fate.

Prayers for Sarah

Sarah has her annual cardiologist appt this morning. "Annual" really means it's been 2 years. She has a small PDA (Patent ductus arteriosus) that has been present since birth. But it's never caused her any problems, she's never been on meds for it. Sometimes they close on their own, which is why we didn't do anything about it 2 years ago. But, if it's still there, we will go ahead and get the catheterization done. It's not open heart, it's a short procedure where they go into a vein through the groin area and close the hole with a small mesh object. Since kids with DS sometimes have issues with being under general anesthesia, she'll probably stay overnight for observation. This wouldn't be so bad, but the only hospital who does this procedure is in Grand Rapids. So it's a bit of a drive.

Because this morning's procedure requires her being under oral sedation, she can't eat anything, which is pissing her off. I had to surreptitiously give Katie some breakfast so I didn't have 2 extremely ornery kids on my hands. But, Sarah is persistent, and tried to sneak some cold pizza from the fridge. I am however giving her some clear liquids, but it isn't helping.

While this PDA hasn't really affected her life, it might cause problems as she gets older if left open. So, some prayers and good thoughts would be appreciated this morning. :)

Special Exposure Wednesday

When I took this picture, I thought it was going to be a fabulous pic of the 3 of them. Then I actually uploaded it to my computer and got a look at Sarah's face. LOL

National Down Syndrome Awareness Month

October is National Down Syndrome Awareness Month. I am going to accept the "31 for 21" blogging challenge. Simply put, I'm going to try to blog everyday for the entire month of October. Get it? 31 for 21, as in Trisomy 21. :)

This has been going on for a couple years, but this is the first year I'm going to attempt it.

ETA: I started this post waaaay before October 1st, and then got slammed with life in general. So, I'm a little late, but I'm going to try to do this!! :)

Buddy Walk

Only about a year ago, our area of Michigan didn't have a local support group for families who had loved ones with Down syndrome. But, a wonderful woman, Sheryl, and her husband, Joby, decided that they wanted to start one of their own. I'm so very glad they did, because we have been able to meet a wonderful group of children and adults with Down syndrome from our area.
The Central Michigan Down Syndrome Society is having our 1st annual Buddy Walk on September 21st. The Buddy Walk isn't new, it was started about 13 years ago, with the idea of spreading awareness about Down syndrome. I believe there were over 250 walks around the country last year. Our team name this year is "Sarah's Superstars". Our goal is to raise $250 for our local group, to make packets for new parents, provide support, and encourage awareness and acceptance for people with Down syndrome in central Michigan.

You can click on the "ChipIn" icon in the sidebar. People are also welcome to come join us at the Buddy Walk. It's Sunday, September 21st at Chipp-A-Waters park in Mount Pleasant, MI. Everyone's welcome!!

Prayers for Emma Hope

This little girl is having major heart surgery this morning, even as we speak. Her parents lovingly adopted her and a little boy, both with Down syndrome, from Ukraine. This little girl is 5 years old but barely weighs more than Katie. She was given up on, she's been living with this heart defect her entire life. Doctors here in the US have told her parents that this surgery shouldn't be done, as it was unlikely that she would recover from it. But they persevered and found a doctor who gave them hope.

Just pray that this sweet little girl is able to continue her 2nd chance at life.

Surgery day for Kennedy

I haven't had a chance to post today, but Kennedy had her spine surgery today. According to her mom's updates, she's now out of surgery & in the ICU. Things are looking good and the doctor's said everything went well! Here's a link to her mom's blog: Life with My Special K's