Monday, January 10, 2011

Saturday, January 8, 2011

More from the School Christmas Program Day

I loved these two pics of Emeline with her Papa. The third one was taken at the diner. Emeline stole Papa's hat while we were waiting for our food to be delivered. LOL



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Emeline's School Christmas Program

December 16th was Emeline's Christmas Program at School. Grandma and Papa and Aunt Joy came over from Illinois for the day, just so they could see Emeline sing with her class. How neat was that?!? Emmie knew they were coming, and she was SO excited. I was a little nervous, because on the 15th, it started snowing. And kept snowing. And I know neither of my parents are great fans of "Let's take off on a road trip in the middle of winter with the snow comin' down" trips. So I was mentally preparing myself that they were probably going to call and say they had decided not to come. But the call never came. And when I called to ask where they were, they were almost to my house!

So they came, and we went and saw Emeline perform. Her class sang two different songs. This was Emeline's third year being in the school's Christmas program. The first year, her teacher had to physically hold her up on the stage, because she kept trying to come down. Last year, she stayed up there, but didn't sing. So I had already given myself the pep talk that even if she didn't "do" anything, it was okay. But she surprised me! She stood silently there through the whole Chipmunk's Christmas song, "Santa Don't Be Late," while her class sang, but when it came to the part, "[someone, I don't remember who] wants a Hula-hoop", she opened her mouth and sang the words "Hula Hoop!" She opened her mouth and said the words! I was so surprised; I think my jaw dropped open! Other parents may have seen a child who only sang two words, but *I* saw a child who SANG TWO WORDS!!! She knew the words, she knew when they came in the song, and she came in at exactly the right time! I was SO proud! and Excited! That, my friends, is progress! Yay!!!

After the program (which was only about 10 minutes), all of the guests were invited to stay and eat lunch in the classroom, so we did. Emeline was able to show Grandma and Papa and Aunt Joy her cubby, and her chair, and her favorite places in her classroom. :) After we left there, we all agreed we were still hungry (since the lunch consisted of a ham sandwich and half a banana LOL), so we went to the diner on The Square and ordered some lunch. LOL



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Let's see...November, October....Is December Next?!?

It is here! LOL

Early December found us making back-to-back trips to Iowa City two days in a row, for appointments with the ophthalmologist and the dentist. We received good news from the ophthalmologist--no changes in Emeline's eyes, and no signs of cataracts. Having Down Syndrome puts her at greater risk for cataracts, as does taking steroids every day (which she does), so it is something we monitor twice a year. Her eye glasses Rx didn't change, so that was good news. Since I had just replaced her "lost" glasses in October, I was really hoping NOT to hear, "Oh, by the way, her Rx has changed." So that was very good news!

Her dentist appointment wasn't so great. She had two cavities. I cried.
I didn't cry because she had cavities. I cried because they had to strap her down with the pappoose board, and at that moment, I was just SICK of having to stand by and watch my girl go through one more ANYTHING. How silly of me to cry over a dentist appointment. But Em didn't know what was going on. It didn't matter that they were simply trying to brush her teeth. All she knew what that those people in the white coats are messing with me again, and I.DO.NOT.WANT.TO.BE.MESSED.WITH.ANY.MORE. PERIOD!!!!! And I just felt bad. I tried to hold them in, but the tears just rolled silently down my face. The dentist noticed and said, "Mom, I promise you, we're not hurting her." I told him, "I know you're not. She has just been through too many tests, pokes, and scans that no matter what it is, she's going to fight it. She is just DONE." So they did what they had to do, and I sucked it up, and as soon as we got out of there, we headed for the playground outside the clinic. And amazingly enough, all was instantly right with the world once again, when I heard the laugh, and my sweet girl say, "Fun, Mom!" as she climbed the steps to go down the slide, and smiled that beautiful smile. Even with two cavities in front.

Random from the last of the October pictures

This is my potato bin. This is also an example of a typical "Emeline" stunt. I went to get a few potatoes from the bin, and when I removed the lid, this is what I found. She had taken out the bag of potatoes (there were only a few left in it), and replaced it with her baby doll. She had also thoughtfully dropped in a sweater, I guess to serve as a cushion so the doll didn't have to sit on the hard wood. I have no idea why Emeline does this, other than she likes to hide things. Like glasses. And cell phones. And tv remotes. And purses. And wallets. And baby dolls. Believe me when I say that life is NEVER boring in this house. LOL

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Trick or Treat!

My camera battery died after this one picture, so it's the only one I've got. :( This was the first year Emeline has been trick-or-treating. We've never taken her, since we don't really know many people where we live now, and we're out in the country.
Emmie's costume was a puppy, which she thought was WONDERFUL. LOL We only went to a few houses (the people who had been to her party earlier that day, in fact). Instead of begging for treats, we did reverse trick-or-treating---We TOOK treats with us! We had great funny "treating" each of Emmie's special friends to farm-fresh eggs that we had brought with us from home, and left-over birthday cake from the party earlier that afternoon! They were all thrilled with their Halloween "Treats!" I told them, "We're taking Em out egging for Halloween!" LOL

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Last of the Birthday Party Pics...Special Friends

In addition to family, Emeline has some other very special friends at her Papa's church. We are very blessed to have each of them in our life!



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More Birthday Party Pics...




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Oh, Man!!!

I just realized while looking back through the blog, that I somehow missed posting about Emeline's birthday party in October! Since that's kind of a big deal, I'm going to go ahead and add those pictures now. So much for having a blog that goes in order! LOL

Although her birthday is 10/10 (Yes, Emmie's 5th birthday was 10/10/10!), we didn't have her party until 10/31. We always have her party at Grandma and Grandpa's house in Illinois, so our family and friends can attend the party.



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Yay!!! No Hospital Stay for Emeline this time!

Emeline started December off with a bang. On the evening of November 30th, she fell asleep around 4:30 pm and slept all night through. I had to wake her up at 8:00, and even then she didn't want to get up. That is not normal for her at all. She is usually up much later at night, and up much earlier in the morning, so I was a little concerned. She fought me when I tried to get her up, and she stumbled more than walked down the hall to the bathroom. After she'd been up just a few minutes, she started vomiting. By then I knew the signs. I called our local Ped's office and told them I was on my way. We have been through this before, so we have a pre-arranged agreement that they will give her a shot if/when she needs one. They gave her her shot of hydrocortisone (solu-cortef) right away, and then I called our Endocrinologist's office in Iowa City. I told his nurse that Em had slept for over 15 hours, wasn't "waking" well, and had just vomited several times, but that she'd had the shot, so I was hoping I had caught it in time. She said we'd have to wait and see; she wanted me to call back in the afternoon and we'd talk then about whether or not we needed to head to the hospital. Meanwhile, I gave her a triple-dose of her oral hydrocortisone at the regular times (which is what I'm supposed to do), and watched her closely. And--drum roll here please--we did NOT have to go to the hospital! WooHoo! That was really a source of excitement for me, as it was the first time in the 14 months since Emeline had been diagnosed with Addison's, that she did NOT end up in the hospital from an Addisonian crisis. It gave me hope, that finally, FINALLY I was learning to catch it soon enough that we could handle it at home, and not have to go to the hospital in fear every time she threw up. (After almost losing her twice in the hospital because of Addison's, it is not something I took lightly.) So I am thrilled to report that, for the first time, we survived an Addisonian crisis and managed to avoid the hospital! We continued triple-dosing for 2 more days and then weaned back down to her regular dose, and Em came through it just fine! YAY!

What a way to welcome December!

More from November...Sleep Study Number 2 and Aunt Caryl's Funeral

On the Monday after Thanksgiving, Em and I hit the road again. (Yes, we do that a lot.) My Aunt Caryl had passed away, so we were going back to Illinois for her funeral. Things got a little complicated, however, due to the fact that Em had a follow-up sleep study already scheduled for that Monday night---in Iowa City. But I was supposed to sing and play the piano for my Aunt's funeral, and I really did NOT want to do that without practicing with the person I was playing for (my sister, Joy), so I really needed to go to Illinois, too. So...we left home after Emmie got out of school, and went to Illinois, where we stayed for about 2 hours---long enough for Joy and I to practice until we were both comfortable with the songs, and then Emmie and I headed to back to Iowa again, to the hospital in Iowa City.

The idea of a C-Pap Machine isn't new to Emeline; Bill uses one every night. She has messed with his more than once, putting the mask on herself, or on her baby doll. So I had hoped that it might not be a HUGE ordeal, getting her to wear the mask. Well, she screamed a good while and kept trying to take it off, but she eventually wore down and gave up. It was definitely another one of those times where I wished she was able to tell me what she was thinking/feeling. (Other than, "No, Mom, No! Hep, Mom! Noooooo!" That is just heart-breaking. We have been through it too many times to count, and it never gets easier, even when you know it's something your child NEEDS, and something that will HELP them.) Anyway...I *think* that she was scared because she couldn't feel her nose, when she had the mask on, so maybe she was thinking that her nose was gone, or something? I don't know, obviously. But each time she woke up, she said, "My nose, Mom," and then would reach over to me, and feel MY nose. I just kept telling her that her nose was still there, it was just under the mask, and she immediately calmed down and went back to sleep, so I don't know if that was it, or not. All I know is that it calmed her down. Although she did wake up several times through the night, overall, I considered the experience a success. We left at 5:30 Tuesday morning, and headed back to Illinois.

The funeral was as nice as a funeral can be, given the circumstances. My Dad conducted the service; I imagine that was one of the harder funerals he has presided over, given that it was his sister. Funerals are not one of my favorite things to attend, but my Dad does a wonderful job of using those times to remind us of the things that REALLY matter.
My Aunt Caryl was ready to go; there is peace and comfort in knowing that.

After the service, I enjoyed having the chance to visit with many other aunts, uncles, and cousins at the funeral dinner. I especially enjoyed watching Emeline interact with some of my relatives. It is always interesting to me, to watch other people watch her. I love to watch their expression transition from curiosity and uncertainty to joy, and for anyone who gives her half a chance, that is what this girl does to people. What a gift she is!

Here are the pics from her second sleep study, where she had to wear the mask.




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Going Back to November...Thanksgiving

Emmie and I went to Grandma and Grandpa C's house the week before Thanksgiving for a visit Wednesday through Saturday. Em loves her monthly visits with Grandma and Papa, and looks forward to it every month.

The next week, our family headed south to Oklahoma to celebrate Thanksgiving with Bill's side of the family. We spent Wednesday and Thursday at Grandma and Grandpa D's house. We enjoyed being able to spend time with Grandma and Grandpa, Uncle David and Aunt Jessica, and Aunt Donna, and all of the cousins. Although Emma enjoyed playing with all of her cousins, Luke seems to be her favorite. (They are only 5 months apart.) We all enjoyed playing Spinner, a family tradition we always look forward to. :) I was disappointed that my camera's batteries went dead while were were in Oklahoma, so I only got a couple of pictures. Here they are:

Emeline getting her Spinner tiles set up
Emeline playing Spinner with Aunt Jessie
Emeline with her Papa

I'm back!

My computer is working again! I'm so excited!!! Now to get caught up on blogging... :)