Tag Archives: christmas

Here Comes Santa Claus (and Charlie)

Charlie did really well with the MRI on Monday. By the afternoon, she was feeling well enough to bowl.

Despite my high level of anxiety, the procedure went smoothly. First, she was given an oral medication to help her relax. She acted silly, laughed excessively, and played peek-a-boo with anyone who made eye contact. Afterwards, she was wheeled back and given anesthesia via gas. According to the nurse, Charlie counted down with the anesthesiologist before falling asleep. Once she was asleep, an IV line was put in and her airway was protected.

The MRI took a little over an hour. She slept soundly while she recovered from the anesthesia. Afterwards, she was very thirsty and recovered quickly. We should receive the results soon. 1380601_10102086778655719_168898052343210150_n

That afternoon, she felt well enough to bowl for her very first time.

Our week has been going well as we get ready for Christmas. Today, Charlie visited with Santa for the first time ever. She was afraid of Santa the past two years and had no interest in meeting him.

Charlie was excited as she stood in line. However, when it was her turn to see Santa, she was not so sure about things. But, she held it together while her picture was taken. Mostly, she was pleased with the candy cane she received afterwards.




Count Down To Christmas!


We watched the Polar Express together.

Friday night, we bought and put up our very first Christmas tree. Charlie was an enthusiastic participant. In addition to the tree, I hope to make gingerbread houses with her between now and Christmas. This is the first Christmas that she is able to actively participate in holiday themed activities. We are enjoying the novelty of it all.

During the tree assembly, Charlie shifted her focus between helping and running around the living room. At one point she babbled, “Mommy, mommy, mommy, I love mommy.” as she ran towards me. Stunned, I asked my husband, “Did she just say ‘I love mommy’?” He confirmed that, indeed, she had said it. It was the first time she verbally said that she loved anything.

I am counting down to Christmas despite the busy December.

Last week, Charlie was measured for Supra-Malleolar-Orthosis (SMOs). They are a smaller and a more conservative version of the AFOs she wore last year. The orthotics barely rise above her shoe line.

The SMOs were prescribed to correct her pronated feet, help her walk better, and will, hopefully, discourage toe walking. If she continues to toe walk, she may end up with hinged AFOs. She will get and be fitted for her SMOs in the upcoming weeks.

Next week, Charlie has an MRI scheduled for which she will be sedated. The MRI does not bother me, but the anesthesia and accompanying intubation does. I am a nervous wreck. Logically, I know it’s not a big deal and she will be fine. However, emotionally, I am terrified. There is not much I can do but have faith in my logic and trust Charlie’s doctors and nurses.

Nevertheless, this week, I may try to squeeze in a little extra quality time.

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Merry Christmas!

I hope everyone has a great holiday! My favorite part is seeing how far she has come.

These are pictures from this year:

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These are from last year:

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I should mention that we propped her up with that gift. She was unable to sit supported.

Stocking Stuffer Ideas That Won’t Break The Bank

The holidays are speeding towards us and we are on a tight budget. Like many families with kids that have special needs, we have added financial demands such as orthotics, endless co-pays, therapies, and special formulas. I want Charlie to have a great Christmas but need to budget when the opportunity presents itself.

By scouring the web, I’ve discovered that I can save money on stocking stuffers while giving Charlie things she will enjoy playing with. These are the ideas that I’m using for Charlie’s stocking stuffers.

NOTE: Please keep in mind that item size is an important consideration in order to prevent choking hazards. Always supervise children appropriately.

1) Pipe Cleaners These are great because they serve many purposes. The odd texture can be used in sensory play. To work on fine motor skills, she can bend the pipe cleaners to create shapes or put them in a container.

2) Giant Buttons Due to Charlie’s petite size, her hands are often too small for “typical” toys. She enjoys playing with things that fit her tiny hands. She can place the buttons in containers, dump them out, sort them, or whatever ideas she comes up with.

cup3) Cups I plan on browsing the shelves of the local dollar store for cheap plastic cups. Charlie likes to bang cups together, fill and dump them, nest them, stack them, and use them in water play. It is an added bonus if I can find cups with removable lids. Cut holes in the lids create more of a challenge for Charlie when she puts things in the cups. 

4) Craft Pom Poms This is another idea that is great for sensory play. Again, the possibilities for play are endless.

octipus5) Squeaky Animals and Ninja Ducks Charlie loves her small rubber squeaky toys and ninja ducks. She will be receiving more of these.

6) Bag of Feathers These provide more sensory play and exploration opportunities.

7) Magnetic Alphabet Letters Charlie plays with the refrigerator magnets almost obsessively. This is an extension of that idea. In addition, Charlie’s dad has a magnetic write on/wipe off board in his office that will compliment this gift nicely.

music therapy 28) Shakers Charlie loves the maracas at music therapy. This idea was drawn from that.

9) Pieces of Textured Fabric I’ve raided the scraps bin at the local fabric store. I’ve cut the scraps into equal size squares. I’m sewing together the corduroy, felt, taffeta, calico, velvet, fleece, etc to make a “book” of fabrics. Despite her tactile defensiveness, she is curious about different textures. I haven’t decided whether or not I’m going to spay the pieces to add scent.

10) Giant Beads Like most things on this list, these have many uses. She can work on fine motor skills by threading pipe cleaner through the beads. She can sort, learn to count (eventually), or make a shaker with the beads.

Christmas lights

Christmas Imperfection

Forget Christmas lists, elf on the shelf, or even pictures on Santa’s lap. Perfect Christmas? I don’t even aim for it. We operate with lowered expectations. Don’t get me wrong, I enjoy the pageantry, the lights, and excitement of the season. However, we aim for holiday survival and hope to have a few fun moments.Christmas lights

For example, I have no idea what the “must have” toys are this season. I was not one of those moms breaking down doors on Black Friday. To build Charlie’s Christmas list, I combed through special needs catalogs and asked Charlie’s therapists for ideas. I’m a boring mom. Charlie will be getting toys that help her develop the skills she is struggling with. She seems to enjoy the toys as much as the “must haves”.

Admittedly, I look forward to Charlie’s first picture with Santa. This year is not her year. I determined this by feeling out the situation when Santa first started appearing at the mall. We stood back and watched while other kids got their pictures taken with Santa. Charlie watched curiously with narrowed eyes. When Santa walked by a few moments later, she burst into tears and grabbed on to me. That moment was an indicator that this is not the year for Santa pictures.

Christmas wreathAdditionally, I would like to have a Christmas tree. However, it is another impracticality in our house. I don’t want to worry about the cat eating needles, Charlie (or the cat) climbing it, broken ornaments, or the dog knocking it over. Instead, Charlie and I made a wreath for the front door. The adventure and story involved made the wreath just as sweet as the tree. Charlie Wreath Making

I’m not against Christmas or holidays. I merely lack the desire for Christmas perfection (or any perfection). Maybe, it is because I’m tired from running to appointments and therapy. Or possibly, the heartbreak of Charlie’s early birth has left me feeling jaded and cynical about the idea of a perfect anything. Most likely, it is because I know having Charlie with us for Christmas has already made it perfect and the rest is trivial details.

Charlie swinging after yesterday's wreath making workshop at Powhatan State Park.

Charlie swinging after yesterday’s wreath making workshop at Powhatan State Park.

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