tag:blogger.com,1999:blog-34579994882374640702024-02-20T06:49:26.707-05:00Caring for CallieA mommy's journal about her very special baby girlUnknownnoreply@blogger.comBlogger114125tag:blogger.com,1999:blog-3457999488237464070.post-75413154968951213252016-01-27T19:04:00.001-05:002016-01-27T19:04:44.504-05:00Overdue Callie UpdateI'm sorry I have completely fallen off the blog wagon. :( Eventually I hope to start posting more. <div>
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Callie is 6 years old now and doing very well! She is in gen ed kindergarten (!) with support and is holding her own. It is starting to become more challenging for her to keep up as the curriculum picks up during the second half of the year, but she is doing her best. We are already starting to work on a plan to get her set up with the appropriate supports to make sure she is successful in first grade. It's challenging because she falls into a crack in the school system... She is beyond what the special ed classrooms offer, but gen ed is difficult. </div>
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Callie's main challenge continues to be severe Childhood Apraxia of Speech. She still has very little speech... maybe 30 words/approximations. She uses expressions, gestures, signs, and her iPad "talker" to help get her point across. She is a unique case in the fact that she understands absolutely everything, but has such minimal expressive language. It's amazing she does not have behavioral issues since there is so much trapped inside her pretty little head. I can only imagine how much she has to say. :( Callie continues to go to private speech therapy multiple times per week and we are currently using her sessions to focus on better use of her talker. We haven't given up on speech, but realize independently initiating use of her talker is critical for school. </div>
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At this point in time, most of her other challenges are either resolved or not causing any issues. Her seizures have been successfully controlled with Keppra for the last year and a half. Her EoE seems to have resolved, although we still have to have one final endoscopy to confirm. She still wears ankle braces, but they have been reduced from AFOs (tall braces up the back of her calf) to SMOs (low braces just to her ankles). She still has her G-tube, but is successfully eating orally. Overall she is doing great!</div>
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Hope you enjoy these pictures of Callie in the snow. We just survived the 2016 blizzard (36 inches!). :)</div>
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Unknownnoreply@blogger.comtag:blogger.com,1999:blog-3457999488237464070.post-47837442825627522232015-07-04T15:40:00.000-04:002015-07-04T15:40:17.369-04:00Happy 4th of July!We are still here! Callie is doing amazing and there is so much to share.<div>
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For now, I just wanted to share my super proud mama moment from today... Callie rode a bike in our July 4th parade!! She has been working on pedaling for months and months (years?). She just proved again that she will get there, in her own time. Love this girl so much. She makes me so incredibly proud. <3</div>
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More soon! xoxo</div>
Unknownnoreply@blogger.comtag:blogger.com,1999:blog-3457999488237464070.post-35089049119394024032014-04-20T22:56:00.000-04:002014-04-20T23:05:14.586-04:00Happy Easter<div style="text-align: center;">
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<br />Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-3457999488237464070.post-11461304548216365942014-03-07T22:54:00.000-05:002014-03-07T22:54:09.973-05:00What a winter!We have had quite a winter here in Northern Virginia! By the standards of my friends farther north, it has been nothing, but VA is not very good at dealing with cold weather and snow removal. We live in the more densely populated eastern part of our county and often get snow days due to the conditions of the roads in the more rural western region. The other day was our 13th snow day!!<br />
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Callie did great in the snow this year! I really thought she would have a hard time moving around and spend most of the time falling, but she was able to walk across the yard this week in about 8" inches! It was wonderful to see the kids having a good time together.<br />
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There is so much more to share and I hope to find time to sit down and write more soon!Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3457999488237464070.post-76405851849412593212014-01-11T23:26:00.000-05:002014-01-11T23:26:21.183-05:00Callie at 4 (and a little)<div class="MsoNormal">
<span style="font-family: Arial, Helvetica, sans-serif;">It is so good to finally sit down and write an update about
Callie! I think about writing here just about every week, but
can never seem to carve out the time. My
days are filled with work, appointments, taking care of the kiddos, keeping up with the calls
& paperwork required for Callie’s care, and keeping the house
together. I don’t have the energy in the evenings and try to rest/recharge on the weekends. So that is why many months have passed since
I have posted anything substantial! But
it is good to be back. :-)<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Where to begin…. Well, Callie is now 4 years old!! She is
growing up into this amazing little girl.
Sometimes I just stare at her in disbelief. I am in awe over all that she is. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Like I did </span><a href="http://calliebloggie.blogspot.com/2012/12/callie-at-3.html" style="font-family: Arial, Helvetica, sans-serif;" target="_blank">last year</a><span style="font-family: Arial, Helvetica, sans-serif;">, I want to document where she is
in terms of development at 4 years old (and a little, since I am late with this post!):</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Stats</b>: Weight 30.2 lbs
(10%), Height 38.25 inches (10%), BMI 25% --<b> </b>We have kind of stalled out when it comes to weight. She has unfortunately not gained any weight
in the last 6 months. But this does not
surprise me because there have been big changes this year with her
feeding. She started out the year
getting most of her nutrition from tube fed formula at night and high calorie
blended food during the day. Gradually
we transitioned until her night feedings were eliminated around May. She was then eating orally and getting her
blended tube food. Around that time she
was getting quite plump (for the first time in her life!). This is when she weighed in at 30
pounds. In the following months her oral
motor skills required for eating improved dramatically until we were able to
phase out almost all of her blended food.
She now eats just about everything orally. But as we phased out the feeds, her calories
decreased and she leaned out. I do not
feel too alarmed about her not gaining weight because I feel like her weight
was artificially high last spring due to her tube feedings. I believe she is currently at a healthy place
and her growth is similar to where Owen was at 4 years old. Their body types are the same and I think
Callie is where she naturally should be. Unfortunately, Callie’s pediatrician
is slightly concerned and wants me to start taking her to a nutritionist again
to confirm she is getting the calories she needs. I have mixed feelings about this. On one hand, I am happy to take her to any
specialist and typically follow our ped’s wishes, but on the other hand, I feel
like this is somewhat of a waste of time.
She is eating well. She still
can’t chew difficult foods, but overall she can eat most things (with care…
pieces are cut small, soft foods are selected, and we monitor her closely to
make sure she is not at risk for choking).
I just don’t think she is capable of growing into a big girl (Owen is
not big either). So we will see… I will make
the appointment, but don’t plan to go to anyone regularly as long as Callie
continues to eat well. I may just start
supplementing with whole milk and blended food through her tube more often if
she continues to stall out at 30 pounds.
We also continue to administer meds and give water through her tube.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Gross motor skills</b>: Callie continues to slowly make progress
in this area. She has enough motor
skills to be functionally independent, but her gait continues to be off with
her toes coming down first and then extension in her knees. She wears AFOs all day to continue to help
correct these issues. She also cannot
run and is barely able to jump despite taking it upon herself to practice
nearly every day. She continues to LOVE
trying to jump. She has mastered the
trampoline and now gets about an inch of air off the ground. She is one determined little girl and will
get this before long! She is also still
working on learning to safely walk down stairs independently. She knows how to walk down, but can fall
easily. She has made progress
with her stability and now more easily walks across grass, mulch, and other
uneven surfaces. She can walk up
playground steps and get herself situated to come down the slide, and can also
climb up playground ladders with assistance.
Overall she is much safer outside with less falls. All of this said, while observing my
18-month-old niece over the holidays, I realized Callie is still way less
stable than what is typical. For
instance, as I watched Rosa dance in her dress shoes in our kitchen, I realized
Callie would never be able to walk across our tiled floor in dress shoes, let
alone dance, without slipping and falling.
But this is okay. This is the
girl that we were told may never walk.
So I tell myself even if she never improves beyond where she is today, I
am over the moon that she is on her feet and can move around independently. Callie continues to attend two PT sessions
per week… one privately and one at school.<o:p></o:p></span></div>
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<span style="font-size: x-small;">Check out her progress on her trampoline! Compare this new video to what I posted <a href="http://calliebloggie.blogspot.com/2012/09/trampoline.html" target="_blank">here</a> in September 2012!!!</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Fine motor skills</b>: Callie is doing well with fine motor
skills. She loves to cut paper with
scissors and trace shapes and letters.
I’ve lost track of exactly what is typical at this age, but feel she is
doing pretty well. Her speech app also
requires good fine motor skills for its small icons and she does very well
without a key guard. She holds a pencil
or crayon properly, although recently has started switching back and forth
between her right and left hands. I’m
not sure what that is all about and hope she settles with her right side soon. Callie continues to attend two OT sessions
per week… one privately and one at school.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Speech skills</b>: I’m sad to say after reading my update from
last year, not much has changed. We
still have almost no words and pretty much the same limited sounds. Her SLPs can get more out of her, but nothing
comes spontaneously except “Baba” for Allen and “ba” for bus (every time she
spots a school bus). Every once in a
blue moon she will say “mama” when I arrive home, but when calling to get my
attention she does not say mama. One
exciting development within the last month is getting “me” out of her during
sessions with one of her therapists. Speech
is our main area of focus. We are
hitting it as hard as we can right now.
Callie receives five hours of speech therapy a week! Three of the sessions now use PROMPT*. We are holding out hope that this might be
our miracle therapy. Everyone feels she
has a lot of potential. It helps that
her receptive language is on target and she is a motivated little girl. Please continue to pray this intensive
therapy is able to work with Callie so that we can finally hear her no doubt
beautiful voice and all that she has to say.
We are also continuing to pursue using her iPad and Speak for Yourself
app, but admittedly it often gets left behind.
One goal of the new year is to keep the iPad with her at all times and
hopefully see this communication tool used more regularly. We just purchased an iPad Mini in an attempt
to make her device smaller and easier to carry and keep with her. Look for more updates on our progress with
AAC in the coming months.</span></div>
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<a href="http://4.bp.blogspot.com/-0DdYbACXxBA/UtDFM5gEONI/AAAAAAAAAsw/KtZh6OvpoqA/s1600/ST+with+Judy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-0DdYbACXxBA/UtDFM5gEONI/AAAAAAAAAsw/KtZh6OvpoqA/s1600/ST+with+Judy.jpg" height="320" width="240" /></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><b>Social & Cognitive skills</b>: Like last year, this continues
to be her strongest area. She loves the
other kids at preschool and has a few little friends. Cognitively she seems to be doing very well. She is starting to recognize letters and does
great with basic preschool activities involving colors, matching, etc. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-size: x-small;">Parents were invited into her class in November for American Education Week. Here is a little video of I took of her during role call at circle time. The teacher asked if she was at home or school today and she quickly answered with her talker!</span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Like I have mentioned before, I typically do not think too
much of Callie’s delays and challenges. I chose to instead focus on what she
CAN do. That said, I still have moments when things
hit me. It was such a blessing to spend
the holidays with my nieces, but I found myself looking in awe at Rosa (18
months) as she maneuvered around the house with ease. She quickly scrambled up and down the
stairs. She ran around and was quite the
dancer! One afternoon, she was
interested in Callie’s trampoline, but had never been on one before and didn’t
know what to do with it. Callie proudly
climbed on it and demonstrated her jumping skills. Rosa watched her once, and then climbed up
herself and immediately started jumping.
Moments like these sometimes hit me hard. I watched 7-month-old Anna figure out how to
transition from sitting to crawling, and back to sitting within the course of
one week. I watched and appreciated all
of her milestones that no doubt no one else noticed – the way she reached across
midline for a toy, transferred it to her other hand, brought it to her mouth,
lost and caught her balance, etc. While
watching I felt happy and relieved for my dear sister that Anna and Rosa were
so easily meeting all of these milestones, then sad when I realized how hard it was
for Callie to accomplish each of these tasks (all with the help of hours and
hours of early intervention therapy), even sadder noticing her much younger cousin already passing her up in the areas of speech and gross motor skills, and then happy again thinking about
how far Callie has come. I do not take
anything for granted and say a prayer of thanks every single day that we are
where we are today. Every time I write
about Callie’s development we are moving FORWARD. It might be slow, but we are getting there. She seems to eventually accomplish everything
in her own time. For that I am so
incredibly grateful.</span></div>
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<span style="font-size: x-small;">Callie & Anna (7 mo.)</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"> </span><o:p></o:p></div>
<span style="font-size: x-small;">*</span><span style="background-color: white; color: #333333; font-family: Arial, sans-serif; font-size: x-small; line-height: 115%;">PROMPT is an acronym for
Prompts for Restructuring Oral Muscular Phonetic Targets. The technique is a
tactile-kinesthetic approach that uses touch cues to a patient’s articulators
(jaw, tongue, lips) to manually guide them through a targeted word, phrase or
sentence. The technique develops motor control and the development of proper
oral muscular movements, while eliminating unnecessary muscle movements, such
as jaw sliding and inadequate lip rounding</span><br />
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3457999488237464070.post-81754673637472501272013-10-31T21:15:00.000-04:002013-10-31T21:15:20.699-04:00Happy Halloween!<div class="separator" style="clear: both; text-align: left;">
Happy Halloween from Princess Callie!</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3457999488237464070.post-41745527707205282212013-10-09T14:17:00.001-04:002013-10-09T16:46:15.113-04:00Return of Seizures<span style="font-family: Arial, Helvetica, sans-serif;">This update is long overdue but I wanted to make sure to document this turn of events. In May, we started noticing Callie's right arm twitching periodically. It just seemed like an involuntary muscle spasm, but after it reoccurred several times over a three week period our fear of seizures quickly returned. On two occasions she seemed off balance around this time and overall had more falls than usual. Fortunately, Callie already had her annual checkup scheduled with her neurologist Dr. Pearl at that time, so we were able to see him immediately. But what was supposed to be a light-hearted appointment marveling over her progress over the last year ended up being a serious discussion of whether or not the twitching was a sign of seizure activity, and if so, what type of seizure and how it should be treated. Long story short, we ended up completing an EEG which not surprisingly showed nothing (the 1 minute episodes were happening two, maybe three times per week, so obviously unlikely to catch during a 30 minute test). Our options were to be admitted and hooked up to an EEG until the activity was detected or begin medication without proof. I trust Dr. Pearl completely and in his opinion these were focal/partial seizures (which are common in PMG kids), so we opted to go ahead and start a med. We were given the choice of Keppra, Lamictal, or Trileptal. All have possible unpleasant side effects. We chose Keppra and seemingly made the right choice because the episodes immediately stopped. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It was difficult going through this experience in May. I cried on and off the day I admitted to myself we were probably dealing with seizures again. And it was tough going through the neurology appointments. We were there three times in two weeks. It brought back very painful memories of the beginning of this journey when we were dealing with infantile spasms and her newly diagnosed polymicrogyria. But I am grateful to have a neurologist we trust and extremely thankful to have immediate success again with a seizure medication. Please pray it continues to work, as sometimes these meds begin to fail. If the seizures stay away for two years we can try weaning off medication again. Since this update is late, its been five months so far. We are praying and counting down... 1 year and 7 months to go. </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3457999488237464070.post-38206186422690254582013-09-19T13:33:00.000-04:002013-09-19T13:40:26.649-04:00Back to School!<span style="font-family: Arial, Helvetica, sans-serif;">Callie started her second year of special ed preschool at our home elementary school. I really like the fact that she and Owen are in the same location and their classrooms are right down the hall from each other. This year Callie is in an afternoon class five days a week. A big yellow school bus picks her up and drops her off right in front our our home. She loves it! Of course the ride is only about 1 minute long because the school is right down the street from our place. :) She has one new teacher and all of the kids are new to her, but she has had no problems adjusting. The teachers are making a good effort to use her talker in class and she seems to be jumping right back into her school-provided therapies. Also, one of Callie's new classmates has PMG! This is the first time we have ever met another child with the same diagnosis! Their symptoms present differently, but it is still neat to make a connection in person with another PMG family. Overall, I think Callie is going to have a great year! </span><br />
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">(Can you believe how grown up she looks in this picture?!?)</span></div>
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3457999488237464070.post-37114782704019428212013-08-27T09:55:00.000-04:002013-08-27T09:55:25.767-04:00AFOs and Walking<span style="font-family: Arial, Helvetica, sans-serif;">Callie continues to wear AFOs to help her walk properly. We wear them as much as possible and always have them on when we leave the house. The other day, however, we were at the airport about to board a flight, so I let her go without them for her comfort on the plane. She happily walked through the airport independently sans braces and I took a little video to document her form. She is doing great, but obviously will need her AFOs for quite some time. But that's okay... Even if this is as good as her form ever gets, I am thrilled. This is the girl who is not supposed to be walking!! :)</span><br />
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<br />Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-3457999488237464070.post-37314653329373936452013-08-11T18:10:00.002-04:002013-08-11T18:10:56.242-04:00Ask and you shall receive!She asked for it, she got it! :)<br />
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3457999488237464070.post-33586187022828060022013-07-12T23:28:00.000-04:002013-07-12T23:28:53.821-04:00Bittersweet Goodbye<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: Arial, Helvetica, sans-serif;">Callie started receiving night nursing care when she returned home from the hospital a little
over two years ago with a NG feeding tube. At first it was essential...
She had long night feeds through her tube and had to be watched throughout the night
for safety. If the tube came partially out while she was sleeping,
formula could be pumped into her lungs and this was obviously very dangerous.
After 5 months, she was switched from a NG to G tube. The G tube
was so much better, but she is a very active sleeper and often became tangled
in the cord, sometimes around her neck. <span style="font-size: small;">By
this time Callie's nurses were already like family, so we were glad they could stay and
continue to keep her safe at night.<o:p></o:p></span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">The nurses became very
attached to Callie and she loved them in return. Miss Yolander joined us
at the beginning of our feeding tube journey and over the course of two years
watched Callie grow from 16 to 32 pounds. She became very protective of
Callie, often referring to her has her baby. She was in
charge of training any new nurses/subs for Callie's case and would give
strict instructions for taking care of Callie, almost to the point of
intimidating the new nurses I was told. All of the staff at the agency knew about
Yolander's baby. :) Miss Yolander also kept Callie stylish with
super cute hairdos in the mornings. Her teachers and therapists
would comment on her cute updo's and I would have to confess that it was all Yolander. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Miss Zeinab was with us
on the weekends for nearly the whole two years. She taught Callie her
dance moves and spoiled Callie by letting her use her phone to play games and
watch cartoons. They were also known to party into the night on weekends.
We often heard giggles and laughter way later than we should have. :)<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Miss Christina was the
newest addition to the team, but it quickly felt like she was there the whole
time. As a mother of four, she had a special touch with Callie and they
were soon close. They would read books together past bedtime and just
seemed truly happy together. This spring Miss Christina gave Callie a
cute haircut and taught me how to do the same, although I have not been brave
enough yet to give it a try. <o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">We were so fortunate to
have such a great, caring nursing team. At one point they picked up on her apnea
symptoms and suggested having her checked out, which led to sleep studies and
an apnea diagnosis, which lead to a tonsillectomy and adenoidectomy. They
also monitored Callie for seizures, although none happened on their watch.
Overall it was a huge blessing to have them be a part of Callie's team.
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<span style="font-family: Arial, Helvetica, sans-serif;">It was bittersweet when
we learned this part of Callie's care was ending. At our last GI
appointment, the doctor was thrilled with Callie's growth. She is now
firmly on the growth chart, holding steady at about 35% (up from 0%!). Her
most recent growth is definitely due to the introduction of a blendarized diet
(which I wrote about <a href="http://calliebloggie.blogspot.com/2013/02/blendtec-and-callies-blendarized-diet.html" target="_blank">here</a>). We had been slowly adding more calories during
the day and cutting back on formula at night, and when I went over everything
with the GI, he instructed me to move forward and cut the remaining night feed.
This was amazing news... After more than two years, Callie would no
longer need to be fed by a tube at night. No more hauling a pump, bags, formula
and miscellaneous supplies while traveling. No more accidental bed feedings at home or on vacation (Hilton Parc Soleil… still so
sorry about that!). But sadly this also
meant we had to say goodbye to Callie’s nurses.
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="font-size: small;">We miss you Yolander,
Zeinab, and Christina. Thank you for
everything you did to care for Callie over the last two+ years. </span>We are very grateful for your service to our
family and wish you the best. <3 </span></div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3457999488237464070.post-75194276197426634652013-05-14T12:37:00.000-04:002013-05-15T12:36:51.023-04:00Apraxia Awareness Day<span style="line-height: 115%;"><span style="font-family: Arial, Helvetica, sans-serif;">Today is Apraxia Awareness Day!</span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 115%;">Apraxia is among the most severe speech and
communication problems in children.
</span><span style="line-height: 115%;">Affected children have difficulty planning and producing the precise,
highly refined and specific series of movements of the tongue, lips, jaw, and palate
that are necessary to produce clear, intelligible speech.</span><span style="line-height: 115%;"> Callie's case is considered severe. While some days this gets me down, lately I have been filled with hope about the future. </span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 115%;">I recently joined a Facebook Group for parents of children with apraxia which has over 10,000 members! We are clearly not alone on this journey. Other parents are regularly posting videos of their children showing their progress. The video below caught my attention. Addison is an adorable 4 1/2 year old girl (one year older than Callie). She has severe apraxia (like Callie). She has speech therapy 3 times a week at school and 2 times a week privately (like Callie). She had zero words until she was almost four (like Callie so far). After seeing a SLP who specializes in apraxia, she made phenomenal progress in just 9 months (we are on a waitlist for a SLP who </span><span style="line-height: 18px;">specializes</span><span style="line-height: 115%;"> in apraxia!). </span></span><span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 18px;"> </span></span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><span style="line-height: 18px;">I </span></span><span style="font-family: Arial, Helvetica, sans-serif; line-height: 17px;">am so happy for Addison's family and will continue to hold out hope for ours!</span><br />
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<span style="font-family: Cambria, serif; font-size: 11pt; line-height: 115%;"><br /></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3457999488237464070.post-61624993543324341612013-05-10T09:28:00.000-04:002013-05-10T09:28:28.518-04:00Happy Nappy<span style="font-family: Arial, Helvetica, sans-serif;">Callie still takes an afternoon nap. We wish her a "happy nappy" and often sing Happy Nappy to the tune of Happy Birthday when laying her down. We have a web cam in her room and have noticed lately she prefers to play during half, sometimes all, of her nap time. The other day my heart melted as I watched her hug and kiss her favorite little blue dog (affectionately known as "blue dog" because we are creative like that). I know I am a little biased, but this girl is adorable.</span><br />
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Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-3457999488237464070.post-84375616969134306502013-05-03T16:38:00.001-04:002013-05-03T21:52:18.588-04:00Speak For Yourself<span style="font-family: Arial, Helvetica, sans-serif;">I am happy to finally post an AAC update! In December I wrote about how we were entering the world of Augmentative and Alternative Communication and had chosen a <a href="http://calliebloggie.blogspot.com/2012/12/dynavox-maestro.html" target="_blank">DynaVox Maestro</a> as Callie's first speech device</span><span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">. I was very excited to receive the device and get started right away, but it unfortunately ended up being a bust. I was going to write and tell you all about the issues I felt the device had as well as how we were not treated well by the rep, but instead I will keep this post positive and just say we moved on and found a far superior solution. :)</span><br />
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<span id="yiv6577550128yui_3_7_2_27_1366031662823_75" style="font-family: Arial, Helvetica, sans-serif;">I decided to convert my iPad into a speech device for Callie and focused my energy on researching various speech apps. I had been following a special mom blog called <span id="yiv6577550128yui_3_7_2_27_1366031662823_147"><a href="http://niederfamily.blogspot.com/" target="_blank">Uncommon Sense</a></span> and was intrigued by the app she chose for her daughter called <span id="yiv6577550128yui_3_7_2_27_1366031662823_150"><a href="http://www.speakforyourself.org/" target="_blank">Speak for Yourself</a></span>. While looking into other apps I kept going back to S4Y. This app is different. It was designed by two SLPs who have extensive knowledge of AAC devices and implementation. They saw a need for a different type of speech app and created one with unique features. The main screen of S4Y consists of 119 of the most common core vocabulary words. Then each of these buttons links to a screen with additional related core words as well as personalized, programmable vocabulary. The core words never change position. This consistency is so much better for motor planning which can eventually increase the users rate of speech as they grow more familiar with where the words are located. The app also has a no duplication feature. Having only one way to get to each word is also much better for motor planning. Finally, it takes no more than two touches to get to any word! </span><span style="font-family: Arial, Helvetica, sans-serif;"> After programming the Maestro, I have a new appreciation for these features. </span><span style="font-family: Arial, Helvetica, sans-serif;">It really is an amazing app. I "liked" the Speak For Yourself Facebook page and quickly realized the ladies who created this app are amazing too. It didn't take long to figure out helping nonverbal children is their passion. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">About a month ago we downloaded the full version of S4Y (by the way, a free lite version is available and I love how it was possible to try it first before committing). In only took me a day to program the app for Callie. It was so, so easy. I spoke to Callie's preschool teacher and SLP at school to let them know about our chosen app and ended up going in to give them a quick tutorial. They were very open to using it and intrigued by its core word concept and unique features. I started sending the iPad to school with Callie after only exposing it to her for a few days. I was so incredibly happy to learn she did great with it the first day. Her teacher let me know Callie was proud to be able to tell everyone her name and "I'm using an app called Speak For Yourself to help me talk." She was also able to participate in circle time by saying it was sunny that day when they spoke about the weather. A highlight was when she had the family screen open and after seeing Owen's picture, one of her therapists asked her who Owen was. Callie pressed a button to say "I love Owen." :) Finally, during story time I guess she was pressing some of the buttons and they had to tell her to please be quiet. LOL... Callie has never in her life been told to be quiet!! Funny, but this made me so happy. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">So our AAC journey stalled out in the first couple of months, but we are rolling now thanks to our iPad and Speak For Yourself. Callie is beginning to use her device intentionally. The other night while eating dinner she motioned for her "talker". I propped it up next to her and she pressed the Help button. She had a piece of food stuck in her mouth and used her device to ask for help! Today she was signing something, but I couldn't figure out what she was trying to request. I asked her if she could tell me with her talker and she pressed the Bedroom button, meaning what she wanted was in her bedroom. Then I figured out she was signing Bear... She wanted one of her teddy bears! After that I quickly opened up and showed her the button for teddy bear and she is now using it instead of signing. I just love seeing how she is catching on to this alternative form of communication. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">Here she is the first time we handed her the iPad with S4Y. She was immediately interested:</span></div>
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<a href="http://4.bp.blogspot.com/-dnhBTCNhd5E/UW8YHtQDDoI/AAAAAAAAAnQ/5khTZPmlCBY/s1600/Speak+for+Yourself1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="color: black; font-family: Arial, Helvetica, sans-serif;"><img border="0" height="240" src="http://4.bp.blogspot.com/-dnhBTCNhd5E/UW8YHtQDDoI/AAAAAAAAAnQ/5khTZPmlCBY/s320/Speak+for+Yourself1.JPG" width="320" /></span></a></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">FYI, for anyone who is interested I chose a protective Gumdrop (Drop Series) iPad case. The case seems very protective and although it adds weight to the iPad, it is much lighter than the DynaVox and Callie is able to easily carry it around. And we chose pink, of course!</span></div>
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Unknownnoreply@blogger.com8tag:blogger.com,1999:blog-3457999488237464070.post-32803340884050620242013-04-15T11:08:00.000-04:002013-04-15T11:08:06.493-04:00IEP Success!<br />
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<span style="font-family: Arial, Helvetica, sans-serif;">It is IEP season; time to negotiate Callie’s IEP for
this fall, the start of her second year of preschool. If you remember my update from last summer,
you will know that the first time we went through this process was a
nightmare. The county assigned Callie to
the wrong type of classroom in a school far from our home. Then they mailed our IEP to the wrong address
(privacy issue!) and therefore we did not receive a copy until hours before our
first meeting. The IEP itself was a
mess, including many typos, referring to Callie as Joshua at one point (!), and
it contained weak goals and laughable therapy minutes (just 20 minutes of PT
despite the fact that she was hardly walking and only 30 minutes of speech when
she had no words and limited sounds). It
was ridiculous and the process of working with the school teams was frustrating
and stressful. We muddled through the
process as best we could and learned quite a bit. While I felt more prepared with what to
expect this year, I was also really dreading going through the process again.<o:p></o:p></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">But I am so incredibly relieved to report our experience was
completely different this year. I asked Callie’s teacher to please provide the first draft of the IEP as early as
possible before our meeting so that this time I would have ample time to review
it and better prepare. Not only did she
provide it weeks in advance, but it was a work of art compared to last time. The information was accurate, neat, and
organized, the PLOP (present level of performance) section was right on, and
the goals were strong and appropriate for Callie. We were starting in a much better place. I went through it with a fine tooth comb and
made a list of requested tweaks, and then met with the volunteer advocate I
consulted with last summer. I ran my
ideas by her and she helped confirm what she felt was important to bring up
with the team and what was worth letting go.
My main concern was Callie’s speech therapy minutes. We were still at 60 per week, but now that
her diagnosis is severe apraxia, this really was not enough. Childhood apraxia of speech requires intense
and frequent speech therapy. 3-5
sessions per week are recommended. I
decided to request 120 minutes, double what Callie was currently receiving. While I felt this was truly what Callie needed,
I dreaded bringing this to the IEP team because I had to beg, plead, and
finally cry to get 60 last year. What
would it take to get to 120?? I did
extensive research and put together a case like an attorney prepared for court. Much to my shock, the team agreed to all 120
minutes of speech therapy in our very first meeting! In addition, they agreed to increase her
minutes from 60 to 120 immediately so that she would receive the addition
therapy through the end of this school year.
They also doubled her OT minutes from 30 to 60. I cannot tell you how pleased I am that a.)
Callie finally has an appropriate and strong IEP, and b.) it only took one
meeting to get to this point. Last year
the process dragged on through July.
This year we are settled in April!
What a relief. I am so incredibly
thankful the process went smoothly and am so happy for Callie. It feels like a huge accomplishment to have
successfully advocated for her. I love
this girl and would do anything for her! </span><o:p></o:p></div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3457999488237464070.post-43643606405047908402013-03-31T13:11:00.001-04:002013-03-31T13:11:13.450-04:00Happy Easter!<div class="separator" style="clear: both; text-align: left;">
<span style="font-family: Arial, Helvetica, sans-serif;">Happy Easter from Owen & Callie! </span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3457999488237464070.post-57363357077343701322013-03-25T16:03:00.000-04:002013-03-25T16:03:21.311-04:00Walsh Lab, Boston<br />
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<span style="font-family: Arial, Helvetica, sans-serif;">Over two years ago I learned about the Christopher A. Walsh Laboratory in Boston. They research genetic mutations that can alter brain development and lead to malformations like polymicrogyria. By studying individuals affected with these conditions and identifying the associated genes and their mutations, they learn about the proteins that are important for brain development and hope that this will lead to better options for diagnosis, management and treatment.</span></div>
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<span id="yiv933219841yui_3_7_2_35_1363570476662_99" style="font-family: Arial, Helvetica, sans-serif;">The Walsh Lab has a Brain Development and Genetics clinic that evaluates children with a wide range of brain development disorders, including PMG. The clinic combines their specialties of neurology, genetics, genetic counseling and research to provide a comprehensive approach to working with families impacted by brain malformations. Shortly after learning about the clinic I started the process of having Callie evaluated, but got side tracked with her weight gain issues and then feeding tube placement and never followed through. A few months ago I reached out to the Walsh Lab again to set up an appointment, and a couple of weeks ago we finally made the trip. It was worth it.</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;"><span id="yiv933219841yui_3_7_2_35_1363570476662_137">Their team was wonderful and met with us for about two hours. We talked at length with Brenda Barry (</span><span class="yui_3_7_2_48_1363952274861_63" id="yiv933219841yui_3_7_2_35_1363570476662_160">genetic counselor</span><span class="yui_3_7_2_48_1363952274861_64" id="yiv933219841yui_3_7_2_35_1363570476662_147">) </span><span class="yui_3_7_2_48_1363952274861_65" id="yiv933219841yui_3_7_2_35_1363570476662_149">and Dr. Anna Poduri (</span><span class="yui_3_7_2_48_1363952274861_66" id="yiv933219841yui_3_7_2_35_1363570476662_153">neurologist</span><span id="yiv933219841yui_3_7_2_35_1363570476662_156"><span id="yiv933219841yui_3_7_2_35_1363570476662_180">). Dr. Chris Walsh then joined us to meet Callie and give us his opinion of her case. The bottom line is her MRI shows fairly extensive changes with regard to her perisylvian PMG, but clinically she is on the better end of the spectrum with excellent development. </span></span>They mentioned the fact that her seizures were controlled immediately (her infantile spasms were controlled within one week with prednisolone) has no doubt contributed to her success. Good signs include she does not have a drooling problem that is common with her type of PMG, she makes vocalizations, is socially aware, cognitively tuned in, motivated, and her body is not stiff. These are all common symptoms that she seems to have avoided at this time and indicate she will continue to make progress. We learned an interesting piece of new information... Callie's MRI imaging is unique in that there are deep 'folds' in the cortex or outer layer of the brain that seem to distort the shape of the ventricles and the corpus callosum. These infoldings are not common in PMG cases. They were intrigued by her and invited us to participate in their research studies.</span></div>
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<span id="yiv933219841yui_3_7_2_35_1363570476662_332"><span id="yiv933219841yui_3_7_2_35_1363570476662_329" style="font-family: Arial, Helvetica, sans-serif;"><br id="yiv933219841yui_3_7_2_35_1363570476662_339" /></span></span></div>
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<span id="yiv933219841yui_3_7_2_35_1363570476662_337"><span id="yiv933219841yui_3_7_2_35_1363570476662_334" style="font-family: Arial, Helvetica, sans-serif;">We stayed after our appointment to sign consent forms and provide samples to officially enroll. They are building a large collection of PMG patients with the goal of sequencing their genomes. Their plan is to identify key genes that are associated with the condition by comparing genomes of patients and parents with hereditary PMG versus sporatic cases. This seems like a great resource for our family. To sequence Callie's genome means they will forever have a genetic profile of her condition. If they find genes that are altered in Callie, there could be potential for treatment. This would of course take years, but the pace of things in research is moving exponentially. Who knows what they can accomplish in Callie's lifetime! </span><span style="font-family: arial, helvetica, sans-serif; font-size: x-small;"> </span></span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Dr. Chris Walsh</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;"> Dr. Ann Poduri</span></div>
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<span style="font-family: Arial, Helvetica, sans-serif; font-size: x-small;">Thank you, Aunt Rhine! xoxo</span></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3457999488237464070.post-20984196086941108942013-03-17T22:27:00.000-04:002013-03-17T22:36:39.272-04:00Almost Spring!We are so ready for spring!! There were a few mild days last week and we loved getting outside for some fresh air. We look forward to many more warm days soon!<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3457999488237464070.post-91551269680323920362013-02-16T10:37:00.000-05:002013-02-16T10:37:51.324-05:00Yoga<span style="font-family: Arial, Helvetica, sans-serif;">We keep a notebook in Callie's preschool backpack and her teacher sends short daily notes home to let us know how or what Callie does in class. The other day part of the note said "We did yoga in gym and Callie worked <u>very</u> hard." I thought that was so cute that they did yoga at school! After reading the note, I turned to Callie and asked her if she did yoga with her friends in class. She looked at me as if she were excited that I knew and nodded her head yes. Then I asked her if she could show me her yoga moves and it looked something like this:</span><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><br /></span><span style="font-family: Arial, Helvetica, sans-serif;">How adorable is it to see our special little 3 year old doing yoga?! Love this girl!! :)</span>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-3457999488237464070.post-76608701347182945622013-02-04T15:26:00.000-05:002013-02-04T15:26:29.065-05:00Blendtec and Callie's Blendarized DietI recently changed Callie's diet to include blended food. A blendarized diet is simply regular table foods blended into a fine enough puree to be easily given via a feeding tube. I started looking into this alternative way of tube feeding after learning about it from a special mom friend. She exclusively feeds her son blended food and graciously offered to show me how it is done. I watched and took notes as she prepared large batches of balanced nutritious meals and then froze them in individual servings. She explained it is easy to feed him nothing but healthy and organic foods because unlike most little ones who would balk at eating such a variety of vegetables and even things like sardines which are high in omega-3 and B vitamins, he does not taste them. She told me about squirrel syringes (the very best syringes for tube feeding) and loaned me "Complete Tubefeeding" by Eric Aadhaar O'Gorman. This book is an excellent guide to tube feeding and I highly recommend it to anyone going down this path. In addition, it goes on to make a case for a blendarized diet explaining it is a more natural way of eating, can offer complete customizable nutrition, feels better to the tubie, and can provide countless health benefits. After having Callie on Elecare formula for over a year and a half I was ready to give it a try.<br />
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In order to start this type of diet, it is best to have a high-powered blender, namely a Vitamix or Blendtec. Using a high-end blender helps avoid clogging a tube. I started comparison shopping and while both are no doubt amazing machines (check out the "Will It Blend?" videos on YouTube to see the Blendtec blend items like iPhones to dust), I liked how the Blendtec fit under the cabinets on our countertop (the Vitamix was too tall) and the sides of the Blendtec jar are smooth instead of grooved, and therefore easier to remove the food and clean. I heard both companies offer discounts for those using the blenders for medical needs and ended up calling Blendtec first. They were extremely helpful and caring, and a week later we had their Total Blender Classic Wildside on our front doorstep. I can't say enough good things about this company and the blender is wonderful!<br />
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It is our goal to have Callie eat 3 regular meals a day plus snacks. We offer her food at the table with us at meals, but do not pressure her to eat a certain amount in an effort to keep eating a positive activity. After she eats what she can by mouth, we follow her meal with two 60ml syringes of blended food plus two syringes of water. Her typical morning blend consists of oatmeal, whole milk, 2 fruits, walnuts, applesauce, Chia seeds, and a little extra virgin olive oil for added fat & calories. An example of her lunch & dinner blend includes whole milk, rice, chicken, veggies, fruit, Chia seeds and oil. While we were working up to a couple of syringes of blended food after each meal, we began cutting back the amount of formula she was getting overnight. I am counting her calories and trying to gradually add more during the day and slowly cut back at night. <br />
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We have noticed a change since beginning this diet! Callie is really filling out and just seems... solid! I am thrilled to report she broke 30 pounds last month. This feels like a huge accomplishment. I have worked hard to get every ounce on her and it just makes me so happy to see her thriving. We moved up to a new size of pull-ups and I've been buying her new, bigger clothes. She also seems to have more energy. I really feel like this diet has been a very healthy change for her and look forward to continuing to move towards more blended food. We are getting there and it should not be too much longer until she is done with medical formula at night. Once she is consuming all of her calories during the day we will then gradually try to start cutting back on the blended food as she is able to eat more orally and she will eventually be done with her tube. But we are okay with as long as that takes and are just satisfied that she will soon be consuming an all natural diet. Slowly but surely we are making progress on the food front! <br />
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BTW, next week is Feeding Tube Awareness week. We <span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 18px;">♥ </span>our tubie!<br />
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<br />Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-3457999488237464070.post-32192430187923177242013-01-18T11:20:00.000-05:002013-02-04T15:44:07.397-05:00PMG Awareness & Daytona<span style="font-family: Arial, Helvetica, sans-serif;"><br />
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<span style="font-family: Arial, Helvetica, sans-serif;"><span id="yui_3_7_2_17_1358480493640_196"><span id="yui_3_7_2_17_1358480493640_194"><span id="yui_3_7_2_17_1358480493640_216">When a tiny 3 week old baby girl was diagnosed with polymicrogyria in 2011 her mother and grandmother felt discouraged and disappointed when they were able to find very little information and support. They ended up feeling inspired to do something about this and, along with some other special moms, started a non-profit called PMG Awareness Organization (<a href="http://pmgawareness.org/">PMGAwareness.org</a>). Their</span></span></span> mission is<span id="yui_3_7_2_17_1358480493640_168"><span id="yui_3_7_2_17_1358480493640_180"><span id="yui_3_7_2_17_1358480493640_178" style="line-height: 18px;"> to promote awareness, diagnosis, and treatment of polymicrogyria through education, research, advocacy, and support. Their website consolidates all PMG information into one place and is especially helpful to families receiving the diagnosis and looking for answers. It is also a great place to learn how to connect with other PMG families. Callie's blog is listed on their site. </span></span></span></span></div>
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<span id="yui_3_7_2_17_1358480493640_219"><span style="font-family: Arial, Helvetica, sans-serif;">One member of the board of directors of PMG Awareness has a family friend who has been pursuing one of his passions, race car driving. He is racing for TruSpeed Motors in the Rolex 24 Hours of Daytona in Florida next week from January 26th-27th. This wonderful and caring man wanted to do something special to help and as a result offered to put the PMG Awareness logo on his car and have patches made for the race team and pit crew to wear on their race uniforms. He is also putting the names of PMG kids on the car. Callie will be one of them! This is a wonderful opportunity to raise awareness of polymicrogyria since the race is huge and will be televised on the Speed TV network. If you catch any of it, please join us in cheering on TruSpeed!</span></span></div>
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Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3457999488237464070.post-59391560761188023892013-01-11T09:58:00.000-05:002013-01-11T09:58:00.644-05:00EoE UpdateLast Friday Callie had another upper GI endoscopy, her seventh to date. We know the routine well, but it never seems to get any easier. Callie knew what was going on as soon as we were called back to the prep area and was not happy to be there. After getting her changed, reviewing her medical history with the nurse, and touching base with the anesthesiologist, we headed back to the procedure room. I talked to her as we were wheeled back and explained to her that she would wear a mask and then would take a nap and I would be with her when she woke up. She didn't want to hear any of it. She was terribly upset and crying. Once the team was assembled in the room it was time to begin and they placed the mask on her little face while I held her, unsuccessfully trying to comfort her. She fought it as long as possible until she succumbed to the gas and drifted off to sleep. As usual, I fought back tears during these traumatic moments, and then reluctantly handed her over and fled the room so that I could let them flow. But the worst was over and things turned around from that point.<br />
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While I waited by her side for her to wake up in the recovery room, the GI doctor came to speak with me and advised the scope looked clear! Biopsies were taken and the results would take a week to confirm, but his impression was she passed dairy. Wonderful news! We did not have long to talk, but I told him of the top food allergies she had now passed everything except nuts and shellfish, which haven't been tried yet. I asked him if I could just keep these items out of her diet (we can live without them!) so that we do not have to go though another endoscopy for a long time. He said that would be fine, although we will eventually have to scope when we try to take her off Prevacid. I was just happy to know we would not have to go through this again for a while. Also, I remarked how it was amazing that we thought she was allergic to everything and now maybe nothing! He said most likely she has grown out of the allergies that originally caused her EoE. Although in the back of my mind I kept thinking about <a href="http://calliebloggie.blogspot.com/2012/06/chop-third-final-eoe-opinion.html" target="_blank">CHOP's opinion</a> that she was possibly mis-diagnosed and that perhaps reflux, not food allergies, has been the problem the whole time. We will never know. But the important thing is we now know she is able to safely consume nearly all foods! And we are so incredibly thankful for this!!<br />
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<br />Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3457999488237464070.post-23327942206984819712013-01-08T09:24:00.000-05:002013-01-08T09:24:59.277-05:00New Year<br />
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<span style="font-family: Arial, Helvetica, sans-serif;">I recently started reading another blog by a mom with a little girl with developmental delays. In a new year post she reflected on her past year saying it was the year of walking and the upcoming year was going to be the year of talking, whether verbally or with the use of an AAC device. I feel the same way! 2012 was huge for us with Callie learning to walk at just over 2 1/2 years old. It is my hope that 2013 is going to be the year of talking, and let's add feeding to the mix. I feel confident we will soon be able to wean Callie from her night tube feeds of formula so that she consumes all of her calories by day, whether orally or orally supplemented with blenderized food via tube. More on that very soon. And it would be wonderful is she ends up with some words (or even approximations) this year, but I will be thrilled if we simply begin to have success with an AAC device. As I previously mentioned, we recently received Callie's <a href="http://calliebloggie.blogspot.com/2012/12/dynavox-maestro.html" target="_blank">DynaVox Maestro</a>. I spent 3 hours with the rep last week learning how to program and customize it for Callie. I have been working on it a little each day, but I have to admit it is slow going. It is quite an undertaking to set up. Callie has played with it here and there and is familiarizing herself with how it works, but we have not yet really tried to use it for communication. Hopefully I can wrap up the programming this week. </span></div>
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<span style="font-family: Arial, Helvetica, sans-serif;">At any rate, I feel excited and optimistic about what this year may bring for Callie. Happy New Year!</span><br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3457999488237464070.post-70288389782443693962012-12-28T13:11:00.000-05:002012-12-28T13:11:40.586-05:00DynaVox MaestroI mentioned a couple of weeks ago that Callie has <a href="http://calliebloggie.blogspot.com/2012/12/childhood-apraxia-of-speech-cas.html" target="_blank">Childhood Apraxia of Speech (CAS)</a>. We had her evaluated and it was determined that she is a good candidate for an AAC device. We decided to start with a device from DynaVox called the Maestro instead of the iPad for various reasons. Right now Callie sees the iPad as a source of entertainment and I think it might be difficult at this age to change it's use to a speech device (I can see her exiting out of the speech app at any chance she gets to switch to Angry Birds or her favorite Baby Signing Time videos!). Also, you can change the screen sensitivity, the buttons are larger, the speakers are better (louder for places like a restaurant), and it has more customizable options for a little girl's voice. Her SLPs also have more experience with DynaVox devices, so hopefully it will be easier to incorporate it into her therapies. These are just some of the reasons that we feel like a DynaVox is the best place for her to start. If this ends up being a long term solution, I can definitely see switching to the iPad as she matures and gets the hang of using a device for speech. And since we have one, it will be easy to simply purchase an app when the time seems right. They are constantly improving and adding new speech apps, so hopefully we will find the perfect one for her when she is ready.<br />
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Here is a picture of the Maestro:<br />
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<a href="http://3.bp.blogspot.com/-phANuf-yNAY/UN3fODomTeI/AAAAAAAAAfk/eaAahM19w2U/s1600/Dynavox.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="176" src="http://3.bp.blogspot.com/-phANuf-yNAY/UN3fODomTeI/AAAAAAAAAfk/eaAahM19w2U/s320/Dynavox.jpg" width="320" /></a></div>
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It just arrived and we are so excited to get the hang of it and start using it right away! I have an appointment with the DynaVox rep this coming week for training and am hopeful Callie will quickly catch on and be thrilled with this new way of expressing herself. I will keep you posted!<br />
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3457999488237464070.post-87059185522609764092012-12-25T17:31:00.003-05:002012-12-25T17:31:40.690-05:00Merry Christmas!Owen & Callie wish you a very Merry Christmas!<br />
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<a href="http://3.bp.blogspot.com/-DDotUpxcbcw/UNooz00z59I/AAAAAAAAAfQ/2cPdVs1XEgo/s1600/Christmas+card+2012.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="http://3.bp.blogspot.com/-DDotUpxcbcw/UNooz00z59I/AAAAAAAAAfQ/2cPdVs1XEgo/s320/Christmas+card+2012.JPG" width="320" /></a></div>
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