Wednesday, March 28, 2012

Easter preparations

Tom and I host many holidays at our house.  Over the years, we've gotten pretty comfortable with this role and with the addition of Tera, it's actually a little easier because we don't have to pack her up.  We have tried to become more reasonable and let other people help us by bringing dishes, and that seems to work out pretty well.  But no matter how simple we try and keep things, I'm always trying to make everything perfect.  Since Tom almost always handles the cooking (he loves it and is good at it), I'm left with the decor and food "accessories".  I try and make the table festive, put out our china in a decorative manner, and add in little details like flowers, special coffee, and sometimes I get to cook something.

This year, we are hosting Easter per usual.  For most of the other holidays, I have bins full of decorations.  But Easter, is pretty bare, mostly because I don't like many of the Easter decorations out there.  This year though, I have been determined to find something to make our house Easter festive.  and I'm failing.  It's really hard for me to justify spending money on decorations that I don't love and that's probably a good thing for our bank account, but I still have nothing that makes my house look any different now than it did right after Christmas. 

So today at Target I bought an inexpensive felt Easter basket, filled it with some of that weird plastic-like string, and put some candy in it.  I think that may be the extent of what I do for this holiday this year. I realized today our family doesn't care if I have any decorations up.  They probably don't care if we have food as long as Tera is there.  I think we will still plan on having food, and Tera, and this year Tera does have her own, personalized Easter basket, and we'll be coloring eggs in a week, so I think between all of that, I can forget about the decorations that I don't like and just stick with trying to get our house ready for company while watching a kid that seems to get into EVERYTHING these days.  That should be enough of a challenge. 

Tuesday, March 27, 2012

Emotional triggers

Last night was a perfect example of how I might never be perfectly okay with everything.  You know how there are just some things that trigger your emotions? For me it's usually the smell of something or a song.  Apparently I'm very scent oriented because I can be taken back 20 years by just a familiar smell.  I have the same association with songs.  While I'm not musically inclined in the least, I do consider music a big part of my life.  Tom and I spent as much time putting together a playlist that plays in Tera's room all the time, as we did researching baby gear and registering.  So when I hear certain songs, it can very easily trigger emotions.

Last night was neither of those things.  It just hit me like a truck.  Tom and I are big fans of the TV show Shameless on Showtime.  It's a comedy/drama about a dysfunctional family that's well written, well acted, and just plain entertaining.  In this past Sunday's episode (which we watched last night) the oldest son in the family, who is 17, finds out his pseudo-girlfriend who is pregnant with his child has gone into labor.  Without going into all the details, his whole family of siblings and friends totalling about ten or more people, happen to be at the hospital at the same time and find out she's in labor and that he's there and all end up in the delivery room.  When the baby finally comes out, the nurse calls the doctor over immediately.  They take the baby over to the table and the whole family gathers around and asks what is wrong.  The oldest sister looks at the baby and says he has Down Syndrome.  As an added twist, the baby also turns out to be Asian, which the supposed father is definitely not thereby indicating he is in fact not the father.  I kind of glossed over that part because I was already crying.  In seconds it had taken me right back to a year ago and all that pain just shot through me again.  To make matters worse, to me and on the show, the adoptive couple that had hoped to take the baby home, find out about the two discoveries and the wife tears up and walks out of the hospital without the baby.  That was kind of a second punch to the gut.  Now to be fair, it is only television and they also didn't say what the reason was for the couple leaving, it may have been the combination of facts.  But logic is kind of hard to recognize in those highly emotional moments. 

There is still one more episode this season so we'll find out next week how this all plays out.  But as that episode ended, my tears didn't.  It's hard to just turn off what has taken me a year to work through.  I sometimes forget that we came to our acceptance rather quickly compared to some other people I've read about and that it's ok that I'm not totally there yet.  I may never be.  No matter how comfortable we think we feel, it's still not what we were expecting and there is a certain amount of grieving that goes along with that.  As I've said before, I think sometimes the fact that she does so well with so many things, kind of makes us forget sometimes what we're really dealing with.  Sometimes that's a good thing, but it can also leave me a little unprepared for those moments of realization. 

But despite the somewhat rough end to my day yesterday, it was totally turned around this morning when I felt like I could finally declare that my determined little girl is officially pushing herself into sitting! It's happened once or twice a week for the last two weeks, a couple times last night, but she was moving up and down all morning today and I was so incredibly proud of her.  It's so amazing to watch her go from one day being able to do it once or twice, and the next day just completing mastering it. 

Let's see what she can do with tomorrow...

Flashback to when she was 2 weeks old

Monday, March 26, 2012

Ahh, vacation

I've been off the grid for a few days enjoying the beginning of my spring break.  We had a very busy weekend, in an amazing way because it was all spent with friends and family, but as a result we weren't home enough for me to really even take out my computer, much less write.  And I'm ok with that.  When I started this blog, Tom made me promise it wasn't going to be something that would add more stress to my life. 

Today was my first official day of spring break. I dropped Tera off at daycare and then spent the morning shampooing the basement carpet, washing the upstairs floors, and folding laundry.  I did take  a break and get a manicure, then came home and did more laundry and worked on setting up our page for the Gigi walk in June.  It may not sound like an exciting day of vacation, but the fact that I had all day to get stuff done, made my weekend incredibly relaxing.  Usually when our weekends are as busy as this one was, it's a little more stressful because I'm still racing to get my regular stuff done.  This time I was able to enjoy all my visiting time and, following one of my previous posts, I started reading a book on my phone while we were travelling to and from houses. 

Tonight we tried to spend some time working with Tera on some of her current goals.  As we sat down and tried to do this, we realized we didn't remember many of the things that came up during her review meeting last week.  This is one of the challenging parts of her therapies.  At times, there are so many things to be working on, we kind of forget where to even start.  We worked on a few things for a little while and then she just seemed tired so we decided to just let her play.  It's such a fine line for us sometimes between just letting her play and doing her own thing, which she does well, and trying to structure her play so that it incorporates at least one or two strategies.  Then there are times when to be honest, we're just too tired to try and remember anything and we just let her play.  This would be fine if it didn't typically end up being more than one night or two nights in a row and before we know it it's been a week and we haven't done anything and then we feel bad.  Throw into that mess that there is usually at least one week a month when she's sick and doesn't want to work on anything.

On the plus side, we have fabulous therapists that always remind us she's a baby first and that when those weeks happen, it's not a big deal. 

All right, this little blogger is tired.  Off to bed to rest up before day two of vacation.  This one should be a little more relaxing. 

As we get closer to Easter I thought I'd throw one in from last year

Thursday, March 22, 2012

Day 22- More time please

Just one more day. I just have to make it through one more day.  I can do this.  I'm going to keep telling myself that tomorrow. 

I'm actually pleasantly surprised that I haven't lined up 50 things to do in the hopes of completing at least 30 of them and realistically only completing about 5.  This time I have a very short to do list and the rest of the time, aside from the day to day stuff of being home with my mischievous little girl, will be spent relaxing.  Haha, we'll see about that one.  I keep seeing these posts pop up on Facebook about books and realizing that this may be the longest I've gone without reading in my life.  I may also be setting some kind of record by how long it could take to read a single book (I think I'm somewhere around at least 18 months if not longer).  If you're wondering, I'm reading Pride, Prejudice, and Zombies.  No I've never read the original and yes, I'm enjoying it, but I don't think it quite has the hook to keep me going when my attention span is about 10 minutes at max and I'm usually too tired to make it through one page before falling asleep.  I'm thinking I need something a little quicker and then maybe I can return to this, in 20 years?

When I was a kid, I loved reading.  I would finish entire books while sitting at Barnes and Noble with my Dad and sisters.  I was a fast reader and I would do it any chance I could.  I truly believe it's what has made my vocabulary so extensive and my grammar skills better than average (at least I like to think so but I'm pretty sure I have multiple English teachers reading this so don't be too critical).  I still love it and there have been times in the past few years when it's actually depressed me to think about how many incredible books are out there that I'm missing out on.  I know there will probably be a time in my life again when that may happen and mostly I just need to get back into one and stop thinking about it. 

As an adult, I've actually gone back and read some books from high school that I didn't quite appreciate or take the time to enjoy.  I love Wuthering Heights and am very glad I took the time to reread it after high school.  I never had to read To Kill a Mockingbird so I read that with my advisory a few years ago when they had to do it and I absolutely loved it.  I also have the Odyssey and Dante's Inferno on my list but I think I'd like to get through some that I haven't read yet first.  I've tried throwing some other "classics" into my routine here and there and read some that I enjoyed and some that were just okay.  Most of them were ones I didn't have to read in school and therefore never got around to.  I've read Farewell to Arms and Catcher in the Rye. I started reading One Flew Over the Cuckoos Nest and kept getting distracted so that's still on my list.  I have a whole bunch on my Amazon list, but people kept buying them for me and I don't have time to read them so I finally just moved them from my list to try and get through the ones I have.

I also really enjoy cross-stitching and started a birth record for Tera when I was about 4 months pregnant and it's still not done.  Neither is her Christmas stocking.  Mostly I'm hoping that between June and August I can finish at least one of those. 

Ok, so reading and crosstitching.  Two things I do to do relax and two things I never have time for.  I think it's time to find some time.  How exactly do I do that?



Wednesday, March 21, 2012

Day 21-Today is the day

Today was one emotional day.  I've been prompting people for a few days now to find a way to spread Down Syndrome awareness for World Down Syndrome Day and my family and friends did not disappoint.  I teared up quite a few times today reading what people had to say and I could not be more proud to be part of such an incredible group of people. 

Then this afternoon we had Tera's annual review for Early Intervention.  Basically what happens is we meet with all of her therapists and her coordinator and they all share where they think Tera is in various areas.  Since she currently receives developmental, physical, and speech therapies, each one of those therapists discussed how delayed they think she is and why they think that.  At today's meeting we also had an occupational therapist present that had just evaluated Tera this morning.  After each therapist talks about what she's currently doing and what she's close to doing, her coordinator asks us what our goals are for the next year.  This is really difficult because as much as I know about Tera and her skills, I'm not that knowledgeable on what I should be expecting of her and it's not like we have another kid to compare her to (which is usually an advantage). 

After thinking for a few minutes I just asked her therapists what they think is reasonable for her in the next year.  What we ended up with is that we hope she'll be crawling on all fours, pushing herself up to sitting, recognizing more objects by name, using some signs and increasing the sounds she is making.  I know there are a ton of other things too, but I just can't remember them all right now. 

Finally, we decided on what frequencies her therapies should be at.  For now, her physical therapy will stay at once a week, her developmental will increase to once a week, her speech will stay at twice a month for six months and then increase to once a week, and we're adding occupational at twice a month for six months and then increasing that to once a week.  I have no idea how this will all work, but we'll figure it out. 

I was fine during the meeting, and I was fine right after.  But about an hour later it kind of occurred to me that we shouldn't have to have this type of meeting.  She should just be progressing at a normal rate and not have to have a meeting with seven adults deciding how far behind typical kids she is.  But it wasn't even really that.  It was the fact that no matter how well she's doing, there's always going to be something else she needs to improve on, just to catch up.  And this was exactly my fear a while back.  According to her therapists, developmentally and physically she's about 33% delayed.  The occupational therapist placed her at about 15% delayed, and in speech she's about 50% delayed.  It's not the numbers that bother me, I really mean that.  It's more that despite all the things we think she's doing well, and she is, there's just more things that she's not doing yet.  I'm not in anyway concerned about the present or the future, it's just a reality check again and it kind of threw me off for a while. 

I think I actually do have more to say on this, but I'm too tired to keep typing.  It's been a long day and I need sleep. 

Thank you to everyone who participated in World Down Syndrome Day, it reminded me once again how special Tera is, and all of you, and made the feelings I was experiencing this afternoon, a lot easier to deal with.


Tuesday, March 20, 2012

Day 20-Tomorrow

This was kind of a long day with a somewhat busy night, and then a rough end to the evening.  Everyone is fine and I'm too tired to go into details.  Yes I'm counting this as my post for today and I was very close to just saying screw it so this is better than nothing. 

Please, please, please be thinking about Tera and any other individual you know with Down Syndrome tomorrow.  These individuals work harder than a lot of people ever will and rarely complain about it.  There are lots of reasons why the stereotype about them always being happy exists,  but my theory is that they're just better people than the rest of us and don't think to complain about things.  They deal with what they've been dealt and move on.  So tomorrow, on World Down Syndrome Day, try and make the world a better place by spreading awareness for these very special people.  They have enough struggles in their lives without having to deal with the ignorance of people. 

My students have been challenged and I hope to have something positive to write tomorrow. 

And because I will admit my memory has always been my challenge, I'm just going to repost the entire list of facts from NDSS here and then at least I'll know I included all of them at some point or another. 

PS  This is already longer than I was planning...

1) 3/21 is World Down Syndrome Day! This day was chosen to symbolize the third copy
of chromosome 21 in Trisomy 21, the most common form of Down syndrome. Do something extra in celebration of those with an extra copy of chromosome 21!

2) Down syndrome is the most commonly occurring chromosomal condition. Raise awareness and celebrate people with Down syndrome this March 21!

3) There are three types of Down syndrome. 95% of people with Down syndrome have
Trisomy 21, a full additional copy of chromosome 21, 5% of people with Down syndrome
have translocation or mosaicism, and have partial additional copies in all or some cells.
Honor all people with Down syndrome this March 21!

4) The life expectancy for people with Down syndrome was 25 in 1983 and is 60 today.
There’s much to celebrate this World Down Syndrome Day!

5) There are over 400,000 people living with Down syndrome in the United States. Raise
awareness for each and every one on March 21!

6) One in every 691 babies is born with Down syndrome. Celebrate them on World
Down Syndrome Day this March 21!

7) People with Down syndrome should always be referred to as people first! Read the
NDSS preferred language guide and share it in honor of World Down Syndrome Day.
8) A few of the common physical traits of Down syndrome are low muscle tone, small
stature, an upward slant to the eyes, and a single deep crease across the center of the
palm, but these are not indicative of the many strengths and talents that each individual
possesses!

9) NDSS distributes A Promising Future Together: A Guide for New and Expectant
Parents to anyone who receives a Down syndrome diagnosis pre or post-natally. Raise
awareness for people with Down syndrome this March 21!

10) Quality educational programs, a stimulating home environment, good health care,
and positive support from family, friends and the community enable people with Down
syndrome to develop their full potential and lead fulfilling lives – do something extra this
World Down Syndrome Day in honor of everyone with an extra 21st chromosome!

11) Over 285,000 people participate in over 250 Buddy Walks® across 50 states each
year. That’s a lot of celebrating people with Down syndrome!

12) People with Down syndrome attend school, work, participate in decisions that affect
them, and contribute to society in many wonderful ways. Celebrate these abilities and
achievements for World Down Syndrome Day!

13) People with Down syndrome visit both typical doctors and specialists. NDSS provides
healthcare guidelines to help the process throughout the lifespan. Celebrate people with Down syndrome at all stages of life on March 21!

14) Children with Down syndrome are often fully included in social and educational
settings and increasingly go on to graduate high school and attend postsecondary
education programs. Celebrate these achievements on March 21!

15) Congressional Down Syndrome Caucus (CDSC) has over 70 Members of the House
of Representatives, and is led by Reps. McMorris Rodgers (R-WA), Pete Sessions (RTX),
Van Hollen (D-MD), and Holmes Norton (D-DC). The mission of the CDSC is to educate Members of Congress and their staff about Down syndrome. The Caucus supports legislative activities that would improve Down syndrome research, education and treatment and promotes public policies that enhance the quality of life for those with Down syndrome. Join forces with the CDSC and advocates for people with Down syndrome by signing up to receive advocacy action alerts from NDSS!
16) People with Down syndrome have their own unique talents and abilities – just like
everybody else! Celebrate their accomplishments this World Down Syndrome Day.

17) Many children with Down syndrome are included in regular education classrooms
alongside their peers. Research has shown that this has positive effects on the academic and social experiences of students with and without disabilities. Celebrate inclusion this World Down Syndrome Day!

18) There are over 400 real-life stories written by people with Down syndrome, their family members, friends, teachers, peers and coworkers in the My Great Story public awareness campaign. Read those in the collection and share yours in honor of World Down Syndrome Day!
19) People with Down syndrome are often subject to unfair stereotypes. Right the wrongs and separate fact from fiction with the NDSS Myths and Truths Guide and celebrate all people with Down syndrome this March 21!

20) The bipartisan, bicameral Achieving a Better Life Experience Act (ABLE) of 2011 (S.

1872/H.R. 3423) was introduced on Nov. 15th, 2011. The bill, which is supported by 83
Representatives and 9 Senators, gives individuals with disabilities and their families the
ability to save for their child's future just like every other American family!
21) This is the first year that World Down Syndrome Day is officially recognized by the
United Nations! Join the global celebration and let everyone know that people with Down
syndrome should be valued, accepted and included!

Monday, March 19, 2012

Day 19-Education

Only two more days until World Down Syndrome Day and I brought it into my classroom today.  I've always felt that school is more than just the subject you teach.  It's about a well-rounded education; which is why I make my students speak correctly and have asked them to do research papers with proper grammar and spelling all while sitting in math.  Today, I gave them an extra credit opportunity all while raising awareness for Down Syndrome. I told them that for 10 points extra credit, they could write down why World Down Syndrome Day is on Wednesday and also to give me one fact about Down Syndrome that is separate from the significance of Wednesday.  Most of them were excited for any extra credit opportunity, but since they all know about Tera, I'd like to think they found it just a little bit interesting.  I actually had a few that already knew what it was.  I'm excited to see what they turn in on Wednesday and what fact they include.  I'm also curious if it will spark any conversations or questions. 

On another note, tonight we had our first conference call as co-chairs for the Gigi's 5k Fun Run/1 mile walk.  Tom and I will be in charge of recruiting and organizing the registration and t-shirt aspect of the event.  This is something that the McHenry Playhouse has handled before so we are feeling pretty good about having taken on something that our location has experience with. 

Ok, so tonight is mostly an update.  Just not feeling a whole lot of inspiration.  Maybe tomorrow...

Sunday, March 18, 2012

Day 18

Last night we went to the Gigi's Playhouse hockey night at the Chicago Express game at the Sears Center.  Being the hockey fans we are, it was kind of a no brainer that we would attend when we heard about it, but I had no idea we'd be joined by 30 of our family and friends.  It was so great to have everyone there and it meant so much to Tom and I.  Though I say it over and over again, I'm still constantly amazed and touched that we have so much support from our family and friends.  It was St. Patrick's Day and everyone could have easily been celebrating some place else, but they chose to spend it with us and a cause that is important to us and though I've said it so many times already, I'll continue to say thank you to everyone who supports us in events like this. 

During the game last night, between the 1st and 2nd periods, an organization that teaches special needs kids gymnastics, cheering, figure skating, and dance, performed.  Tom and I went out to watch them and it was another moment for me where it felt like it was just the two of us and we were watching Tera's future unfold in front of us.  It's so amazing to see what other people are willing to do for kids with special needs and even more impressive to see young people doing it.  I think there are mixed emotions for both of us when we see events like this because on the one hand we really believe in the opportunities that will exist for Tera in whatever activity she chooses to do (as long as it's on skates).  But on the other hand, it's a reminder that it will be different for her.  I wouldn't necessarily stop at any other group of girls performing and think it's incredible.  I might be impressed, but I don't think I'd think about it for much longer afterwards and that's something that makes this different and reminds me that she's different. 

This week Tom and I agreed to be the co-chairs for the McHenry Playhouse for the 5k run in June.  We're both excited to be a part of such a big fundraiser and something like this makes me feel like I'm doing something positive during those darker times when self-pity rears it's angry head.  Those days don't happen as much as they used to, but I won't deny there are times, maybe not whole days anymore, when it definitely still happens.  During those times I try to remember that she's really doing very well and things could be much worse, but sometimes I don't want to try and make myself feel better, I just want to sulk and wallow and I think I deserve that every once in a while; we both do. 

Fact for the day:
Congressional Down Syndrome Caucus (CDSC) has over 70 Members of the House of Representatives, and is led by Reps. McMorris Rodgers (R-WA), Pete Sessions (RTX), Van Hollen (D-MD), and Holmes Norton (D-DC). The mission of the CDSC is to educate Members of Congress and their staff about Down syndrome. The Caucus support legislative activities that would improve Down syndrome research, education and treatment and promotes public policies that enhance the quality of life for those with Down syndrome. Join forces with the CDSC and advocates for people with Down syndrome by signing up to receive advocacy action alerts from NDSS!


Friday, March 16, 2012

Day 16-Lucky little girl

Something occurred to me last night that bothered me.  Every few weeks I find myself having to go through Tera's drawers to figure out what still fits her, what doesn't, and move stuff up to front drawers so that I don't forget about it until she doesn't fit in it anymore.  See, for pretty much every month of Tera's life so far except when she was born smaller than we all expected and around the 9 month mark, she's had an over-abundance of clothes.  This is due to several factors; she's a girl, she's the only baby boy or girl on either side of the family, and she's pretty cute.  It's also the result of several women on both sides of the family that love to spoil this little girl and have since the day they found out she was on her way. 

So I go through her drawers and pull stuff out and it goes into bins for what hopefully will be another girl sometime in the future.  I say hopefully mostly for convenience sake.  We already have a bunch of girl stuff, and yes probably way more boy stuff than we should considering she is in fact a girl, but still mostly girl stuff.  These bins then go into our crawl space and wait to hopefully be used again.  This process always makes me a little sentimental because it is another reminder that my baby is getting bigger and so much of her stuff is just so freakin' cute it's hard to pack away!

What bothered me about this last night was that I have this problem at all.  It crossed my mind that it's a "problem" that she has so many clothes and then I began to think about other kids.  Far less fortunate kids that may never really wear a new piece of clothing in their life.  Kids who's whole wardrobe is hand-me-downs, Goodwill, and other clothes people have deemed not "good" anymore.  That thought made me sad because I know Tera will not know those hardships and I can't even begin to imagine how those families live.

But what made me even more sad, was the idea that Tera has so many of these things because she is so incredibly loved by so many people, and there are so many kids out there that don't believe they have one person in the world that loves them that much.  Tera is spoiled because her family loves her so much they can't help but buy her things.  Not just because they can, but because they want to.  It's not a matter of a whole bunch of people who have so much disposable income they just can't figure out what to do with all their money.  It's a matter of a whole bunch of people that see things that they think will make her happy and feel good and they want that for her. 

I think about these things when I'm at work.  How many kids do we have walking through our halls that have parents that don't give a damn where they are? How many kids are out there that just wish someone in their family would love and take care of them?  And worse, how many parents are out there that really don't give a damn where their kids are or what they're doing? There are certain things you don't truly understand until you're a parent and I can honestly say that because there were many things I didn't until Tera came along.  But it breaks my heart that any person can bring a child into this world and not just absolutely love them and want to do anything and everything for them.  I respect the parents out there that understand and realize they aren't capable or wanting to take on that responsibility and give them up in a responsible way so that their child has a chance to be loved and taken care of by someone else.  Not everyone out there is cut out to be a parent and kuddos to those people who realize that and make the right decision. 

Tomorrow my baby will wake up loved, happy, and smiling.  She will be surrounded by a group of 30 people tomorrow night who just want to see her, support her, and love her.  I will probably continue to think of those kids who don't have what she has and it will always bother me.  I will do what I can when I can to help them and in the meantime, I will take care of the life Tom and I brought into this world because no matter what happens in the rest of the world, I know that we can do that. 

Fact for today:
The bipartisan, bicameral Achieving a Better Life Experience Act (ABLE) of 2011 (S.1872/H.R. 3423) was introduced on Nov. 15th 2011. The bill, which is supported by 83 Representatives and 9 Senators, gives individuals with disabilities and their families the ability to save for their child's future just like every other American family!

Thursday, March 15, 2012

Day 15-Things to pass down

I was stuck on what to write tonight (I believe it's the sheer exhaustion I seem to be experiencing) so I asked Tom for help.  His first response was what his response always is when I need help with this: him.  I asked again and I liked the second suggestion more: things I would like to pass down to Tera. 

This is a long list, but I'll try to pick the most important (and fun).  I would like for Tera to have our sense of humor.  Tom and I have been through some tough times together and even in the hardest of times, we've tried to use laughter and our sense of humor to get us through it.  We utilize it now probably more than ever to deal with the difficult times with Tera and I want her to be able to do the same thing. 

I hope she inherits our love of hockey.  This would really just be more convenient than anything because it's the only sport we've ever really pictured her playing.  Plus, we both know the sport so we wouldn't have to learn anything new and we already have lots of jerseys so we wouldn't have to buy any new fan paraphanalia.  It would be nice if she liked the same teams as us, but I suppose we can allow a little flexibility. And really, it would just be a nice, bloody, violent family bonding activity. 

I would like to pass down the importance of hard work.  I've had to work hard for many things in my life and try not to take too much for granted.  Tom and I have already promised each other we would provide everything we can to Tera, but I also want her to understand that things don't just happen, you have to make them happen.  Based on what I can guess about the struggles she will most likely endure, I can also guess she'll understand hard work better than a lot of people. 

I think Star Wars goes without saying.  We pretty much figured that since she wakes up and falls asleep to the movie characters and posters every day, she won't know anything but a love for "The Triology". 

My love of cleaning.  This kid has never once flinched from the sound of the vacuum and I believe it's because since she could hear anything from in the womb, it's been a comforting, familiar sound.  Even after she was born I used to be able to get her to fall asleep if I turned on the Swifter.  Her current obsession is checking under all the rugs. I believe this is her way of telling me to stay on my game because she's always watching.  I haven't started using bleach on things yet, but if I continue to follow along the footsteps of my mom, it won't be long.  When people look back on their childhoods, they often think of familiar smells like cookies baking or their mom's perfume; I think of Clorox.  Don't get me wrong, I also loved her cookies and perfume (in fact after she holds Tera I can always smell it on her and it always makes me smile), but bleach is really her forte.  With any luck, my daughter will be the clean freak, neurotic straightner, and obsessive vacuumer that her mom and Nani are. 

Maybe tomorrow I'll be more sentimental.

Today's fact: 
People with Down syndrome have their own unique talents and abilities – just like everybody else!


Wednesday, March 14, 2012

Day 14-Mom conundrums


I do not think I would be good at being a stay-at-home mom.   Last year when I was home with Tera for six months, don’t get me wrong, I loved it.  I loved knowing everything that was going on with her, I loved taking care of her, and I loved not working for once, and I’m so excited to be home with her again for Spring Break and for sure for the summer.  And I miss her like hell when I am working.  Of course it probably also really helped that she was such an easy baby. 

It’s a constant struggle to keep my sanity by working full time and trying to be a good mom and spend time with her and make sure that we practice all that we should be for therapy and even trying to schedule all the therapies.  But even with all that, I don’t know that I could be home all the time.  I could definitely handle part-time, but I can’t even say that I would like an “easier” full time job because I know myself.  I like being  challenged and I like being a professional.  I just wish there were about 10 more hours in the day so that I could balance everything. 

This is at least one of those things that I know is a “normal” mom thing and not just a DS mom thing.  It’s nice to experience some normal mom stuff and know that not everything I go through is related to DS.  I know some stay-at-home moms and I have a lot of respect for them.  Even though Tera is an easy kid, I know that there are days when I was home with her that were harder than being at work.  But when I went back to work last August, I also knew that I needed some time away from Down Syndrome.  I had just spent the last six months learning everything I could about it, attending parent groups, play groups, therapies, and so on and I was kind of in need of a break from focusing on that all the time.  I still spend a lot of time on DS stuff, but now I have other things to keep me distracted from thinking about it all the time and I think I needed that. 

But do I wake up most mornings and wish I could just stay home with her? Yes.  Do I spend large amounts of my day thinking about her? Yes.  So how do I figure this out? I have no idea.  And my guess from talking with my other mom friends is, there is no answer in sight. 

Tuesday, March 13, 2012

Day 13-Good day

Today was a pretty good day.  I'm completely exhausted and I've caved on trying to hold off counting down days until Spring Break.  I have to wake up eight more times and I must admit, I cannot wait.  I have a fairly hefty to do list for work and a shorter but still existing list at home right now and it seems that every night I have these intense dreams that last all night and when I wake up I feel like my brain never turned off.  This is actually better sleep than I was experiencing a month or so ago thanks to some great advice from a friend on the occasional use of Melatonin.  But I'm just exhausted. 

What made it such a good day is the news that my sister found out she got her dream job today.  She is finishing up her Master's degree in Public Health and was just hired by the American Academy of Pediatrics.  I'm so incredibly proud of her and it means that she will very soon be living back in the area.  That means two out of my three sisters will be in close proximity.  The other one, not so much, but I keep trying...

Then this afternoon Tera's PT and DT did an assessment of her together for her annual review next week.  They are tentatively putting her at around the 8 month mark both developmentally and physically.  I'm okay with this because I understand that there are some 8 month olds that weren't doing what she was doing at 8 months and there are some 12 month olds that aren't doing what she's doing now.  Every kid is different and while mine is chromosomally different, she works her little butt off and we are so very proud of her.  Her therapists are thrilled with her progress so far and while she's not doing everything on the list, what she is doing, she's doing very well.  It makes all those times when we're trying to keep track of what to work on, so much more worth the time and effort when we know it's paying off.  We'll find out the specifics of her progress next Wednesday with all three therapists and also discuss having her evaluated by an occupational therapist to see if we need to start that therapy or see if she's on track for right now.  It's intimidating to think about trying to add another therapy into an already full schedule, but we promised her we'd do whatever she needed so we'll make it work somehow (this is optimisic me talking, the realistic me will probably come out in a month or so when we're in the throes of trying to make it work...)



Monday, March 12, 2012

Day 12-Trains of thought

I'm sitting here wondering where to start.  I'm not being over-dramatic, I just have some thoughts swirling around and I haven't quite chosen which ones to write about.  I'm going to start with this: we were able to see Tera push onto her hands and knees (not new and actually has been more frequent the past day or two), and then she  pushed herself into sitting! I was so excited I almost teared up.  I guess this would be one of the slight advantages to having a kid with DS, you really get to enjoy when they reach a milestone because it seems to be such a bigger deal.  There are so many things I don't think we would have ever even thought of as accomplishments if we didn't have three therapists telling us about them. 

The most frustrating part lately is trying to figure out what changes she's going through and what they might be related to.  She's been a little crankier lately, not eating as well, and her napping seems to be a little off.  We of course go back to teething.  This has been what we've thought is wrong pretty much every time she's been sick for the past four months and she has yet to show the slightest evidence of actual teeth.  Everytime, we think, ok this time it's really teeth.  And then it's not.  So we go back to guessing.  Is it a stage? Sinus infection? Ear infection? I really have no idea.  One of the things I hypthesized today is about something I've read a few times.  That sometimes when kids are working on a new skill, in Tera's case maybe her getting closer to crawling, some of their other skills fall by the wayside.  So here's my hypothesis: she's working on getting onto all fours and moving, so she's stopped feeding herself for the most part.  We'll see in a few days if this is the case.  Or I'll start looking for teeth again. 

Tom also told me something today that made me think back again to last year.  He found out that one of the women that works for him has a friend that just had a baby.  And that baby has Down Syndrome.  They didn't know; it was a surprise diagnosis just like ours.  So Tom gave her his email address and told her to check out my blog, but I remember all too well that shock and the constant wave of emotions that just feel like they're holding you under sometimes.  And I remember the good feelings too.  I hope that she contacts us, but I also know those first days are so overwhelming and part of you wants to read everything and part of you wants to read nothing.  So we'll see. 

Ok, that's enough of jumbled thoughts. I need to look up more symptoms of teething...

Fact for today:
NDSSParents to anyone who receives a Down syndrome diagnosis pre or post-natally.


Sunday, March 11, 2012

Day 11-Then and now (again)

Ok, I think this might be a real post finally.  What a crazy weekend and now it's Sunday night and tomorrow I encounter my sworn enemy again: Monday.  But let's start with how today went...

Because we were gone all day yesterday, I had a lot to get done today.  I still didn't make it through everything, but I'm very proud of myself for postponing some things from my list that weren't "crucial" and instead was able to go to the park with my little family.  I took Tera once or twice last summer, but just to meet up with her BFF and mostly to watch her BFF's big brother play since the girls were only a couple months old.  Today she was finally able to do stuff.  She got to ride on the swing and go down the slide and I think she really enjoyed it.  Then we walked home, picked up the dog and took her for a walk and the whole time she just sat right up in her stroller watching everything around her.  It must have been quite the experience because when we got home she went down for an almost two hour nap. 

But this isn't really what my post is about.  This morning, as I sat on the couch in our living room giving her a bottle and seeing how beautiful it was outside, I was taken back to last spring.  I thought about all the times I had sat in that very spot feeding her and relishing in my new daughter.  I remember sitting in that spot and breaking down into tears for fear of the unknown.  I remember reading a beautiful book called "Gifts" given to me by an incredibly thoughtful and wonderful person and smiling at the encouraging parts, and crying at the parts that I hadn't thought of yet.  I very vividly recall coming to the realization that Tera more than likely won't have kids of her own and just bawling because I was home by myself with her and couldn't talk to anyone at that moment.  But mostly I just remember how completely in love with her I was and how amazing it was to hold her in my arms and feed her and watch her sleep.  I also thought about the fact that I was home with her that whole time and how much I miss that.  Even with a second baby, I'm not sure I'll be able to swing another six month leave and I'm so grateful for every minute that I had of that with her. 

And as I sat there today with her, remembering all of that, I thought briefly about how much I miss some of it.  But then I started thinking about how much I'm looking forward to this summer with her.  Not just the time off, though it's hard not to think about that daily, but more about all the stuff that we'll be able to do with her this summer now that she's older.  And today at the park was a perfect example of that.  We did take her swimming a few times last summer, but she was really too little to do much.  Now we know she loves the water and it will be so much more fun to take her to the beach and the pool.  We can take her outside in the backyard and do stuff with her, assuming she walks at some point, but even if she's not there yet, she can just be outside more than she could at four or five months old.  We started talking a little bit about a family vacation and it made me realize how I'll be able to enjoy this summer just as much, just in different ways.  I've said this before, but it's one of the best pieces of advice still that I've received: I just need to enjoy the present and what it has to offer, and not worry about when she'll get to the next step or the next milestone.  She's shown us numerous times she will do it, it just may be a little later than expected.  Although in her case, so far, not that much later than expected...

Fact for today:
A few of the common physical traits of Down syndrome are low muscle tone, small palm, but these are not indicative of the many strengths and talents that each individual possesses!


Saturday, March 10, 2012

Day 10-Total cop out

So after a crazy busy day and the time change tomorrow, I'm copping out again tonight.  This is short and sweet and just a fact and a few pictures. 

There are three types of Down syndrome. 95% of people with Down syndrome have Trisomy 21, a full additional copy of chromosome 21, 5% of people with Down syndrome have translocation or mosaicism, and have partial additional copies in all or some cells.

She did this all by herself.

And this too...

This is just pure Tera.

Friday, March 9, 2012

Day 9-Language

Ok, so I'm exhausted and also trying to set up my new computer.  I'm also not feeling overwhelmingly insightful tonight.  But seeing as how my goal this month is to raise awareness for DS, I will use this opportunity to share some of the suggestions of the NDSS. 

Many of you know that Tom and I are not easily offended.  We use humor to get ourselves through tough situations and Tera's situation is no different.  While we have never underestimated the seriousness of this in our lives for the rest of our lives, we do joke our way through the rough patches because it's how we deal.  Therefore, I'd like to share the following information with this in mind: Tom and I do not expect people to walk on eggshells around us where DS is concerned.  We do not want people to feel uncomfortable around us or Tera with the fear that they might say something wrong.  However, there are other people in the DS community that more sensitive to terminology and since we hope many of you will now maybe take opportunities where you might not have before to interact with these very special people and their families, we do want you to be informed about what other people hope for and also to help you be as respectful as possible to individuals with DS.  Many of these are things I myself never had any idea about before Tera entered our lives and so I assume many of you may not know them either. I'd like to share this with you so that you may be more informed and maybe help spread the word on what the "preferred" language is. And if you're ever wondering how we feel about anything, please don't ever hesitate to just ask us or email us if that's easier. 

Below is the proper use of language for “Down syndrome”:
Down vs. Down’s - NDSS uses the preferred spelling, Down syndrome, rather than Down’s syndrome. While Down syndrome is listed in many dictionaries with both popular spellings (with or without an apostrophe s), the preferred usage in the United States is Down syndrome. This is because an “apostrophe s” connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using “Down syndrome,” as well.
• People with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”
• Down syndrome is a condition or a syndrome, not a disease.
• People “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it.
• While it is unfortunately clinically acceptable to say “mental retardation,” you should use the more socially acceptable “intellectual disability”. NDSS strongly condemns the use of the word "retarded" in any derogatory context. Using this word is hurtful and suggests that people with disabilities are not competent. 

Thursday, March 8, 2012

Day 8-Work blues

A new laptop and I'm back! The past few days have been difficult for me.  Basically, I'm tired.  Not just physically tired (although that's very true), but mentally and emotionally as well.  I'm burned out at work and it's just so exhausting to keep fighting my kids class after class, day after day, to do what they're supposed to be doing.  I will not deny that what I ask them to do at times is difficult.  I know math doesn't come easy to many people and I would be okay with that.  What I have a very hard time dealing with is the overwhelming apathy at times.  I don't ask that they love math, but it would be really great if I didn't have to hear every single day how they're never going to use it and that it sucks and is stupid.  I just can't come up with an example every time they want to know when they're going to use something.  Honestly, in high school, I didn't really think I'd be teaching it, but here I am.  But I can't use that because before I can even finish my statement, I'm told that they would NEVER be a math teacher so it doesn't matter.  What I'd really like them to understand, is that, more than just being able to regurgitate a formula, I'd like them to learn how the process of math applies to life; how it helps them think logically and problem solve.  That certain processes even exist to look for when needed, more than memorize concepts.  This is a difficult time for both students and teachers because of the time of year, and the fact that because of our strike, we've been going without a day off for a while now.  But it's more than just right now; I've had this feeling since the beginning of the year and more and more the past few years.  I want them to take responsibility for their own actions and understand that choices have consequences.  Them not doing their homework is not my fault because I gave it to them.  I always make sure they understand they have a choice.  Choose to do your homework or study for a test or not, but understand that it is YOUR choice and your consequence to live with. 

There are so many things that I've learned about being a parent from being a teacher, and it's one of the things I still struggle with when it comes to DS.  Before Tera was born, Tom and I had so many conversations about what we thought would be acceptable expectations as far as academics.  Both of us are fairly intelligent, but I was a far more dedicated student than he was.  I've often told him he was the epitome of "doesn't work up to potential".  He was very bright, but lazy, and in his eyes, didn't see a point to over doing anything when coasting was working just fine for him.  I, on the other hand, worked my ass off.  Did it make me a better person? No, but I feel like I was better prepared for college and in my mind, it was something I could control in a sometimes crazy life.  When we had these conversations, I made it very clear that while I would never demand all A's in school, but I would expect our child to do their best.  If they were brilliant, C's would not be acceptable.  If they struggled in school but worked hard to get C's, then I would be right there cheering them on and applauding their report card.  I feel like it might be different because some things may always be a struggle for her.  I know it doesn't change the fact that we keep our expectations high and always ask that she do her best, I just feel it will be different in finding out how best to help her find that success. 

What I ultimately want for Tera, and my students, is for them all to find success in school that will lead them to happiness in the workplace; wherever that may be.  I know too many people who hate their jobs and are miserable all the time and I just don't want them to waste their opportunity to make something of themselves.  Unfortunately, I think many of them will find this out too late. 

Today's fact:
Children with Down syndrome are often fully included in social and educational settings and increasingly go on to graduate high school and attend postsecondary education programs.
I don't currently have access to my pictures yet, so I looked through some of the ones on my phone and got nostalgic.  I was so happy on the day I took this because she finally had something of her own on.  It was so big on her at the time...

Tuesday, March 6, 2012

Day 6-More doctors...

So this is another one of those good news, bad news type of days.  We had Tera's check up with the cardiologist today and once again, he's happy with her progress.  She didn't have the echo done this time, but her EKG was unchanged which is fine because major improvements don't usually happen in 6 months.  Also, her murmur sounded a little louder.  This may seem like a bad sign, but in fact it's actually a very positive sign. As a hole gets smaller, it has to push the same amount of air through a smaller space making the sound louder, so the louder murmur actually means the hole is getting smaller.  Her next appointment will be in six months and he'll probably do the echo then. 

The bad news is we then had to go the pediatrician for either shots, a sinus infection, or both.  She wasn't able to get her one year vaccinations at her one year exam because of the pneumonia so I figured I would just schedule them for today after her cardio appointment.  However, as I said yesterday, we were suspecting she has another sinus infection and apparently the pneumonia isn't completely gone so we weren't sure if they would do the vaccinations or not, but figured we had to take her in for the possible infection anyway.  Basically it looks like she does in fact have another sinus infection. 

I talked to him about what we could possibly do to keep this from repeatedly happening and also what might be causing it.  He told us that in her case, every time she is exposed to a virus, it basically triggers a sinus infection and that until she stops getting viruses (hopefully when winter is actually over) she'll probably just continue to get them.  He told us to try and use the saline spray as much as possible to keep her sinuses lubricated and clear and that hopefully that would help prevent them.  I'm also going to look into doing a saline flush and see how that goes.  We did decide not to give her antibiotics this time.  For anyone who may not know, many types of infections will actually clear up on their own without antibiotics; sinus infections and ear infections included.  The main reason for antibiotics is to speed up the process and help ease discomfort.  But it's pretty clear nothing is bothering this kid so Tom and I were not only willing to bypass another medication, but thrilled that he was the one that suggested it.  I also brought up the possibility of allergies being the cause behind the infections.  Seasonal allergies run in my family and mine have been awful this winter.  He said that if hers were allergies, the symptoms would be more consistent and not so much up and down like what hers do.  It is a possibility, but we're going to hold off on having her see an allergist for now. If the infection seems to get worse, we can just email or call him to start the medication. 

We also talked about how it could affect the pneumonia and he told us that since she's been without symptoms for a while now, she should be okay, but just to keep an eye out for any new or worsening symptoms. 

She was able to get two of the four shots she needed.  We held off on the chicken pox and MMR vaccinations since those can affect a weakened immune system and that seems to pretty much sum her up lately.  She took the two she got like a champ, minimal crying, and we packed up and headed home.

By the time we got home we were both exhausted.  Even with both of us at the appointments, it's tiring to carry around and entertain a one year old at two different doctor appointments; one where the doctor was behind and one where she had to get shots.  We were able to get out though and enjoy the weather and take Tera and Jaina for a walk, which we all kind of needed.

But I am just so tired.  I'm trying not to think about the fact that Spring Break isn't too far away now and just focus on trying to get through these weeks.  I'm just tired of being tired.  All three of us need a break from life and being sick and I'm not sure when that will actually happen.  I think June may be it...

And now for today's fact: There are over 400,000 people living with Down Syndrome in the United States. 

Monday, March 5, 2012

Day 5-That's it! They're coming out!


And today I wonder again, why? Without confirmation as of yet, I have a suspicion that Tera might have another sinus infection.  Does a person really need their sinuses? Because I’m really wondering if she’d be better off without them.  She still hasn’t even been able to get her one year vaccinations because we had to wait until she was clear of the pneumonia , now this?  She finished her antibiotics last Tuesday morning so we haven’t even made it a week yet and I really have to wonder, what do we do at this point? Is it a new one or the same one that didn’t clear up last time.  If it’s a new one, it seems like she would have hardly had enough time to even get a new one since she’s been off her medicine and if it’s the same one, what the hell will knock this out? Four different types of antibiotics in 26 days isn’t enough? I’m really at a loss.  And no, I don’t know for sure if that’s what is, but I haven’t been wrong yet on this one. 

I’ve read that sometimes doctors will prescribe a low dose antibiotic for the course of a year to help keep the infections from starting, but I really hate that idea.  Tom and I are not people to over-medicate and one of the first questions we’ve asked both practices we’ve been to is how likely they are to prescribe medicine when it’s not completely necessary because we didn’t want her to be on something every time she has the sniffles.  But so far, every time she gets the sniffles, it turns into a sinus infection at best and pink eye, an ear infection, and pneumonia at worst. 

We got the results of her chest x-ray and they said the pneumonia is improving.  I didn’t even know that was an option, I pretty much assumed they would tell us it was either gone or hadn’t improved.  Now I have the added worry of another sinus infection making the pneumonia worse before it gets better. 

Tomorrow she has her check up with the cardiologist so I’m really hoping we have some good news there. 

I’m not feeling terribly positive about Down Syndrome today.  Not quite at the cursing stage yet, so Tom will have to wait for that outburst, but definitely not positive.  But here’s the fact of the day:  The life expectancy for people with Down syndrome was 25 in 1983 and is 60 today.




Sunday, March 4, 2012

Day 4-When she came home

I'm a little upset with myself because I did in fact forget to write a post yesterday.  In my defense, I think we were only home for about three hours during the day, but it's really no excuse.  On the plus side, the reason I didn't have the time to write it was because we were visiting with friends.  In the morning we were able to spend some time with our friends Michelle and Jeff and their adorable twins.  Then we came home, got a few things done, and then headed out to our friends' Tim and Katie and our sweet little niece Danica.  The hard part about large gatherings, like the ones we've had or been to lately, is that you really don't get to spend a lot of time with any one or two people.  It's also harder on the babies because they're not always themselves, or at least ours isn't, when there are lots of people around.  So yesterday was a really great day to actually get to catch up and just relax and visit.  Today, unfortunately, I had to catch up on stuff.  It wasn't too bad and I feel like I got done what I wanted to, but now I'm wondering where the hell the weekend went. 

Today is also the one year anniversary of another one of my favorite days ever.  The day we were able to bring Tera home from the hospital.  She was only there for seven days total, but it felt like forever when we were living it.  Thinking back, we spent those days after I was discharged, living out a bag in the hospital lobby.  We brought our meals with us so we weren't living off of cafeteria food, I brought my computer and answered emails and we spent the rest of the time in the NICU with her.  We'd leave when she slept for a while and then come back for her feedings. We usually got to the hospital around 7am and then left around 8 or 9 pm.  I'd wake up once or twice during the night to pump and the rest I did at the hospital.  Every feeding, every day, we'd hope harder than we'd ever hoped that she would take at least 30 ml (around 2 oz) without the NG tube.  The doctor had told us that she would be there at least seven days for the antibiotics, but that she would also have to be able to feed on her own before they would release her and that they were hoping for around 50 ml before that would happen.  Thursday, when we got to the hospital, my strong baby girl had pulled the NG tube out and they decided that instead of reinserting it, they would see if she could do it on her own.  Finally, I think that Friday, she was getting close to the 50 ml mark and told us they would do the car seat test that night in hopes of us being able to go home with her on Saturday.  They perform a car seat test on every baby in the NICU before releasing them to make sure they don't desat (drop oxygen levels) while in there.  The baby has to maintain safe levels for an hour and a half to pass.  Leaving on Friday was a little stressful. Neither of us could deny the excitement of the anticipation of being able to bring her home the next day and finally begin our life as a family at home.  But at the same time, we had to be prepared emotionally if she wasn't allowed to come home.  The next day we excitedly left for the hospital and when we arrived, we found she had already had her discharge papers signed.  I'm fairly certain I cried. 

We had a few things to do before we could actually leave like do a CPR training on DVD and wait for her last dose of antibiotics to finish.  While I pumped one last time at the hospital, Tom was able to finally remove our sweet girl from all the tubes and wires and finally carry her, without attachments, for the first time since the day she was born.   I made several phone calls letting people know we were really coming home and arranging who would be coming by to see the newest addition finally in her own home. 

I dressed her in her homecoming outfit, which was huge on her, we spent over ten minutes just getting her secured in her car seat, and we left for the first time as a family.  I sat in the backseat with her on the way home and she cried most of the 15 minute drive.  When we finally got her home, I just carried her around revelling in the idea she was finally ours with no doctors or nurses, wires or tubes.  That first night I was completely paranoid to leave her in her crib.  After all, she had spent every night of her short life thus far, attached to machines that would alert someone if her breathing or heart rate slowed down.  I did manage to do it though and waking up with her in the next room was one of the best feelings ever. 

One year later, even if it's earlier than it should be, I still look forward to seeing her face in the morning. 

Fact for today:
One in every 691
Homecoming day

Friday, March 2, 2012

Day 2-Oh those sweet little ears...

Today was one of those days I got to deal with one of the many "side effects" of Tera having DS.  Most of you know that after four failed hearing tests, Tera had tubes put in her ears in mid January.  Today she had her follow up appointment with the ENT and also another follow up hearing test.  She did great during the behavioral hearing test in which I sit with her in a sound proof room and the audiologist plays sounds in different parts of the room and rates her based on how she responds to the sounds.  She also had this done about a month ago with her two audiologists at SEDOL (Special Education Department of Lake County) and did very well then also, showing a big improvement over the first time they performed the test.  The actual diagnostic tests done today also seemed to show that there was improvement from before the tubes.  Obviously good news, but we kind of already knew that based on the same tests at SEDOL.  Then we saw the doctor and after about two seconds of attempting to look in her ears with the regular scope, decided he might as well just use the giant scope.  The reason for this is because she has VERY small ear canals.  Not the smallest her doctor has ever seen as he informed us, but pretty damn small. 

I refer to this as a "side effect" because one of the many characteristics common in people with DS is small canals and passageways.  Their ear canals are very often smaller than usual which is one of the causes of chronic ear infections and fluid that doesn't drain.  Small nasal passages are also one of the reaons she's more prone to sinus infections; that, and a somewhat underdeveloped immune system. 

Anyway, once he was able to use the giant scope on her ears, he discovered a blockage in the left tube.  This of course led to him having to remove the blockage which entailed a nurse holding her head still and me pinning down her arms and legs with my body.  Not only was there a blockage, but there was also very thick fluid behind the blockage, which then had to be removed.  So then on top of already being tired, she was now very uncomfortable and we now have MORE drops that need to be put in her ears.  It took me 20 minutes to calm her down and then at least she was able to sleep in the car. 

So for now it's seven days of drops.  Again.  Then we go back in two months unless there are problems that come up between now and then.  Right now it's not even the stress of having to deal with her being sick, I'd just really like for her to feel healthy and comfortable for a few weeks before the next onslaught of germs attacks.

Today on Pinterest (which I'm still figuring out) I found something that just seems to ring true lately.
Dear Life,
When I say 'Things could not get any worse', it is Not a challenge.  

Thursday, March 1, 2012

My mission for March


Welcome, oh welcome, March; hopefully you’re a better month than February.  It does seem that it’s already much better as we found out today that my brother in law’s CT scan came back clear and he doesn’t need another for one year. He is cancer free! We also were able to spend this evening with some of our very best friends and I’m reminded that no matter what difficulties we might endure, we have some pretty fabulous friends that are always there for us.  Last year at this time we were all rejoicing with them in the birth of Tera, and at the same time, leaning on them as we dealt with the news of her diagnosis and also the difficulty of her being in the hospital after I had been discharged.  This year we are able to celebrate the fact she’s healthy (finally), Mike’s healthy, and that she’s been joined by the daughters of two of our other best friends. 

 Well, regardless of how this month turns out, I’m attempting another straight month of blogging.  I feel I’ve done pretty well since my first attempt in October and then again in December and to be honest, it’s mostly because of all the positive feedback I’ve received.  I don’t think I ever envisioned so many people really awaiting my next post and it makes it so much easier to do.  But this month there is another purpose.  On March 21st, we will celebrate World Down Syndrome Day.  Why, do you ask is it on March 21st? Well, hopefully by now my witty way of imparting information has reached you and you know that Down Syndrome is caused by a third copy of the 21st chromosome; hence the name Trisomy 21 and also the reason that 3/21 (March 21st) is World Down Syndrome Day.  This is the first year that this is being recognized by the United Nations and the point is to help spread awareness about DS.  To be honest, last year when it came around, I had no idea that it even existed.  One of my former students who also has ties to DS, told me about it and I loved the idea (I think it’s my inner math geek with numbers).  This year it’s an actual campaign and the NDSS (National Down Syndrome Society) asked anybody who blogs, to share the button on their blog (it’s just to the right of this post) and to also try and help spread awareness through their blog, so here I am.   

I’m going to try sharing some facts about Down Syndrome, some stories of what’s it like to deal with DS in a household, and what it’s meant to us so far.  At this point last year, we had just barely begun our journey.  I was reading lots of information, some of it very scary when you’re just starting out, and trying to make myself more informed.  This year, with a whole twelve months of experience under our belts, I’ll try and share some of that with all of you.  Along with that, I would love for anybody who has any questions about DS or our experiences or feelings about it, to ask.  You can either post a comment here, on Facebook, or email me and I’d be happy to share what I can with you.  Tom and I are very open about everything so please don’t feel bad about asking, the whole point of this is awareness and as my students always claim, there are no stupid questions (I tell them there are, but not about this).  I’d love to share the questions and answers here also, but I’ll keep anyone’s name off of it.  So please ask!

And now, for fact number 1:  Down Syndrome is the most commonly occurring chromosomal condition.  

So while Tera beat the odds of being born “typical”, she apparently lucked into the most common form of chromosomal conditions.  Not sure how I feel about either one of those things, I think it would depend on the day you ask me.