Sunday, January 27, 2013

Tera (was) 23 months!

Yesterday was kind of crazy so I didn't have a chance to post Tera's 23 month update, so here is my form of it.

I love Sunday mornings.  I don't love Sunday nights, but I love Sunday mornings because I either get to sleep in (if I manage to actually fall back asleep after Tom gets up with Tera) or I make Tera breakfast.  This morning I got up with her and made her waffles (her favorite) and then we played.  On Sunday mornings I enjoy my coffee (with Bailey's) at home and I play my Sunday morning play list and enjoy my house and my family.  This morning as I watched Tera play with her Cabbage Patch doll that she got from my grandma for Christmas, I realized how much she's grown up in the past year and that of course brought me back to the day she was born.  My mind was a mess of thoughts in those early hours today and some of the thoughts made me smile and others made me tear up.  I am so incredibly proud of everything Tera has accomplished in her two years, but especially in the last year.  She's so much of a little person now instead of a baby and I still just can't believe she's going to be two in one month.

For whatever reason, while I watched her play, I was reminded of the day she was born.  In our birthing class, the nurse that was teaching it told all of us soon-to-be parents that as much as we would fall in love with our new babies and not want to leave them, we should take advantage of the nursery on that first night and have the nurses take care of the baby while we got what might be some of the last sleep we would have for a while.  Tom and I had agreed that would probably be a good idea and after receiving Tera's diagnosis so early in the day and the exhaustion that resulted from little sleep the night before, that whole giving birth thing, actually getting the diagnosis, and then hiding it from all the visitors we had that first day, we really thought it would be a good idea that first night.  However, despite our best intentions, rest was not to be.  We had some room issues around 10pm (we couldn't get the TV volume to work and then my bed wouldn't adjust) and they decided it was in our best interest to switch to the room next to us. But right before that we had a visit from a doctor from Children's Memorial.  He had come to tell us that despite all we had already dealt with that day, Tera had three holes in her heart and that one was fairly large and of some concern.  I'm not even sure how I reacted because I literally think I was still numb from everything else and I'm not sure at that point that I fully grasped what that might mean.  At that point they decided that instead of her going to the nursery that night, she would be transferred to the NICU, which, unbeknown st to us at the time, was where she would spend the next six days.

I know I'm going a little out of order here, but after all the visitors had left for the day and before all this craziness happened, Tom actually had a chance to take our new baby girl and just walk with her.  I remember so vividly watching with such happiness as he held our sweet baby and just paced.  Both of us completely unknowing that it would be the last time either of us would hold her for six more days without tubes and wires.  I think back on that and it breaks my heart that we lost those six days to so much stress, worry, and fear.  I also remember so clearly one week after she was born, the day we had hoped for so many days would finally be the day we could bring her home; I remember as they removed the last tube from her and finally handed her over to Tom and he was once again able to walk freely with her.  He actually had to ask the nurse to make sure it was okay to walk around with her because almost all of our time with her up to that point had been limited to the two or three feet from her little incubator.

I have no idea why I thought about all of this this morning, but I did.  Almost two years later, Tera has exceeded all my expectations and continues to amaze me on a daily basis.  I know that she is delayed in comparison to many typical kids, but she continues to surprise me with how her mind works.  I don't know that I can name many new skills this month, but I can tell you that I love this child more than I ever thought possible.  She can be the devil incarnate on some days, but she can also overwhelm you with her sweetness and affection. And many times she manages to do both at the same time.  Talk about skill...

Unfortunately we are no closer to saying we are in the clear with pneumonia yet and every night for the past week I've gone to bed worrying we're going to be woken by throwing up and an ER visit.  Today she fell asleep during two of her four nebulizer treatments and only had a one hour very restless nap.  Then this afternoon she seemed to be running a low grade fever.   The plan right now is that Tom is taking her in tomorrow afternoon for another checkup.  We are also planning to find a pulmonologist (lung doctor)  to consult regarding the three (possibly four) cases of pneumonia in the last 12 months.

I'll update in the next day or two.

Thursday, January 24, 2013

Pnuemonia Watch 2013

I knew before I became a mom that parenthood would be an emotional roller coaster, but like so many other things in life, I didn't truly understand it until I actually experienced it.  There are few other things in my life that have given me the kind of joy and pride that Tera has; sometimes I feel like I couldn't possibly love her anymore.  And at the same time, I've never experienced stress or worry like I have since she's been born.  We're currently on pneumonia watch again.

Since Sunday's sick call visit, Tera's cough hadn't gotten any worse, but it also hadn't gotten any better.  Tom and I just discussed this morning contacting the doctor to find out what our next step should be.  Then this morning we got a call from her school saying her cough had gotten much worse and that it had happened rather quickly.  I of course was in a meeting all day and couldn't be reached, but fortunately with technology being so wonderful, when I saw his text and the missed call from daycare, I was able to email her doctor from my phone and ask whether or not we should bring her in.  Of course, the doctor suggested we did.

The other wrinkle in our life right now is that our cat has also gotten more sick.  Without putting her through the stress of an x-ray to confirm, we are working under the assumption that she has stomach cancer.  At the same time that Tera got pneumonia the last time, they diagnosed our little kitten and said we might be able to make her more comfortable and keep her with us a little longer by giving her a steroid shot that should work for a month or so.  After the initial shot we noticed a vast improvement, but a few weeks back she began to show the same symptoms as before.  Tom's plan had been to bring her into the vet this afternoon to try the shot again and I was supposed to be able to try and workout.  But of course with Tera's worsening cough, plans had to be altered.  So like we did just a few months back, I took Tera in to the doctor to see about pneumonia and Tom took the cat in to see if we could fix her up a bit.

I had better news than he did (at least for now).  The doctor said Tera's lungs still sound clear, but when she had this last time it was located in the area right behind where her heart murmur is; which makes it very difficult to tell whether or not there is fluid in her chest, or just her very loud murmur.  We're going to try and fit in one more nebulizer treatment during the day and see how the next few days go.  If she doesn't get better, or if she gets worse, we'll probably have to bring her back in by Monday to recheck her lungs.  The cat on the other hand, didn't get as positive an outlook, but we're hoping the shot works as well as last time.

So here we are again.  We have a sick cat, a sick kid, Tom's still sick and has a slowly improving back injury, and I'm just hanging out trying to figure out what to fix first and how to fix it.  I'm hoping my wine helps with that.


Monday, January 21, 2013

Life with Down Syndrome

Down Syndrome and all of it's "effects" has been lot more at the forefront of our household this past week or so.  I suppose you could say that any of this can happen to any child, and while that's true, in Tera's case it is in fact because she has Down Syndrome.  There really aren't that many days anymore when it bothers me, or even that I take the time to acknowledge the fact that life is different because of DS.  Most of the time I go through the motions of our lives and we just deal with whatever is currently going on.

Last week our schedule was even busier than usual with appointments.  Tera had speech therapy on Monday at daycare like she always does, Tuesday we had physical therapy at home, Wednesday she had a hearing test (which we do regularly to make sure her tubes are working properly and because some hearing loss can be fairly typical in kids with DS), Thursday she had occupational therapy at daycare like always, Thursday night we had to go to the orthotist to pick up her new orthotics, and then Friday we had to go to Babies R Us to pick up new shoes and socks to go with the new orthotics.  Then Saturday morning she had developmental therapy, and Sunday we went to sick call for what we believe is impending pneumonia.

I'll come back to the pneumonia in a minute, but of all the things that "affected" me this week, I think Tera getting her orthotics did it the most.  There are certain triggers Tom and I have both experienced that serve as reminders that Tera is different.  One of them is having to give her the nebulizer treatments because it reminds us of when she was in the hospital for pneumonia.  For me, this week, having to watch her with her orthotics in, was one of those reminders.  To be honest, I've been anxious for her to get them because we know it will make her a steadier, more confident walker and hopefully they will prevent a lot of long term damage to her ankles and knees.  But apparently just seeing her in them, kind of made me sad.  And again, I know there are a lot of kids that have these and I know they may not have to be forever (they might be or they might be a little different as she gets older), but in our case, it's because Tera has DS.  On the plus side, despite the slight hassle of trying to get them on an already wiggly, impatient toddler, she doesn't really seem to notice they're on and she's walking really well in them.  I'll just have to suck up my feelings and realize that it's for the best.

Now back to the pneumonia (well, not technically pneumonia yet).  Last week she woke up most mornings with a cough, but that was the end of it.  Then Friday afternoon, after picking her up from daycare, she started coughing.  And then the coughing continued at night, and into the next day and into to Saturday night. Sunday morning we had to bite the bullet and take her in to see what the doctor thought.  See there's only three other times that this cough has happened and all three times have resulted in her having pneumonia.  Fortunately the doctor on call was one that we really like and that has seen Tera numerous times (in fact she referred to her as her regular Sunday morning patient).  She listened to her lungs a few times and said that she sounded completely clear.  We're all hesitant to start her on antibiotics prematurely because she's already had to be on one so many times and we all know the time will come again soon.  So since there is no evidence of pneumonia yet (a virus of some sort yes) our only course of action is to try and increase her nebulizer treatments to try and keep her airways clear, and hope for the best.

It worked out well that I'm off today so we could keep her home one extra day and even though she sounded exactly the same last night as the previous two nights, I didn't think anything else was wrong.  Unfortunately as the morning progressed, she became tired much earlier than usual and felt mildly feverish.  she ended up going down for a nap at 10:45.

Now in an effort to try and make myself a better writer, I've been trying to keep my posts a little more focused, but today I just have to get this stuff out so I apologize for going astray here (it's also what happens when I write my posts in the middle of the day instead of that the end of the day; like today).

Tera only ended up sleeping for an hour this morning and after waking up, seemed much more herself.  I had originally planned on going to Costco today and decided since she was feeling better, we might as well journey out into the frigid air (she was heavily covered in a blanket) and get it done with.  In going along with how I started this post, DS has been front and center to me lately and so I'm not sure if this was the reason I was more conscious of the looks today or not.  Tera always gets a lot of attention when we go out.  She waves to pretty much everyone and I've never figured out (her being my first child and all) if the attention is normal, or if people know she's incredibly adorable for a reason.  But today especially, she seemed to be getting a lot more looks and almost sympathetic smiles.  I won't deny there is every chance in the world that I am overreacting and nothing was any different today than any other day and she just gets smiles because she smiles first and is so freakin' sweet and I'm being paranoid due to lack of sleep and general craziness on my part.  Whatever the actual case is, I left feeling somehow even more protective of her and just wanting to get her home and out of the world out there.

She fell asleep in the car again on the way home and while she was napping I was catching up on Facebook when I came across a story like so many others, but that of course touched me in a unique way.  I love and hate these stories because it reminds me that there are so many ignorant people that I can't protect her from, and at the same time gives me hope because I realize that even if I can't stand up for her, someone else might.  Here's the link in case you didn't see my repost on Facebook.

Then tonight we had another few ups and downs on the roller coaster that is Tera when she finally woke up from her second nap and was very clingy and lethargic.  She ate very little dinner, but as soon as we got down stairs, she was ready for our ritual dance party! She was almost completely herself until bed time when she went down at the normal time and with no struggle at all.  So we have no idea what to expect tonight.  It could be a bad night of coughing, a very bad night that results in wheezing and labored breathing, or a perfectly normal night in which she wakes up fine (I find this last scenario the least likely by the way).

Wednesday, January 16, 2013

Milestones


One of the very difficult things about having a child with DS is the milestones.  Everyone tells you that each child is different (even typical kids) and that they’ll reach all the milestones in their own time.  We’re not supposed to stress or be overly concerned about milestones, we shouldn't compare our kids to typical kids, and really not even to other kids with DS.  And yet despite all this, twice a year we sit down to discuss exactly that: milestones.  Tera has four therapists and a coordinator and twice a year we all meet to discuss which milestones she has met, which ones she hasn't met, and which ones we hope she’ll meet in the next year. 

I have read the posts from other moms who dread these meetings because it can be a summary of the things our kids aren't doing yet.  But I look forward to them.  I like knowing where Tera is currently, I like celebrating her successes which I think all of her therapists do a great job of outlining, and I like knowing what we need to work on in the coming months and year. 

Last night Tera had PT and her therapist asked us to start thinking about what we might want her goals to be for her annual review which is in February.  Honestly, we weren't sure what to say.  This would be one of those times when having a child with special needs can be incredibly informative because my guess is if you asked the parent of a typical child what the gross motor milestones were for the 2nd year, they probably wouldn't know off the top of their head.  Last year was pretty easy; crawling and walking.  This year we can check that off her list, but we need new goals for next year and now it’s not so obvious.  Gross motor skills are the one area that we've never been as concerned with.  Tera did crawl later than many typical kids, and she walked later than many typical kids, but she did both of them somewhat earlier than a lot of kids with DS; that just happens to be her area of strength. 

So today, while my students are taking their final exams, I’m researching gross motor milestones for year two in both typically developing kids and kids with DS.  We want to be prepared for her next meeting and know what goals we think are feasible and also what goals are a priority.  If skipping is on the list for things a two year old is expected to be able to do, we probably won’t worry too much about it; but we’d like her to be able to walk up and down the stairs using the railing instead of our hands.  Here are some sites I found and one that my very knowledgeable sister at the AAP was able to find for me:



The slightly more unnerving aspect of her next meeting is that one year from it, will be Tera’s exit meeting from Early Intervention and her transition meeting into Early Childhood.  Our little girl will actually be going to school (not just what I call her daycare).  It’s kind of scary to think about her being a little more out there in the world and not having the therapists that we've worked with for what will have been three years, there to know her personality and capabilities. 

Throughout the next year I will be posting more on our experience through that research and transition and at this point all I can hope is that it goes smoothly and that as her parents we will feel comfortable with the services that she qualifies for and receives.  

And maybe we should add less accident prone to her goals...

Thursday, January 10, 2013

Speech...again.

Let me start by saying Tera is doing great.  She's been walking for almost four months now, she does stairs pretty well, she's developing quite the personality (if not a tad mischievous), she seems to have a reasonable understanding of what we say to her, she's actually growing a little more regularly, and except for a few bouts of wheezing, she's relatively healthy for right now.  But still no words.

I go through phases of accepting it for what it is and celebrating all her other successes, and then I go through phases of letting it get to me more than it should like tonight.  I belong to a forum on BabyCenter.com for parents of kids with DS.  Each day I receive an email with a list of new posts in the forum.  I sometimes have more than a month's worth of emails sitting in my inbox waiting for me to find the time to read through them.  I've gotten pretty good at only reading the ones that seem pertinent and thereby saving myself some time.  Tonight I spent some time catching up on the past week and a half's worth of emails and too many of them were centered on speech.  I pretty much always read these and sometimes they make me feel better and sometimes, like tonight, not so much.

Most of the ones I read tonight were from parents whose kids are also struggling with speech, but almost every one stated that though delayed, their kids were doing and saying things that Tera isn't.  Some of them are around her age and some of them are younger.

Tera currently has about 20 signs I would say and we were pretty impressed by this.  But one mom posted that her 22 month old has almost 150 signs! I don't even know that many to teach her yet! Some parents said that their kids aren't saying any words other than "mama" and "dada" and I feel like I would jump up and down with joy if I could hear that.  I know that many of those kids may not have started walking at 19 months, but it's still very difficult for me to read.

Nobody else seems concerned and mostly I just hear that she'll get there, but it's still hard for me sometimes. I'm so incredibly proud of all her accomplishments so far and I know she'll reach this one too, but it's a fear of the unknown (is there a more serious reason behind her delay) and indescribable impatience to hear that first word (and if it's not "mama" to then hear that soon too).

Every time I get a report from one of her therapists, it includes how well Tera is doing.  She is definitely more motor-driven than language-driven and I know that oftentimes kids focus on one area at a time.  But I would't be heartbroken if she sat down for a few nights to give those legs a rest, and instead looked me in the eye and said "I love you too mommy".

Tuesday, January 1, 2013

Happy New Year!

So I just reread my New Year's Day post from last year because I wanted to remember what I had hoped for and maybe what my goals were.

In my first post (which was actually on New Year's Day) I reflected on all that had happened in 2011 (Tera's birth and diagnosis, our closest friends having kids also, and my brother-in-law's cancer diagnosis and subsequent surgery and recovery) and at the end I wrote that hopefully one year later I would be able to say our year was fairly uneventful.  And you know what? In the grand scheme of our lives, it was uneventful.  I might not have said that during each of the three times Tera had pneumonia, or the two times she had tubes put in and had to be put under, or when we had to put our sweet dog to sleep and I thought my heart would break.  I probably wouldn't have said it during many of the other stressful times we've experienced, but compared to 2011, yes it was fairly uneventful.

This past year brought a lot of happiness and wonderful memories.  We celebrated Tera's first birthday, we were able to attend the Gigi's Gala, Tom and I had a few days away with just each other, Tera learned how to crawl and walk, we took her to an apple orchard for the first time, we went to the zoo a few times, Tom and I attended our first Down Syndrome conference, and we were able to spend lots of time with friends and family.

There were also some things that I wish didn't have to happen.  We lost our beloved puppy after a year of fighting cancer and I still miss her so much.  Tera got kind of sick a lot of times and really sick a few times.

There are a lot of things I'm sure I'm forgetting but these are the big ones I can remember and just like everything else that happens, these are all things that will shape who I am and what my family is and what we can handle.  I've stated here many times before I'm not a huge fan of the idea that we're only given what we can handle because I just don't believe it's always true, but I do believe that what you choose to handle and how you choose to handle things defines who you are.  I have watched so many strong people in my life experience things no one should have to handle and it's changed them and shaped them and that's all that I strive to accomplish with my experiences.

In the next year there will be incredibly joyous and amazing things that will happen to us and there will be things that will make us sad and upset and worried.  Like most people I hope that the joyous and amazing things far outweigh the sad, upsetting, and worrisome things, but we'll see what happens.  One year from now I hope I can have the same outlook I do today after last year.